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Effective HIV_AIDS and Reproductive Health Information to People

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					                   University of Malawi
                 Center for Social Research




Effective HIV/AIDS and Reproductive Health
    Information to People with Disabilities
                       A Final Report

                             By

         Alister Munthali, Peter Mvula and Sandra Ali




                        October, 2004
TABLE OF CONTENTS


ACKNOWLEDGEMENT ............................................................................................................V

ABBREVIATIONS ..................................................................................................................... VI

EXECUTIVE SUMMARY ....................................................................................................... VII

1. INTRODUCTION ..................................................................................................................... 1

2.0 OBJECTIVES OF THE STUDY .......................................................................................... 3

3.0 METHODOLOGY .................................................................................................................. 4

3.1 DATA COLLECTION METHODS ................................................................................................ 4
3.1.1 THE HOUSEHOLD QUESTIONNAIRE.......................................................................................... 4
3.1.2 FOCUS GROUP DISCUSSIONS ................................................................................................... 6
3.2 DATA ANALYSIS ........................................................................................................................ 6

4. HOUSEHOLD CHARACTERISTICS ................................................................................... 6

4.1 SEX OF THE HEAD OF THE HOUSEHOLD ................................................................................. 7
4.2 OCCUPATION OF THE HEAD OF THE HOUSEHOLD ................................................................. 8
4.3 EDUCATION OF THE HEAD OF HOUSEHOLD AND RESPONDENTS ........................................ 10
4.3.1. LITERACY LEVELS.................................................................................................................. 12

5. TYPES AND CAUSES OF DISABILITY ............................................................................. 14

5.1 CAUSES OF DISABILITY .......................................................................................................... 14
5.1.1 VISUAL IMPAIRMENT .............................................................................................................. 17
5.1.2 PHYSICAL DISABILITIES RESULTING IN MOBILITY PROBLEMS.................................................... 19
5.1.3 HEARING IMPAIRMENTS .......................................................................................................... 20
5.1.3 MENTAL ILLNESS .................................................................................................................... 21
5.1.4 ALBINISM ............................................................................................................................... 21
5.2 TREATMENT FOR DISABILITY ................................................................................................ 22

6. PROBLEMS FACED BY PEOPLE WITH DISABILITIES .............................................. 23

6.1 PEOPLE WITH DISABILITIES AND EDUCATION ...................................................................... 23
6.2 PEOPLE WITH DISABILITIES AND EMPLOYMENT .................................................................. 25
6.3 PEOPLE WITH DISABILITIES AND TRAVELING ...................................................................... 26
6.4 OTHER PROBLEMS.................................................................................................................. 26
6.7 PERCEPTIONS OF PEOPLE WITH DISABILITIES AS A PROBLEM ............................................ 28



                                                                       ii
7. CHANNELS OF COMMUNICATION................................................................................. 31

8.0 KNOWLEDGE ABOUT HIV/AIDS.................................................................................... 36

8.1 SOURCES OF INFORMATION ON HIV/AIDS ............................................................... 43

8.2 PRESENCE OF HIV/AIDS EDUCATION ACTIVITIES IN THE COMMUNITIES .. 52

8.3 TRANSMISSION OF HIV/AIDS ............................................................................................... 54
8.4 DISABILITY AND RISK OF HIV/AIDS .................................................................................... 58
8.5 CULTURAL BELIEFS/PRACTICES ........................................................................................... 59
8.6 PREVENTION OF HIV TRANSMISSION ................................................................................... 59
8.7 KNOWLEDGE OF PEOPLE WITH DISABILITIES HAVING AIDS OR HAVING DIED OF AIDS . 60
8.8 CARE OF PEOPLE WHO ARE CHRONICALLY ILL ................................................................... 62
8.9 VOLUNTARY COUNSELING AND TESTING .............................................................................. 62

9.0 SEXUAL AND REPRODUCTIVE HEALTH .................................................................... 64

9.1 SEXUAL INTERCOURSE ENCOUNTERS................................................................................... 64

9.2 FIRST SEXUAL ENCOUNTERS ................................................................................................. 66
9.3 PAST AND CURRENT RELATIONSHIP STATUS ………………………………65

9.4 KNOWLEDGE ABOUT CONDOMS AND CONDOM USE ........................................... 71

9.4.1 KNOWLEDGE ABOUT CONDOMS ............................................................................................. 71
9.4.2 CONDOM USE ........................................................................................................................ 72
9.4.3 FREQUENCY IN CONDOM USE ................................................................................................ 74
9.4.4. DIFFICULTIES IN USING CONDOMS ....................................................................................... 74
9.4.5 ACCESS AND SOURCES ........................................................................................................... 75
9.4.7 SEXUALLY TRANSMITTED INFECTIONS (STIS).......................................................................... 77

10.0 KNOWLEDGE AND USE OF FAMILY PLANNING.................................................... 83

10.1 USE OF FAMILY PLANNING METHODS ................................................................................ 83
10.2 SOURCES OF INFORMATION ON FAMILY PLANNING METHODS ........................................ 84
10.3 PREGNANCY AND RELATED ISSUES ..................................................................................... 87
10.4 PLACE OF DELIVERY ............................................................................................................ 93
10.5 ISSUES OF CHILD CARE FOR PEOPLE WITH DISABILITIES .................................................. 95
10.6 FEARS CONCERNING SEXUAL REPRODUCTIVE HEALTH .................................................. 97

11.0 CONCLUSIONS AND RECOMMENDATIONS ............................................................ 97

REFERENCES .......................................................................................................................... 102




                                                                    iii
APPENDIX 1: ACCESS TO DRAMA .................................................................................... 103

APPENDIX 2: ACCESS TO PICTURES ............................................................................... 104

APPENDIX 3: ACCESS TO PRINT MEDIA ........................................................................ 105

APPENDIX 4: HOW RESPONDENTS KNEW ABOUT HIV/AIDS .................................. 107

APPENDIX 5: SOURCE OF INFORMATION ABOUT THESE DISEASES ................... 109

APPENDIX 6: WHAT SOURCE OF INFORMATION ON SEXUALLY TRANSMITTED
DISEASE WOULD YOU PREFER TO USE ......................................................................... 111

APPENDIX 7: DATA COLLECTION INSTRUMENTS ..................................................... 115




                                                        iv
Acknowledgement

This report would not have been produced without the involvement of many people. We
would first of all like to thank the management of the Federation of Disability
Organisations in Malawi (FEDOMA) for conceptualizing this study and entrusting the
Centre for Social Research to conduct it. In particular, we appreciate all the assistance
and support that we got from Mr. Mussa Chiwaula, the Executive Director of the
FEDOMA and Mr. Dan Dunga, FEDOMA‟s accountant. We are also very grateful to
Rachel Prackett and other stakeholders who participated in the development of the
instruments that were used in this study.


We would also like to thank our respondents for sparing their time to respond to our
questions. Our research team, which comprised of Titus Ntonyo, Pamela Chipungu,
Maria Phalula, Lynes Manduwa, Malizgani Gondwe, Philip Lapozo, Andrew Kachale,
Agnes Matiki, Francis Kamungu and Hays Mitha, worked very hard in the field
collecting data and their role in this regard is highly appreciated.




Alister C. Munthali, Peter Mvula and Sandra Mapemba.
September, 2004, Zomba




                                              v
Abbreviations

AIDS        Acquired Immune Deficiency Syndrome
ARVs        Anti Retro-Virals
BLM         Banja La Mtsogolo
CIDA        Canadian International Development Agency
DHS         Demographic and Health Survey
EAs         Enumeration Areas
FEDOMA      Federation of Disability Organisations in Malawi
FGD         Focus Group Discussion
HIV         Human Immuno-Virus
IEC         Information, Education and Communication
MKAPH       Malawi Knowledge, Attitudes, Practices in Health
NAC         National AIDS Commission
NGO         Non-Governmental Organisation
NSO         National Statistical Office
STI         Sexually Transmitted Infection
TA          Traditional Authority
TBA         Traditional Birth Attendant
VCT         Voluntary Counselling and Testing




                                       vi
EXECUTIVE SUMMARY

Introduction:

      This study was designed to explore and understand the sexual and reproductive
       health needs and experiences of people with disabilities, their perceptions about
       HIV/AIDS and how best information on HIV/AIDS can be communicated to
       people with various forms of disabilities. The study was conducted in 5 districts
       namely Mzimba, Ntchisi, Ntcheu, Zomba and Chikwawa and the choice of the
       districts was done to capture the cultural diversity prevailing in Malawi.

      A total of 341 people were interviewed together with their close family members.
       While the majority of the respondents had physical disabilities, there were also
       some who had hearing, speech and visual impairments. A total of 20 FGDs, 4 in
       each district, were conducted with people with disabilities and people without
       disabilities.

Findings:

Channels of communication

      Ninety eight percent of the respondents said that they communicated with others
       through speech because they were able to talk and hear while approximately 2
       percent said that they used sign language and this was mainly because they had
       hearing and speech problems. Ninety four percent of the respondents said that it
       was easy to communicate with others while the rest said that it was not. For those
       who said that it was not easy, they explained that it was mainly because they had
       hearing and speech problems.

      Radio, television, drama, posters, print and electronic media etc constitute some
       of the very common ways of communicating messages of HIV/AIDS. The study
       showed that approximately 84% of the respondents had access to the radio and
       this was mainly those respondents with physical impairments, 5.9% had access to
       television, 45.2% to drama, 44% to posters, 27.9% to the print media.

Knowledge about HIV/AIDS

      The study has shown that 76% of the persons with disabilities interviewed had
       had sex and 83% of these had the first sexual encounter out of choice while 17%
       were forced. The age of first sexual encounter ranged from 15 to 27 years. While
       this was the case, some people with disabilities said that they had difficulties
       entering into an intimate relationship due to stigma and difficulties in mobility as
       it decreases the opportunity to meet new people.

      Since people with disabilities also have sex, they are therefore also at risk of
       contracting HIV. Asked if they have heard about HIV and AIDS, 87% of


                                           vii
       respondents said that they had heard about HIV while 94% had heard about
       AIDS. Generally, this study has shown that knowledge about AIDS among people
       with disabilities is basic. Approximately 36% of the respondents mentioned that
       HIV is AIDS and that 42.5% said that they would be able to tell if one has AIDS
       just by looking at widely heard signs and symptoms of the disease. On
       transmission of HIV, while the majority said that it was transmitted through sex
       without a condom, there were also some misconceptions about this with others
       saying that sex with a condom, mosquitoes, eating with an HIV+ person can
       transmit HIV. The mother to child transmission of HIV was only mentioned by
       61.5% of the respondents. The major methods of preventing the transmission of
       HIV which were mentioned included abstinence (40%), use of condoms (31.6%)
       and avoiding multiple partners (14%).

      Fifty five person of the respondents said that there was no possibility for them to
       contract HIV because of a number of reasons including not having had sex before,
       faithfulness and that they make use of condoms. Approximately 90% said that
       their disability did not put them at risk of contracting HIV. During the FGDs it
       was mentioned that people with hearing and visual impairments were at risk of
       contracting HIV as they may not know much about AIDS. In Ntcheu and Ntchisi,
       it was mentioned that there exist a belief that if one who has HIV has sex with a
       person with a disability, he or she will be cured.

      The majority of respondents talked about customs that affect the general
       population such as wife inheritance, initiation ceremonies and widow cleansing as
       factors that enhance the transmission of HIV.

Sources of information about HIV/AIDS

      Most of the respondents first heard about HIV/AIDS through the radio and this
       was followed by health facilities and friends. The other sources of information
       included teachers, peer groups, religious leaders and NGOs.

      Only one person had heard about AIDS from sign language.

      People who were visually impaired never heard about HIV/AIDS through printed
       material.

      A number of problems were mentioned by people with disabilities in accessing
       information on HIV/AIDS and these included the lack of radios, the need for
       someone to read especially for the visually impaired, lack of outreach
       programmes, the lack of materials, long distances to health facilities and mobility
       problems.




                                           viii
Knowledge about voluntary counseling and testing

      Seventy percent of the respondents were aware of VCT and 70% of those who
       knew about VCT also knew where they could get VCT. Only 10% of the
       respondents had gone for VCT and reasons for not going for an HIV test included
       thinking that they were okay, fearing that blood will be pumped from their bodies,
       mobility problems to reach the facilities and lack of transport. Those who had
       gone for the HIV test did so because they were either prompted by illness or they
       had the desire to know.

Knowledge about condoms

      Approximately 82% of the respondents knew what a condom was but of these
       only 42% reported knowing how to use a condom.

      Twenty seven percent of the respondents had used condoms while 72.8% had not.

      Eight-eight percent of those who knew what a condom knew where to buy
       condoms.

      The major reasons for low condom use included never having had sex before, not
       liking the condoms, not promiscuous and always being with the spouse.

      Twenty three percent of the persons with disabilities said that they had difficulties
       using condoms because of their disability due to weak hands and arms and that
       the visually impaired cannot see the expiry date. Hence the need for partners to
       assist.

Awareness about sexually transmitted diseases

      Most of the respondents (93%) said that they were aware of STIs while 7% were
       not.

      The common STIs which were mentioned were AIDS, syphilis, gonorrhoea and
       buboes.

      The radio was mentioned as the main source of information on STIs and other
       sources included health facilities, friends, teachers, peer groups etc.

      Approximately 3% admitted to have contracted an STI. Of those who had
       contracted an STI, 83.3% sought treatment while the rest did not. The majority
       sought treatment from health facilities. Fifty percent of those who had contracted
       an STI believed that they could have avoided it by using condoms had they been
       available while the other fifty percent said they could not have prevented it due to
       ignorance, absence of condoms and being forced to have sex.



                                            ix
Family planning

      Twenty eight percent of the respondents said that they used family planning and
       the common methods were condoms, the injection and some traditional methods.

      A number of reasons were given for non-use of family planning and these
       included never having had sex before, taking time to get pregnant, refusal by the
       husbands, partner being away and having heard that use of family planning
       methods being associated with side effects.

      Some respondents had difficulties accessing information on family planning
       because they did not have a radio, they were disabled, that the hospital was
       situated too far and that there was noone to escort them.

      The study also found that the majority of the respondents (67%) with disabilities
       gave birth in a health facility, 29% at home while the rest (4%) with the assistance
       of a traditional birth attendant.

Conclusions

      This study has reveled that 76% of the respondents were or have been sexually
       active.

      General awareness about HIV/AIDS is high but knowledge is low, hence people
       with disabilities are vulnerable to contracting HIV.

      Most people with disabilities learnt about HIV/AIDS and STIs through the radio
       or health facilities which suggests that these are good channels of communication.
       Despite popularity of these channels, some people with disabilities do not have
       radios and for those with hearing impairments the radio is an impossible means of
       communication.

      Stigma and negative attitudes towards people with disabilities evident from study.

      Information on beliefs about disability and AIDS has not come out very strongly
       from this study.

      Study has highlighted general disability issues regarding access to information on
       AIDS.

      Need for further research to examine more specific disability questions especially
       on communication methods.




                                            x
Recommendations

•Further research to explore communication needs of people with specific types of
disability.

•Stakeholders need to include the needs of persons with disabilities in their
organisational policies and strategies.

•Stakeholders working in HIV/AIDS need to market their activities and encourage active
participation of people with disabilities.

•The need to provide more information to people with disabilities especially in the areas
of transmission, prevention and condom use.

•There is need for outreach programmes targeting the people with disabilities.

•A variety of techniques are needed to effectively communicate with persons of different
types of disabilities.

•Strengthen partnerships between stakeholders in HIV/AIDS work and the disability
sector.

•Advocacy and awareness on disability issues is needed to change negative attitudes and
promote the rights of people with disabilities.




                                             xi
1. INTRODUCTION

The first case of AIDS was diagnosed in Malawi in 1985, and a total of 17 cases were
reported throughout the country in that year alone. Since the first case of AIDS was
diagnosed, the prevalence of HIV and deaths from HIV/AIDS and related illnesses have
been rising steadily. In the early 1980s, HIV prevalence rates among pregnant women
attending antenatal clinics was at 2 percent and this rose to an estimated 35 percent in 2000
(Kalipeni, 2001). As of 2003, about 760,000 Malawian adults were living with HIV/AIDS,
representing a national prevalence of 14.4% among those aged 15-49 years. The National
AIDS Commission further reports that, thus far, approximately 641,000 Malawians have
died of HIV/AIDS related illnesses since the first case was diagnosed in 1985 (National
AIDS Commission, 2003). With such statistics, Malawi is considered to be one of the
countries in the world which is most affected by the HIV/AIDS pandemic.


The HIV/AIDS pandemic has impacted negatively on Malawi, for example, life
expectancy has dropped to less than 40 years; the dependency ratio has increased from
1.01 to 1.3 (National Economic Council, 2000), and that the number of orphans due to
AIDS has increased tremendously. Unlike other diseases which have plagued the country
in the past, the problem with HIV/AIDS is that it is claiming the lives of young and
economically productive men and women leaving behind orphans and the elderly. The
death of these young men and women deprives the industry of the human resource that it
needs, and which subsequently drives Malawi‟s economy.


The sustenance of the economic development that Malawi has achieved thus far depends
on the good health status of its citizens and this explains why Government of Malawi, in
conjunction with the donor and the international community, is implementing
intervention programmes that aim to protect Malawians against contracting HIV. Over
the years, a number of strategies have been implemented by government and donor
agencies to ensure that Malawians know the modes of transmission and prevention of
HIV/AIDS. The introduction of AIDS education in school curricula, the formation of out-
of-school and in-school AIDS youth clubs, the promotion of the prevention of mother-to-
child transmission of HIV and voluntary counseling and testing and radio, TV and print
advertising are some of the initiatives that Government, with support from the donor
agencies, has put in place to prevent HIV infection. Because of the intensive information,
education and communication (IEC) activities conducted over the years, knowledge
about HIV/AIDS in the general population is very high. The Demographic and Health
Survey conducted in 2000 by the National Statistical Office revealed that 99% of the
women and almost 100% of the men sampled reported that they had ever heard about
HIV/AIDS (National Statistical Office, 2001). While it is acknowledged and recognized
that knowledge about HIV/AIDS in the general population is very high, no studies have
been done in Malawi to determine knowledge levels about HIV/AIDS among people with
disabilities.


While a lot of information, education and communication activities are taking place in the
country, aiming at informing Malawians about HIV/AIDS so that they can make
informed and appropriate decisions about the pandemic, access to information on
HIV/AIDS by people with disabilities seems to be very limited. People with visual
impairments cannot access printed and other related information materials, people with
hearing impairments can hardly access information on radios and other oral messages and
that people with physical disabilities fail to access information and education due to
physical barriers, among other things.


In addition to this, not much is really known about the reproductive health needs and
experiences of people with disabilities in Malawi. The lack of access to sufficient sex
education to protect themselves and ignorance about sexuality issues constitute some of
the factors that place people with disabilities at high risk of sexual abuse and
consequently, HIV infection. The existence of myths such as that if people with HIV
have sex with virgins, they can get cured of their infection has generally given rise to
incidences of raping of children and adults, those with disabilities being more vulnerable.
According to the Federation of Disability Organisations in Malawi (FEDOMA), there are
also some claims and beliefs within the Malawian communities that if HIV+ people have
sex with people with disabilities, they will be cured of their infection. While such claims



                                            2
exist, the problem however is that the extent to which such beliefs are held is not known.


This study, commissioned by the Federation of Disability Organisations in Malawi and
funded by the Canadian International Development Agency (CIDA), was therefore
designed to explore and understand the sexual and reproductive health needs and
experiences of people with disabilities, their perceptions about HIV/AIDS and how best
information on HIV/AIDS can be communicated to people with various forms of
disabilities.


2.0 OBJECTIVES OF THE STUDY

The major objectives of this study were as follows:


           To describe the major forms of disabilities existing among the sampled
            population.


           To explore how people with disabilities communicate with other people and
            amongst themselves.


           To determine knowledge about HIV/AIDS among people with disabilities.


           To describe perceptions of people with disabilities about the transmission and
            prevention of HIV/AIDS.


           To determine knowledge and perceptions of people with disabilities regarding
            family planning, condom and condom use.


           To explore experiences of people with disabilities regarding sexual and
            reproductive health issues.




                                            3
          To make recommendation on how best information on HIV/AIDS can be
           communicated to people with disabilities.


3.0 METHODOLOGY

This study was conducted in five districts namely Mzimba in the Northern Region,
Ntchisi and Ntcheu in the Central Region and Zomba and Chikwawa in the Southern
Region. The study was conducted over a period of 24 days in November 2003. The
districts were chosen to represent the cultural diversity existing in Malawi. It would have
been better if this study covered more districts but this was not possible because of
budgetary constraints.


Two methods of data collection were used in this study, namely focus group discussions
and the administration of the household questionnaire.


3.1 Data Collection methods


3.1.1 The household questionnaire

From the results of this study as shall be seen later, it is clear that the information
solicited from respondents addressed a number of indicators and each indicator has its
own proportion of people with disabilities who responded in a particular manner. In order
to derive the proportion estimate of all the indicators within a given absolute margin of
error (level of precision), a decision was made to calculate sample size based on the
largest variance that a proportion can have at a given level of precision. Utilizing the
formula for calculating sample size and using a margin of error of plus or minus 4% at
the 95% level of confidence, a sample of 480 persons was derived.


In each of the 5 districts, 4 enumeration areas were randomly chosen and 24 people with
disabilities were supposed to be interviewed. Upon arrival in each enumeration area,
household listing was done in order to find out the number of people with disabilities in
that particular enumeration area. While the study sample was 480 persons with


                                            4
disabilities, household listing revealed that in most of the enumeration areas, the number
of people with disabilities was much lower than 24, being as low as 11 in one of the
EAs. This was also because emphasis was placed on persons with disabilities within child
bearing age. Hence, men and women aged 50+ years were excluded from this study. A
total of 341 people with disabilities were interviewed in the 5 districts. In addition to
administering questionnaires to people with disabilities, short interviews were also
conducted with close family members to people with disabilities and these were aimed at
soliciting information on, among other things, how they communicate with people with
disabilities. Table 3.1 below shows the people with disabilities who were interviewed and
the type of disability that they had.


Table 3.1 People with different forms of disabilities interviewed


Type of disability Frequency Percent
Differences in leg length and other dimensions 23 6.7
Paralyzed legs 109 32.0
Epilepsy 33 9.7
Hunchback 8 2.3
Leprosy 1 .3
Differences in arms length 1 .3
Paralyzed arms 32 9.4
Hearing problems 10 2.9
Speech problems 13 3.8
Total blindness 14 4.1
One eye blind 46 13.5
Albino 6 1.8
Feet abnormalities 19 5.6
Mental disorder 3 .9
Goitre 1 .3
Nose problems 1 .3
General eye problems 9 2.6
Deformed mouth 2 .6
Hip problems 1 .3



                                            5
Limb missing 2 .6
Other        7 2.1
Total 341 100.0


Out of the 341 respondents, 219 (64.2%) were males while the rest (122, 35.8%) were
females. As explained above the selection of respondents to the household questionnaire
was done randomly and, in that process, as can be seen from Table 3.1 above, more males
and people with physical disabilities were selected to be interviewed. Only 60 (17.6%)
persons with disability had visual impairment, 10 (2.9%) had hearing impairments, 6
(1.8%) were albinos and 13 (3.8%) had speech problems. It would have been better to
include more people with visual and hearing impairments but the selection was random
and on the other hand the study has also shown that there are more people out there who
have physical impairments than any other form of disability.


3.1.2 Focus group discussions

Focus group discussions were conducted with men and women from the community as
well as with people with disabilities. These FGDs were mainly conducted to explore
people‟s perceptions about specific issues such as beliefs about disability, transmission
and prevention of HIV/AIDS, access to information and condom use among other things.
In total 20 FGDs were conducted, 4 in each district and half of these FGDs were
conducted with people with disabilities.

3.2 Data analysis

Qualitative data was analysed through content analysis and emerging major themes were
identified while all the data collected through the administration of the household
questionnaire was analysed using Statistical Packages for the Social Sciences (SPSS)
software.


4. HOUSEHOLD CHARACTERISTICS




                                            6
This section looks at basic household characteristics that could help to explain the
situation or conditions of people living with disabilities. Here we look at the sex of the
household head, age distribution of the population and occupation of the head of the
household.


4.1 Sex of the Head of the Household


Table 4.1 shows the sex distribution of the heads of the households from which the
respondents to the household questionnaire came from. Overall, 22.8 per cent of the
sampled households were headed by females and 77.2 per cent were headed by males.
There is little variation at district level with Zomba (33.9 per cent) registering the highest
proportion of female headed households and Chikwawa (18.6 per cent) registering the
lowest as can be seen from Table 4.1 below.


Table 4.1. Sex of Household head by District


                                           SEX                        TOTAL
   DISTRICT


                             Male                     Female
                        N                        N                  N
Mzimba                  69          78.4         19        21.6     87       100.0
Ntchisi                 67          80.7         16        19.3     83       100.0
Ntcheu                  34          75.6         11        24.4     45       100.0
Zomba                   37          66.1         19        33.9     56       100.0
Chikwawa                57          81.4         13        18.6     70       100.0
 Total                 264          77.2         78        22.8    341       100.0


This is not very different from the results of the 2000 Demographic and Health Survey
which revealed that 26.6% of the households sampled were headed by women while
73.4% were male headed households (National Statistical Office, 2001). The housing and
population census conducted earlier in 1998 showed that of the 2.3 million households
enumerated about 69% were headed by males (National Statistical Office, 2000).


                                                 7
4.2 Occupation of the Head of the Household

The majority of the household heads (50.4 per cent) were farmers (Table 4.2). Out of
this, 27.1% were commercial farmers while 23.3% were smallholder farmers. This was
followed by those that were family business workers (14.5 per cent), unemployed (14.2
per cent), salaried employees (10.9 per cent), self-employed (4.4 per cent) and those that
were doing nothing but dependent on others (3.2 per cent). As was the case with the sex
of the household head, here too, there are variations across districts as can be seen from
Table 4.2 below.


It is apparent from this discussion that approximately 50.0% of the heads of households
were engaged in farming for subsistence as well as commercial purposes. The fact that
the majority of the heads of households were farmers is not surprising because, in the
absence of a thriving industrial base, agriculture constitutes a major source of income and
food.




                                            8
Table 4. 2. Occupation of Household Head by District


                                                                 District
     Occupation                                                                                                Total
                            Mzimba            Ntchisi           Ntcheu            Zomba        Chikwawa
                         N        %      N           %     N           %     N          %     N        %      N      %
Salaried employee        12     13.6      2          2.4    7         15.9    4         7.1   12      17.6    37    10.9
Family business worker    9     10.2      6          7.2    7         15.9   11        19.6   16      23.5    49    14.5
Commercial farmer        26     29.5     33         39.8    7         15.9   15        26.8   11      16.2    92    27.1
Smallholder farmer       18     20.5     29         34.9    8         18.2    9        16.1   15      22.1    79    23.3
Student/school pupil      -       -       -           -     -           -     2         3.6    -        -      2      .6
Unemployed               18     20.5     13         15.7   10         22.7    2         3.6    5       7.4    48    14.2
Dependent                 1      1.1      -           -     1          2.3    4         7.1    5       7.4    11     3.2
Self employed             1      1.1      -           -     2          4.5    9        16.1    3       4.4    15     4.4
Other                     3      3.4      -           -     2          4.5    -          -     1       1.5     6     1.8
Total                    88    100.0     83        100.0   44        100.0   56       100.0   68     100.0   339   100.0




                                                           9
4.3 Education of the Head of Household and respondents


It can be seen from Table 4.3 below that 51.0% of the male heads of the households went
as far as junior primary school. As far as males were concerned, this was followed by
those who went up to senior primary school. The majority of female heads of households
(44.4%) went as far as senior primary school and this was followed by those who went to
junior primary school (33.3%). The number of heads of households who did not go to
school was excluded from this analysis.

Table 4.3: Highest level of Education of Head by Sex by District


                           HIGHEST LEVEL OF EDUCATION
 SEX     DISTRICT       Junior   Senior   Junior     Senior                    Total
                       Primary Primary Secondary Secondary
                       N    %   N    %  N      %   N      %                  N     %
         Mzimba         7 18.9 16 43.2   7    18.9  7    18.9                37   100.0
 Male    Ntchisi       28 63.6 12 27.3   1     2.3  3     6.8                44   100.0
         Ntcheu        16 59.3 8 29.6    1     3.7  2     7.4                27   100.0
         Zomba          9 42.9 8 38.1    2     9.5  2     9.5                21   100.0
         Chikwawa      20 71.4 7 25.0    1     3.6  -      -                 28   100.0
TOTAL                  80 51.0 51 32.5 12      7.6 14     8.9               157   100.0

       Mzimba           2    28.6    3    42.9   2    28.6     -      -      7    100.0
       Ntchisi          3    25.0    6    50.0   2    16.7     1     8.3    12    100.0
Female Ntcheu           3    60.0    1    20.0   -     -       1    20.0     5    100.0
       Zomba            1    14.3    5    71.4   -     -       1    14.3     7    100.0
       Chikwawa         3    60.0    1    20.0   1    20.0     -      -      5    100.0
TOTAL                  12    33.3   16    44.4   5    13.9     3     8.3    36    100.0

Although the sample sizes are small, it can be seen from Table 4.3 that a higher
proportion of female heads of households went as far as senior primary school and junior
secondary school compared to male heads of households. On the higher hand, a slightly
higher proportion of male heads of households attended senior secondary school
compared to female heads of households.




                                           10
The other issue that was looked into in this study was school attendance among the
respondents to the household questionnaire. Table 4.4 shows that of the males with
disabilities who were interviewed in this survey, 79.8 per cent had ever at one point or
another attended school, whilst amongst the females, the proportion is slightly lower at
76.7 per cent.


Table 4.4: Ever attended school by Sex by District

Ever        attended Sex of Respondent                                Total
school?                 Male                     Female
Yes                     174 (79.8%)              92 (76.7%)           266 (78.7%)
No                      44 (20.2%)               28 (23.3%)           72 (21.3%)
Total                   218 (100%)               120 (100.0%)         338 (100.0%)


At national level, the 2000 DHS found that 27.0% of the women interviewed and 10.4%
of the males interviewed had not gone to school. The proportion of males with disabilities
who were interviewed and who never attended school is therefore higher than in the
general population. As far as this study is concerned, there were no marked differences in
terms of the proportion of women with disabilities who had never attended school and
that in the general population as determined by the DHS of 2000.


This study also revealed that overall 16.7% (44 and of these 36 (20.8%) were males while
the rest (8, 8.8%) were females) of the respondents who had ever attended school were at
the time of the study still attending school.

For those that did not attend school among the male respondents, reasons for doing so
varied from disability (35.4 per cent), lack of money (29.2per cent), lack of interest (20.8
per cent) and inaccessibility to school (2.1per cent). Among the women, not enough
money (26.7 per cent) was highest proportion, followed by lack of interest (23.3%), then
disability (20.0 per cent) and illness (6.7% per cent) and schools not being accessible
(6.7%).



                                                11
Those that had left school as well had their own reasons for doing so. Amongst the males,
44.4 per cent had dropped out of school due to lack of money, 14.8 per cent due to lack of
interest, 21.5 per cent because of the disability, 3.0 per cent because of illness and 2.2 per
cent because school was not accessible. Amongst the females, lack of money (47.1 per
cent) accounted for the largest drop out followed by lack of interest (18.8%) and then
disability (15.3 per cent), illness (4.7 per cent), inaccessibility of the school (2.4 per cent)
and pregnancy (0.9 per cent).


Investigations as to the type of disability that forced people to drop out of school revealed
that there were a range of them but the most common ones were leg paralysis and
epilepsy.


4.3.1. Literacy Levels

Table 4.7 shows the literacy status of those interviewed by their sex. Of the respondents
among the males, 54.1 per cent of the sample were able to read and write and among the
females the proportion of those able to read and write was 46.8 per cent. Across districts,
literacy levels were highest, in Mzimba (69.8 per cent) and lowest in Chikwawa (35.9 per
cent) among males. Amongst females, the highest was Ntcheu (55.6 per cent) and lowest
Chikwawa (22.2 per cent).




                                              12
Table 4.7. Can you read by Sex by District

                                                  Can you read
 SEX      DISTRICT                  Yes                 No                TOTAL
                               N           %        N        %           N     %
          Mzimba               44         69.8      19      30.2         63   100.0
 Male     Ntchisi              25         41.0      36      59.0         61   100.0
          Ntcheu               18         58.1      13      41.9         31   100.0
          Zomba                19         67.9       9      32.1         28   100.0
          Chikwawa             14         35.9      25      64.1         39   100.0
TOTAL                         120         54.1     102      45.9        222   100.0

       Mzimba                  8          53.3        7       46.7       15      100.0
       Ntchisi                 7          43.8        9       56.3       16      100.0
Female Ntcheu                  5          55.6        4       44.4        9      100.0
       Zomba                   7          53.8        6       46.2       13      100.0
       Chikwawa                2          22.2        7       77.8        9      100.0
TOTAL                         29          46.8       33       53.2       62      100.0


Table 4.8 indicates that 48.6 per cent of males and 47.5 per cent of the females were able
to write a simple letter.


Table 4.8: Can Write a simple letter by Sex by District

                                          Can write simple letter
 SEX      DISTRICT                Yes                No                   TOTAL
                               N       %         N        %              N     %
          Mzimba               42     66.7      21       33.3            63   100.0
 Male     Ntchisi              20     32.8      41       67.2            61   100.0
          Ntcheu               16     51.6      15       48.4            31   100.0
          Zomba                17     63.0      10       37.0            27   100.0
          Chikwawa             13     32.5      27       67.5            40   100.0
TOTAL                         108     48.6     114       51.4           222   100.0

       Mzimba                  7          46.7        8       53.3      15      100.0
       Ntchisi                 8          50.0        8       50.0      16      100.0
Female Ntcheu                  4          44.4        5       55.6       9      100.0
       Zomba                   7          58.3        5       41.7      12      100.0
       Chikwawa                3          33.3        6       66.7       9      100.0
TOTAL                         29          47.5       32       52.5      61      100.0




                                            13
These results show that literacy level among men is higher than among females and that
more men can write a simple letter than females. It has been shown earlier in this section
that 54.1% of the male respondents and 46.8% of the female respondents were able to
read and write. At national level, the 1998 census found that 64.0% of the males and
51.0% of the females were able to read and write (National Statistical Office, 2000). This
shows that literacy levels among people with disabilities are lower that in the general
population.


5. TYPES AND CAUSES OF DISABILITY


During the survey, the study teams came across many forms of disabilities. Among the
men, the most common form of disability was paralysis in the legs (31.0 per cent),
followed by epilepsy (11.1 per cent), arm paralysis (10.6 per cent), difference in leg
height or width (6.2 per cent) and visual impairment in one eye (5.3 per cent). Amongst
the females, though, the most commonly reported form of disability was leg paralysis
(31.3 per cent), followed by difference in leg width or length (9.4 per cent), epilepsy (9.4
per cent), feet abnormalities (9.4 per cent), speech problems (7.8 per cent), arm paralysis
(4.7 per cent) and hearing problems (1.6 per cent). There are variations across districts
though. For instance, while the incidence of hunch back was reported among men in
Mzimba and Ntcheu, no such incidents for females are reported in the same districts.
There were, however, such incidents reported in Zomba and Chikwawa amongst females.

During the focus group discussions, participants also mentioned the same type of
disabilities as mentioned above. However, in addition to these forms of disability, in
some districts such as Ntcheu, participants in a focus group discussion mentioned
albinism as a form of disability. This did not come out in any other FGD.


5.1 Causes of Disability

Among other issues, this study also aimed at finding out what people thought were the
causes of different forms of disabilities prevalent in their communities. From the results
of the household survey, it was found out that the leading causes of disability among the


                                            14
males was illness (55.3 per cent), followed by road accidents (16.4 per cent), born with it
(13.7 per cent), witchcraft (4.0 per cent) and 7.1 per cent had no idea as to the cause of
their disability. Among the females, 64.1 per cent got disabled through illness, 14.1 per
cent, road accident, another 14.1 per cent were disabled from birth and 3.1 per cent had
no idea as to the cause of their condition (see Table 5.1 below). Although other causes of
disabilities were mentioned, it seemed that illness and road accidents were the major
causes of disabilities in this sample.

During the FGDs with people with disabilities, the discussion centred on, among other
things, the types of disabilities that were most prevalent in their areas and what they
thought were the causes of these disabilities. In this section, the causes of the different
forms of disabilities, as discussed with participants in FGDs, are highlighted:




                                            15
Table 5.1 Causes of Disability by Sex by District


                                                                    District
 Causes of Disability                                                                                           Total
                           Mzimba               Ntchisi            Ntcheu            Zomba       Chikwawa
                          N     %          N              %   N             %   N            %   N      %     N         %
        MALE
Old Age                   -        -        -           -      -           -     -          -     1     2.4     1     0.4
Road Accident            12      19.0      14         23.0     2          6.3    5        17.2    4     9.8    37    16.4
Illness                  37      58.7      33         54.1    15         46.9   16        55.2   24    58.5   125    55.3
Witchcraft                2       3.2       2          3.3     2          6.3    1         3.4    2     4.9     9     4.0
From birth                6       9.5       7         11.5     8         25.0    6        20.7    4     9.8    31    13.7
Don‟t know                5       7.9       5          8.2     4         12.5    1         3.4    1     2.4    16     7.1
Other                     1       1.6       -           -      1          3.1    -          -     5    12.2     7     3.1
        Total            63     100.0      61        100.0    32        100.0   29       100.0   41   100.0   226   100.0

       FEMALE
Old age                   -        -        -          -      -           -      -          -    -      -      -       -
Road Accident             1       6.7       4         25.0    1          11.1    2        13.3   1     11.1    9     14.1
Illness                  12      80.0       9         56.3    4          44.4   10        66.7   6     66.7   41     64.1
Witchcraft                -        -        -          -      1          11.1    1         6.7   1     11.1    3      4.7
From Birth                1       6.7       3         18.8    2          22.2    2        13.3   1     11.1    9     14.1
Don‟t Know                1       6.7       -          -      1          11.1    -          -    -      -      2      3.1
Other                     -        -        -          -      -           -      -          -    -      -      -       -
         Total           15     100.0      16        100.0    9         100.0   15       100.0   9    100.0   64    100.0




                                                              16
5.1.1 Visual impairment

Visual impairment was one of the most common forms of disability in the five districts
where this study was done. As far as participants in the FGDs with people with and
without disabilities were concerned, this problem is caused by accidents and that
sometimes the eye can just start itching and then one develops total blindness.


In an FGD with men and women with disabilities in TA Mlumbe in Zomba, participants
mentioned that visual impairment can also be as a result of suffering from eye infections
and that this condition can also result from wearing sunglasses. In Ntchisi and Chikwawa,
it was specifically mentioned that infections such as smallpox and measles can lead to
visual impairment. In TA Makhwira, men mentioned that visual impairment is caused by
lack of a balanced diet, facing the sun too much and that this can also be caused by
witchcraft. The belief that witchcraft can cause visual impairment was also mentioned in
the other districts. In an FGD with a mixture of men and women with disabilities in TA
Mwambo, participants mentioned that people can be born with visual impairment
although eye infections are the most important causes of visual impairment. They also
added that using wrong treatment in eyes can also lead to visual impairment. Further,
women in an FGD conducted in TA Mwambo said that visual impairment can also be
caused by road accidents or indeed any accident and that in some cases the eyes may just
start itching after which one development blindness.


In an FGD with men and women with disabilities conducted in TA Mabulawo in Mzimba
District, participants said that visual impairment can be caused by wounds found in the
eyes as well as poor sanitation. They explained that some people do not wash their faces
and that dust accumulating in the eyes after a long walk can lead to visual impairment. In
another FGD conducted with men in TA Mzukuzuku in Mzimba, participants also said
that eye infections such as conjunctivitis (vimbokoli) if not treated early may lead to
blindness. In addition to this, they also mentioned old age, not washing one‟s face, lack
of balanced diet and that there are other people who are just bon blind. What also came
out in all the FGDs conducted in Mzimba was that they mentioned non-treatment of



                                            17
sexually transmitted diseases such as syphilis and gonorrhea as a factor that can lead to
visual impairment.


It is clear from this discussion that although other causes such as witchcraft, wearing of
sunglasses, lack of a balanced diet were mentioned, eye infection as a cause of visual
impairment was mentioned in all the districts and in all the FGDs.


It was also mentioned in all FGDs with women and men that eye problems can be
avoided or prevented by going to the hospital whenever one sees that his or her eyes are
not all that well. The men from TA Mlumbe said that the problem is that some people are
generally lazy to go to the hospital hence they go there at the last minute, hence the
development of visual impairment. In addition to this, one should also avoid playing with
sharp objects when doing day to day activities as they may injure him or her in the eye
resulting in visual impairment. In TA Makhwira, it was further mentioned that while
there is need of taking the person with the eye problem to the hospital early, there was
also need that people should not look at the sun directly and that different organizations
should teach people how blindness can be prevented. In TA Mzukuzuku in Mzimba, in an
FGD with women, participants mentioned that visual impairment can also be prevented
by vaccinating children and that when bathing the child, the eyes should be cleaned
properly. Since participants felt that visual impairment can be caused by non-treatment of
sexually transmitted diseases, they therefore also mentioned that people should avoid
casual sexual intercourse. What we find here is that when it comes to prevention, people
always mention that it is better to take care of the cause of that form of disability.


While people with disabilities generally knew the major causes of visual impairment for
example accidents, eye infections etc, there also exist misperceptions about causes of this
condition for example that wearing of sunglasses and witchcraft can cause visual
impairment. There is therefore a need for civic education on causes of visual impairment
and how visual impairment can be prevented.




                                              18
5.1.2 Physical disabilities resulting in mobility problems


It was also mentioned by men and women in all the FGDs that this is one of the most
common forms of disability in the study sites. Regarding causation of this form of
disability, participants in the FGDs said that some persons with this form of disability are
born like that while others had an accident which resulted into this form of disability. It
was also explained in a number of districts that some diseases such as epilepsy can also
lead to this form of disability. The men in TA Mlumbe especially mentioned that in some
cases what happens is that children like climbing trees and when they fall down they may
break their legs resulting into physical disability. Just as was the case with visual
impairments, it was also mentioned in Chikwawa that witchcraft can also be the cause of
physical impairments. They explained that a witch may take earth or sand from the
footprint of a person which they mix with traditional medicines as a result one starts
feeling a lot of pain in the legs or arms eventually suffering from a physical impairment.
In an FGD with men in TA Mzukuzuku, participants mentioned that there is a belief that
when parents are HIV+, the baby to be born out of that union will be paralysed. Although
they said this, they however could not really explain how this happens. In an FGD with
women in TA Mzukuzuku, participants said that in addition to polio and accidents, long
illness and stroke are other causes of physical impairments such as paralysis of legs and
arms.


In almost all the FGDs, it was mentioned that the physical impairments of legs and arms
are caused by polio and that these can be prevented by taking the children to the hospital
for vaccination against polio. Some impairments are also from birth and, in such cases,
there is nothing that can be done to prevent it. Participants in all FGDs said that in order
to prevent this form of disability it is important that whenever one observes or starts
experiencing problems relating to legs, he or she should better rush to the hospital for
treatment. The men from TA Mlumbe however added that these forms of disabilities can
be prevented by ensuring that children do not climb trees. It was also mentioned in an
FGD with people with disabilities in TA Mabulawo that it is sometimes not possible to
prevent these forms of disability because it is God‟s plan and that there is nothing that



                                            19
can be done to prevent this. It can be seen that people are generally knowledgeable about
the causes of physical impairments and consequently how they can prevent them.


5.1.3 Hearing impairments

As far as hearing impairment is concerned, it was mentioned in almost all the FGDs that
a person first experiences the coming out of pus from the ear and when this continues for
a long time, then the person develops a hearing impairment. Men in an FGD conducted in
TA Mlumbe in Zomba further explained that the coming out of the pus from the ear
mainly occurs during infancy and if not treated the person ends up suffering from
hearing impairment at a later stage in his or her life. There were however also other
perceptions about the causes of hearing impairments in Zomba, for example:


      The women in TA Mwambo said that it is important that when bathing a baby one
       should make sure that water does not go into his or her ear because of the fear that
       he or she may develop a hearing impairment in future. They also added that there
       are also others who were born like that.


      In an FGD with men and women with disabilities in TA Mwambo in Zomba, it
       was pointed out that hearing impairments can also be caused by ear infections and
       the use of sticks in poking the ear as this can damage the ear drum.


In an FGD with people with disabilities conducted in TA Mabulawo, they said that
hearing impairments can also be caused by the use of traditional medicine in the
treatment of ear infections. In an FGD with men in TA Mzukuzuku, participants said that
hearing impairments are also caused by old age and in the case of children they explained
that sometimes insects can get into the baby‟s ear but the baby will not talk about it hence
with time, the ear can be damaged, resulting into hearing impairment.


During these FGDs the participants were also asked to explain how these hearing
impairments can be prevented. In order to prevent such hearing impairments, men and



                                            20
women both with and without disabilities in all the FGDs said that it is important that
when one has pus in his or her ear, he or she should go to the hospital so that the pus is
pumped out of the ear and that people should not poke their ears with sticks. They were
also quick in pointing out that hearing impairments caused by old age and those that
people are born with cannot be prevented.




5.1.3 Mental illness

There were two major causes of mental illnesses that were mentioned in all the FGDs and
these were the smoking of chamba and witchcraft. In an FGD with men in TA
Mzukuzuku, participants added that long illness and accidents can also lead to mental
illness. The participants in the FGDs explained that in order to prevent mental illness,
there is need for people not to smoke chamba. While people mentioned that mental
illness can be prevented by stopping smoking chamba, they did however not mention
how mental illness caused by witchcraft can be prevented.


5.1.4 Albinism

In addition to the above forms of disability, there are also other forms such as albinism
which in places such as Ntchisi are referred to as “azungu tsala” or obwanali or indeed
yellow man. In an FGD with people with disabilities in Ntchisi, participants mentioned
that in those days when one was born an albino, people used to think that it was as a
result of being bewitched. These days however there has been a shift in think and people
are seeing more albinos so people no longer have such a belief concerning these people.
Asked what causes albinism, participants said that when one laughs at an albino, he will
also have or give birth to an albino in future. In Mzimba in an FGD with people with
disabilities, participants said that in general people inherit this condition. Participants in
the FGDs said that this form of disability cannot be prevented because it is God‟s wish
for such things to happen.




                                             21
5.2 Treatment for disability


This study also aimed at finding out whether respondents to the household questionnaire
sought treatment for their disability. Table 5.2 shows that in general, most people tried or
were trying to get treatment for their disability. Among the males (see Table 5.2 below)
88.5 per cent of those people with disabilities had sought or were seeking treatment. The
corresponding proportion among the females was 85.9 per cent. There were of course
variations within districts with Mzimba (96.7 per cent) recording the highest proportion
of males seeking treatment and Zomba (93.3 per cent) recording the highest number of
females doing so.

Table 5.2: Treatment seeking for Disability by Sex by District


 SEX      DISTRICT                   Yes                    No               TOTAL
                                N           %          N          %         N     %
          Mzimba                58         92.1         5         7.9       63   100.0
 Male     Ntchisi               59         96.7         2         3.3       61   100.0
          Ntcheu                25         78.1         7        21.9       32   100.0
          Zomba                 25         86.2         4        13.8       29   100.0
          Chikwawa              33         80.5         8        19.5       41   100.0
TOTAL                          200         88.5        26        11.5      226   100.0

       Mzimba                  14          93.3         1         6.7       15      100.0
       Ntchisi                 13          81.3         3        18.8       16      100.0
Female Ntcheu                   6          66.7         3        33.3        9      100.0
       Zomba                   14          93.3         1         6.7       15      100.0
       Chikwawa                 8          88.9         1        11.1        9      100.0
TOTAL                          55          85.9         9        14.1       64      100.0


Of the males that sought or were seeking treatment, 85.0 per cent sought help at a public
health facility, 6.5 per cent at a private health facility and 8.5 per cent sought it from a
traditional healer. Among the females, 83.6 per cent sought treatment from a public
health facility, 9.1 per cent from a private health facility and 7.3 per cent from traditional
healers. From this discussion, it is evident that most people sought treatment from health
facilities while there were very few who sought treatment from the traditional healers,




                                             22
and this is especially with those forms of disabilities which were thought to have been
caused by witchcraft.


Respondents to the household questionnaire were further asked the type of treatment that
they have received or were receiving at the time of the survey. The study found that of
those who received treatment, 84.1% said they either received or were receiving
conventional medicine, 9.1% mentioned assistive devices while 4.7% mentioned
traditional medicine. It can be seen therefore that most of the people with disabilities who
sought treatment for their disability, sought treatment from the hospital and, in most
cases, they sought conventional medicine.


6. PROBLEMS FACED BY PEOPLE WITH DISABILITIES


In the last section, a number of things were discussed including the causes of the different
forms of disability, how people think such disabilities can be prevented and whether they
have ever sought treatment for the forms of disability that they suffer from. This section,
using data specifically from the FGDs looks at the general problems that people with
disabilities face. Participants in these FGDs mentioned a number of problems faced by
people with disabilities in different social sectors:


6.1 People with disabilities and education


It was mentioned in all FGDs that people with disabilities generally experience a lot of
problems in relation to school. For example, those who are visually impaired cannot go to
school without a guardian and even if they go to school, they cannot see on the
blackboard. In some cases, the schools are located very far from where people with
disabilities reside hence it becomes increasingly difficult for them to go to school. This
was mentioned as one of the most important reasons why there is a good number of
people with disabilities who have not gone to school.




                                              23
In an FGD with men in TA Mlumbe in Zomba District, participants further commented
that in some cases members of the community do not even want people with disabilities
to go to school as was said by one of the participants:


       “This one, the way he is, cannot participate in this; he cannot pursue education”
       (A participant in an FGD with men in TA Mlumbe in Zomba).


While the above is the scenario, there were also a number of cases in which participants
in FGDs mentioned that as far as education is concerned, the major problem is that there
is noone who can encourage people with disabilities to go to school and because they are
not educated it is very difficult for them to get employment. While distance and
inaccessibility are important factors, in an FGD with men in TA Mzukuzuku in Mzimba,
participants added that even parents in some cases do not want their children who have
disabilities to receive education as is the case with the rest of the children. In some cases,
as was mentioned in this FGD, some people with disabilities do not go to school because
of the feeling that even if they get educated there is nothing that they will achieve in life
as they will not get employed on grounds of their disability. Participants in this FGD
further elaborated that the other problem is that within communities there is general lack
of special schools for people with different forms of disabilities for example the school
for the deaf and the blind. In an FGD with people with disabilities in TA Mabulawo,
participants stressed the lack of materials that can help for example people with visual
impairment to learn properly as they cannot see.


It has been mentioned earlier that people with disabilities may not go to school because
these schools are located very far from their place of residence. When children with
disabilities are in school, in some cases they are teased by their friends as if they are not
human beings and this discourages them from going to school. In Ntchisi, participants in
FGDs even mentioned that the children with disabilities are in some cases laughed at by
their friends. All these attitudes towards children with disabilities may contribute towards
making children with disabilities hating school. From the household questionnaire, as




                                             24
mentioned earlier, disability was one of the major reasons why people with disabilities
left or dropped out of school.


It was also mentioned during the FGDs with men and women in TA Mwambo in Zomba
that it was disappointing to observe that some parents do not show the interest of
encouraging their children with disabilities to go to school. The other factor that hinders
children with disabilities from going to school is poverty which makes it difficult for
them to buy clothes as well as assistive devices to make mobility easier.


It can be concluded from the above discussions that while children with disabilities may
want to go to school, problems such as inaccessibility including long distances, stigma
and discrimination among others, tend to bar them from going to school.


6.2 People with disabilities and employment

In all the FGDs participants mentioned that as far as employment is concerned, people
with disabilities are discriminated against. What came out very strongly from the FGDs
was that even if a person with a disability can have better qualifications than a person
without a disability and if the two attend interviews and the person with a disability
passes, what follows is that the person with a disability is left. In some cases a person
with a disability, even though he or she may have good qualifications, and he is called for
interviews, he or she may not even go to the place of interviews because of problems of
access to the interview venues.


In an FGD with men conducted in TA Mlumbe, participants said that people with
disabilities when they are searching for employment are sometimes told by their
prospective employers:


       “The way you are, you cannot do this work. We want people who do not have
       disabilities” (Participant in an FGD with men in TA Mlumbe)




                                            25
The men with disabilities in one of the FGDs conducted in TA Mlumbe in Zomba further
explained that instead of the employers first of all giving them the job to see if they can
do it, they start by discrediting them. This was echoed by men from TA Makhwira in
Chikwawa who added that employers give priority to people without disabilities because
they can work over long hours and in very bad working conditions, something that people
with disabilities may not cope with. While people with disabilities face problems
regarding employment opportunities, in one of the FGDs conducted in TA Mwambo in
Zomba, it was pointed out that the problems even continue after they are employed as
they are often denied chances of promotion at their workplaces. It can be seen therefore
that indeed people with disabilities, as evidenced from the FGD data, face a lot of
problems regarding employment as well as opportunities of promotion. Civic education
therefore needs to be conducted so that the general population understands that disability
does not necessarily mean inability and that people with disabilities in some cases can
even perform better that those without disabilities.


6.3 People with disabilities and traveling


In an FGD with men in TA Mlumbe, participants said that in some cases they would wish
to travel to different places but because of mobility problems they are not able to do that,
hence they just admire. In most cases, as mentioned by men in an FGD in TA Makhwira
in Chikwawa, most of the people with disabilities just stay at home and that in some
cases they do not even have relatives to take care of them but, because of God‟s grace,
they still survive. In an FGD with people with disabilities in TA Mabulawo, participants
added that for people who are visually impaired, it is difficult for them to travel on their
own without a white cane or someone accompanying them. From this discussion, it can
be seen that mobility is a major problem for most people with disabilities, especially
when it comes to walking over long distances and for people who are visually impaired.


6.4 Other problems




                                             26
In the FGDs conducted in the five districts, participants pointed out that most people with
disabilities do face a number of problems especially financial problems as they cannot be
able to look after themselves adequately and due to physical impairments, they cannot
even afford to build a house for themselves. With regard to seeking health care, it was
pointed out in the FGDs that the major problem is that some health facilities are located
very far from the places where they reside. Even the guardians are sometimes reluctant to
escort people with disabilities to the health facilities because they do not want to or that
they are tired of escorting them etc. In some cases when people with disabilities go to the
hospital they find very long queues and they have to wait for a long time. Therefore it
was suggested that health personnel should give some priority to people with disabilities
when it comes to the provision of both curative and preventive services.


Other problems that people with disabilities face, and as mentioned in the FGDs, include
the following:


          When people with disabilities go to the hospital they are not given priority for
           example not to be on the queue so that they can get treatment and then leave
           early so that they can get home early. In some cases they are even told not to
           jump the line because “sindife tinakulumalitsa (i.e. we are not the ones who
           caused your disability)”. When traveling on a bus, it is the same thing: they
           are not given seats when the bus is full and that other people even push
           assistive devices very far from wherever they are sitting/standing (FGD with
           people with disabilities in TA Mabulabo, Mzimba).


          Organisations responsible for people with disabilities are run by able bodied
           people who are just there for money not to assist people with disabilities
           (FGD with people with disabilities in TA Mabulabo, Mzimba).


          Marriage is another problem. Many people with disabilities are not married
           because of their disability. People generally say that they cannot get married
           to people with disabilities arguing that if his or her relatives are failing to take


                                             27
           care of him/her, how will someone else who is not related to them manage.
           Others said that


               “Ndikakwatirana ndi munthu wolumala ndiye kuti ntchito zonse ndi
               zandekha” (If I get married to one who has a disability, then I will be
               doing all the chores in the home).


This, as far as participants were concerned, explains why most women with disabilities
only have children whose fathers have run away from them. In some cases, because of
the problems that a person with a disability may have, parents may just find a wife for
them, someone he or she does not love (FGD with people with disabilities in TA
Mabulabo, Mzimba).


This discussion therefore shows that people with disabilities face a lot of problems
relating to education, health, employment and marriage. While some people do
sympathise with people with disabilities, results from the FGDs with people without and
with disabilities show that there is a lot of discrimination against people with disabilities,
especially when it comes to employment, education and marriage which should be
addressed urgently.


6.7 Perceptions of people with disabilities as a problem


One of the aims of this study was to find out people‟s perceptions about people with
disabilities in the communities. From the FGDs which were conducted, it was observed
that people‟s perceptions about people with disabilities are mixed. Some participants said
that some people view people with disabilities as beggars and, the moment they see them,
they get bored while others feel sorry for them and, wherever need arises, they assist
them.


While this is the case for some people, it was also learnt during an FGD with men with
disabilities in TA Mlumbe in Zomba that some people do not understand disability issues



                                             28
and some of these people think that it was the wish of the people with disabilities to be
the way they are while the truth is that none of the people with disabilities wished he or
she was like that. One of the participants further said:


       “Some people think that we took money and bought disability from a shop and
       they do not even think that God can make them disabled anytime as well”
       (Participant in an FGD with men with disabilities in TA Mlumbe in Zomba).


In an FGD with men in TA Makhwira, participants said that the people with disabilities
in their community are not viewed as human beings at all, they are not viewed as people
who can do something meaningful or beneficial in their communities. These men added
that men with disabilities are viewed by most women as useless:


       “What is he going to help me; he cannot even work in the garden” (A participant
       in an FGD with men in TA Makhwira in Chikwawa).


The participants in this FGD further said that because of the fact that they have
disabilities, they also have very few friends.


In an FGD with people with disabilities in TA Mzukuzuku in Mzimba District,
participants said that in general they are not able to do their day to day activities and that
children sometimes laugh at people with disabilities especially how they walk and they
may even go to the extent of imitating them in the way they walk.


Apart from getting information during the FGDs about people‟s attitude towards people
with disabilities, the household questionnaire was also used to find out about this
information. Table 6.1 shows that a good proportion of males (46 per cent) and females
(50 per cent) said that people feel sorry when they see their condition. Only 8.8 per cent
of the males and 10.9 per cent of the females though reported that people come to their
assistance as a result of their condition. Sadly, 23 per cent of the males and 25 per cent
of the females reported that people laugh at them as a result of them being disabled.



                                             29
Table 7.1. What people say about your disability by sex by District


                                                                    District
  What People Say                                                                                               Total
about your Disability     Mzimba               Ntchisi             Ntcheu            Zomba       Chikwawa
                         N     %           N             %    N             %   N            %   N      %     N         %

        MALE
Fell sorry               30     47.6      25         41.0     11         34.4   18        62.1   20    48.8   104    46.0
They try to help          7     11.1       6          9.8      2          6.3    1         3.4    4     9.8    20     8.8
They laugh at me         13     20.6      15         24.6     10         31.3    8        27.6    6    14.6    52    23.0
Nothing                  11     17.5      15         24.6      8         25.0    2         6.9    8    19.5    44    19.5
Don‟t Know                2      3.2       -           -       1          3.1    -          -     3     7.3     6     2.7
         Total           63    100.0      61        100.0     32        100.0   29       100.0   41   100.0   226   100.0

      FEMALE             N       %        N           %       N           %     N          %     N      %     N       %
Fell Sorry                4     26.7       9         56.3     5          55.6    9        60.0   5     55.6   32     50.0
They try to help          3     20.0       1          6.3     1          11.1    1         6.7   1     11.1    7     10.9
They laugh at me          4     26.7       4         25.0     2          22.2    3        20.0   3     33.3   16     25.0
Nothing                   4     26.7       2         12.5     1          11.1    2        13.3   -      -      9     14.1
Don‟t know                -      -         -           -      -           -      -          -    -      -      -      -
         Total           15    100.0      16        100.0     9         100.0   15       100.0   9    100.0   64    100.0




                                                              30
These results show that while some people have some positive reactions and attitudes
towards people with disabilities and that they would want to assist, it should also be
mentioned (as can be seen from the above discussion) that there are others who have very
negative attitudes to people with disabilities up to the existent of thinking that they are
beggars. This attitude needs to be changed through intensive civic education campaigns.


7. CHANNELS OF COMMUNICATION

Since one of the aims of the study was to find out the best strategies that can be used to
communicate HIV/AIDS information to people with disabilities, it was important to find
out how respondents to the household questionnaire communicated with others in their
community. As can be seen from Table 7.1 below, almost everybody that was
interviewed indicated that they communicated with others via speaking.


Table 7.2. How do you communicate with others by Sex by District?


Type of Disability                     How do members of your family communicate with
                                       you?                                             Total
                                       Sign language Talking           Body Language
Differences in leg length and other    0 (0.0%)      23 (6.8%)         0 (0.0%)         23 (6.8%)
dimensions
Paralysed legs                         0 (0.0%)        107 (31.8%)    0 (0.0%)          107 (31.8%)
Epilepsy                               0 (0.0%)        33 (9.8%)      0 (0.0%)          33 (9.8%)
Hunchback                              0 (0.0%)        8 (2.4%)       0 (0.0%)          8 (2.4%)
Leprosy                                0 (0.0%)        1 (0.3%)       0 (0.0%)          1 (0.3%)
Paralysis of arms and differences in   0 (0.0%)        33 (9.8%%)     0 (0.0%)          33 (9.8%)
arms length and other dimensions
Hearing problems                       2 (0.6%)        8 (2.4%)       0 (0.0%)          10 (3.0%)
Speech problems                        4 (1.2%)        8 (4.2%)       0 (0.0%)          12 (3.6%)
Total blindness                        0 (0.0%)        14 (4.2%)      0 (0.0%)          14 (4.2%)
One eye blind                          0 (0.0%)        45(13.1%)      0 (0.0%)          45 (13.1%)
Albino                                 0 (0.0%)        6 (1.8%)       0 (0.0%)          6 (1.8%)
Feet abnormalities                     0 (0.0%)        19 (5.6%)      0 (0.0%)          19 (5.6%)
Mental disorder                        0 (0.0%)        3 (0.9%)       0 (0.0%)          3 (0.9%)
General eye problems                   0 (0.0%)        9 (2.7%)       0 (0.0%)          9 (2.7%)
Deformed mouth                         0 (0.0%)        2 (0.6%)       0 (0.0%)          2 (0.6%)
Missing limb                           0 (0.0%)        2 (0.6%)       0 (0.0%)          2 (0.6%)
Others                                 0 (0.0%)        9 (2.7%)       0 (0.0%)          9 (2.7%)
Total                                  6 (1.8%)        331 (98.2%)    0 (0.0%)          337 (100%)




                                                  31
Only 1.8 per cent of the respondents used sign language as a mode of communication and
as can be seen from Table 7.1 above, these were those who had speech and hearing
difficulties. Sign language was the major form of communication for those who could not
speak or had hearing problems, otherwise the rest of the respondents with disabilities said
that they communicate with others mainly through speech.


Respondents to the household questionnaire were also asked whether it was easy for them
to communicate with others. Ninety four percent said that it was easy to communicate
with others while 6% said that it was not easy. Of those who said that it was not easy to
communicate with others, 2.1% (7) had hearing problems, 2.6% (9) had speech problems,
0.3% had some paralysed arms while 0.6% (2) had paralysed legs. All those who had
speech and hearing problems said that the easiest form of communication was through
sign language while the rest said that the easiest form of communication for them was
through speech.


Those respondents who said that it was easy to communicate with others were further
asked what made it easy for them to communicate. Most of the respondents (318, 98.8%
where n = 322) said that it was easy to communicate with others because they were able
to hear and speak, 0.3% (1) mentioned Braille, another 0.3% (1) mentioned sign
language, a further 0.3% mentioned reading and the last 0.3% mentioned writing as a
form of communication. It can be seen that while the majority of respondents said that
they were able to communicate easily with others because they were able to hear and
speak, communication through speech is not universal as others do not either speak or
hear. In discussing communication channels, other channels such as use of sign language,
the use of Braille etc should always be put into perspective.


From the above discussion, it can be seen that there were also others who mentioned that
it was not all that easy to communicate with others. The major reasons that were given by
these respondents were that they could not read, they could not understand sign language
and that they were not able to speak. This therefore requires a major rethinking in the




                                            32
way health education messages including those on HIV/AIDS are communicated to
people with disabilities who have difficulties in communicating with others.


There are a number of communication channels through which health and other messages
are communicated to members of the community throughout Malawi and these include
through the radio, television/video, drama, pictures/posters and through the print and
other related media. Respondents were therefore asked whether they have access to any
of the above channels. Table 7.3a below shows these results:


Table 7.3a Access to channels of communication


Channels      of Mzimba        Ntchisi      Ntcheu       Zomba        Chikwawa Average
communication
Radio             81 (92.0%)   66 (79.5%)   42 (85.7%)   44 (83.0%)   52 (77.6%)   285 (83.8%)

Television        8 (9.1%)     1 (1.2%)     8 (16.3%)    1 (1.9%)     2 (3.0%)     20 (5.9%)

Drama             62 (70.5%)   34 (40.5%)   18 (36.7%)   11 (20.8%)   29 (43.3%)   154 (45.2%)

Pictures          63 (71.6%)   41 (48.8%)   23 (46.9%)   6 (11.3%)    17 (25.4%)   150 (44.0%)

Print             44 (50.0%)   18 (21.4%)   20 (40.8%)   3 (5.7%)     10 (14.9%)   95 (27.9%)



Table 7.3a shows that 83.8% of the respondents had access to the radio and this was
followed by those who had access to drama (45.2%) and pictures (44.0%). Very few
respondents (5.9%) had access to television. There were also some variations with regard
to channels of communication at district level. For example, Mzimba had the highest
proportion of respondents with disabilities having access to the radio at 92% with
Chikwawa being the lowest at 77.6%.


While Table 7.3a generally looks at the access to different channels of communication, it
was also necessary to find out access to these forms of communication by people with
different forms of disabilities. Table 7.3b shows access to different forms of
communication by people with different forms of disabilities:




                                            33
Table 7.3b: Access to different the radio by people with different forms of
disabilities

Type of disability                                    Count        Access to radio   Total

                                                                   Yes     no
Differences in leg length and other dimensions        Count        22      1         23
                                                      % of Total   6.5%    .3%       6.8%
Paralyzed legs                                        Count        90      18        108
                                                      % of Total   26.5%   5.3%      31.8%
Epilepsy                                              Count        28      5         33
                                                      % of Total   8.2%    1.5%      9.7%
Hunchback                                             Count        6       2         8
                                                      % of Total   1.8%    .6%       2.4%
Leprosy                                               Count        0       1         1
                                                      % of Total   0%      .3%       .3%
Differences in length of arms                         Count        1        0        1
                                                      % of Total   .3%      0%       .3%
Paralyzed arms                                        Count        32       0        32
                                                      % of Total   9.4%     0%       9.4%
hearing problems                                      Count        7       3         10
                                                      % of Total   2.1%    .9%       2.9%
speech problems                                       Count        9       4         13
                                                      % of Total   2.6%    1.2%      3.8%
total blindness                                       Count        11      3         14
                                                      % of Total   3.2%    .9%       4.1%
One eye blind                                         Count        37      9         46
                                                      % of Total   10.9%   2.6%      13.5%
Albinism                                              Count        5       1         6
                                                      % of Total   1.5%    .3%       1.8%
feet abnormalities                                    Count        16      3         19
                                                      % of Total   4.7%    .9%       5.6%
mental disorder                                       Count        3       0         3
                                                      % of Total   .9%      0%       .9%
Goiter                                                Count        1        0        1
                                                      % of Total   .3%      0%       .3%
nose problems                                         Count        1        0        1
                                                      % of Total   .3%      0%       .3%
general eye problems                                  Count        8       1         9
                                                      % of Total   2.4%    .3%       2.6%
deformed mouth                                        Count        0       2         2



                                                 34
                                                            % of Total         0%          .6%          .6%
hip problems                                                Count              1            0           1
                                                            % of Total         .3%          0.0%        .3%
limb missing                                                Count              2            0           2
                                                            % of Total         .6%          0.0%        .6%
Others                                                      Count              5           1            6
                                                            % of Total         1.5%        0.3%         1.8%
Total                                                       Count              285         55           340
                                                            % of Total         83.8%        16.2%        100.0%


It can be seen from Table 7.3b that 83.8% of the people with disabilities who were
interviewed had access to the radio and the majority of these were people with physical
disabilities. The table also shows that even some people with hearing impairments had
access to the radio which may indicate that these people were not totally deaf.

Table 7.3c: Access to TV by people with disabilities

Type of disability                                  Count                access to TV               Total

                                                                         yes          No
Differences in leg length or width                  Count                             23            23
                                                    % of Total                        6.7%          6.7%
Paralyzed legs                                      Count                5            104           109
                                                    % of Total           1.5%         30.5%         32.0%
Epilepsy                                            Count                3            30            33
                                                    % of Total           .9%          8.8%          9.7%
Hunchback                                           Count                1            7             8
                                                    % of Total           .3%          2.1%          2.3%
Leprosy                                             Count                0            1             1
                                                    % of Total           0%           .3%           .3%
Differences in length of arms                       Count                0            1             1
                                                    % of Total           0%           .3%           .3%
Paralyzed arms                                      Count                2            30            32
                                                    % of Total           .6%          8.8%          9.4%
Hearing problems                                    Count                1            9             10
                                                    % of Total           .3%          2.6%          2.9%
Speech problems                                     Count                0            13            13
                                                    % of Total           0%           3.8%          3.8%
Total blindness                                     Count                0            14            14
                                                    % of Total           0%           4.1%          4.1%
One eye blind                                       Count                2            44            46
                                                    % of Total           .6%          12.9%         13.5%



                                               35
Albino                                         Count          0      6         6
                                               % of Total     0%     1.8%      1.8%
Feet abnormalities                             Count          4      15        19
                                               % of Total     1.2%   4.4%      5.6%
Mental disorder                                Count          0      3         3
                                               % of Total     0%     .9%       .9%
Goiter                                         Count          0      1         1
                                               % of Total     0%     .3%       .3%
Nose problems                                  Count          1       0        1
                                               % of Total     .3%     0.0%     .3%
General eye problems                           Count          1      8         9
                                               % of Total     .3%    2.3%      2.6%
Deformed mouth                                 Count          0      2         2
                                               % of Total     0%     .6%       .6%
Hip problems                                   Count          0      1         1
                                               % of Total     0%     .3%       .3%
Others                                         Count          0      7         7
                                               % of Total     0%     2.1%      2.1%
Limb missing                                   Count          0      2         2
                                               % of Total     0%     .6%       .6%
Total                                          Count          20     321       341
                                               % of Total     5.9%   94.1%     100.0%


As we discussed above, not many people with disabilities who were interviewed had
access to TV. It was only 5.9% (20) of the respondents who had access to the radio. None
of those people who were completely blind had access to TV while only 2 people who
were blind in one eye had access to the TV. Appendices 1 to 3 further show the access to
pictures, print and drama.


It can be concluded from the above discussion that while speech was found to be the
easiest form of communication, it is not the right channel of communicating information
such as on HIV/AIDS to people who have hearing and speech impairments; sign
language and other forms of communication might be better alternatives as will be
discussed later.


8.0 KNOWLEDGE ABOUT HIV/AIDS




                                          36
One of the main objectives of this study was to assess the level of awareness regarding
issues of HIV/AIDS among people with disabilities. From Table 8.1 below it can be seen
that approximately 87% of the respondents said that they had ever heard about HIV while
13% said that they had not. Although the size of the sample was small, it can be seen
from Table 8.1 that a higher proportion of people with physical disabilities had ever
heard of HIV compared to other forms of disabilities. This is possibly because of their
ability to speak and hear. It was however noted that even though some of the respondents
had hearing impairments, speech problems etc a higher proportion of them had heard
about HIV.




Table 8.1a Ever Heard about HIV

Type of disability                 Count          Ever heard about HIV        Total

                                                  Yes           No
Differences in leg length         Count           22            1             23
                                  % of Total      6.5%          .3%           6.8%
Paralyzed legs                    Count           100           9             109
                                  % of Total      29.5%         2.7%          32.2%
Epilepsy                          Count           28            5             33
                                  % of Total      8.3%          1.5%          9.7%
Hunchback                         Count           6             2             8
                                  % of Total      1.8%          .6%           2.4%
Leprosy                           Count           0             1             1
                                  % of Total      0%            .3%           .3%
Differences in length of arms     Count           1                           1
                                  % of Total      .3%                         .3%
Paralyzed arms                    Count           27            5             32
                                  % of Total      8.0%          1.5%          9.4%
Hearing problems                  Count           8             2             10



                                           37
                                 % of Total      2.4%         .6%           2.9%
Speech problems                  Count           6            5             11
                                 % of Total      1.8%         1.5%          3.2%
Total blindness                  Count           13           1             14
                                 % of Total      3.8%         .3%           4.1%
One eye blind                    Count           41           5             46
                                 % of Total      12.1%        1.5%          13.6%
Albino                           Count           6            0             6
                                 % of Total      1.8%          0%           1.8%
Feet abnormalities               Count           17           2             19
                                 % of Total      5.0%         .6%           5.6%
Mental disorder                  Count           2            1             3
                                 % of Total      .6%          .3%           .9%
Goiter                           Count           1             0            1
                                 % of Total      .3%           0%           .3%
Nose problems                    Count           1             0            1
                                 % of Total      .3%           0%           .3%
General eye problems             Count           7            2             9
                                 % of Total      2.1%         .6%           2.7%
Deformed mouth                   Count            0           2             2
                                 % of Total       0%          .6%           .6%
Hip problems                     Count           1             0            1
                                 % of Total      .3%           0%           .3%
Other                            Count           7             0            7
                                 % of Total      2.1%          0%           2.1%
Limb missing                     Count           2             0            2
                                 % of Total      .6%           0%           .6%
Total                            Count           296          43            339
                                 % of Total      87.3%        12.7%         100.0%


Those who reported that they heard about HIV were further disaggregated according to
sex. Table 8.1b shows those respondents who had heard about HIV according to sex:


Table 8.1b: Ever heard about HIV by sex


Ever heard about                 Sex of Respondent                  Total
HIV                    Male                   Female




                                          38
Yes                    184 (84.8%)              112 (91.8%)          296 (87.3%)
No                     33 (15.2%)               10 (8.2%)            43 (12.7%)
Total                  217 (100.0%)             122 (100.0%)         339 (100.0%)


As can be seen from Table 8.1b, a higher proportion of female respondents (91.8%) had
heard about HIV compared to men and quite a considerable proportion of people with
disabilities (12.7%) had not heard about HIV.


Those that said that they had heard about HIV, 36.3 per cent among males said that HIV
means AIDS, 3.6 per cent said that it was an organism that causes AIDS and 15.9 per
cent said that it is a disease which one gets by having sex with multiple partners.
Corresponding proportions among females were 31.5 per cent, 38.9 per cent and 18.5 per
cent respectively. It is important that people should be able to differentiate between HIV
and AIDS and that HIV per se is not a disease but a microorganism or virus that causes
AIDS.


Overall, 94.4% of people with disabilities interviewed mentioned that they had heard
about AIDS while 5.6% had not heard about AIDS (see Tables 8.2a and 8.2b). From
Table 8.2a below, it can be seen that 92.1% of the male respondents and 98.3% of the
female respondents had heard about AIDS.




Table 8.2a: Have you heard about AIDS by sex of respondent

Have you heard         Sex of respondent                             Total
about AIDS             Male                     Female
Yes                    199 (92.1%)              119 (98.3%)          318 (94.4%)
No                     17 (7.9%)                2 (1.7%)             19 (5.6%)
Total                  216 (100.0%)             121 (100.0%)         337 (100.0%)




                                           39
It can also be seen from Table 8.2a that a higher proportion of women with disabilities
(98.3%) had heard about AIDS compared to the male respondents (92.1%). According to
the 2000 Demographic and Health Survey, 98.9% of the women and 99.7% of the men
had heard about AIDS. The percentages, as found in the current study, especially among
men with disabilities are lower than those in the DHS. This implies that while knowledge
about AIDS among people with disabilities is high as shown in this report, it is however
lower than in the general population; hence some more work needs to be done in order to
increase knowledge levels to 100% as is the case in the general population.




Table 8.2b: Knowledge about AIDS by type of disability


                                     Have you heard about AIDS
Type of Disability   Count                                                Total

                                     Yes                No
Differences in leg   Count           23                 0                 23
length or width
                     % of Total      6.8%               0%                6.8%


                                            40
Paralyzed legs         Count           105               4                  109
                       % of Total      31.2%             1.2%               32.3%
Epilepsy               Count           29                4                  33
                       % of Total      8.6%              1.2%               9.8%
Hunchback              Count           6                 2                  8
                       % of Total      1.8%              .6%                2.4%
Leprosy                Count           0                 1                  1
                       % of Total       0%               .3%                .3%
paralyzed arms         Count           31                0                  31
                       % of Total      9.2%               0%                9.2%
hearing problems       Count           9                 1                  10
                       % of Total      2.7%              .3%                3.0%
speech problems        Count           7                 4                  11
                       % of Total      2.1%              1.2%               3.3%
total blindness        Count           14                0                  14
                       % of Total      4.2%               0%                4.2%
one eye blind          Count           45                1                  46
                       % of Total      13.4%             .3%                13.6%
Albino                 Count           6                 0                  6
                       % of Total      1.8%               0%                1.8%
feet abnormalities     Count           18                1                  19
                       % of Total      5.3%              .3%                5.6%
mental disorder        Count           3                 0                  3
                       % of Total      .9%                0%                .9%
Goiter                 Count           1                 0                  1
                       % of Total      .3%                0%                .3%
nose problems          Count           1                 0                  1
                       % of Total      .3%                0%                .3%
general eye problems   Count           8                 1                  9
                       % of Total      2.4%              .3%                2.7%
deformed mouth         Count           2                 0                  2
                       % of Total      .6%                0%                .6%
hip problems           Count           1                 0                  1
                       % of Total      .3%                0%                .3%
Other                  Count           7                 0                  7
                       % of Total      2.1%               0%                2.1%
Limb missing           Count           2                 0                  2
                       % of Total      .6%                0%                .6%
Total                  Count           318               19                 337
                       % of Total      94.4%             5.6%               100.0%



From Table 8.2b, it can be seen that regardless of the type of disability, a large proportion
in each type of disability had heard about AIDS, with those with physical disabilities


                                               41
have a larger proportion of those people with disabilities who had heard about AIDS.
Among those who had heard about AIDS, 58.2 per cent said that it is a disease
transmitted through sex, 11.3 per cent said that it is a disease that has no cure, 8.9 per
cent said that it is a disease caused by HIV and 4.7% said that it is a disease that makes
one to lose weight. Corresponding proportions among females are 60.3 per cent, 15.5 per
cent, 3.4 per cent and 8.6 per cent respectively.


A further test of people‟s knowledge and awareness of HIV/AIDS issues was whether
they could tell if someone had HIV/AIDS just by looking (Refer to Table 8.3 below).
Biomedically, it is not possible to tell that one has HIV/AIDS just by looking at them.
Laboratory tests should be done which will establish whether one has HIV or not.
Overall 37.3% of the respondents said that they could be able to identify HIV cases by
looking while 62.7% said they could not. Among the males, 34.6 % said they would be
able to tell if one has HIV/AIDS just by looking. Among the females, 42.1 % of the
respondents said that they would tell someone had HIV/AIDS just by looking.

Table 8.3: Can you Identify HIV cases with your eyes by sex by District


             Can you identify HIV cases by your eyes by sex by
 SEX                              District
                 Yes                  No             TOTAL
             N         %          N         %       N       %
             74       34.6       140       65.4    214     100.0
 Male

Female       51         42.1         70        57.9   121      100.0

 Total       125        37.3        210        62.7   335      100.0

In the Demographic and Health Survey of 2000, the question was asked differently.
Respondents in this study were asked whether a healthy looking person can have the
AIDS virus. Among the females, 15.7% said that a healthy looking person cannot have
the AIDS virus and among the males the percentage was lower at 8.3%. This implies that
higher proportions of people with disabilities believe that it is possible to identify HIV




                                             42
cases just by looking compared with people in the general proportion; hence the need for
more civic education.


Those who said they could tell, among the men 6.8% said they would recognize one if
they have constant diarrhea, 71.2% percent said if a person lost weight, 2.7% said if a
person desired to eat good food, 8.2% said if one lost hair; 2.7% said if a person coughs
constantly and a further 2.7% said that if one developed shingles.         Corresponding
proportions among females were 19.1%, 70.2%, 6.4%, 0, 4.3%, and 0.0% respectively.
What this shows is that loss of body weight is perceived by many as a sign of AIDS. The
signs and symptoms, as discussed in this paragraph, while they might be related to
HIV/AIDS, it cannot be concluded that one suffers from HIV/AIDS related illnesses if he
or she presents such signs and symptoms unless it is confirmed by an HIV test.


8.1 Sources of information on HIV/AIDS


One of the issues investigated in this study was to find out the sources of information on
HIV/AIDS for people with disabilities. Table 8.4 below shows how respondents with
disabilities knew about HIV/AIDS:




Table 8.4: How respondents came to know about HIV/AIDS (n=328)


                                           43
How    they         knew   about SEX OF RESPONDENT
HIV/AIDS
                                   MALE (%)        FEMALE %)       TOTAL (%)
Health facilities                  23.0            37.0            28.0
Teachers                           9.6             5.0             7.9
Youth peer group                   1.0             1.7             1.2
Party leaders                      1.0             0.0             0.6
Religious/church leaders           6.2             5.0             5.8
Printed material                   1.0             2.5             1.5
Parents                            1.9             2.5             2.1
Friends                            10.0            11.8            10.7
NGOs/CBOs                          2.9             0.8             2.1
Radio                              33.5            26.1            30.8
I saw my sister                    0.0             1.7             0.6
Sign language                      0.0             0.8             0.3
BLM                                3.3             0.8             2.4
Other                              6.2             4.2             5.5
Do not know                        0.5             0.0             0.3
Total                              100.0           100.0           100.0



The above table shows that the radio was the most important channel through which
respondents with disabilities knew about HIV/AIDS followed by the health facilities,
where health workers play an important role in teaching people seeking services about
HIV/AIDS. Other sources from which respondents heard about HIV/AIDS and as can be
seen from Table 8.4 included teachers, peer groups, political party leaders,
religious/church leaders, parents and NGOs/CBOs.



On sources of information on AIDS, the 1996 Knowledge, Attitudes and Practices Survey
also showed that the radio was the most common source of information on AIDS
followed by friends/relatives and health facilities (National Statistical Office, 1997).


                                           44
These were also the major sources of information for people with disabilities in this
study.



Appendix 4 further shows the mode of communication through which respondents to the
household questionnaire knew about HIV/AIDS. From the results presented in Appendix
4, it can be seen that only 1 respondent said that he heard about AIDS through the use of
sign language, none of those respondents who were completely visually impaired heard
about AIDS through printed material and that those who had hearing problems heard
about AIDS through various channels.



While these were the communication channels through which respondents knew about
HIV/AIDS, it was also important to find out the different sources of information on
HIV/AIDS in their communities. While teachers, religious leaders, friends, etc were
mentioned to be sources of information on HIV/AIDS, as far as communities were
concerned however, the radio and the health facilities were mentioned to be the most
important sources of information on HIV/AIDS.


During the focus group discussions, similar sources of information were also mentioned
by participants, for example:


        In an FGD with people with disabilities in TA Mabulawo, participants said that
         they get information on HIV/AIDS through channels such as the radio, health
         facilities, clubs that teach about HIV/AIDS and from magazines and newspapers.
         In an FGD with women in TA Mzukuzuku in the same district, participants added
         that they also get information from drama performances, antenatal clinics,
         churches and during party meetings conducted in their area. In another FGD with
         men in TA Mzukuzuku, participants also mentioned some of these cannels of
         communication but they added that in their area, there are some CBOs such as
         Tikoleraneko AIDS Resource Centre which teach people about HIV/AIDS and
         that Population Services International also use projector films to teach people.


                                              45
      In an FGD with women in TA Makhuwira in Chikwawa District, participants
       mentioned that there are a number of sources of information on HIV/AIDS for
       them for example that they watch drama supported by ADRA and that they also
       listen to the radio. It was also mentioned in this FGD that information sheets on
       condom use and HIV/AIDS are put in the starter packs that they receive so that
       whoever went to school can be able to read. They added that in some cases
       passing cars also throw information sheets on HIV/AIDS as they pass by.


      During an FGD with men in TA Mlumbe in Zomba, participants mentioned that
       the different sources of information on HIV/AIDS include hospitals, political
       rallies and churches but they added that the last two do not discuss the issues at
       length. They however said that most people with disabilities do not access
       information because in their area there are no clubs for people with disabilities
       and that in some cases people with disabilities are unable to go to places where
       information on HIV/AIDS is being disseminated.


      In an FGD with people with disabilities in TA Kalumo, participants said that they
       access information on HIV/AIDS from the radio and they also discuss such issues
       when they are drinking beer at the trading centers.


In the FGDs, participants further mentioned that while people with disabilities access this
information on HIV/AIDS, there are some who have difficulties in accessing this
information and this is dependent on the type of disabilities one has. They gave an
example of people who are visually impaired who require that some other person should
read for them this information and if there is no one around then the person who is
visually impaired will remain in the dark. They argued that the same thing applies to
those with hearing impairments who can only see pictures and that if they cannot read
then they will not know what is contained in the information sheet on HIV/AIDS. In an
FGD with men in TA Makhwira, participants said that it is not necessarily true when
people say that people with disabilities are able to access or hear about HIV/AIDS mainly


                                            46
because noone ever goes to chat with them about AIDS. Some people with disabilities do
not have radios and they do not even walk hence they may not know about AIDS.


During the FGDs participants were also asked whether they are able to access any
information in their communities. One of the participants in an FGD with men in TA
Mlumbe said that their area is generally backward in that while they hear from the radio
that other areas have different programmes on AIDS, there are no such programmes in
their area. In an FGD with men from TA Makhwira, participants mentioned that they
access information through hospitals as they are invited to go there and watch drama and
in that way they get to know what AIDS is all about. In addition to this, the radio was
also mentioned as an important source of information. Other sources mentioned were
doctors, churches and political rallies.


From the FGDs, it is clear as discussed above that people with disabilities, while they
may have access to information on HIV/AIDS, they do experience some problems
depending on the type of disability. In the household questionnaire, respondents were
also asked whether they face any problems with regard to accessing information on
HIV/AIDS. Table 8.5 gives these results and shows that the majority (52.9%) had no
problems. The major problem cited by respondents was the lack of materials and that
among people who were visually impaired the major problem was lack of guidance.
Other problems which were mentioned included long distances to health facilities, being
busy and inability to walk to the places where such information is given. As has been
discussed in this section, while people with disabilities would want to access information
on AIDS, there exist barriers to accessing information. If Malawi as a nation is to contain
the spread of HIV, the existing barriers to information for people with disabilities should
be addressed.




                                            47
Table 8.5 Problems encountered in accessing info on HIV/AIDS

Type of Disability                          Problems encountered in accessing info on HIV/AIDS                                                            Total
                                            None      Old age     Lack of materials      Lack of a   Other specify   Distance   Cant walk to   Busy
                                                                                         person to                   from the   these places
                                                                                         guide me                    hospital
Leg difference in length or    Count         15        0           4                      1           2                0         0              1          23
width
                               % of Total    4.8%        0.0%      1.3%                   .3%         .6%               0.0%       0.0%          .3%       7.4%
Paralyzed legs                 Count        46        0           30                     10          12              1          1              0          100
                               % of Total   14.7%      0.0%       9.6%                   3.2%        3.8%            .3%        .3%             .0%       32.1%
Epilepsy                       Count         20         1          9                      0           1                0          1              0         32
                               % of Total   6.4%      .3%         2.9%                    0.0%       .3%              0.0%      .3%             0.0%      10.3%
Hunchback                      Count           4          1          2                      0           0                0          0              0         7
                               % of Total    1.3%       .3%        .6%                     0.0%        0.0%             0.0%       0.0%           0.0%     2.2%
Leprosy                        Count           1          0          0                      0           0                0          0              0         1
                               % of Total     .3%         0.0%       0.0%                   0.0%        0.0%             0.0%       0.0%           0.0%     .3%
Arms difference in width and   Count           0          0          1                      0           0                0          0              0         1
length
                               % of Total      0.0%      0.0%        .3%                    0.0%        0.0%            0.0%       0.0%           0.0%      .3%
Paralyzed arms                 Count         18        0            9                     1           0               0          0              0          28
                               % of Total    5.8%       0.0%        2.9%                  .3%          0.0%            0.0%       0.0%           0.0%      9.0%
Hearing problems               Count           2         0            5                     0           2               0          0              0          9
                               % of Total    .6%        0.0%        1.6%                   0.0%       .6%              0.0%       0.0%           0.0%      2.9%
Speech problems                Count           2         0            2                     1           2               0          1              0          8
                               % of Total    .6%        0.0%        .6%                   .3%         .6%              0.0%      .3%             0.0%      2.6%
Total blindness                Count         1         0            2                     6           3               0          1              0          13
                               % of Total    .3%        0.0%        .6%                   1.9%        1.0%             0.0%      .3%             0.0%      4.2%
One eye blind                  Count         28        0            9                     3           2               1          0              0          43
                               % of Total   9.0%       0.0%        2.9%                  1.0%        .6%             .3%         0.0%           0.0%      13.8%
Albino                         Count           3         0            2                     0           1               0          0              0          6
                               % of Total    1.0%       0.0%        .6%                    0.0%       .3%              0.0%       0.0%           0.0%      1.9%
Feet abnormalities             Count         10        1            3                     1           2               0          0              0          17




                                                                              49
                       % of Total    3.2%      .3%       1.0%           .3%       .6%       0.0%     0.0%     0.0%     5.4%
Mental disorder        Count           1         0         0              1         1        0        0        0         3
                       % of Total    .3%        0.0%      0.0%          .3%       .3%       0.0%     0.0%     0.0%     1.0%
Goiter                 Count           1         0         0              0         0        0        0        0         1
                       % of Total     .3%        0.0%      0.0%           0.0%      0.0%     0.0%     0.0%     0.0%     .3%
Nose problems          Count                     0         0              0         1        0        0        0         1
                       % of Total                0.0%      0.0%           0.0%     .3%       0.0%     0.0%     0.0%     .3%
General eye problems   Count           8         0         0              1         0        0        0        0         9
                       % of Total    2.6%       0.0%      0.0%          .3%        0.0%     0.0%     0.0%     0.0%     2.9%
Deformed mouth         Count           1         0         1              0         0        0        0        0         2
                       % of Total     .3%        0.0%     .3%             0.0%      0.0%     0.0%     0.0%     0.0%     .6%
Hip problems           Count           0         0         1              0         0        0        0        0         1
                       % of Total      0.0%      0.0%     .3%             0.0%      0.0%     0.0%     0.0%     0.0%     .3%
Nkhumbumtondo          Count           0         0         0              0         1        0        0        0         1
                       % of Total      0.0%      0.0%      0.0%           0.0%     .3%       0.0%     0.0%     0.0%     .3%
Fire                   Count           2         0         2              0         0        0        0        0         4
                       % of Total    .6%        0.0%     .6%             0.0%      0.0%     0.0%     0.0%     0.0%     1.3%
Limb missing           Count           2         0         0              0         0        0        0        0         2
                       % of Total     .6%        0.0%      0.0%           0.0%      0.0%     0.0%     0.0%     0.0%     .6%
Total                  Count        165       3         82             25        30         2       4         1       312
                       % of Total   52.9%     1.0%      26.3%          8.0%      9.6%      .6%      1.3%     .3%      100.0%




                                                                  50
While there are all these channels of communicating information on HIV/AIDS and
recognizing that there are barriers to accessing information on HIV/AIDS, participants in
FGDs were further asked what they felt were the most appropriate channels for
communicating information on HIV/AIDS to people with disabilities. From the FGDs, a
number of suggestions were made such as:



      That Government should distribute solar radios to people with disabilities or even
       sell these radios at very low prices so that they should not have problems buying
       batteries.



      That magazines and newspapers containing HIV/AIDS materials should be
       distributed to those people with disabilities who can read.



      For those who are visually impaired, it would be appropriate to distribute Braille
       materials to them if they can read.



      For people with hearing problems, pictures would be the most appropriate.



      For those people with disabilities who can hear and talk, it is appropriate that
       arrangements should be made to talk to them.



      There is need that people who are involved in teaching people about AIDS should
       endeavour to visit people with disabilities in their homes.



      That the church should play an important role in teaching people with disabilities
       about HIV/AIDS.




                                             51
Even respondents to the household questionnaire, most of them (approximately 62%) felt
that the radio was the most appropriate way of communicating information on HIV/AIDS
to people with or without disabilities. Participants in FGDs generally felt that while the
radio is an important channel for communicating HIV/AIDS issues, the problem however
is that not everyone has a radio. Rallies were also perceived not to be good channels.



8.2 Presence of HIV/AIDS education activities in the communities


The presence of HIV/AIDS education activities in a community is important as it helps in
the creation of awareness about HIV/AIDS. People with disabilities were therefore asked
whether they have such activities in their areas. Table 8.6 below shows whether
HIV/AIDS education activities are present in the communities or not.


Table 8.6: Any HIV/AIDS Education Activities in Community by Sex by District



               Any HIV/AIDS Education Activities in Community
    SEX                           by sex by District
                     Yes                    No               TOTAL
                N          %           N         %         N         %
    Male       105         50.2       104        49.8     209      100.0
   Female       65         53.7        56        46.3     121      100.0
    Total      170         51.5       160        48.5     330      100.0


From Table 8.6 above, it can be seen that among males 50.2% of the respondents
indicated that these activities were available. The total among females was 53.7%. In
general thus, just more than half the respondents indicated that there were HIV/AIDS
education activities in their areas. The respondents were further asked about who
conducts these HIV/AIDS education activities and these are shown in Table 8.7 below.




                                            52
Table 8.7: Who conducts these HIV/AIDS Education Activities by sex by District


    Who conducts
 HIV/AIDS Education                         Sex of Respondent
      activities
                                 Male              Female       Total
                           N            %      N            %      N       %

Peers                       22     20.8       14         21.2      36    20.9
NGOs                        44     41.5       22         33.3      66    38.4
Drama Groups                22     20.8       20         30.3      42    24.4
Other                       15     14.2        8         12.1      23    13.4
Health Facilities           2       1.9        2         3.0        4     2.3
Clubs                       1       0.9        0         0.0        1     0.6
         Total             106     100.0      66        100.0     172    100.0


It can be seen from Table 8.7 above that male respondents reported that these activities
are done by NGOs (41.5%), peers (20.8%), drama groups (20.8%), health workers (1.9%)
and clubs (0.9%). For females, the respective percentages were 33.3%, 21.2%, 30.3%,
3.0% and 0.0%. Overall it can be seen that most of the health education on HIV/AIDS is
done by peers, NGOs and drama groups. Respondents were further asked if at all they
participate in these HIV/AIDS education activities. Results are shown in Table 8.8 below:


Table 8.8: Do you participate in HIV/AIDS Activities in community by Sex by
District


           Do you participate in HIV/AIDS Education Activities in
 SEX                   Community by sex by District
                  Yes                 No            TOTAL
             N          %          N       %       N        %
 Male        37        35.9       66      64.1    103     100.0

Female        18       30.0          42       70.0       60     100.0
 Total        55       33.7         108       66.3      163     100.0

It can be seen from Table 8.8 above that in terms of participation in these activities, most
male respondents (64.1%) said that they did not participate and even more females
(70.0%) said that they do not participate. A number of reasons were given by the


                                             53
respondents as to why they do not participate in these health education activities and
these are shown in Table 8.9 below:


Table 8.9: Reasons for not participating in health education activities


Reason for not        Sex of respondent                           Total
participating
                      Male                  Female
Because            of 25 (36.8%)            11 (26.2%)            36 (32.7%)
disability
No time for that      34 (50.0%)            21 (50.0%)            55 (50.0%)
Does not involve me 5 (7.4%)                3 (7.1%)              8 (7.3%)
Do not know           1 (1.5%)              5 (11.9%)             6 (5.5%)
No transport          2 (2.9%)              1 (2.4%)              3 (2.7%)
People were enough    1 (1.5%)              1 (2.4%)              2 (1.8%)
Total                 68 (100.0%)           42 (100.0%)           110 (100.0%)


The reasons, as can be seen from Table 8.9 above, for not participating among males
ranged from non-availability of time (50.0%), disability (36.8%), not being invited
(7.4%), lack of transport (2.9%) and those who did not know why they were not
participating (1.5%). Among the females, a high proportion (50.0%) reported the non-
availability of time for the activity. This was followed by the disability (32.7%), not
being invited (7.1%). This shows that disability is one of the major reasons why
respondents did not attend HIV/AIDS education activities.


8.3 Transmission of HIV/AIDS


This investigation also sought to find out if people with disabilities know the risk of
getting HIV/AIDS and how HIV/AIDS can be transmitted. Table 8.10 below shows what
respondents mentioned as modes of transmission for HIV.




                                          54
Table 8.10 Modes of transmission of HIV

Mode of transmission                       Sex of respondent
                                           Male             Female         Total


                                           N       %       N        %      N       %

Sex without a condom                       95      46.3    58       48.3   153     47.1
Sex with a condom                          0       0.0     2        1.7    2       0.6
Mosquito bite                              1       0.5     0        0.0    1       0.3
Sharing toothbrush                         12      5.9     6        5.0    18      5.5
Kissing                                    1       0.5     0        0.0    1       0.3
Blood transfusion                          8       3.9     4        3.3    12      3.7
Sharing razor blades                       25      12.2    19       15.8   44      13.5
Using unsterilised syringes                12      5.9     3        2.5    15      4.6
Mother to child                            1       0.5     1        0.8    2       0.6
Sexual promiscuity                         37      18.0    22       18.3   59      18.2
Caring for people living with AIDS         10      4.9     4        3.3    14      4.3
Eating with an HIV+ person                 1       0.5     0        0.0    1       0.3
Other                                      2       1.0     1        0.8    3       0.9
Total                                      205     63.1    120      36.9   325     100.0


While a number of modes of transmission of HIV were mentioned such as sharing
toothbrushes, blood transfusion, caring for people with AIDS among others, a large
proportion of respondents (153, 47.1%) mentioned that HIV can be transmitted through
sexual intercourse. The 1996 MKAPH disintegrated data according to sex and according
to this study, 71.8% of the women aged 15-49 and 48.6% of the men aged 14-54 said that
HIV is transmitted through sex with multiple partners. 23.9% of the women aged 15-49
and 45.9% said that HIV is transmitted through sexual intercourse




                                           55
Participants were further asked whether there was a possibility for them to contract
HIV/AIDS. The majority of the respondents (188, 55%) said that there was no possibility
for them to contract HIV/AIDS because of a number of reasons including that they had
never had sex before, that they are faithful to their partners, that they are single and that
they always make use of condoms. A good proportion of respondents (113, 33%) said
that they felt that there was a possibility of contracting HIV/AIDS because they did not
know their partners‟ past life styles, and women in particular said that they needed money
from men and that some of them used sterilized syringes.



The transmission of HIV from the mother to child is the major cause of AIDS in children.
Respondents were therefore asked whether HIV/AIDS can be transmitted from a mother
to a child. Results from this study (Table 8.11 below) show that among the males (57.4%)
said „Yes‟, 10.3% said „No‟, 10.8% said „Sometimes” and 21.6% had no idea.
Corresponding proportions among females were 70.8%, 12.5%, 7.5% and 9.2%,
respectively.




                                             56
Table 8.11: Can HIV be transmitted from Mother to child by sex by district


          Can HIV be transmitted from mother to child by
 SEX                      sex by district                              Total
             Yes        No       Sometimes     Don’t
                                               Know
           N    %    N     %      N       %   N      %              N      %
          117 57.4 21 10.3 22            10.8 44    21.6           204    100.0
 Male
Female 85 70.8          15   12.5      9     7.5     11     9.2    120    100.0
Total  202 62.3         36   11.1     31     9.6     55    17.0    324    100.0


Those that indicated that there was a possibility that HIV can be transmitted from mother
to child gave several modes of how a mother can transmit HIV/AIDS to a baby. Among
males 35.9% indicated that this could happen during breastfeeding, 27.1% said during
pregnancy, 20.0% at birth and 2.9% during intercourse.               Amongst the female
respondents, 49.1% indicated that transmission is through breastfeeding, 2.8% during
intercourse, 25.5% during pregnancy and 15.1% during delivery.


During the FGDs, participants were also asked to explain how HIV is transmitted from
one person to another. In all the FGDs it was mentioned that HIV is mainly transmitted
through unprotected sexual intercourse with multiple partners and sharing of sharp
instruments such as razor blades, syringes and ear piercing apparatus. There were
however some issues that came from specific FGDs for example in an FGD with women
in TA Mzukuzuku, participants said HIV can also be transmitted through blood
transfusion, during delivery and breastfeeding.        These women however said that
sometime back at the antenatal clinic they were being told that breast milk is free from
diseases but these days they say that children can contract diseases through breast milk.
In another FGD with men in the same TA, participants said that HIV can also be
transmitted through the use of local unsterilised injections and they further said that there
are cultural practices such as wife inheritance and the ceremony of “kumeta” (meaning
cutting hair after a funeral has occurred) during which one razor blade is used to cut hair
on 10 or more people. This was also mentioned by people with disabilities in TA
Mabulabo in the same district.


                                             57
8.4 Disability and Risk of HIV/AIDS


The study also sought to find out whether people living with disabilities think that their
disability increases their risk of contracting HIV. The majority of the males (89.7%) said
„No‟ and 86.8% among females also said „No‟ as can be seen from Table 8.12 below.



Table 8.12: Does disability increase your risk of contracting HIV by sex by district


               Does your disability increase your risk of contracting HIV by sex by
  SEX                                         District
                      Yes                         No                    TOTAL
                 N            %              N            %          N          %
  Male          21           10.3           182          89.7       203       100.0
Female          15           13.2            99          86.8       114       100.0
Total           36           11.4           281          88.6       317       100.0

During the FGDs participants felt that the only group of people with disabilities who are
at risk are those with hearing impairments since most of them never went to school and
because of this most of them do not know much or indeed anything about HIV/AIDS.
They explained that this is why whenever they are proposed to, they just accept without
knowing that they are at risk of contracting HIV/AIDS. In some FGDs conducted in
Zomba and Mzimba, it was pointed out that the people with disabilities who are at risk of
getting HIV/AIDS are mainly those who are visually impaired because they can also go
to a beer drinking place and while there they can get tempted and have sex with a bargirl.
Although there have been rumours that people with disabilities are at risk of contracting
HIV/AIDS because of the prevailing belief that if one has AIDS and has sex with a
person with a disability then he will be cured, it was mainly in Ntcheu and Ntchisi where
this issue came out.




                                           58
8.5 Cultural Beliefs/Practices


This study was also interested in knowing whether there are cultural beliefs/practices that
predispose people with disabilities. Among the males 17.2% said that these cultural
beliefs do exist and the corresponding proportion among females was 10.8%. In general
thus, as far as respondents were concerned, there exist very few cultural practices or
beliefs that predispose people with disabilities. For those who mentioned that these
cultural practices exist cited kuchotsa fumbi, kulowa kufa and other traditional rites.


The respondents to the household questionnaire were further asked whether there are any
cultural beliefs existing in their communities that can prevent them from adopting
HIV/AIDS preventive measures. The majority of the respondents (80.6% male and 81.9%
female) said that there are no any cultural beliefs that can prevent them from adopting
HIV/AIDS preventive measures. It can also be seen that very few respondents said that
there does exist cultural beliefs that can prevent them from adopting HIV/AIDS
prevention strategies. Those male respondents who indicated knowledge of such
beliefs/practices pointed to wife inheritance (45.2%), Bible and religious teaching (9.5%),
influence of parents (16.7%), initiation ceremony (7.1%) and non-use of condoms
(16.7%). Among females, however, most, 52.4% pointed to wife inheritance, 9.5% to
initiation ceremonies, 23.8% to religious beliefs and 4.8% non use of condoms.


8.6 Prevention of HIV Transmission

Respondents to the household questionnaire were also asked about how the transmission
of HIV can be prevented. Results show that the knowledge of how people can avoid
contracting HIV was high among people with disabilities interviewed. Among the males
for instances 42.9% indicated that abstinence is one way of avoiding contracting or
transmitting the disease. This was followed by use of condoms (30.4%), avoiding sex


                                             59
with multiple partners (13.4%) and avoiding sharing of razor blades (6.0%). Amongst
women, condom use (36.1%) was number one followed by abstinence (29.5%), avoiding
multiple sexual partners (14.8%) and avoiding sharing razor blades (3.3 %). There are
three major ways of preventing the transmission of HIV and these are abstinence, being
faithful to one‟s sexual partner and making use of condoms. What is worrying is that less
than half of the respondents mentioned these methods of preventing transmission. In the
2000 DHS, among men the use of condoms and limiting the number of sexual partners
was mentioned by 76.6% and 81.8% respectively while among the women it was 86.3%
and 83.6% respectively. In the current study the use of condoms and limiting the number
of sexual partners was mentioned by 31.2% and 13.7% respectively among male
respondents while among females the corresponding figures were 29.4%and 16%
respectively. These figures are very low compared to the general population.


During the FGDs participants also mentioned these methods of preventing the
transmission of HIV from one person to another. Those which were commonly
mentioned were that people should avoid sharing razor blades, the use of condoms during
sexual intercourse, abstinence and that whenever bathing a patient with multiple wounds,
one should wear gloves. Some male participants in an FGD conducted in TA Mlumbe
added that it is not good to marry beautiful women because everyone is after her and they
advised that it is better to marry ugly women because they are likely to be HIV/AIDS
free. In general the knowledge about the prevention of the transmission of HIV among
people with disabilities is generally high.


8.7 Knowledge of people with disabilities having AIDS or having died of AIDS


The survey also wanted to find out if respondents knew any person with a disability that
had AIDS. Approximately 91.2% of the men and 95.0% of the women said that they did
not know anyone with a disability who had AIDS while 76.6% of the men and 78.5% of
the women said that they knew someone without a disability who had AIDS.
Respondents mentioned a number of factors that made them to know that someone had
AIDS and these included loss of weight, diarrhea, hearing from other people, being told


                                              60
by the patient himself/herself. What also came out from this study was that the
knowledge that someone had AIDS did for many not affect their relationship with that
affected person.



The knowledge about someone who had AIDS however helped the respondents to change
their behaviour. For instance, 32.0% of males said that it made them not to engage in sex
before marriage and 21.9% said it made them not have multiple partners. Even higher
proportions were reported amongst females where 44.4% did not engage in sex before
marriage and 27.3% did not have multiple partners.



In the study the interest was also to know if they knew any person without or with a
disability who had died of AIDS and how that person was related to him or her. From the
sampled people with disabilities, only 10.6% males and 6.0% females indicated that they
knew somebody with a disability who had died of an AIDS related illness. But a
substantial proportion (47.2%) of males and 49.2% of females knew of someone without
a disability who died of an AIDS related illness.



In the second scenario, those that reported knowing somebody amongst the men 33.0%
just assumed this was the case. Another 28.0% said that people had told them, 21% said
a person told them and 16.0% said they knew from hospital records. Corresponding
proportions amongst females were 28.6%, 27.0%, 22.2% and 17.5% respectively. The
last item of discussion on this section was the relationship of the person who died and the
respondent. Amongst males, 50.5% said there was no relation while 39.6were related
and 9.9% did not specify. Corresponding proportion amongst females were 46.0%,
42.1% and 9.1% respectively.




                                            61
8.8 Care of people who are chronically ill


In the course of discussing HIV/AIDS issues, the issue of care for the sick was also
investigated. The study has found that 24.9% of males and 35.0% among females had at
one point or another looked after somebody who had been or was chronically sick.
Caring for people who are sick is traditionally a responsibility of women and it is not
surprising that in this context a higher proportion of women reported that they had ever
looked after a chronically ill person. The respondents to the household questionnaire who
said that they had looked after chronically ill persons mentioned a number of problems
that they faced while looking after the sick and these problems were food shortages, the
lack of money, long stay at the hospital, bathing and dressing the sick. Most people
indicated that they cope with these problems through perseverance, prayer, help from
other people, engaging in ganyu labour, and doing nothing.


8.9 Voluntary counseling and testing


Respondents to the household questionnaire as well as participants in the FGDs were
asked if they knew voluntary counseling and testing. Seventy percent of the respondents
(n=317) said that they knew what voluntary counseling and testing is while only 30%
said that they did not know. For those who said that they knew voluntary counseling and
testing they were further asked what they knew about VCT. Most of those who said that
they knew VCT (87%) said that it is a place where people go for blood testing and
counseling, 12.4% said that it is a place where one can know his sero status, 0.3% said
that it is a place where one can know his blood group while a further 0.3% said that they
did not know. Of those who said that they knew VCT, the majority (73.5%) said that they
also knew where they could go for VCT services, with most of them (60.9%) mentioning
health facilities followed by MACRO (21.0%) as possible places where they could go for
VCT. Other places which were mentioned included NAPHAM and BLM.



                                             62
Those who knew VCT were further asked how they knew about VCT. Fifty three percent
of these respondents said that they knew VCT through the radio while 30.5% said that
they knew VCT through health facilities. Other channels through which they knew VCT
included through teachers, peer youth groups, party leaders, religious leaders, parents,
friends, NGOs and drama.



Respondents to the household questionnaire were further asked whether they have ever
gone to a health facility for an HIV test. Results show that 89.2 percent had never gone
for an HIV test while 10.8 percent said that they underwent the test and most of those
who went for the test (97.1%) said they got the results. If these results are disaggregated
according to sex, it is found that 11.3% of the male respondents had gone for the HIV test
while the corresponding figure for females was at 3.7%. According to the DHS of 2000
15.2% of the men had gone for the HIV test while the corresponding figure for women
was 8.5%. This shows that the proportion of people with disabilities who had gone for
HIV test is generally lower than in the general population. Those who took the HIV test
were further asked what influenced them to undergo the test and the two major reasons
for taking the test were that they just wanted to know their sero status (51.5%) and that
they were also prompted by their sickness (33.3%).



Those who never had the HIV test were asked to explain why they had never had the test.
Approximately 42% of the respondents said that they did not go for the HIV test because
they thought that they were okay. The other reasons which were given by respondents
included old age (1.7%), not knowing what VCT is (19.1%), not being able to walk
(5.9%), no transport (4.9%), no one to guide respondent (2.1%), the belief that they will
pump all the blood from the body (1.0%), being still young (0.3%), laziness (1.4%), fear
(1.0%), not wanting the test (2.4%) etc. These people were also asked what would
influence them to go for the test. A number of factors were given such as if one wants to
know his or her sero status (32.9%), having sex with someone one is not sure of (24.4%)
and if he or she gets sick (18.6%). Other reasons which were mentioned by respondents


                                            63
included if spouse or sexual partner died of HIV/AIDS related illnesses, if one wants to
marry and others said nothing.



On HIV test results, the majority of respondents (86%) said that they would want to know
their results while 14.0% said that they would not want to know. Respondents were
further asked who they would tell if they were found HIV. Most of the respondents said
that they would tell their parents (107, 31.4%) and this was followed by spouses (26.1%),
children (7.3%) and friends (5.9%).



9.0 SEXUAL AND REPRODUCTIVE HEALTH


This section outlines the experiences and perceptions of people with disabilities about
sexual and reproductive health issues.


9.1 Sexual Intercourse Encounters


The study shows that most people with disabilities are sexually active with 76% reporting
that they have had sexual intercourse and 24% of the respondents stating that they have
never had sexual intercourse. The proportion of male respondents who reported having
had sexual intercourse was lower at 67.8% compared to female respondents at 88.5%.
The main reason for having sexual intercourse can be placed into three categories:
biological maturation/urges (12.5%), relationships and marriage (45.9%) and need for
experience (practice) (14.2%). Negative reasons cited are more somber with 2% having
reported being raped and 0.4% having had sexual intercourse “in order to buy food”. A
further 1.7% did not have any reason for having sexual intercourse. Figure 9.1 below
provides a breakdown for the reasons of having sexual intercourse.




                                            64
              Figure 9.1: Reasons for Being Involved in Sexual Intercourse



                            Reasons for Being Involved in Sexual Intercourse


     I wanted money to buy food
                       No reason
                           Raped
           My girlfriend/boyfriend
            I was in love with him
                           Nature
         He was my husband/wife
          Wanted to have a Baby
                  Just to Practice
                           Desire
  I’m married so nothing I can do

                                     0%   5%        10%     15%       20%      25%   30%




These results were disaggregated further into sex of respondent as shown in Table 9.1
below:




                                               65
Table 9.1: Reasons for being involved in sexual intercourse

Reasons for            Sex of Respondent                             Total
engaging in sex        Male                   Female
                       N         %            N          %           N          %
No reason              1         0.7          3          2.9         4          1.7
Nature                 11        8.1          6          5.8         17         7.1
I wanted a baby        9         6.7          12         11.5        21         8.8
I am married and       21        15.6         45         43.3        66         27.6
there is nothing I
can do
I was in love with     12         8.9         4          3.8         16         6.7
him/her
He was my              8          5.9         11         10.6        19         7.9
husband/wife
I wanted money to      0          0.0         1          1.0         1          0.4
buy food
I was mature           10         7.4         3          2.9         13         5.4
Desire                 29         21.5        7          6.7         36         15.1
Just to practice       27         20.0        7          6.7         34         14.2
My                     5          3.7         3          2.9         8          3.3
girlfriend/boyfriend
Raped                  2          1.5         2          1.9         4          1.7
Total                  135        56.5        104        43.5        239        100.0



It can be seen from Table 9.1 that a higher proportion of female respondents (43.3%)
were engaged in sexual intercourse because they were married and that there was nothing
they could do to avoid engaging in sex. The proportion of male respondents who gave
this reason was lower at 15.6%. the two major reasons why male respondents were
engaged in sex were desire (21.5%) and the need for practice (20.0%).



9.2 First Sexual Encounters

On average, first sexual intercourse encounters were experienced between the ages of 15
to 20 years old. Fourteen percent (14%) of respondents had their first sexual encounter at
the age of 15 years, 11% at the age of 20 years old, and 10.8% at the age of 18 years old.
However 1.9% of the respondents did report having their first sexual encounter at the age
of 27 years old and the 0.9% between the ages of 5 and 10 years old. For the majority of


                                           66
the respondents (82.8%), these sexual intercourse encounters were out of their own
choice with only 17.1% reporting to have been forced into having sexual intercourse
against their will.

9.3 Past and Current Relationship Status

For the 82.8% of the respondents who have willingly had sex as stated above, 75% have
been involved in an intimate love relationship while 25% have not. Coincidentally, 90%
of these sexual relationships are encountered with people without disabilities. Only 10%
of the respondents indicated that they had had sex with someone with a disability (see
Figure 2).


                      Figure 2: Intimate/Love Relationships/Marriage

                         Intimate/Love Relationships/Marriage

        100%

         80%

         60%                                                    Relationship Status
         40%                                                    Not Denied Sex

         20%

             0%
                  Involved in     Partner not        Partner
                  relationship     Disabled          Disabled




The responses to the question “Are you or have you been involved in an intimate/love
relationship/marriage?” were further disaggregated according to sex of the respondent.
Sixty eight percent (68%) of the male respondents (N=197) said that they were while the
corresponding proportion for female respondents was 86.0%. A higher proportion of
female respondents therefore indicated that they were in an intimate relationship
compared to male respondents and this may point to the difficulties that men might face
when getting into intimate relationships.


                                                67
For the 25% who have not been involved in intimate/love relationship, 18.5% reported
that this was directly related to their disability while 81.5% stated that this was not
because of their disability.


These results show that forming intimate relationships do not appear to be difficult for
people with disabilities noting that 81.1% said that they have had no problems. However,
10.8% acknowledged that they did have difficulties with regard to forming these
relationships. For the 81.1% who had no problems, reasons given ranged from good
behaviour, foresight into the relationship, arranged marriages, and personal victory. The
following list provides a breakdown of the reasons given.


      Because of my brother (1.8%).
      Because of my behaviour (9.9%).
      Because I knew what the man wanted from me (1.8%).
      Because he wanted to marry me (1.4%).
      My parents arranged everything for me (0.5%).
      Because I proposed and she accepted (0.9%).
      Can‟t remember (0.5%)


During the FGDs, participants were also asked if people with disabilities have or
experience some problems in establishing intimate relationships. In an FGD with people
with disabilities in TA Chilooko in Ntchisi, male participants said that they do indeed
experience some problems. They explained that one cannot find a lady close to his home,
hence there is need to walk to some other place to find a lady that he can fall into a
relationship with. People with disabilities who have problems with mobility will therefore
have problems in establishing such intimate relationships. For those who have visual
impairments, participants in this FGD further said that people would not want to engage
in intimate relationships with him or her because they argue that:


       “Nkavutika ndekha kugwira ntchito” meaning I will do all the work myself).



                                            68
In another FGD with persons with disabilities, participants said that it is very difficult for
men with disabilities to establish intimate relationships as in most cases they are denied
by women. In the case of women even if they are married, their husbands may have other
sexual partners when they complain, their husbands just tell them that they will divorce
them. As expressed in other FGDs, it is extremely difficult for persons with disabilities to
establish intimate relations with those who are not disabled because people with
disabilities are generally viewed as useless and unproductive. Some girls even laugh at
their friends who are married to men with disabilities. In addition to some of the issues
which have been discussed in this section, in another FGD conducted with people with
disabilities conducted in TA Mabulawo, participants added that those who are dumb
cannot propose. While some participants expressed that people with disabilities have
these problems in establishing intimate relationships, in some FGDs for example
conducted with people with disabilities in TA Makhuwira in Chikwawa, participants said
that people with disabilities do not experience a lot of problems in establishing these
relationships if they have money.


In addition to finding out if respondents had problems forming intimate relationships,
respondents were also asked whether they had any problems during sexual intercourse.
Approximately 93% of respondents reported having no problems during sexual
intercourse with approximately 7% saying that they faced problems. Those who faced
problems during sexual intercourse cited reasons such as not liking sexual intercourse,
feeling pain while having sexual intercourse, complications when making love while
others said that their disability is a problem in itself when it comes to having sexual
intercourse. While this is so, 55.9% admitted that it was not easy to form sexual
relationships. The main reasons for this were mainly fear of HIV/AIDS (37%) and
marriage. However the range of reasons are presented in Figure 3 below. Most of the
responses are related to the individuals‟ negative perception of the self.




     Figure 3: Reasons Why Sexual Relationships Are Not Easily Entered Into



                                             69
                                                          Sexual Realtionships


                                 Don't have any
                           Never had sex before
                                       It's nature
                       Afraid of getting pregnant
                 Haven't gone outside marriage
                          I'm afraid of HIV/AIDS
                Grils always refuse my proposal
                                        I am sick
                  Can no onger satisfy a woman
                                     Feeling shy
                   I feel sick when I think of sex
                           I feel pain in my body
                            Because of disability
  Think because of my disability I can't have sex

                                                     0%     5%      10%      15%   20%   25%   30%   35%   40%




On the other hand, 44.1% did state that they have no problems forming sexual
relationships. Reasons for this put simply are egoistic with 61.8% stating that they “have
no problems” while 12.4% “know how to propose” and 10.1% are married. Other reasons
cited were:


       Don‟t have STDs (4.5%).
       By then I had no problem with my manhood (4.5%).
       It was time to have sex (4.5%).
       Because we loved each other (2.2%).

As has been stated earlier, most respondents (92.9%) reported having no problems during
sexual intercourse with 7.1% stating that they did have problems mainly pain in the body
when having sexual intercourse (42.9%). Only 5.2% reported having had sex against
their own will while 94.8% have had sex willingly. The circumstances identified ranged
manly from rape, having sex while ill or during menses and threats.




                                                            70
                   Figure 3: Circumstance Leading to Unwanted Sex

                                Circunstances For Sex Against Own Will


          45%
          40%
          35%
          30%
          25%
          20%
          15%
          10%
           5%
           0%
                 About to    I was sick   Threatened      Just forced    Raped    People about
                mensturate                to end affair                            to find us


                                 Cricumstannces                    Sex Against Will




9.4 Knowledge about condoms and condom use

9.4.1 Knowledge About Condoms

Awareness about condoms among people with disabilities is quite high. However, a
sizeable proportion of the sample admitted to not knowing what a condom is. That is,
81.7% stated that they knew what a condom was while 18.3% professed ignorance.
When this is disaggregated according to sex of the respondent, it was found that there are
no marked differences between male and female respondents as 82.6% and 80.3% of the
male and female respondents respectively mentioned that they knew condoms. The
MKAPH study which was conducted in 1996 revealed that 91.2% of the female
respondents and 97.9% of the male respondents knew about condoms. General
knowledge about condoms is therefore lower among people with disabilities as has been
demonstrated in this study. Although 81.7% knew what a condom was, only 57.9%
actually reported knowing how to use it while 42.1% did not know how to use a condom.
A higher proportion of men (64.1%) reported knowing how to use condoms compared to
female respondents at 47.5%.




                                                     71
The main source where individuals learnt about condoms was through hospital staff
followed by radio and youth groups. Table 9.2 below illustrates the distribution.

Table 9.2: Sources of learning about condom use

Where they learnt how to use     Sex of Respondent                 Total
a condom                         Male          Female
Through peer groups              17 (15.7%)    2 (4.2)             19 (12.2%)
Hospital staff                   50 (46.3%)    27 (56.3%)          77 (49.4%)
Radio                            20 (18.5%)    11 (22.9%)          31 (19.9%)
Grocery/shop                     2 (1.9%)      0 (0.0%)            2 (1.3%)
Drama                            1 (0.9%)      0 (0.0%)            1 (0.6%)
Condom wrapper                   1 (0.9%)      0 (0.0%)            1 (0.6%)
Friends                          1 (0.9%)      1 (2.1%)            2 (1.3%)
Training school                  0 (0.0%)      1 (2.1%)            1 (0.6%)
Bargirl                          0 (0.0%)      1 (2.1%)            1 (0.6%)
Teacher                          1 (0.9%)      0 (0.0%)            1 (0.6%)
BLM                              1 (0.9%)      0 (0.0%)            1 (0.6%)
Other                            14 (13.0%)    5 (10.4%)           19 (12.2%)
Total                            108 (100.0%) 48 (100.0%)          156 (100.0%)

The above table shows that 49.4% of the respondents learnt about using condoms through
hospital staff, with a higher proportion of females (56.3%) than males (46.3%). For the
radio, it was also a greater proportion of females (22.9%) who learnt through this method
compared to males (18.5%). It is apparent that while there were other channels through
which both males and females learnt how to use condoms such as through drama, friends,
BLM, teachers etc, the major channels through which they learnt this were hospital staff,
the radio and peer groups. During the FGDs, participants also referred to the same
sources of information as mentioned by the respondents to the household questionnaire.

9.4.2 Condom Use

Condom use among people with disabilities is very low with 72.8% having never tried
using a condom and only 27.2% having used a condom. Among females, 21.4% of the
respondents have ever used condoms while among the males the corresponding
proportion was 30.5%. For those who have used a condom, the two reasons were given
namely to protect from HIV/AIDS (66.2%) and as a family planning method (33.8%).



                                           72
Reasons for not having tried to use condoms are linked to the lack of personal risk either
because they have “never had sex before” and because they are “abstaining;” or personal
dislike/discomfort and dislike by husband; or simply because they have “no use for
them.” Other reasons for the lack of use is rooted in misconceptions such as “condoms
are used only by men,” and type of disability hampering the use of condoms such as
blindness.


Table 9.3 below presents the various reasons why they never tried to use condoms.

Table 9.3: Reasons For Low Condom Use

                               Reason                                    %
    Too old                                                              1.6
    Don‟t know how to use it                                            4.8%
    I‟m always with my husband                                          6.9%
    Don‟t have a partner                                                7.4%
    Never use condoms in my times                                       1.1%
    I abstain                                                           0.5%
    My partner and I trust each other                                   5.3%
    Take heed of my parents advice                                      0.5%
    Heard they cause sores on private parts                             1.1%
    Never had sex before                                               15.4%
    No use for them                                                    11.2%
    Don‟t like it                                                      14.9%
    Not always                                                          0.5%
    Not promiscuous                                                    12.8%
    Husband doesn‟t like them                                           2.1%
    Causes pain                                                         1.1%
    Faithful to partner                                                 1.1%
    Still young                                                         3.2%
    Condoms only used by men                                            0.5%
    I‟m normal                                                          2.1%
    AIDS wasn‟t common like today                                       0.5%
    Use other Family planning method                                    1.1%
    Increases number of viruses in the body                             0.5%
    Never seen it before                                                2.7%
    I‟m blind                                                           0.5%
    Not locally found                                                   0.5%




                                           73
From the above table, it can be seen that the major reason for not having tried to use
condoms were never had sex before, not liking to use condoms and that respondents
reported that they were not all that promiscuous. On use of condoms, some participants in
the FGDs said that some people with disabilities do not like using condoms because they
say that they are already dead and why should they use condoms.


9.4.3 Frequency in condom Use

While condom use is relatively low, over half of the interviewees use condoms on a
regular basis. That is, 30.1% stated that they use condoms very often while 1.4%
reported using 12 condoms in a month, and 16.4% estimate using condoms at least one to
two times a month. However, 37% did report not to be using them very often and 15.1%
do not use condoms at all. It is therefore important that people with disabilities should be
told to use condoms correctly and consistently to prevent contracting STDs including
HIV/AIDS.


9.4.4. Difficulties in Using Condoms


In the household questionnaire, respondents were also asked if they find any problems at
all in using condoms. Seventy seven percent (77%) said that they do not experience any
difficulties using a condom while 23% did report difficulties describing them as being
related to the different types of disabilities (89.7%) specifically for those who are blind
(10.3%) who would be “unable to tear a condom.”


During the FGDs participants were also asked whether people with disabilities have
problems in using the condoms. In most of the FGDs, participants explained that there are
some people with disabilities who do not find any problems in using a condom while at
the same time there are others who face problems as far as use of condoms is concerned.
The only way to solve such problems is to teach people of the opposite sex to help them
whenever they want to use condoms. In an FGD with men in TA Mlumbe, participants
mentioned that those who are visually impaired would not face any problems when using



                                            74
the condoms because they will be able to wear them, the problem as mentioned in an
FGD with women in TA Mzukuzuku, being that they may not be able to see the expiry
date on the condom. However they mentioned that people with disabilities whose arms
have been severely affected are the ones who will have problems especially relating to
how to wear the condom. They therefore also suggested that the problem can be
overcome only if the partner can help putting the condom on the person with disabilities.


While participants in most FGDs said that condoms are important for protection against
AIDS and unplanned pregnancy, in a number of FGDs for example that with men in TA
Mlumbe some participants said that condoms are not dependable as they can burst
without one being aware and hence one can get pregnant or even contract HIV/AIDS.
Although condom use among people with disabilities is low, in FGDs conducted with
both people with and without disabilities, participants said that it is appropriate for people
with disabilities to use condoms.


9.4.5 Access and Sources

Condoms are seemingly readily available in all areas. At least three quarters (76%) of the
respondents said it was easy to get condoms although 24% did not have ready access to
condoms. The main sources where condoms are obtained are from health facilities (54%)
and groceries/shops (32.1%). 1.5% did indicate that there was other sources but did not
specify with .4% citing the trading center as an alternate source. However, 12.1% said
that they did not know where they could get condoms for themselves.




                                             75
Figure 4: Sources of condoms

                            Sources Where Condoms are Available
                               2%

                                    12%
                                                             Don't know
                      32%
                                                             Health Facility


                                                             Grocery/Shop
                                      54%
                                                             Other




The data on sources of condoms was further disaggregated according to sex of
respondent as shown in Table 9.4 below:


Table 9.4: Where condoms are available by sex of respondent

                      Sex of respondent
Source of condoms     Male                    Female                  Total
                      N          %            N          %
Do not know           16         9.5          16         16.5         32       12.1
Health facility       94         56.0         49         50.5         143      54.0
Grocery/shop          56         33.3         29         29.9         85       32.1
Trading centre        1          0.6          0          0.0          1        0.4
Other                 1          0.6          3          3.1          4        1.5
Total                 168        100.0        97         100.0        265      100.0

It can be seen from Table 9.4 that a good proportion of females (16.5%) did not know
where condoms were available in their community compared to a proportion of 9.5% of
the males. It can also be seen that higher proportions of males, namely 56.0% and 33.3%
mentioned health facilities and grocery shops as places where condoms are available in
their communities compared to 50.5% and 29.9% respectively among the females. As
was mentioned earlier, health facilities and shops are the major sources where condoms
are available within communities.




                                            76
9.4.6 Storage of Condoms


Although 58% knew how to use a condom, and 27% actually used condoms, only 20%
knew how to store condoms. Eighty percent (80%) of the interviewees reported not
knowing how to store a condom. While 37.2% stated that condoms should be stored in a
cool dry place, other ways of keeping condoms as mentioned by respondents to the
household questionnaire were:


       Keep them in a bag (21.7%).
       Store them under a pillow case (15.2%).
       Kept in the house away from children (13%).
       Keep condoms in a hiding place (13%).


9.4.7 Sexually Transmitted Infections (STIs)

AIDS, gonorrhea (chizonono), syphilis (chindoko), and buboes (mabomu) are on average
the most commonly known STIs with AIDS topping the list. Interestingly, 7.1% of the
respondents did not know any STIs.                        Figure 6 below shows the different sexually
transmitted infections mentioned by respondents.


                       Figure 6: Known Sexually Transmitted Diseases

                                                 Known Sexually Transmitted Diseases



       30%
              25.5%                   24.5%

       25%
                         21.6%

       20%
                                                15.2%

       15%



       10%                                                                                                             7.1%


       5%                                                                              2.6%     2.3%
                                                            0.6%        0.3%                                0.3%

       0%
             AIDS     Chindoko   Chizonono    Mabomu    Chikhutula   Tsempho     Mauka        Songea   Chiluwe     Don't Know




                                                             77
This data was further disaggregated according to sex as can be seen from Table 9.5
below:
Table 9.5: Known sexually transmitted infections by sex of respondent


                      Sex of respondent
Name of STI           Male                   Female                Total
                      N          %           N          %          N          %
AIDS                  48         24.7        31         26.7       79         25.5
Chindoko              40         20.6        27         23.3       67         21.6
Chinzonono            43         22.2        33         28.4       76         24.5
Mabomu                34         17.5        13         11.2       47         15.2
Do not know           16         8.3         6          5.2        17         7.1
Chikhutula            1          0.5         1          0.9        2          0.6
Tsempho               1          0.5         0          0.0        1          0.3
Mauka                 6          3.1         2          1.7        8          2.6
Songea                5          2.6         2          1.7        7          2.3
Chiluwe               0          0.0         1          0.9        1          0.3
Total                 194        100.0       116        100.0      310        100.0


What is apparent from Figure 6 and Table 9.5 is that the most commonly mentioned
diseases by both male and female respondents were AIDS, chindoko, chinzonono and
mabomu. The table further shows that relatively higher proportions of females mentioned
AIDS, chindoko and chinzonono. Mabomu was the only major infection that was
mentioned by a higher proportion of male respondents.


Some of the STIs mentioned are quite difficult to provide a concrete medical equivalent
because some of the STIs are synonymous with the area. That is, the same STI can refer
to something different depending on the region, community or tribe in Malawi. The
following translations presented here are general medical interpretations of the locally
coined sexually transmitted diseases mentioned by respondents.




                                          78
         Chikhutula – Medical equivalent is seen as a form of gonorrhea where pus is
          discharged with force at once.


         Tsempho – Medical equivalent is malnutrition believed to be caused when
          husband/wife is promiscuous and has multiple partners. The thinking is that when
          the husband and wife do have sexual intercourse there is little or no compatibility
          and it results in tsempho.


         Mauka – Medical equivalent is Trichomonas Vaginalis (“Trich”) – yellowish
          discharge sometimes accompanied by itching, soreness, and painful urination.


         Songea – An STD that gets its name from soldiers returning from war having
          fought in a place called Songea – hence the name Songea.


         Chiluwe – Genital warts


These are the diseases that are well known in the sites where this study was done.


9.4.8 Source of information about STI


The main source for information about the known STIs was the radio followed closely by
health facilities. Approximately 38% of the people mentioned the radio while 20.4%
mentioned health facilities as their source of information for STIs. Other popular, yet
more informal sources mentioned included friends (14.4%), parents (9.9%) and teachers
(5.1%).      One extreme case mentioned personal learning experience from having
contracted the disease (0.3%). The print and film media were not as popular (1.3%)
probably due to literacy levels as well as the lack of electrical power. Three percent
mentioned youth peer groups, party and religious/church leaders, NGOs/CBOs, and
drama. This could largely be due to the lack of drama groups and NGO/CBO presence in
the communities visited. Close to 2% did not have a source where they got information




                                              79
on STIs. Appendix 5 shows the sources of information for people with different forms of
disabilities.


The information on sources of information was further disaggregated according to sex of
respondent as can be seen from table 9.6 below:

Table 9.6: Sources of information about STIs


                         Sex of respondent
Source              of Male                       Female              Total
information              N          %             N        %          N          %
Health facilities        31         15.9          33       28.0       64         20.4
Teachers                 15         7.7           1        0.8        16         5.1
Youth peer group         1          0.5           1        0.8        2          0.6
Party leaders            2          1.0           0        0.0        2          0.6
Religious leaders        0          0.0           2        1.7        2          0.6
Parent                   14         7.2           17       14.4       31         9.9
Friends                  27         13.8          18       15.3       45         14.4
Film/video               0          0.0           1        0.8        1          0.3
NGOs/CBOs                1          0.5           1        0.8        2          0.6
Posters                  2          3.1           1        0.6        3          1.0
Radio                    83         42.6          35       29.7       118        37.7
Drama                    1          0.5           1        0.8        2          0.6
Other                    6          3.1           3        2.5        9          2.9
None                     6          3.1           3        2.5        9          2.9
Don‟t know               5          2.6           1        0.8        6          1.9
Contracted the disease   1          0.5           0        0.0        1          0.3
Total                    195        100.0         118      100.0      313        100.0


AS far as sources of information on STIs was concerned, there were differences between
male and female respondents. It can be seen from table 9.5 above that higher proportions


                                            80
of female respondents mentioned health facilities (28.0%), friends (15.3%) and parents
(14.4%) compared to males whose corresponding proportions were 15.9%, 13.8% and
7.2% respectively. The radio was the major source of information where a higher
proportion of males (42.6%) indicated as a source of information compared to females
(29.7%).


9.4.8.1 Preferred Source about STIs

The most preferred source of information on STIs by people with disabilities is the radio
and then health facilities.   Another bias was toward youth peer groups, party and
religious/church leaders, NGOs/CBOs, health educators, clubs and drama (9.6%).
Friends, parents and family also were a favoured source (8.3%). The least favoured was
again film/videos (1.6%). Approximately 2% did not know where they would prefer to
obtain information about STIs. The table below provides a breakdown of the specific
responses given.



                Table 9.7: Preferred Sources for Information on STIs

      Preferred Source                                                 %
      Health Facility                                                27.5%
      Teachers                                                        3.2%
      Youth Peer Groups                                               2.6%
      Party Leaders                                                   1.6%
      Religious/Church Leaders                                        2.6%
      Printed Material                                                1.9%
      Parents                                                         1.9%
      Friends                                                         3.2%
      Film/Video                                                      1.0%
      NGOs/CBOs                                                       0.6%
      Posters                                                         0.6%
      Other                                                           3.2%
      Radio                                                          43.5%
      Drama                                                           2.2%
      Clubs                                                           0.3%
      Health Educators                                                0.3%
      None                                                            1.6%
      Don‟t Know                                                      2.2%


                                           81
Appendix 6 further shows the sources of information on STIs for people with different
forms of disabilities. From the discussion above it is clear that people with disabilities
prefer to get information through the radio and health facilities. Although this is the case,
it was also expressed during the FGDs that there are other people with disabilities, for
example those who have hearing impairments, who are not able to hear what is being said
on the radio. For such people it was suggested that the best communication strategy is the
use of sign language.


9.4.8.2 STI Contraction, Treatment and Prevention

Only 3.1% acknowledged that they had contracted an STI and 96.1% never having had an
STI. Treatment levels are quite high among those who had contracted an STI with 83.3%
having sought treatment and only 16.7% not having sought treatment. However, no
reported reasons were given for having sought the treatment. Almost three quarters
(75%) of those who sought treatment had gone to a health facility while 25% had gone to
the traditional healer.


There was a divided opinion on whether the individuals felt they could have prevented
contraction of STIs with 50% saying that they could have avoided the STI and the other
50% saying that they could not have avoided contraction.             The main method of
prevention cited was by use of a condom had the condoms been available or had they
used them.


For those who did not feel that they could have avoided the STI this was mainly due to
them having been forced into having sexual intercourse, ignorance and the absence of
condoms.




                                             82
10.0 KNOWLEDGE AND USE OF FAMILY PLANNING


10.1 Use of Family Planning Methods


Family Planning methods were not widely used among the sample population with 72.2%
stating that they do not use family planning methods and only about a quarter 27.8%
acknowledging that they use family planning methods. For those who reported using
family planning methods, the most commonly used family planning methods were
condoms (31.9%) followed by the injection (24.5%).     Nearly 27% used traditional
methods while 5.3% did not use any family planning method at all. Other choices of
contraceptives included kutseka (3.2%) which could be either TL or Vasectomy, pills
(6.4%) and sterilization (2.1%).


For the larger majority who did not use any form of family planning method, the main
reasons given were related to lack of feeling susceptible to the risk of unwanted
pregnancies and contraction of STIs.   The responses can be placed in four broad
categories mainly marital status, physical condition, personal behaviour and outside
influence. However, 12.9% stated that they do not know why they do not use family
planning methods.    Table 10.1 shows the distribution of these categories based on
responses given.



            Table 10.1: Reasons for Not Using Family planning Methods

            Marital Status                             Outside Factors
       Reason                  %                   Reason                 %
I‟m single                   28.9%       We know each other well         1.3%
Widowed                       0.9%       My partner is away              0.4%
Living Alone                  2.2%       Wife is pregnant                0.9%
Still Young                   6.2%       My husband refuses              0.9%




                                         83
   Personal Beliefs and Behaviour                      Physical Condition(s)
         Reason               %                       Reason                       %
Stopped having sex           3.6%           Stopped giving birth                  9.8%
Need to Have Children        0.4%           Closed my womb                        1.3%
Never given birth            2.7%           Health related problems               1.8%
Have enough children         0.9%           I take time to fall pregnant          1.3%
Don‟t want                  10.7%           Side effects                          0.4%
Don‟t use them               0.4%
Never had sex before        11.6%
I‟m afraid                   0.4%


10.2 Sources of information on Family Planning Methods

The radio again proved to be the main source of information where respondents received
their information about family planning methods with 40.6% stating this as their source
and 33.2% identifying the health facility as their source. The other sources included
friends (4.5%) and parents (3.5%). However, 5.2% said that they did not have any source
of family planning information. The table below gives a listing of the sources.

             Table 10.2 : Personal Sources of Family Planning Methods


                           Personal Source                              %
      Health Facility                                                 33.2%
      Teachers                                                         2.6%
      Youth Peer Groups                                                1.0%
      Religious/Church Leaders                                         0.3%
      Printed Material                                                 0.3%
      Parents                                                          3.2%
      Friends                                                          4.5%
      NGOs/CBOs                                                        0.3%
      Other                                                            2.9%
      Radio                                                           40.6%
      Drama                                                            1.0%
      Clinics                                                          0.6%
      Schools for family planning                                      0.3%
      None                                                             1.6%
      Don‟t Know                                                       3.9%




                                           84
It is clear from the above table that, although there are a wide range of sources of
information on family planning for people with disabilities, health facilities and the radio
are the most popular sources of this information.


Respondents were further asked whether they had any difficulties in accessing
information on family planning. Approximately 13% of the respondents had difficulties
accessing information on family planning methods. The main problems which were cited
as can be seen from the figure below were not possessing radios, health facilities being
very far, that there are no organizations in the area which can tell them about family
planning.


On the more negative side, hospital staff are said to be “rude”; and some refrain from
using any methods because “people told them of the side effects” associated with using
contraceptives. The nature of disability also impedes access to information.


   Figure 9: Problems Faced In Accessing Family Planning Methods Information


                        Problems Faced In Accessing FPM Information


                              I'm disbled         3%
        people told me of the side effects             6%
                      Rude hospital staff              6%
                             Always busy          3%
                No access to information                                                37%
                         No one to escort         3%
    No organisation to tell us about AIDS                        11%
                          Hospital too far                  9%
                         Don't have radio                                  23%

                                             0%   5%    10% 15%        20% 25% 30%   35% 40%




                                                   85
Approximately 87% of the respondents to the household questionnaire had no
difficulties accessing information on family planning methods. The main modes of
communication on family planning were health facilities, radios, teachers and friends
respectively, as can be seen from the following table.


         Table 10.3 : Modes of Communication of Family Planning Methods

                Personal Modes of Communication                             %
      Health Facility                                                     48.7%
      Teachers                                                            28.9%
      Youth Peer Groups                                                    0.3%
      Party Leaders                                                        0.3%
      Religious/Church Leaders                                             0.3%
      Parents                                                              0.7%
      Friends                                                              3.6%
      NGOs/CBOs                                                            0.7%
      Posters                                                              0.3%
      Other                                                                3.9%
      Radio                                                               29.9%
      No Communication                                                     0.7%
      Drama                                                                0.3%
      Schools for family planning                                          0.3%
      None                                                                 1.0%


The best method of communicating information on family planning methods is via radio
and then through the health facilities. Party leaders, religious/church leaders, NGOs/CBO
and youth peer groups are also a favoured source. The print and film media and drama
are also viable options when used in combination. Other sources such as parents and
friends are also regarded as credible sources for accessing information on family planning
methods. In an isolated incident, Braille was also suggested to be the best method of
communication for the people who are visually impaired.




                                           86
        Figure 10: Best Mode of Communication for Family Planning Methods
                          Best Mode of Communication for FPM

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       50%

       40%

       30%

       20%

       10%

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10.3 Pregnancy and related issues

As far as pregnancy is concerned, on average nearly three quarters (75%) of the women
interviewed had been pregnant at least 4 times. In one extreme case, one woman reported
having been pregnant 17 times. No follow-up question was asked and therefore
circumstance surrounding this number or the history of the pregnancies or children can be
assumed. Figure 11 below gives the distribution of the frequencies.




                                           87
                       Figure 11: Number of Pregnancies per Person
                                  Number of Pregnancies/Person


   Seventeen tim es     0.8%
       Eleven tim es       1.6%
         Ten tim es            2.5%
         Nine tim es                  4.1%
        Eight tim es       1.6%
       Seven tim es                          6.6%
          Six tim es                  4.1%
         Five tim es                                                      14.8%
         Four tim es                                                13.9%
       Three tim es                                                                 17.2%
              Tw ice                                                        15.6%
              Once                                                13.1%



The majority of the women do attend antenatal classes during pregnancy. Nearly 87%
confirmed having attended these classes at the time of their pregnancy while 13.3% had
never attended these classes. The majority who attended these classes learnt of/about
family planning methods (51.1%) and nutrition (balanced diet) (14.8%). Other important
issues learnt were:


       Breastfeeding/baby care (8%).
       No information on sexual and reproductive health (4.5%).
       Be aware of HIV/AIDS (6.8%).
       Have one partner (5.7%).
       Nothing (3.5%)


The women who did not attend antenatal classes gave varied reasons for this. The main
reason given by over half (60%) of respondents was that lack of transport to get them to
the clinic and back. The other reasons were more violations of the women‟s rights to
health care based on stigma or denial by the spouse. However, 25% of them were simply
“not interested” to attend antenatal classes. Figure 12 shows this distribution.




                                              88
         Figure 12: Reasons for Failure of Attendance of Antenatal Clinics


                              Reasons for Not Attending Antenatal

                           60%
                  60%
                  50%
                  40%
                                                                    25%
                  30%
                  20%                   10%
                                                        5%
                  10%
                   0%
                         Transport     Not Yet        Husband         Not
                         Problems      Married        Refuses     Interested

                             Reasons                  Not Attend Antenatal


In most cases female respondents who had been pregnant had carried full term with
72.4% reporting no miscarriages or premature births. However, 15.8% of the women
reported having at least lost one pregnancy. No one reported having lost over 4
pregnancies. The pie chart (Fig 13) shows this distribution.


Figure 13: Number of pregnancies ending before term



                   Number of Pregnancies Ended Before Term

                           Three Times
                               3%    Four Times
                        Twice
                                        4%
                         5%

                          Once
                          16%                                           None
                                                                        72%




                                                 89
Over half (61.7%) of the women reported not having lost any children below the age of 5
years old. However, child mortality is still a matter of concern with 38.3% of the women
stating that they have lost a child below the age of five years old. The three leading
causes of death identified were:


          Sickness (14%).
          Anaemia (11.6%).
          Malaria (9.3%).


Other deadly illnesses included:


          Pneumonia (7%).
          Swollen Legs (7%).
          Birth complications (7%).


Approximately 2.0% felt that their children had died as a result of witchcraft. In addition,
three other illnesses mentioned are rooted in traditional beliefs. These illnesses are:
Likango (4.7%), Liwombo (4.7%), and Kalongolongo (4.7%). Similar to those STIs
mentioned earlier, medical definitions provided by experts are based on the origin of the
illness.


          Likango – difficult to define but may be the result of habitual abortion by the
           mother which in turn causes her to lose her children either at birth or in the infant
           years. Alternatively, untreated STIs/STDs affect the child at birth or in its infant
           years leading to death.


          Liwombo - The soft breathing spot on the top of a baby‟s head is called liwombo.
           Complications that arise in relation to the breathing spot by either becoming
           raised, depressed, or one that spreads across the head surface leads to death of the
           child.



                                                90
      Kalongolongo – Tetanus.       The child develops chills and adopts a rigid yet
       cringing type posture as that of trying to keep warm. This posture is the name
       given o the disease. In other areas this is known under different names.


The other illnesses mentioned are presented in Table 10.4 below.


       Table 10.4 Other causes of death

                    Illness                      %
                 Asthma                        4.7%
                 Epilepsy                      2.3%
                 Diarrhoea                     4.7%
                 Measles                       4.7%
                 Malnutrition                  4.7%
                 Unknown                       4.7%
                 Premature                     4.7%

In addition to finding out the number of children who died, this study also tried to find
out the number of children that respondents had at the time of the survey. The results
show that fertility levels are relatively high amongst the sample population with most of
the women having between one and four children. 4.7% of the respondents reported
having a total of eight children at present. Only 2.8% did not have any children. The
distribution is as shown in Figure 14 below:




                                           91
                           Figure 14: Number of Children at Present
                                       Number of Children at Present


                             26.40%

                                      20.80%
                                                18.90%
                                                         16%



                                                               5.70%                 4.70%
                     2.80%                                             2.80% 1.90%


                    None     One      Tw o     Three   Four    Five    Six   Seven Eight

                                                No. of children



Almost all the children are from the same mother/father. Approximately 87% are from
the same mother/father while 13.5% are not. Almost three quarters of the father/mothers
are still around (69.5%) while 30.5% are not. This is quite a high number of single-
headed households. The whereabouts of the missing fathers/mothers are largely due to
separation of the spouse either through divorce, walking-out-on the other or returned to
home village.       Death is also another cause for the absence of the father/mother.
However, 17.9% do not know the whereabouts of the father /mother of their children.


                      Table 10.5: Whereabouts of the Mother/Father

                          Whereabouts                                               %
                     Don‟t‟ Know                                                 17.9%
                     Passed Away                                                 17.9%
                     Father Died                                                  25%
                     Home Village                                                14.3%
                     He Left Me                                                  21.4%
                     Divorced                                                     3.6%

With regard to child support, practically all mothers have to rely on their own resources
to provide for their children. Approximately 93% said that the absent father does not
provide support for the child while 7.4% said that the absent father did provide support
for the child. For nearly half of these mothers, the reasons for no child support is because




                                                         92
the father passed away. However most of the reasons given were because of negative
attitudes and behaviours of the father. See Figure 15 for reasons.
                          Figure 15: Reason for No Child Support
                                  Reasons For No Child Support


                           Divorced
             R              Poverty
             e
               Have never asked him
             a
             s Refused Responsility
             o
                           Drunkard
             n
             s          Don't Know
                        Father Died

                                      0%   10%        20%   30%   40%    50%     60%




10.4 Place of delivery

Female respondents were also asked where their last child was delivered. Results show
that most of the children were born at a health facility and that still many children are still
being born at home.        From this study it has been found that 50.5% of the female
respondents who had ever delivered said that their last child was born at a health center,
16.8% at a district hospital, 29% at home and lastly 3.7% at the traditional birth
attendant.


These results indicate that despite the proliferation of modern health facilities, it is
evident that there are still a good percentage of deliveries which take place at the home,
most likely with the assistance of TBAs. Most of the health care deliveries however take
place within the health facility environment.


Those mothers who chose to delivery at health facilities did so mainly because of the
availability of proper health-care and experienced health personnel. Those who chose to
deliver at home were constrained by non-availability of money, that the labour had




                                                 93
advanced so much or premature among factors. The table below reflects the two sets of
choices and the reasons given.


Table 10.6: Reason For Selecting the Place of Delivery


                 Health Facility                                      Home
                Reason                      %                   Reasons                %
Receive proper health care from           48.6%     Late to go to the hospital       6.7%
doctors and nurses
Experienced personnel                     8.6%      Transport                        5.7%
It was near                               2.9%      Afraid to go to hospital         2.9%
Had less blood so doctors advised me      1%        Lack of guidance                 1%
to wait at hospital
After I was sick I was taken there        1.9%      Hospital is Far                  5.7%
Thought it would be difficult since I     1%        Because of traditional reasons   2.9%
was alone
                                                    Premature                        1%

In most cases, the first person to communicate with mothers soon after delivery is the
nurse (46.7%) and for those who deliver at home, the TBA (2.8%). Approximately 22%
mentioned their mother as the first person that they spoke to soon after delivery. The
following list presents the list of people spoken to soon after delivery.


              46.7% = Nurse                          21.5% = My mother
              9.3% = Doctor                          2.8% = My Grandmother
              3.7% = Other Wife                      1.9% = Mother-in-law
              3.7% = Husband                         1.9% = Sister-in-law
              3.7% = Women                           0.9% = Aunt
              2.8% = TBA                             0.9% = Nobody

While respondents mentioned a number of people that first talked to them after delivery
such as the doctor, grandmother, other wives etc, it can be seen that the nurse and the
mother featured highly.


Regarding information on baby care, at least half (53.4%) of the women said that they
had received information about baby care by word of mouth and 18.4% mentioned the
antenatal classes as a source for baby care information. 9.7% credited doctors as their



                                             94
source for information on baby care with 5.8% having heard from their mothers. Other
sources include: Radio (1.9%); TBA (5.8%); Grandmother (2.9%); and through pictures
(1%). 1% noted that they had not been told any information. Regardless of he source
majority of he mothers felt that this information was adequate with only 2.1% who felt
that the information was not adequate. Reasons for inadequacy were:


                          Baby needs to eat (50%)
                          No information was given to me (50%)


No responses to the follow-up question asking whether respondents tried to seek
information from other sources.


The study also aimed at finding out the distance to health facility. On average, most
antenatal clinics are quite a long walking distance. For those communities that have
health facilities within, access to antenatal classes were easily attended with 39.8%
stating tat “it was not far”. In some cases, the nearest clinics one to 5 hours away
(25.2%) and in other cases more than 5 hours (1%). For some, the nearest clinic is 1 – 10
kms away (19.4%) and some even further 11 – 20 kms away (1.9%). Quite a few women
were not able to estimate e the distance therefore those who did not know totaled o
12.6%.


10.5 Issues of child care for people with disabilities


Almost half (44.3%) the women acknowledged that they have problems looking after
children while 55.7% did not have any difficulties looking after children. The difficulties
experienced are due to poverty, activity limitation due to disability and lack of child
spacing (see Figure 16).




                                            95
                             Figure 16: Types of Difficulty Expereinced
                                               Giving birth
                                                frequenlty
                                                    5%
                            Because of
                             disability
                                26%



                                                                     Poverty
                                                                      59%

                    Unable to walk to
                     buy medication
                          10%




Almost all the respondents (90.9%) stated that they needed assistance in looking after
their children with only 9.1% being comfortable. Currently, the husband is the main
person who assists in the childcare. The extended family is the main outside buffer
helping the mothers with childcare. That is immediate family (23.7%) make up the bulk
of those persons assisting the mother namely her mother, brother, sister, grandmother and
parents. In addition, relatives also are another source of assistance. At the extreme cases,
7.9% said that they no one assisted them.


                       Table 10.7: Person Who Assists in Childcare

                     Person Who Assists                                     %
                    Mother                                                7.9%
                    Self                                                 18.4%
                    Husband                                              36.8%
                    Sister                                                2.6%
                    My brother                                            5.3%
                    No-one                                                7.9%
                    Grandmother                                           2.6%
                    My Parents                                            5.3%
                    Relative                                             13.2%




                                                96
10.6 Fears Concerning Sexual Reproductive Health

Most of the fears outlined can be placed into two broad categories namely: risk, and
limited/no access. The other fears are more general in nature. Nevertheless, 36.8% do not
have any fears concerning sexual reproductive health while 9.4% don‟t know what their
fears are.


     Table 10.8: Biggest Fears/Concerns Regarding Sexual Reproductive Health

                     Risk                                 Limited/No Access
I‟m concerned with people I know        36.2%    Rude hospital staff              0.4%
who practice unprotected sex
Children don‟t listen anymore to        2.2%     Difficulties    in      getting 0.7%
advise about sexual issues                       reproductive health messages
People indulge in sex while they have   0.7%
a small child
My boyfriend/girlfriend cannot be       0.4%
faithful
Unfaithfulness of partners              1.4%
Condoms encourage sex and are           1.4%
dangerous because of the fluid


                                        General
                      Family planning methods               5.4%
                      Early pregnancy and sex               18.9%
                      Continuous reproduction               17.4%
                      More death cases during delivery      19.9%
                      Disabled people having more sex       19.9%
                      partners


11.0 CONCLUSIONS AND RECOMMENDATIONS


The following conclusions and recommendations can therefore be made from the results
as presented in this report:



                                           97
   This study has shown that there are more people with physical disabilities than
    any other form of disabilities and that more men with disabilities were found
    compared to women with disabilities.


   Respondents were generally knowledgeable about the causes of disabilities for
    example that accidents, children not being immunized against polio and illnesses
    can cause physical disabilities. There were also however misconceptions about
    the causes of disabilities, for example that wearing sunglasses can cause blindness
    and that children born from parents who are HIV+ are born with some form of
    disability. The belief in witchcraft is still prevalent in Malawian communities and
    was mentioned as a cause of disability. It should be mentioned that some forms
    of disability (for example polio can be prevented by vaccination) are
    preventable, hence members of the community should be made aware of the
    cause of different forms of disabilities and how they can be prevented.




   While people knew how different forms of disability can be prevented, in some
    cases as mentioned by people with disabilities in TA Mabulawo, they felt helpless
    and said that it was not possible to prevent disability as it was God‟s plan and that
    there is nothing that they could do to prevent disability.


   More than 80% of the people with disability had sought care or were seeking care
    at the time of the survey. Most of the respondents sought care from public health
    facilities while less than 10% sought care from traditional healers and private
    health facilities. Those who sought care from traditional healers were mainly
    those who thought that the disability they were suffering from was caused by
    witchcraft. While a large percentage of people with disabilities interviewed
    sought care and treatment, it is important to educate members of the community
    on the need to seek care promptly.




                                         98
   Generally people with disabilities face a lot of problems relating to different
    social sectors. For example, that schools and other social services are located very
    far and hence there are problems of access for people with disabilities. In some
    cases people with disabilities do not go to school because they feel that even if
    they do, they will not get employed because of disability. They are also in some
    way stigmatized and discriminated against. Recognising the stigma and
    discrimination that exist in workplaces and such other places, it is however
    important that role models comprising of people with disabilities who have gone
    to school and are employed to talk to members of the community about their
    experiences and encourage people with disabilities to go to school.


   As far as communication is concerned most respondents said that they were able
    to communicate with others through speech because they were able to talk and
    hear. Only 2%, mainly those with speech and hearing problems said that they
    used sign language as a way of communicating with others. While speech was
    found to be the most common form of communication, there is need to consider
    other forms of communication especially for those who have speech and
    hearing problems in the design of communication strategies. It was only
    through some FGDs that participants recommended the use of Braille for those
    who are visually impaired.


   This study has found that knowledge about HIV/AIDS amongst people with
    disabilities is generally high at around 94%. While acknowledging that this is
    indeed high, the figure however is low when comparing with knowledge levels at
    national level which stand at almost 100%. In addition knowledge about HIV and
    AIDS is higher among females than males with disabilities. There is therefore a
    need to further educate people with disabilities in different communities about
    HIV/AIDS.


   Regardless of the type of disability, this study has indicated that people with
    disabilities have heard about AIDS through different communication channels, the


                                        99
    most important ones being health facilities, teachers and the radio. Even those
    who had hearing problems, they knew about AIDS through channels such as
    health facilities, teachers, radio etc. While those who were visually impaired knew
    about AIDS through these channels, it has also been discussed that they did not
    know about AIDS through printed material. There is need to point out that most
    of those people who had hearing impairments could somehow hear and this
    explains why they heard about AIDS through the same channels that people
    who could hear and talk heard about AIDS. Further studies however need to be
    done with a relatively big sample size to determine how information on
    HIV/AIDS can best be communicated to those who are completely deaf.


   People with disabilities face a lot of problems when accessing information for
    example those who have visual impairment cannot see, those with hearing
    impairment cannot hear, others cannot walk. In addition to these, there are also
    problems such as lack of materials, absence of HIV/AIDS programmes in their
    respective areas and lack of access to the radio. There were suggestions therefore
    that there is need for government and NGOs to provide solar radios which do not
    require one to buy batteries to people with disabilities, magazines on HIV/AIDS
    to those who can read, information in Braille to those who can read and for those
    who cannot walk, the need to visit them and teach them about HIV/AIDS.
    Because of the problems that people with disabilities have especially concerning
    access, there is need to consider the establishment of outreach HIV/AIDS
    programmes in order to ensure that more people with disabilities are reached.
    This would ensure that more people would be in a position to know about
    HIV/AIDS issues.


   A good proportion of people with disabilities knew how AIDS is transmitted and
    prevented. There were however also misperceptions for example that HIV can be
    transmitted through sharing of clothes or eating with someone who has AIDS.
    Intensive AIDS awareness programmes, including outreach programmes would




                                       100
    be important to dispel some of the misconceptions about HIV/AIDS that exist
    among people with disabilities.


   Close to 30% of respondents had cared for people who were chronically ill and
    the major problems that they faced included food shortages, lack of money, long
    stay in hospitals, bathing and dressing. The results also show that they coped with
    this through perseverance, prayer, help from other people and engaging in ganyus.
    People with disabilities already face a lot of problems (such as money) and
    taking care of people who are chronically ill adds another burden. In order to
    ease some of the problems that they face there is to engage into discussions with
    government and donor agencies and explore ways of generating funds. The
    establishment of disability grants can be one way.


   The majority of respondents knew about VCT and the major sources of
    information were the radio and the health facilities. While this was the case, close
    to 90% of respondents had not gone for VCT reasons for which included not
    knowing about VCT and accessibility problems. Those who had gone for VCT
    did so because among other factors they were prompted by sickness. While the
    establishment of many VCT centers would improve access to these services for
    people with disabilities, this should also be accompanied by the rolling out of
    the ARV programmes otherwise testing without access to ARVs would not be all
    that advantageous.




                                        101
References

Kalipeni, E. (200) Health and disease in southern Africa: a comparative and vulnerability
perspective. Social Science and Medicine 50 (7/8):965-983.

National AIDS Commission. (2003). National HIV/AIDS Policy. Lilongwe: NAC.

National Economic Council. (2000). Statistical booklet on poverty. Lilongwe: NEC.

National Statistical Office. (2000). Malawi Population and housing census: report of
final census results. Zomba:NSO.

National Statistical Office. (1996). Malawi knowledge, attitudes and practices in health.
Zomba: NSO.

National Statistical Office. (2001). Demographic and health survey.
Zomba:                                                        NSO.




                                          102
Appendix 1: Access to Drama

Form of Disability              Count        drama access           Total

                                             yes            no
Differences in leg length       Count        13             10      23
                                % of Total   3.8%           2.9%    6.7%
paralyzed legs                  Count        51             58      109
                                % of Total   15.0%          17.0%   32.0%
Epilepsy                        Count        17             16      33
                                % of Total   5.0%           4.7%    9.7%
Hunchback                       Count        4              4       8
                                % of Total   1.2%           1.2%    2.3%
Leprosy                         Count         0             1       1
                                % of Total    0.0%          .3%     .3%
Differences in length of arms   Count        1              0       1
                                % of Total   .3%             0.0%   .3%
paralyzed arms                  Count        21             11      32
                                % of Total   6.2%           3.2%    9.4%
hearing problems                Count        4              6       10
                                % of Total   1.2%           1.8%    2.9%
speech problems                 Count        1              12      13
                                % of Total   .3%            3.5%    3.8%
total blindness                 Count        4              10      14
                                % of Total   1.2%           2.9%    4.1%
one eye blind                   Count        17             29      46
                                % of Total   5.0%           8.5%    13.5%
Albino                          Count        3              3       6
                                % of Total   .9%            .9%     1.8%
feet abnormalities              Count        9              10      19
                                % of Total   2.6%           2.9%    5.6%
mental disorder                 Count        1              2       3
                                % of Total   .3%            .6%     .9%
Goiter                          Count        1               0      1
                                % of Total   .3%             0.0%   .3%
nose problems                   Count        1               0      1
                                % of Total   .3%             0.0%   .3%
general eye problems            Count        3              6       9
                                % of Total   .9%            1.8%    2.6%
deformed mouth                  Count         0             2       2
                                % of Total    0.0%          .6%     .6%
hip problems                    Count         0             1       1
                                % of Total    0.0%          .3%     .3%
Other                           Count        3              4       7
                                % of Total    0.9%          1.2%    2.1%
limb missing                    Count         0             2       2
                                % of Total    0.0%          .6%     .6%
Totals                          Count        154            187     341
                                % of Total   45.2%          54.8%   100.0%




                                    103
Appendix 2: Access to pictures
Type of Disability               Count        access to pictures           Total

                                              yes                  no
Differences in leg length        Count        12                   11      23

                                 % of Total   3.5%                 3.2%  6.7%
paralyzed legs                   Count        48                   61    109
                                 % of Total   14.1%                17.9% 32.0%
Epilepsy                         Count        15                   18    33
                                 % of Total   4.4%                 5.3%  9.7%
Hunchback                        Count        4                    4     8
                                 % of Total   1.2%                 1.2%  2.3%
Leprosy                          Count         0                   1     1
                                 % of Total    0.0%                .3%   .3%
Differences in length of arms    Count        1                          1
                                 % of Total   .3%                        .3%
paralyzed arms                   Count        18                   14    32
                                 % of Total   5.3%                 4.1%  9.4%
hearing problems                 Count        5                    5     10
                                 % of Total   1.5%                 1.5%  2.9%
speech problems                  Count        4                    9     13
                                 % of Total   1.2%                 2.6%  3.8%
total blindness                  Count        1                    14    14
                                 % of Total   .3%                  4.1%  4.1%
one eye blind                    Count        17                   29    46
                                 % of Total   5.0%                 8.5%  13.5%
Albino                           Count        3                    3     6
                                 % of Total   .9%                  .9%   1.8%
feet abnormalities               Count        9                    10    19
                                 % of Total   2.6%                 2.9%  5.6%
mental disorder                  Count        1                    2     3
                                 % of Total   .3%                  .6%   .9%
Goiter                           Count         0                   1     1
                                 % of Total    0.0%                .3%   .3%
nose problems                    Count        1                     0    1
                                 % of Total   .3%                   0.0% .3%
general eye problems             Count        5                    4     9
                                 % of Total   1.5%                 1.2%  2.6%
deformed mouth                   Count         0                   2     2
                                 % of Total    0.0%                .6%   .6%
hip problems                     Count         0                   1     1
                                 % of Total    0.0%                .3%   .3%
Other                            Count        5                    1     6
                                 % of Total    1.5                 .3%   1.8%
limb missing                     Count        1                    1     2
                                 % of Total   .3%                  .3%   .6%
Total                            Count        150                  191   341
                                 % of Total   44.0%                56.0% 100.0%




                                   104
Appendix 3: Access to print media

Type of disability                        Count        access to print     Total

                                                       yes         no
Differences in leg length                 Count        10          13      23
                                          % of Total   2.9%        3.8%    6.7%
paralyzed legs                            Count        30          79      109
                                          % of Total   8.8%        23.2%   32.0%
Epilepsy                                  Count        7           26      33
                                          % of Total   2.1%        7.6%    9.7%
Hunchback                                 Count        3           5       8
                                          % of Total   .9%         1.5%    2.3%
Leprosy                                   Count         0          1       1
                                          % of Total    0.0%       .3%     .3%
Differences in length of arms             Count        1            0      1
                                          % of Total   .3%          0.0%   .3%
paralyzed arms                            Count        14          18      32
                                          % of Total   4.1%        5.3%    9.4%
hearing problems                          Count        3           7       10
                                          % of Total   .9%         2.1%    2.9%
speech problems                           Count        3           10      13
                                          % of Total   .9%         2.9%    3.8%
Total blindness                           Count        1           13      14
                                          % of Total   .3%         3.8%    4.1%
one eye blind                             Count        10          36      46
                                          % of Total   2.9%        10.6%   13.5%
Albino                                    Count         0          6       6
                                          % of Total    0.0%       1.8%    1.8%
feet abnormalities                        Count        4           15      19
                                          % of Total   1.2%        4.4%    5.6%
mental disorder                           Count         0          3       3
                                          % of Total    0.0%       .9%     .9%
Goiter                                    Count         0          1       1
                                          % of Total    0.0%       .3%     .3%
nose problems                             Count        1            0      1
                                          % of Total   .3%          0.0%   .3%
general eye problems                      Count        2           7       9
                                          % of Total   .6%         2.1%    2.6%
deformed mouth                            Count         0          2       2
                                          % of Total    0.0%       .6%     .6%
hip problems                              Count         0          1       1
                                          % of Total    0.0%       .3%     .3%



                                    105
Nkhumbumtondo         Count         5      1       1
                      % of Total    1.5%   .3%     1.8%
limb missing          Count        1       1       2
                      % of Total   .3%     .3%     .6%
Total                 Count        95      246     341
                      % of Total   27.9%   72.1%   100.0%




                106
Appendix 4: How respondents knew about HIV/AIDS
Type of Disability          Count               how did you know about HIV/AIDS                                                                           Total

         health                     teachers                     youth peer                                           party                                    religious                                                               printed                                  parents         friends      NGOs/CBO        other   radio   I saw my   BLM   sign       D/K
         facilities                                              group                                                leader                                   leaders/church                                                          material                                                                                              sister           language
Differences in leg length or width                           Count                       10               0               0               0           1            4           0               0            0              1            5              1        1           0         0     23
    % of Total        3.0%              0%                   0%                      0%               .3%                  1.2%                    0%                   0%                  0%                  .3%                    1.5%                     .3%             .3%         0%         0%     7.0%
paralyzed legs        Count             32           8               1           1            4           1               4           8           3            4           36               0              2               0               0           104
    % of Total        9.8%              2.4%                 .3%                     .3%                 1.2%                     .3%                 1.2%                     2.4%                    .9%                 1.2%                     11.0%                   0%            .6%      0%        0%      31.7%
Epilepsy      Count         3       3            1               0           2               0            2            7              2           4            9           0               0            0              0               33
    % of Total        .9%           .9%                  .3%                     0%               .6%                     0%                  .6%               2.1%                   .6%                  1.2%                       2.7%                     0%              0%          0%         0%     10.1%
Hunchback         Count         2            0               0               0           1            0               0               1           0            1           2            0              0               0               0           7
    % of Total        .6%           0%                   0%                      0%               .3%                     0%                  0%                .3%                    0%                  .3%                 .6%                      0%              0%            0%         0%         2.1%
Leprosy      Count          0           0            0               0               0            0               0               0           0            1                       0            0              0               0               1
    % of Total         0%           0%                   0%                      0%                  0%                   0%                  0%                   0%                  0%                  .3%                                 0%               0%              0%          0%      .3%
Differences in arms length                  Count                        0            0              0             0              0            0               0               0           0               0           1                0              0            0       0         1
    % of Total         0%           0%                   0%                      0%                  0%                   0%                  0%                   0%                  0%                  0%                  .3%                      0%              0%            0%         0%         .3%
paralyzed arms         Count            9            3               0               0           2            0               1           4           0                0           11              0               1               0            0           31
    % of Total        2.7%              .9%                  0%                      0%               .6%                     0%              .3%                  1.2%                     0%                     0%                  3.4%                     0%              .3%         0%         0%     9.5%
hearing problems         Count               1           3               0               1            0               0               0        1               0           0            1              1               0           1               0            9
    % of Total        .3%           .9%                  0%                  .3%                     0%                   0%                  0%                .3%                    0%                  0%                  .3%                     .3%              0%            .3%        0%         2.7%
speech problems         Count               1            0               0               0            0               0               0           3            0           1            2              0               0               0            1           8
    % of Total        .3%           0%                   0%                      0%                  0%                   0%                  0%                .9%                    0%                  .3%                 .6%                      0%              0%            0%         .3%        2.4%
total blindness       Count             1            0           1                0           3               0               0           1           1            0               5           0           2               0                0              14
    % of Total        .3%           0%                   .3%                     0%               .9%                     0%                  0%                .3%                    .3%                 0%                  1.5%                        0%           .6%               0%      0%        4.3%
one eye blind         Count         17               2           1               0           5            0                0              3           0            3           14                  0           1               0               0           46
    % of Total        5.2%              .6%              .3%                         0%               1.5%                        0%               0%                  .9%                  0%                  .9%                    4.3%                     0%              .3%         0%         0%     14.0%
Albino      Count       2           0            0               0               0           0            0               2               0           0            2               0           0               0               0            6
    % of Total        .6%           0%                   0%                      0%                  0%                   0%                  0%                .6%                    0%                  0%                  .6%                      0%              0%            0%         0%         1.8%
feet abnormalities          Count               5            3               0            0              0             0                  0       1            1           2            6              0               1               0            0           19
    % of Total        1.5%              .9%                  0%                      0%               0%                      0%                  0%               .3%                 .3%                  .6%                    1.8%                     0%              .3%           0%        0%       5.8%
mental disorder        Count             1               0               0            0              0            0               0           1             0              0           1               0               0               0            0           3
    % of Total        .3%           0%                   0%                      0%                  0%                   0%                  0%                .3%                    0%                  0%                  .3%                      0%              0%            0%         0%         .9%
Goiter     Count        1       0            0               0               0               0            0               0               0           0             0              0            0              0               0               1
    % of Total        .3%           0%                   0%                      0%                  0%                   0%                  0%                   0%                  0%                  0%                      0%                   0%              0%            0%         0%         .3%
nose problems         Count             0            1               0               0            0            0                  0           0            0               0           0               0               0               0               0        1
    % of Total         0%           .3%                  0%                      0%                  0%                   0%                  0%                   0%                  0%                  0%                      0%                   0%              0%            0%         0%         .3%
general eye problems            Count                    3           1               0            0               0               0           0            1               0           1           3               0               0               0            0       9




                                                                                                                                                                                                                                                                107
       % of Total    .9%         .3%              0%                  0%               0%         0%              0%        .3%         0%          .3%             .9%              0%          0%     0%      0%     2.7%
deformed mouth          Count             1           0           0        0           0        0        0         0        0       0       1       0           0           0        0       2
       % of Total    .3%          0%              0%                  0%               0%         0%              0%        0%          0%          0%              .3%              0%          0%     0%      0%     .6%
hip problems        Count         0           0               0       0            0        0        0        1        0        0       0       0        0              0        0       1
       % of Total       0%        0%              0%                  0%               0%         0%              0%        .3%         0%          0%                  0%           0%          0%     0%      0%     .3%
nkhumbumtondo           Count             1           0           0        0           0        0         0        0        0       0       0        0          0            0       0       1
       % of Total    .3%          0%              0%                  0%               0%         0%              0%        0%          0%          0%                  0%           0%          0%     0%      0%     .3%
Fire      Count     2        2        0           0           1        0           0        1        0        0         0       0       0       0           0           6
       % of Total    .6%         .6%              0%                  0%           .3%            0%              0%        .3%         0%          0%                  0%           0%          0%     0%      0%     1.8%
limb missing        Count         0           0               0       0            0        0        0        0         0       0       2       0        0              0        0       2
       % of Total       0%        0%              0%                  0%               0%         0%              0%        0%          0%          0%              .6%              0%          0%     0%      0%     .6%
Total       Count       92       26           4           2       19           5        7       35        7        18       101         2       8       1           1       328
       % of Total    28.0%            7.9%                1.2%             .6%             5.8%          1.5%          2.1%         10.7%           2.1%                5.5%         30.8%        .6%    2.4%    .3%     .3%   100.0%




                                                                                                                                                                                         108
Appendix 5: Source of information about these diseases
Type of Disability   Count   source of information about these diseases       Total

                                  health       teachers     youth         party       religious        parent   friends   film/video   NGOs/CBO   posters   other   radio   drama   none   don't   I contracted
                                  facilities                peer          readers     leaders/church                                                                                       know    the disease
                                                            group
Leg difference in       Count     5             0           0             0           1                2        6         0            0          0         0       9       0       0      0       0              23
length or width
                        % of      1.6%          0.0%        0.0%          0.0%        .3%              .6%      1.9%      0.0%         0.0%       0.0%      0.0%    2.9%    0.0%    0.0%   0.0%    0.0%           7.3%
                        Total
paralyzed legs          Count     23           3            1             0           0                11       16        1            2          1         1       37      1       3      2       0              102
                        % of      7.3%         1.0%         .3%           0.0%        0.0%             3.5%     5.1%      .3%          .6%        .3%       .3%     11.8%   .3%     1.0%   .6%     0.0%           32.6%
                        Total
Epilepsy                Count     4            1            0             0           1                1        4         0            0          0         3       11      0       4      1       0              30
                        % of      1.3%         .3%          0.0%          0.0%        .3%              .3%      1.3%      0.0%         0.0%       0.0%      1.0%    3.5%            1.3%   .3%     0.0%           9.6%
                        Total                                                                                                                                               0.0%
Hunchback               Count     2             0           0             0           0                0        1         0            0          0         0       2        0      1      0       0              6
                        % of      .6%           0.0%        0.0%          0.0%        0.0%                      .3%       0.0%         0.0%       0.0%              .6%     0.0%    .3%    0.0%    0.0%           1.9%
                        Total                                                                          0.0%                                                 0.0%
Leprosy                 Count     0             0           0             0           0                 0       0         0            0          0          0      1        0       0     0       0              1
                        % of      0.0%          0.0%        0.0%          0.0%        0.0%             0.0%     0.0%      0.0%         0.0%       0.0%       .0%    .3%     0.0%    0.0%   0.0%    0.0%           .3%
                        Total
arms difference in      Count     0             0           0             0           0                1        0         0            0          0         0       0       0       0      0       0              1
width and length
                        % of      0.0%          0.0%        0.0%          0.0%        0.0%             .3%      0.0%      0.0%         0.0%       0.0%              0.0%    0.0%    0.0%   0.0%    0.0%           .3%
                        Total                                                                                                                               0.0%
paralyzed arms          Count     4            5            0             0           0                2        5         0            0          1          0      12       0       0     0       0              29
                        % of      1.3%         1.6%         0.0%          0.0%        0.0%             .6%      1.6%      0.0%         0.0%       .3%       0.0%    3.8%    0.0%    0.0%   0.0%    0.0%           9.3%
                        Total
hearing problems        Count     2            2            0             0           0                1        2         0            0          0         0       1        0       0     0       0              8
                        % of      .6%          .6%          0.0%          0.0%        0.0%             .3%      .6%       0.0%         0.0%       0.0%              .3%     0.0%    0.0%   0.0%    0.0%           2.6%
                        Total                                                                                                                               0.0%
speech problems         Count     1             0           0             0           0                2        0         0            0          1         1       1        0       0     2       0              8
                        % of      .3%           0.0%        0.0%          0.0%        0.0%             .6%      0.0%      0.0%         0.0%       .3%       .3%     .3%     0.0%    0.0%   .6%     0.0%           2.6%
                        Total
total blindness         Count     2             0           0             1           0                2        4         0            0          0          0      4        0       0     0       1              14
                        % of      .6%           0.0%        0.0%          .3%         0.0%             .6%      1.3%      0.0%         0.0%       0.0%      0.0%    1.3%    0.0%    0.0%   0.0%    .3%            4.5%
                        Total
one eye blind           Count     11           2            0             1           0                5        1         0            0          0         1       21       0      1      0       0              43
                        % of      3.5%         .6%          0.0%          .3%         0.0%             1.6%     .3%       0.0%         0.0%       0.0%      .3%     6.7%    0.0%    .3%    0.0%    0.0%           13.7%
                        Total
Albino                  Count     2             0           0             0           0                1        0         0            0          0          0      3        0       0     0       0              6
                        % of      .6%           0.0%        0.0%          0.0%        0.0%             .3%      0.0%      0.0%         0.0%       0.0%      0.0%    1.0%    0.0%    0.0%   0.0%    0.0%           1.9%
                        Total
feet abnormalities      Count     4            2            1             0           0                 0       1         0            0          0         1       8       1        0     0       0              18
                        % of      1.3%         .6%          .3%           0.0%        0.0%             0.0%     .3%       0.0%         0.0%       0.0%      .3%     2.6%    .3%     0.0%   0.0%    0.0%           5.8%
                        Total
mental disorder         Count     0             0           0             0           0                 0       0         0            0          0          0      1        0       0     1       0              2
                        % of      0.0%          0.0%        0.0%          0.0%        0.0%             0.0%     0.0%      0.0%         0.0%       0.0%      0.0%    .3%     0.0%    0.0%   .3%     0.0%           .6%
                        Total




                                                                                                                    109
Goiter           Count   1       0      0      0      0       0     0         0      0      0       0     0        0      0     0      0      1
                 % of    .3%     0.0%   0.0%   0.0%   0.0%   0.0%   0.0%      0.0%   0.0%   0.0%   0.0%   0.0%    0.0%   0.0%   0.0%   0.0%   .3%
                 Total
nose problems    Count   0       0      0      0      0      0      0         0      0      0       0     1        0      0     0      0      1
                 % of    0.0%    0.0%   0.0%   0.0%   0.0%   .0%    0.0%      0.0%   0.0%   0.0%   0.0%   .3%     0.0%   0.0%   0.0%   0.0%   .3%
                 Total
general eye      Count   2       1      0      0      0      1      1         0      0      0      1      2       0      0      0      0      8
problems
                 % of    .6%     .3%    0.0%   0.0%   0.0%   .3%    .3%       0.0%   0.0%   0.0%   .3%    .6%     0.0%   0.0%   0.0%   0.0%   2.6%
                 Total
deformed mouth   Count   0       0      0      0      0      1                0      0      0       0     1        0      0     0      0      2
                 % of    0.0%    0.0%   0.0%   0.0%   0.0%   .3%              0.0%   0.0%   0.0%   0.0%   .3%     0.0%   0.0%   0.0%   0.0%   .6%
                 Total
hip problems     Count   0       0      0      0      0      0      1         0      0      0       0              0      0     0      0      1
                 % of    0.0%    0.0%   0.0%   0.0%   0.0%          .3%       0.0%   0.0%   0.0%   0.0%           0.0%   0.0%   0.0%   0.0%   .3%
                 Total                                       0.0%
nkhumbumtondo    Count   1       0      0      0      0       0     2         0      0      0      1      3        0      0     0      0      7
                 % of     .3%    0.0%   0.0%   0.0%   0.0%   0.0%    0.6%     0.0%   0.0%   0.0%   .3%    1.0%    0.0%   0.0%   0.0%   0.0%   .1.9%
                 Total
limb missing     Count   0       0      0      0      0      1      1         0      0      0       0     0        0      0     0      0      2
                 % of    0.0%    0.0%   0.0%   0.0%   0.0%   .3%    .3%       0.0%   0.0%   0.0%   0.0%   0.0%    0.0%   0.0%   0.0%   0.0%   .6%
                 Total
                 Count   64      16     2      2      2      31     45        1      2      3      9      118     2      9      6      1      313
                 % of    20.4%   5.1%   .6%    .6%    .6%    9.9%   14.4%     .3%    .6%    1.0%   2.9%   37.7%   .6%    2.9%   1.9%   .3%    100.0%
                 Total




                                                                        110
Appendix 6: What source of information on sexually transmitted disease would you prefer to use
Type of disability   Count   what source of information on sexually transmitted disease would you prefer to use                                                                                                             Total

                             health       teachers    youth      party     religious          printed      parents    friends   film/video   NGOs/CBO   posters   other   radio   drama   clubs   health      none   d/k
                             facilities               peer       leader    leaders/church     material                                                                                            educators
                                                      groups
Leg difference in    Count   9            1           1          0         0                  0            0          0         0            0          0         2       10      0       0       0           0      0      23
length or width
                     % of    2.9%         .3%         .3%        0.0%       0.0%               0.0%         0.0%       0.0%     0.0%         0.0%       0.0%      .6%     3.2%    0.0%    0.0%    0.0%                      7.3%
                     Total                                                                                                                                                                                    0.0%   0.0%
paralyzed legs       Count   31           2           2          0         2                  4            2          1         1            0          1         2       47      2       0       0           2      2      101
                     % of    9.9%         .6%         .6%        0.0%      .6%                1.3%         .6%        .3%       .3%          0.0%       .3%       .6%     15.0%   .6%     0.0%    0.0%        .6%    .6%    32.3%
                     Total
Epilepsy             Count   7            0           2          1         0                  0            1          6         0            0          0         2       7       0       0       0           2      2      30
                     % of    2.2%         0.0%        .6%        .3%        0.0%               0.0%        .3%        1.9%      0.0%         0.0%       0.0%      .6%     2.2%    0.0%            0.0%        .6%    .6%    9.6%
                     Total                                                                                                                                                                0.0%
Hunchback            Count   2            0           0          0         0                  0            0          0         0            0          0         0       4       0       0       0           0      0      6
                     % of    .6%          0.0%        0.0%       0.0%       0.0%               0.0%         0.0%       0.0%     0.0%         0.0%       0.0%              1.3%    0.0%            0.0%                      1.9%
                     Total                                                                                                                                        0.0%                    0.0%                0.0%   0.0%
Leprosy              Count   0            0           0          0         0                  0            0          0         0            0          0         0       1       0       0       0           0      0      1
                     % of    0.0%         0.0%        0.0%       0.0%       0.0%               0.0%         0.0%       0.0%     0.0%         0.0%       0.0%              .3%     0.0%    0.0%    0.0%        0.0%   0.0%   .3%
                     Total                                                                                                                                        0.0%
arms difference      Count   0            0           0          0         0                  0            1          0         0            0          0         0       0       0       0       0           0      0      1
in width and
length
                     % of    0.0%         0.0%        0.0%       0.0%       0.0%               0.0%        .3%         0.0%     0.0%         0.0%       0.0%              0.0%    0.0%            0.0%                      .3%
                     Total                                                                                                                                        0.0%                    0.0%                0.0%   0.0%
paralyzed arms       Count   7            3           0          0         1                  1                       1         1            0          0         0       14      1       0       0           0      0      29
                     % of    2.2%         1.0%        0.0%       0.0%      .3%                .3%                     .3%       .3%          0.0%       0.0%              4.5%    .3%             0.0%                      9.3%
                     Total                                                                                                                                        0.0%                    0.0%                0.0%   0.0%
hearing              Count   2            2           0          0         0                  0            0          0         0            0          0         1       2       0       0       0           1      0      8
problems
                     % of    .6%          .6%         0.0%       0.0%       0.0%               0.0%         0.0%       0.0%     0.0%         0.0%       0.0%      .3%     .6%     0.0%            0.0%        0             2.6%
                     Total                                                                                                                                                                0.0%                       0.0%
speech problems      Count   2            0           0          0         1                  0            1          0         1            0          0         0       1       0       0       0                  2      8
                                                                                                                                                                                                              0.0%
                     % of    .6%          0.0%        0.0%       0.0%      .3%                 0.0%        .3%         0.0%     .3%          0.0%       0.0%              .3%     0.0%            0.0%        0      .6%    2.6%
                     Total                                                                                                                                        0.0%                    0.0%
total blindness      Count   4            0           1          0         0                  1            0          1         0            1          0         0       6       0       0       0                  0      14
                                                                                                                                                                                                              0.0%
                     % of    1.3%         0.0%        .3%        0.0%       0.0%              .3%           0.0%      .3%       0.0%         .3%        0.0%      .0%     1.9%    0.0%    .0%     0.0%        0             4.5%
                     Total                                                                                                                                                                                           0.0%
one eye blind        Count   15           1           0          2         2                  0            1          0         0            0          1         2       16      2       1       0                  0      43
                                                                                                                                                                                                              0.0%
                     % of    4.8%         .3%         0.0%       .6%       .6%                 0.0%        .3%         0.0%     0.0%         0.0%       .3%       .6%     5.1%    .6%     .3%     0.0%        0             13.7%




                                                                                                                     111
                  Total                                                                                                                              0.0%
Albino            Count   1       0      0      0      0      0      0       0       0      0      0      0      4       1      0      0             0      6
                                                                                                                                              0.0%
                  % of    .3%     0.0%   0.0%   0.0%   0.0%   0.0%   0.0%     0.0%   0.0%   0.0%   0.0%          1.3%    .3%           0.0%   0             1.9%
                  Total                                                                                   0.0%                  0.0%                 0.0%
feet              Count   2       0      0      1      1      0      0       0       0      1      0      0      11      1      0      1             0      18
abnormalities                                                                                                                                 0.0%
                  % of    .6%     0.0%   0.0%   .3%    .3%    0.0%   0.0%     0.0%   0.0%   .3%    0.0%          3.5%    .3%           .3%    0             5.8%
                  Total                                                                                   0.0%                  0.0%
mental disorder   Count   0       0      0      0      1      0      0       0       0      0      0      0      0       0      0      0      0      1      2
                  % of    0.0%    0.0%   0.0%   0.0%   .3%    0.0%   0.0%     0.0%   0.0%   0.0%   0.0%          0.0%    0.0%          0.0%          .3%    .6%
                  Total                                                                                   0.0%                  0.0%          0.0%
Goiter            Count   1       0      0      0      0      0      0       0       0      0      0      0      0       0      0      0      0      0      1
                  % of    .3%     0.0%   0.0%   0.0%   0.0%   0.0%   0.0%     0.0%   0.0%   0.0%   0.0%          0.0%    0.0%          0.0%                 .3%
                  Total                                                                                   0.0%                  0.0%          0.0%   0.0%
nose problems     Count   0       0      0      0      0      0      0       0       0      0      0      0      1       0      0      0      0      0      1
                  % of    0.0%    0.0%   0.0%   0.0%   0.0%   0.0%   0.0%     0.0%   0.0%   0.0%   0.0%          .3%     0.0%          0.0%                 .3%
                  Total                                                                                   0.0%                  0.0%          0.0%   0.0%
general eye       Count   2       1      0      0      0      0      0       0       0      0      0      1      5       0      0      0      0      0      9
problems
                  % of    .6%     .3%    0.0%   0.0%   0.0%   0.0%   0.0%     0.0%   0.0%   0.0%   0.0%   .3%    1.6%    0.0%          0.0%                 2.9%
                  Total                                                                                                         0.0%          0.0%   0.0%
deformed mouth    Count   0       0      0      0      0      0      0       0       0      0      0      0      2       0      0      0      0      0      2
                  % of    0.0%    0.0%   0.0%   0.0%   0.0%   0.0%   0.0%     0.0%   0.0%   0.0%   0.0%          .6%     0.0%          0.0%                 .6%
                  Total                                                                                   0.0%                  0.0%          0.0%   0.0%
hip problems      Count   0       0      0      0      0      0      0       0       0      0      0      0      1       0      0      0      0      0      1
                  % of    0.0%    0.0%   0.0%   0.0%   0.0%   0.0%   0.0%     0.0%   0.0%   0.0%   0.0%          .3%     0.0%          0.0%                 .3%
                  Total                                                                                   0.0%                  0.0%          0.0%   0.0%
nkhumbumtondo     Count   0       0      1      0      0      0      0       0       0      0      0      0      0       0      0      0      0      0      1
                  % of    0.0%    0.0%   .3%    0.0%   0.0%   0.0%   0.0%     0.0%   0.0%   0.0%   0.0%   0.0%   0.0%    0.0%          0.0%                 .3%
                  Total                                                                                                         0.0%          0.0%   0.0%
Fire              Count   1       0      1      1      0      0      0       1       0      0      0      0      2       0      0      0      0      0      6
                  % of    .3%     0.0%   .3%    .3%    0.0%   0.0%   0.0%    .3%     0.0%   0.0%   0.0%          .6%     0.0%          0.0%                 1.9%
                  Total                                                                                   0.0%                  0.0%          0.0%   0.0%
limb missing      Count   0       0      0      0      0      0      0       0       0      0      0      0      2       0      0      0      0      0      2
                  % of    0.0%    0.0%   0.0%   0.0%   0.0%   0.0%   0.0%     0.0%   0.0%   0.0%   0.0%          .6%     0.0%          0.0%                 .6%
                  Total                                                                                   0.0%                  0.0%          0.0%   0.0%
                  Count   86      10     8      5      8      6      6       10      3      2      2      10     136     7      1      1      5      7      313
                  % of    27.5%   3.2%   2.6%   1.6%   2.6%   1.9%   1.9%    3.2%    1.0%   .6%    .6%    3.2%   43.5%   2.2%   .3%    .3%    1.6%   2.2%   100.0%
                  Total




                                                                            112
113
Appendix 7: Data collection instruments



              The Federation of Disability Organizations in Malawi (FEDOMA)

 EFFECTIVE HIV/AIDS AND REPRODUCTIVE HEALTH INFORMATION TO
      PEOPLE WITH DISABILITIES: A RIGHTS BASED APPROACH

                                              Household Questionnaire

SECTION A: DEMOGRAPHIC CHARACTERISTICS

 Name of            Relationship            Sex                  Age in         Marital       Occupation            Religion
Household            to Head of            Male=1               Completed       Status
 Member              Household            Female=2                Years
  (Q1)                  (Q2)                                      (Q4)            (Q5)          (Q6)                 (Q7)
                                              (Q3)




CODES FOR                        CODES FOR MARITAL                  CODES FOR OCCUPATION          CODES FOR RELIGION
 RELATIONSHIP TO HEAD            STATUS
    OF HOUSEHOLD:                                                  1= Salaried employee         1=Catholic
                                 1 = Never married                 2=Family business worker     2=CCAP
01 = Head                        2 = Married with certificate      3=Commercial farmer          3=SDA
02 = Husband/wife                3 = Married traditional           4=Smallholder farmer         4=Pentecostal
03 = Son/Daughter                4 = Consensual union              5=Student/school pupil       5=Other Christian
04 = Son/Daughter-in-law         5 = Divorced/separated            6=Unemployed                 6=Islam
05 = Grandchild of head/spouse   6 = Widowed                       7=Dependent                  7=Other specify
06 = Parent of head/spouse       7 = Other (specify)               8=Self employed
07 = Brother/Sister of           8 = Don‟t know                    9=Other specify
     head/spouse
08 = Other relative
09 = Domestic worker/Non-
     relative
10 = Other non-relatives
98 = Don‟t know




                                                                 115
SECTION B: TYPE AND CAUSE OF DISABILITY AND SCHOOL
ATTENDANCE

Q8. Could you please describe your disability?



Q9. When did you become disabled? (Enter year when respondent became disabled
_________________)

Q10. What was the cause of your disability?

              Old age                   =1
              Road accident/injury      =2
              Illness                   =3
              Witchcraft                =4
              From birth                =5
              Don‟t know                =6
              Other specify             =7

Q11a. Have you sought (or are you seeking) any treatment for your disability?

              Yes = 1 (If yes go to Q11b)
              No = 2 (If no go to Q12)

Q11b. If yes, where did you seek treatment?

              Public health facility    =1
              Private health facility   =2
              Traditional healer        =3
              Church                    =4
              Other specify             =5

Q11c. What type of treatment are you receiving or have received?

              Assistive devices    =1
              Conventional medicine= 2
              Traditional medicine = 3
              Cannot remember      =4
              Don‟t know           =5




                                             116
Q12a. How do you communicate with others?

               Sign language = 1
               Speech        =2
               Braille       =3
               Body language = 5
               Others        = 6

Q12b. What is the easiest form through which you communicate?

               Sign language = 1
               Speech        =2
               Braille       =3
               Body language = 5
               Others        = 6

Q12c. Is it easy for you to communicate with others?

               Yes = 1 (go to Q12d)
               No = 2 (If no go to Q12e)

Q12d. If yes to Q12c, what makes it easy?

               Speech and hearing = 1
               Braille            =2
               Sign language      =3
               Body language      =4
               Reading            =5
               Writing            =6
               Other specify      =7

Q12e. If no to Q12c, what makes it difficult? Explain.

               Can‟t read                         =1
               Can‟t write                        =2
               Can‟t read Braille                 =3
               Can‟t understand sign language     =4
               Can‟t speak                        =5
               Other specify                      =6




                                            117
Q12f. Do you have access to the following and how useful is it as a tool for
communicating information to you?

Mode of Communication         Access (Yes=1 and No=2)
Radio
Television/video
Drama
Pictures
Print

13. What do other people say about your disability?

               Feel sorry            =1
               They try to help me   =2
               They laugh at me      =3
               Nothing               =4
               Don‟t know            =5

Q14a. Have you ever attended school?
             Yes = 1 (Go to next question)
             No = 2 (If no, go to Q16)

Q14b. Are you currently at school?
             Yes = 1 (Go to Q14c)
             No = 2 (Go to Q15)

Q14c. Which grade are you in?

               Standard 1 = 1
               Standard 2 = 2
               Standard 3 = 3
               Standard 4 = 4
               Standard 5 = 5
               Standard 6 = 6
               Standard 7 = 7
               Standard 8 = 8
               Form 1     =9
               Form 2     = 10
               Form 3     = 11
               Form 4     = 12
               Diploma = 13
               Degree     = 14
               Masters    = 15
               PhD        = 16




                                           118
Q15. What was the highest level of education that you reached?

                Standard 1 = 1
                Standard 2 = 2
                Standard 3 = 3
                Standard 4 = 4
                Standard 5 = 5
                Standard 6 = 6
                Standard 7 = 7
                Standard 8 = 8
                Form 1     =9
                Form 2     = 10
                Form 3     = 11
                Form 4     = 12
                Diploma = 13
                Degree     = 14
                Masters    = 15
                PhD        = 16
(Go to Q 16b)


Q16a. If no to Q14a, why did you not attend school?

                                       Not enough money        =1
                                       Illness                 =2
                                       Lack of interest        =3
                                       Because of disability   =4
                                       School not accessible   =5
                                       Pregnancy               =6
                                       Other (specify)         =7


Q16b. If no to Q14b, why did you leave school?

                                       Not enough money        =1
                                       Illness                 =2
                                       Lack of interest        =3
                                       Because of disability   =4
                                       School not accessible   =5
                                       Pregnancy               =6
                                       Finished school         =7
                                       Other (specify)         =8

Q16c. If it is because of disability, what type of disability made you leave school?




                                            119
Q17., Have you attended adult literacy classes?

                Yes = 1
                No = 2

Q18a. Can you read ………….

                Yes = 1
                No = 2 (Go to Q18b)

If yes in what format?

Form                            English               Chichewa
Print (small)
Print (large)
Braille
Other specify

Q18b. Can you write a simple letter?

                Yes = 1
                No = 2 (Go to Q19)

If yes in what format?

Form                            English               Chichewa
Print
Braille
Other specify


Q19. How do members of your family communicate with you?

                Sign language          =1
                Talking                =2
                Body language          =3
                Writing                =4
                Pictures               =5
                Braille                =6
                Other specify          =7




                                            120
Q20. If you are learning something new, describe the most appropriate learning process
for you to learn that thing. (How would you learn practical skills and facts and figures?)


SECTION C: HIV/AIDS AWARENESS AND KNOWLEDGE


Q21a. Have you ever heard about HIV?

               Yes………………….1 (Go to Q21b)
               No…………………..2 (Go to Q22a)

Q21b. Describe briefly what it means.

               HIV is AIDS                                                  =1
               A disease one gets by having sex with multiple partners      =2
               An organism that causes AIDS                                 =3
               Other specify                                                =4

Q22a. Have you heard about AIDS?

               Yes………………….1 (Go to Q22b)
               No…………………..2 (Go to Q22c)

Q22b. Describe briefly what it is.

               A diseases transmitted through sex                    =1
               A disease without treatment                           =2
               A disease that makes one lose weight                  =3
               Caused by HIV                                         =4
               Other specify                                         =5

Q22c. Can you tell if anyone has HIV just by looking?

               Yes………………….1 (Go to Q22d)
               No…………………..2 (Go to Q22e)

Q22d. If yes to Q22c, how can you tell?

               Constant diarrhea                      =1
               Person loses weight                    =2
               Desire to eat good foods               =3
               Shingles                               =4
               Other specify                          =5




                                            121
Q22e. If No Why is it not possible to tell?

               Because I am blind                         =1
               Symptoms of AIDS similar to other diseases = 2
               If one is tested and communicates results  =3
               Other specify                              =4

Q23a. Is there a difference between HIV and AIDS?

               Yes………1 (Go to Q23b)
               No……….2 (Go to Q24)

Q 23b Can you describe the difference?


Q24.   How did you know about HIV/AIDS?

               Health facilities………………….. 1
               Teachers ……………………….... 2
               Youth peer group …………………3
               Party leader……………………….4
               Religious leaders/Church……..…..5
               Printed material…………………...6
               Parents…………………………….7
               Friends…………………………….8
               Film/Video………………………..9
               NGOs/CBO ……………………...10
               Posters ……………………………11
               Other……………………………...12
               [Specify: _____________________]

Q25a. What are the sources of HIV/AIDS information in this community?

               Health facilities………………….. 1
               Teachers ……………………….... 2
               Youth peer group …………………3
               Party leader……………………….4
               Religious leaders/Church……..…..5
               Printed material…………………...6
               Parents…………………………….7
               Friends…………………………….8
               Film/Video………………………..9
               NGOs/CBO ……………………...10
               Posters ……………………………11
               Other……………………………...12
               [Specify: _____________________]



                                              122
Q25b. What are the three most important sources of information on HIV/AIDS and why?

               Health facilities………………….. 1
               Teachers ……………………….... 2
               Youth peer group …………………3
               Party leader……………………….4
               Religious leaders/Church……..…..5
               Printed material…………………...6
               Parents…………………………….7
               Friends…………………………….8
               Film/Video………………………..9
               NGOs/CBO ……………………...10
               Posters ……………………………11
               Other……………………………...12
               [Specify: _____________________]

Q26a. Are there any HIV/AIDS education activities in your community?
              Yes………………………..1 (Go to Q26b)
              No………………………...2 (Go to Q27)

Q26b. Who conducts these HIV/AIDS education activities?

               Peers                  =1
               NGOs                   =2
               Drama Groups           =3
               Other specify          =4

Q26c. Do you participate in these HIV/AIDS education activities?
             Yes………………………..1 (Go to Q26e)
             No………………………...2 (Go to 26d)

Q26d. If no to Q26c, why don‟t you participate?



Q26e. If yes, to Q26c, are there any difficulties that you face during these health
education activities?

               Yes………………………..1
               No………………………...2

Q27a. What problems do you face in accessing information on HIV/AIDS?

               None                   =1
               Old age                =2



                                            123
              Lack of materials     =3
              Lack of a person to guide me = 4
              Other specify         =5

Q27b. What would be the best methods of communicating information on HIV/AIDS to
you?
            Radio          =1
            Drama          =2
            Youth peer groups = 3
            Teachers       =4
            NGOs           =5
            Other specify = 6

Q28a. How can HIV be transmitted? (Circle as many options as the respondent suggests)

              Sexual intercourse without a condom..…...1
              Sex with a condom ……………………….2
              Mosquito bite…………………………..…3
              Sharing tooth brush……………………….4
              Kissing……………………………………5
              Sharing clothes/bedding…………………..6
              Blood transfusion…………………………7
              Sharing razor blades………………………8
              Unsterilized needles………………………9
              Mother to child…………………………..10
              Promiscuity………………………………11
              Caring for people living with HIV/AIDS..12
              Sharing food ……………………………..13
              Other…………………………………..…12
              Eating with an HIV+ person ……………13
              [Specify: ___________________________]

Q28b. Is there a possibility of you contracting HIV and why?




Q28c. Can HIV be transmitted from mother to child?

              Yes………………….1
              No…………………..2
              Sometimes………….3
              Don‟t know…………4




                                          124
Q29c. Please state reason for your answer




Q29a. Does your disability increase your risk of contracting HIV?

               Yes………………….1 (Go to 29b)
               No…………………..2 (Go to Q29c)

Q29b. If yes, explain why this is the case.




Q29c. If no, why?




Q30a. Are there any cultural beliefs/practices that predispose people with disabilities to
HIV/AIDS?
              Yes………………….1 (Go to Q30b)
              No…………………..2 (Go to Q31)

Q30b. If yes, what are these practices/beliefs?




Q31. How can the transmission of HIV be prevented? (Circle as many options as
respondent mentions)

               Using condoms………………………………1
               Abstinence …………………………………..2
               Avoiding sex with multiple partners…………3
               Avoiding sharing razor blades………………..4
               Avoiding sharing tooth brushes………………5
               Avoid kissing…………………………………6
               Avoid sharing beddings/clothes………………7
               Avoid sharing food…………………………..8
               Blood test ……………….……………………9
               Other………………………………………….10
               [Specify:____________________]



                                              125
Q32a. Are there any cultural or religious practices/beliefs that can prevent you from
      adopting HIV/AIDS preventive measures?

               Yes………………….1 (Go to Q32b)
               No…………………..2 (Go to 33a)

Q32b. What are they?




Q33a. Are there any cultural or religious beliefs that can be used to prevent HIV/AIDS?

               Yes………………………….1 (Go to Q33b)
               No…………………………..2 (Go to Q34a)

Q33b. What are these beliefs?




Q34a. Do you know anyone ………….

        a. With a disability who has AIDS                           Yes            No
        b. Without a disability who has AIDS                        Yes            No

Q34b. If yes to either Q31a or 31b, how do you know?




Q34c. How has the knowledge of the person with AIDS affected your relationship with
that person?




                                           126
Q34d. How has your knowledge about HIV/AIDS influenced your behaviour?




Q35a. Have you ever looked after or are you looking after someone who is chronically
ill?
             Yes………………………….1 (Q35b)
             No…………………………..2 (Go to Q36)

Q35b. What problems do you face or did you face looking after the chronically ill
persons?
             Food shortage                        =1
             Lack of funds                        =2
             Staying long in hospital             =3
             Difficult to feed, dress and bath    =4
             No problems                          =5
             Other specify                        =6

Q35c. How do you cope with such problems?




Q36. Do you know anyone ………..

       (a) with a disability who died of HIV/AIDS related illnesses? Yes = 1, No = 2

       (b) without a disability who died of HIV/AIDS related illnesses? Yes = 1, No = 2

       If yes to go to Q37
       If No to both Go to Q39

Q37. How did you know the person died of AIDS?

              Person told me……………….1
              People told me……………….2
              Assumed……………………..3
              Hospital Records…………….4



                                          127
              Other…………………………5
              [Specify:_______________]

Q38. What was the relationship between you and this person who died of AIDS?

              Not related…………………….1
              Relative………………………..2
              Friend………………………….3
              Workmate……………………...4
              School mate……………………5
              Other…………………………...6
              [Specify__________________]


SECTION D: VOLUNTARY COUNSELLING AND TESTING

Q39.Do you know what voluntary counseling and testing is?

              Yes ………………………1 (Go to Q40)
              No …………………….…2 (Go to Q42)

Q40. If yes to Q38, what do you know about VCT?

Q41. How did you know about voluntary counseling and testing?

              Health facilities………………….. 1
              Teachers ……………………….... 2
              Youth peer group …………………3
              Party leader……………………….4
              Religious leaders/Church……..…..5
              Printed material…………………...6
              Parents…………………………….7
              Friends…………………………….8
              Film/Video………………………..9
              NGOs/CBO ……………………...10
              Posters ……………………………11
              Other……………………………...12
              [Specify: _____________________]


Q42. Do you know where one can go for voluntary counseling and testing?

              Yes …...…………………1 (Go to 43)
              No ………………………2 (Go to 44a)




                                        128
Q43. Mention the places where one can go for VCT.

              NAPHAM                 =1
              MACRO                  =2
              Banja la Mtsogolo      =3
              Health facilities      =4
              Other specify          =5

Q44a. Have you gone to a health facility for an HIV test?

              Yes ………………………1 (Go to 44b)
              No ……….………………2 (Go to Q46)

Q44b. Did you go through with the results?

              Yes ………………………1 (Go to Q45)
              No ……….………………2 (Go to Q46)

Q45. If yes to Q44a, what influenced you to go for voluntary counseling and testing?




Q46a. Why have you not gone for VCT?

              Old age               =1
              Don‟t know what it is = 2
              Cannot walk           =3
              No transport          =4
              I am okay             =5
              No one to guide me = 6
              They will pump all the
              blood from my body = 7
              Other specify         =8

Q46b. What may influence you to go for voluntary counseling and testing?

              Having sex with someone I am not sure of            =1
              If s/he gets sick                                   =2
              If one wants to know his/her status                 =3
              If spouse of sexual partner died of AIDS            =4
              Other specify                                       =5

Q47a. If you were to go for an HIV test, would you like to know your sero-status?




                                          129
              Yes……………………….1 (Go to 47c)
              No………………………..2 (Go to 47b)

Q47b. If not why not?




Q47c. What would be the most appropriate way of communicating HIV test results to
you and why?




Q47d. If you were positive, who would you tell and why?

              Parents               =1
              Friends               =2
              Husband/wife          =3
              Children              =4
              Other specify         =5


Q48. If none to Q47d, why would you not tell anyone?

              It is confidential                   =1
              Fear of stigma                       =2
              Shame                                =3
              Would want to spread the disease     =4
              Other specify                        =5

SECTION E: SEXUAL AND REPRODUCTIVE HEALTH

Q49a. Have you ever had sexual intercourse?
             Yes………………….1 (Go to Q49b)
             No…………………..2 (Go to Q49d)

Q49b. What were the reasons for being involved in sexual intercourse?




Q49c. How old were you when you first had sexual intercourse? __________ years.




                                         130
Q49d. Was that out of choice?
             Yes………….1. (Go to Q51a)
             No………….2. (Go to 50a)

Q50a. Have you ever been denied sex or a sexual relationship because of your disability?
             Yes………………….1 (Go to Q50b)
             No…………………..2 (Go to Q51)


Q50b. How did you know that you were denied sex or a sexual relationship because of
your disability?



Q51a. Are you or have you ever been involved in an intimate/love relationship/marriage?
             Yes………………….1 (Go to Q51b)
             No…………………..2 (Go to Q51c)

Q51b. Does/did your partner have a disability?
             Yes ………………………1 (Go to Q51d)
             No ……….………………2 (Go to Q51d)

Q51c. Was it directly related to your disability? (Go to Q55)
              Yes                                     =1
              No                                      =2


Q51d. How easy was it for you to get into that relationship?



Q52a. Do you face any problems in relation to sexual intercourse?
             Yes………………….1 (Go to Q52b)
             No…….…………..2 (Go to Q53)

Q52b. If yes, what problems do you have?




Q53. Do you find it easy to get into a sexual relationship?
              Yes………………….1 (Go to Q54a)
              No…………………..2 (Go to Q54b)



                                            131
Q54a. If yes, why?



Q54b. If not why?




Q55a. Have you had sex against your will?
             Yes………………….1 (Go to Q55b)
             No…………………..2 (Go to Q56)


Q55b. What were the circumstances under which this occurred?


SECTION F: KNOWLEDGE ABOUT CONDOMS AND CONDOM USE


Q56. Do you know what a condom is?

              Yes………………….1 (Go to Q57)
              No…………………..2 (Go to Q66)

Q57. Do you know how to use it?

              Yes………………….1 (Go to Q58)
              No…………………..2 (Go to Q59)


Q58. Where did you learn about using condoms?

              Through youth peer groups                 =1
              Hospital staff                            =2
              Radio                                     =3
              Grocery/shops                             =4
              Other specify                             =5

Q59. Have you ever tried to use condoms?

              Yes………………….1 (Go to Q60a)
              No…………………..2 (Go to Q61)

Q60a. If yes, why did you use a condom?



                                           132
Q60b. How often do you use condoms?




Q61. If no to Q59, why have you not tried to use condoms?




Q62. Do people with disabilities have any difficulties in using condoms?

                      Yes………………1 (Go to Q62b)
                      No……………….2 (Go to Q63)

Q62b Describe the difficulties




Q63. Is it easy for you to get condoms here? Explain.

                      Yes                           =1
                      No                            =2

Q64. Where are condoms available in your community?

                      Don‟t know            =1
                      Health facility       =2
                      Grocery/shop          =3
                      Other specify         =4

Q65a. Do you know how to store condoms?

              Yes ………………………1 (Go to Q65b)
              No ……….………………2 (Go to Q66)




                                          133
Q65b. Can you describe how you should store a condom?



Q66. Mention the sexually transmitted diseases that you know of.


Q67. What was your source of information about these diseases?

              Health facilities………………….. 1
              Teachers ……………………….... 2
              Youth peer group …………………3
              Party leader……………………….4
              Religious leaders/Church……..…..5
              Printed material…………………...6
              Parents…………………………….7
              Friends…………………………….8
              Film/Video………………………..9
              NGOs/CBO ……………………...10
              Posters ……………………………11
              Other……………………………...12
              [Specify: _____________________]


Q68. What source of information on sexually transmitted diseases would you prefer to
use and why?

              Health facilities………………….. 1
              Teachers ……………………….... 2
              Youth peer group …………………3
              Party leader……………………….4
              Religious leaders/Church……..…..5
              Printed material…………………...6
              Parents…………………………….7
              Friends…………………………….8
              Film/Video………………………..9
              NGOs/CBO ……………………...10
              Posters ……………………………11
              Other……………………………...12
              [Specify: _____________________]


Q69a. Have you ever contracted a sexually transmitted diseases?

              Yes ………………………1 (Go to Q69b)
              No ……….………………2 (Go to Q70)



                                          134
Q69b. If yes, did you seek any treatment?

              Yes ………………………1 (Go to Q69d)
              No ……….………………2 (Go to Q69c)

Q69c Why did you not seek treatment?



Q69d. Where did you seek treatment?
             Health facility …………….1
             Traditional healer…………2
             Bought drugs from shops…3
             Other specify …………….4

Q69e. Was there a way you could have prevented contracting the STD?
             Yes ………………………1 (Go to Q 69f)
             No ……….………………2 (Go to Q 69g)

Q69f. If yes to Q69e, how?


Q69g If not can you explain?



SECTION G: KNOWLEDGE AND USE OF FAMILY PLANNING SERVICES

Q70. Do you use any family planning methods?
             Yes………………….1 (Go to 71)
             No…………………..2 (Go to Q72)

Q71. If yes, which family planning methods do you use?




Q72. If no, why don‟t you use any family planning methods?




                                            135
Q73. What are your sources of information about family planning?

              Health facilities………………….. 1
              Teachers ……………………….... 2
              Youth peer group …………………3
              Party leader……………………….4
              Religious leaders/Church……..…..5
              Printed material…………………...6
              Parents…………………………….7
              Friends…………………………….8
              Film/Video………………………..9
              NGOs/CBO ……………………...10
              Posters ……………………………11
              Other……………………………...12
              [Specify: _____________________]

Q74. Do you have difficulties when accessing information on family planning?

              Yes………………….1 (Go to Q75)
              No…………………..2 (Go to Q76)

Q75. If yes to Q74, what problems do you face?




Q76. How is family planning information currently communicated to you?

              Health facilities………………….. 1
              Teachers ……………………….... 2
              Youth peer group …………………3
              Party leader……………………….4
              Religious leaders/Church……..…..5
              Printed material…………………...6
              Parents…………………………….7
              Friends…………………………….8
              Film/Video………………………..9
              NGOs/CBO ……………………...10
              Posters ……………………………11
              Other……………………………...12
              [Specify: _____________________]




                                         136
Q77. How best can such information be communicated to you?

              Health facilities………………….. 1
              Teachers ……………………….... 2
              Youth peer group …………………3
              Party leader……………………….4
              Religious leaders/Church……..…..5
              Printed material…………………...6
              Parents…………………………….7
              Friends…………………………….8
              Film/Video………………………..9
              NGOs/CBO ……………………...10
              Posters ……………………………11
              Other……………………………...12
              [Specify: _____________________]

Q78a. (For female respondents) How many times have you been pregnant?

(If no children go to Q91)


Q78b. How do people react to see you pregnant?

Q78c Have you ever attended antenatal classes?

                     Yes…………1(Go to Q78d)
                     No…………..2 (Go to 78e)


Q78d What information about sexual reproductive health did you learn at antenatal
classes?



Q78e Why did you not attend antenatal classes?




Q79. How many pregnancies ended before term?




                                          137
Q80a. Did any of your children die before the age of 5 years?

               Yes………………….1 (Go to Q80b)
               No…………………..2 (Go to Q81)

Q80b. What was the cause of death?



Q81. How many children do you have now?


Q82a. Are these children of the same father/mother?

               Yes………………….1 (Go to Q82b)
               No…………………..2 (Go to Q82d)

Q82b. Is the father/mother around?

               Yes……………..1 (Go to Q83)
               No………………2 (Go to Q82c)

Q82c. If she/he is not around, where is she/he?

Q82d. Does the absent parent provide support for the child?

               Yes……………1 (Go to Q83)
               No…………….2 (Go to Q82e)

Q82e What are the reasons for them not to provide support?




Q83. Let us consider your last child, where was he or she delivered?

               Home            =                      1
               TBA             =                      2
               Health center   =                      3
               District Hqs    =                      4
               Other           =                      5

Q84. Why did you go there for delivery?




                                           138
Q85. After delivery, who was the first person to communicate with you?




Q86. How was information about baby care and other such information communicated to
you?




Q87a. Was this information adequate?

              Yes…………..1 (Go to Q88)
              No……………2 (Go to Q87b)

Q87b Why not?



Q87c. If it was not adequate, did you attempt to seek information from other sources?


Q88. How long does it take you to reach your nearest antenatal/health clinic?


Q89a Do you experience any difficulties looking after your children?

              Yes……………1 (Go to Q89b)
              No…………….2 (Go to Q91)

Q89b Can you explain the difficulties you experience?




Q90 Do you require extra assistance to look after your children?

              Yes……………..1 (Go to Q90b)
              No………………2 (Go to Q 91)




                                           139
Q90b Who assists you and what do they have to do?



Q91 What are your biggest fears/concerns regarding sexual and reproductive health
issues?




Q92 How could the government assist you to alleviate these fears?




                                          140
INTERVIEW WITH VERY CLOSE FAMILY MEMBERS TO PEOPLE WITH
                      DISABILITIES


  1. Could you please explain the type of disability that …. has?
  2. What form of assistance does he or she need?
  3. Who provides this assistance?
  4. How do you communicate with him/her? Describe the extra techniques you
     have learnt to use to improve communication that the general community fails
     to use, for example if you have to communicate issues of death, conflict etc.
  5. How do anankungwi, azamba and other members of the community
     communicate issues such as marriage and sex to him or her? If they are not
     included in such initiations, how does your relative learn about these things? If
     they are taught by you or someone else, how are messages communicated?
     Are you able to explain everything? Which bits are easy for you/them to
     explain? Which bits are difficult and why?
  6. What are the different sources of information on HIV/AIDS and sexual and
     reproductive health in this community?
  7. How appropriate are these channels of communication?




                                        141
FGD GUIDE WITH MEMBERS OF THE COMMUNITY


  1. BELIEFS ABOUT DISABILITY

       Forms of disability (Facilitator should ensure that all forms are discussed with
        respect to cause and prevention).
       What problems do people with disabilities have? (education, health,
        employment, information etc).
       How are people with disabilities viewed by the community?
       Have you ever heard anything concerning HIV/AIDS and Disability

  2. HIV/AIDS ISSUES

       What is your understanding of HIV/AIDS (ask about transmission and
        prevention).
       How do people in the community access information on HIV/AIDS?
       Are people with disabilities able to access information in the community?
       Probe what would be the most appropriate way of communicating.
       Are people with disabilities at risk of contracting HIV/AIDS? Are there
        particular groups of people with disabilities more at risk?

  3. CONDOM USE

       What would be the most appropriate way of communicating information on
        condom and condom use to people with disabilities?
       Probe how you would do a condom demonstration.
       Would people with disabilities have any difficulties with regard to using
        condoms? If yes, what difficulties would they face? Is there anything that can
        be done to address these problems?
       What are your feelings or concerns about using condoms?
       How appropriate is condom use for persons with disabilities?

  4. VOLUNTARY COUNSELLING AND TESTING

       Facilitator should explain what VCT is all about)
       Is this information accessible to people with disabilities? Probe for barriers to
        access to this information for people with disabilities.
       Do people go for HIV testing?
       Factors that determine one‟s decision to go for an HIV test.
       Barriers that prevent one from going for testing..
       Factors that promote or discourage one to disclose his or her HIV status.
       Factors that would promote the uptake of VCT services.
       Where are VCT services offered and how far?



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       Are these places accessible to people with disabilities? Probe for physical
        access and communication difficulties.
       How could access be made easier?

5. SEXUAL AND REPRODUCTIVE HEALTH ISSUES


   Do people with disabilities face any problems establishing intimate relationships?
   If yes what are those problems? ….Probe are these problems the same for women
    and men?
   What are the most common methods of family planning in your area?
   What sources of family planning are available to you?
   How does society perceive people with disabilities having children?
   Are there antenatal services available in your area?
   Are they accessible for persons with disabilities? Probe physical, communication,
    stigma- how are women treated at antenatal services?
   What strategies are used to communicate information on care after delivery to
    expectant mothers? Are these strategies appropriate for people with disabilities? If
    not, what would be the most appropriate way? Which languages are used?




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