Document Sample
					                              CHAPTER FOUR


4.1   Introduction

      According to de Vos et al. (2002, 339), data analysis is “the process of
      bringing order, structure and meaning to the mass of collected data”. The
      methodological process of data analysis was comprehensively discussed
      in the previous chapter, and the results of this analysis will subsequently
      be reported in this chapter.

      In terms of the process that was employed in the analysis of the data, the
      following needs to be mentioned in terms of orientation towards the
      contents of this chapter:

      After coding the qualitative data, the researcher focused on establishing
      links between the different data contexts, in order to formulate themes as
      the desired outcome of the analytical process.        The contents of the
      themes will be fully reported upon in this chapter.

      At this point in time, it is important to again consider the fact that the
      contents of the quantitative data measuring instrument was guided by the
      themes that emerged through the qualitative data analysis process.
      Subsequently, the data obtained through the quantitative data analysis
      process, will be reported in relation to the contents of the qualitative

      This served to both strengthen the qualitative findings, as well as to
      provide a logical synthesis between the qualitative and quantitative data

      within the global context of the research question, and as such utilized the
      different sets of data as triangulation of method.         The aspect of
      triangulation was fully reported upon in Chapter 3.

4.2   Qualitative Data Analysis

      After appropriate structuring, coding and linking between different data
      contexts, and the refinement of data, the following themes were
      formulated as a result of the qualitative data analysis.

4.2.1 Theme 1

      When a family member becomes terminally ill, the focus of concern
      becomes the patient and the illness of the patient, with diminished support
      for the healthy members of the family.

4.2.2 Theme 2

      The general focus on the patient during the terminal phase, has a
      restricting influence on the communication patterns within the family. In
      order to accommodate the needs of the patient further, the contents of
      communication is often based on what family members perceive as that
      which the patient wants to hear.

4.2.3 Theme 3

     Exposure to the terminal situation over time, contributes to the
     development of more open channels of communication.             Due to the
     unforeseen progress of the illness, however, the family may not be
     afforded ample time in which to develop open communication.

4.2.4 Theme 4

     Healthy family members display an urgent need for medical information
     with regard the diagnosis, prognosis and process of the disease. The
     transference of medical knowledge from the medical practitioner to the
     patient and the family appears to be problematic.

4.2.5 Theme 5

     Families experience difficulties in terms of access to medical practitioners.
     When families manage to establish contact with the medical practitioner,
     they often experience the disclosure as being dealt with in an insensitive

4.2.6 Theme 6

     A need to explore alternative therapies becomes a reality with both the
     patient as well as their families. This venture is often rejected by the
     medical practitioner, who is perceived as unwilling to share the domain of
     traditional allopathic medicine.

4.2.7 Theme 7

     In terms of diagnosis, medical practitioners tend to offer a life expectancy
     limit to families, which in itself creates emotional havoc, while

     compounding personal conflicts when this given life expectancy is
     exceeded for an unknown period of time.

4.2.8 Theme 8

     The nature of terminal illness leads to a heightened sense of responsibility
     for the family as immediate support structure for the patient.       Family
     members are simultaneously experiencing guilt regarding the level of
     quality care they are equipped to render, as well as serious doubt in terms
     of the acceptable level of quality care delivered.

4.2.9 Theme 9

     Family members tend to compare the quality of their individual care with
     that of other caregivers, which may result in feelings of inadequacy. As
     such family members need to be reassured that the quality of care
     rendered as indeed of an acceptable standard.

4.2.10 Theme 10

     The care-giving function implies the acceptance of a variety of new roles
     not previously being fulfilled by family members. These roles may include
     both supportive action as well as assuming roles previously fulfilled by the
     patient, but which, as a result of the illness, has become a physical
     impossibility for the patient.

4.2.11 Theme 11

     The most pressure in terms of the assumption of new roles is placed on
     people who assume the primary care of the patient.           As such, the

     assumption of these roles contributes to increased physical tension and
     resultant fatigue.

4.2.12 Theme 12

     The nature of the terminal illness, combined with the assumption of new
     roles, inevitably leads to increased stress experienced by the family

4.2.13 Theme 13

     In terms of dealing with anger displayed by the patient, a well established
     relationship with the patient contributes to an understanding and
     acceptance of this anger, especially an understanding that anger from the
     patient is often projected upon the person who has the strongest
     emotional bond with the patient.

4.2.14 Theme 14

     The need for support from others, particularly other family members, or
     people close to the family and the patient, is imperative as a successful
     mechanism in dealing with the terminal situation. This support needs to
     include a genuine gesture of care directed towards the caregiver as well.

4.2.15 Theme 15

     A need for professional support in terms of coping with all stressors
     pertaining to the terminal situation, is evident. Of particular concern is the
     uncertainty regarding existing resources which can be utilized for
     professional support.

4.2.16 Theme 16

     A further dimension of supportive needs is that of self-care for the
     caregiver, particularly when taking into consideration the general absence
     of focus on the personal and emotional needs of the caregiver, which
     becomes of secondary concern in the terminal situation where the specific
     needs of the patient become paramount.

4.2.17 Theme 17

     Support needs to include practical issues, such as general assistance with
     care, shopping and housekeeping, which can alleviate stress and create
     an environment where the caregiver has an opportunity for more rest,
     thereby being able to generate sufficient energy for fulfilling the care-
     giving role adequately.

4.2.18 Theme 18

     Financial support remains a primary focus of concern, particularly when
     taking into consideration the enormous medical expenses that inevitably
     accumulate during the often long-term process of the terminal situation.

     The themes, as formulated above, represent the results of the qualitative
     data analysis process. In order to substantiate these themes further, the
     following two levels of elaboration will be applied to each theme

     a)     The validity of each theme will be tested against current literature.

             This process involves a thorough literature control study whereby
             each theme will be placed within the context of existing literature,
             and as such, will be either:
                    i)      confirmed,
                    ii)     contradicted, or
                    iii)    identified as previously unreported, subsequently
                            representing new insights altogether.

             This control study will be fully reported on in Chapter 5.

      b)     The quantitative data obtained from the questionnaire, will be
             related to, and controlled against, each theme. Separate items in
             the questionnaire will be isolated and applied to the relevant
             themes. A detailed description of this triangulation method will be
             provided in the following section.

4.3   Quantitative Data Analysis

      The quantitative data obtained from the questionnaire was analyzed by
      the Statistical Consultation Services of Rand Afrikaans University. The
      analysis of the data will be presented on 4 levels, namely:

      (i)    A summary of the biographical analysis pertaining to the
             respondents involved in the completion of the questionnaire, will be
             provided. Some biographical data on the patients about whom the
             respondents reported, will also be supplied.

      (ii)   A summary of the statistical analysis including the results of the
             factor analysis, T-Tests and ANOVA tests that were executed will
             be provided.

      (iii)   Each item in the questionnaire that relates to the themes that were
              formulated in the qualitative data analysis, will be quantitatively
              reported upon as a means of triangulation. The themes will not be
              recorded in full, as this was done in the section on qualitative data
              analysis, and will merely be referred to numerically.

      (iv)    Finally, a summary of the findings that pertain to the open-ended
              question in the questionnaire, and that was manually analyzed, will
              be provided.

4.3.1 Biographical Analysis

       A total of 107 completed questionnaires were analyzed. The distribution
       of respondents in terms of gender can be illustrated as follows:

                  MALE             FEMALE

                   31.8%             68.2%            N = 107

      Table 1. Distribution of respondents according to gender

      The questionnaire was completed by 34 male and 73 female caregivers
      respectively. The mean age of the respondents was 42.51 years, with the

        youngest caregiver being 16 years old and the oldest caregiver being 74.
        In both extremes, only one respondent fitted the category.       The age
        distribution was extremely wide between the extremes, with a total of 6
        respondents being 37 years of age, which represented the biggest group
        in terms of age distribution (5.6%).

        Due to the wide distribution of age groups, the total sample was divided
        into 3 main age groups, which is illustrated as follows:

        N = 107

       25%                                         28%          28%

                  BELOW 40              40-49          50 AND OLDER

Table 2. Distribution of respondents according to age groups.

        The relationship of the respondents to the patients, emerged as follows:

               N = 107                                  Count             %
               Spouse                                     36             33.6
               Parent                                     30             28.0
               Grandparent                                 4             3.7
               Sibling                                     7             6.5
               Step-Sibling                                1             0.9
               Child                                       5               4
               Stepchild                                   1             0.9
               Partner                                     7             6.5
               Extended Family Member                     10             9.3
               Friend                                      8             5.6

Table 3. Relationship of respondents to the terminally ill patients.

         Spouses, as first-order relations, therefore represented the highest
         percentage of care providers. This was closely followed by the parents of
         patients who acted as care providers.

         The level of care that was provided by the respondents can be illustrated
         as follows:                                                               N = 107


                 60.00%                     PRIMARY
                 50.00%                       62.6%
                 30.00%                                    CAREGIVER            OCCASIONAL
                                                              30.8%             CAREGIVER
                 20.00%                                                            6.5%


Table 4. Distribution of Respondents according to the level of care provided.

A total of 67 respondents acted as primary caregivers, 33 respondents
were secondary caregivers, while 7 of the respondents provided
occasional care.

The age of the patients to whom care was directed, was also widely
distributed. For this reason, the total sample was again divided into age
groups, and can be illustrated as follows:

  N = 107


  20.00%                                                      20.6%




               BELOW 35             35 TO 49            50 TO 64      65 & OLDER

Table 5. Distribution of patient according to age groups.

The youngest patient was found to be 15 years old (1 response) and the
oldest patient, 82 years old (1 response). The biggest patient group in
terms of age, was found to be 69 years old (5,6%), closely followed by the
ages 68 (4.7%) and 56 (4.7%).

        A total of 80 patients were diagnosed with terminal cancer, while 27
        patients suffered from a terminal disease other than cancer. Of these, 14
        patients (13%) of the total number of patients) were terminal HIV/AIDS
        patients. Graphically, this distribution can be depicted as follows:

                 N = 107




Table 6. Distribution of patients according to a diagnosis of cancer as opposed to other terminal

4.3.2 Statistical Analysis

        The total of 107 respondents completed questionnaires that were
        analyzed, made the implementation of a factor analysis possible. In terms

of the factor analysis, the following parts of the questionnaire were
subjected to this statistical method:

(i)     Question 10 (items 58 to 69)
(ii)    Question 13 (items 92 to 119)
(iii)   Question 14 (items 120 to 136)

These questions represent the content of the items that relate specifically
to the themes that were generated through the qualitative data analysis
process.    Statistical deductions in terms of the biographical data have
been presented in the previous section.

The analysis of each of the 3 relevant questions produced a single factor
each, which is statistically sound. The 3 factors that emerged can be
defined as follows:

(i)     Factor 1

        The extent to which caregivers utilize various sources of
        information regarding the illness of the patient.

(ii)    Factor 2

        The extent to which respondents experience difficulty in coping with
        the terminal situation.

(iii)   Factor 3

        The extent to which respondents display a positive personal
        experience of their care-giving function.

The reliability of all three factors emerged as statistically sound with
specific results as follows:

(i)     Factor 1

        This factor seemed to be reliable in that the Cronbach Alpha was
        close to being 0.7,    with 0.7 being accepted as the norm for
        reliability testing. The total was 0.6703. This analysis included all
        items in Question 10 except the category of “nurses”, which
        emerged as a separate source of information, and the category of
        “other” which was not utilized by any of the respondents.

(ii)    Factor 2

        This factor emerged as being very reliable in that the Cronbach
        Alpha was significantly larger than 0.7 (Total : 0.8768). This total
        was derived at with the exclusion of items 13.1, 13.4, 13.12 and
        13.13. The content of these questions were, however, satisfactorily
        captured by other relevant items in the questionnaire.

(iii)   Factor 3

        This factor has measured as being reliable with a total Cronbach
        Alpha of 0.7349. According to diagnostic principles, items 14.6,
        14.13 and 14.16 were excluded from the factor analysis due to the
        MSA (Measure of Sampling Adequacy) being < 0.7. The omitted
        questions were again captured by other relevant items, except for
        the question regarding specific knowledge of The Hospice
        Association of Southern Africa as a resource.            However, this
        omission will not influence the conclusive findings per se, as this

item was incorporated for exclusive feedback to The Hospice
Association of Southern Africa.

Upon completion of the factor analysis, a score for each respondent
in terms of each of the three factors have been calculated. The
statistical question, pertaining to whether different groups of
respondents differ in terms of mean factor scores, now emerged.

In order to answer the above question, the statistical process of T-
Testing was employed.         This was done in order to establish
relationships between 2 different            groups, e.g. male/female
caregivers,   primary/secondary       caregivers,    cancer/non-cancer
patients etc. In the event of more than one group being involved in
the analysis, the ANOVA test was employed. The only difference
between the two tests are the number of groups involved, while the
initial questions remain the same.

The results of the T-tests and ANOVA tests can be summarized as

(i)    No significant difference was found between male and
       female caregivers in terms of all three factors.

(ii)   In terms of the age groups of caregivers, the age group
       below 40 utilized various sources of information regarding
       the illness of the patient the most, and the age group 50 and
       older, the least.

       The age group 50 and older reported the most difficulties in
       coping with the terminal situation, while the age group 40 to
       49 reported the least difficulties.

        Subsequently, the 40 to 49 age group reported the highest
        level of experiencing their care-giving function in a positive
        manner, and the 50 and older age group, the lowest level of
        positive experience.

(iii)   Regarding the relationship between the caregiver and the
        patient, the following was found:

        (a)    Spouses (first-order relatives) made the least use of
               external resources to obtain information regarding the
               illness of the patient, followed by second-order
               relatives (parents and grandparents).         Third-order
               relatives made the most use of external resources for

        (b)    Spouses were also found to have the highest level of
               difficulty in coping with the terminal situation, followed
               by    third-order   relations,    while   parents    and
               grandparents experienced the least difficulty in coping
               with the terminal situation.

        (c)    Subsequently, parents and grandparents displayed
               the highest level of experiencing their caregiving
               function in a positive manner, followed by third-order
               relations. Spouses emerged as having the least
               positive experience in terms of care provision.

(iv)    Finally, the following can be reported regarding the type of
        terminal illness that presents in the family:

                     (a)   The extent to which a variety of external resources
                           are utilized to obtain information regarding the specific
                           illness is significantly higher in the case of cancer, as
                           opposed to other terminal illnesses.

                     (b)   Cancer was found to produce higher levels of difficulty
                           in coping with the disease, than other terminal illness.

                     (c)   There was no significant difference in terms of the
                           personal experience of the terminal situation by
                           caregivers    when    comparing     different   terminal

4.3.3 Thematic Analysis

     The quantitative findings pertaining to the themes that emerged through
     the qualitative data analysis process, will henceforth be reported on,
     according to the numerical headings of the themes as presented earlier in
     this chapter.

     Theme 1

     With reference to the shift in focus in the terminal situation, where the
     patient becomes the main focus of concern, the following has been found:

     (i)    A total of 93 respondents either agreed or totally agreed with the
            fact that their attention is mostly directed at the patient.        This
            represents an agreed response of 86.9%.           Only 5 respondents
            (4.7%) either disagreed or totally disagreed with this statement.

(ii)    84 respondents (79.3%) either agreed or totally agreed that the
        needs of the patient were more important than their own.            8
        Respondents (7.5%) either disagreed or totally disagreed with this

(iii)   44 Respondents (41.5%) agreed that they are neglecting the other
        members of their family in lieu of the patient.       38 Respondents
        (35.8%) disagreed with this notion, while 24 respondents (22.6%)
        remained neutral on this issue.

(iv)    68 Respondents (64.8%) indicated that they have experienced a
        decrease in their social activities, while the remaining 35.2% of the
        respondents did not experience this social decline.

Theme 2

In considering the communication dynamics that prevail in the terminal
situation, the following findings can be reported:

(i)     62 Respondents (58.5%) either agreed or totally agreed that the
        contents of their communication was based on what they believed
        the patient wanted to hear. 27 Respondents (27.4%) disagreed
        with this notion.

(ii)    Conversely,     74   respondents   (69.1%)    believed    that   their
        communication with the patient was open and honest, while only 21
        respondents (19.7%) experienced difficulties with honest and open

Theme 3

With reference to the improvement of communication over a period of
time, 65 respondents (62.7%) indicated that their communication with all
members of the family has been positively enhanced by the terminal
illness. 19 Respondents (17.7%) disagreed with this development while
23 respondents (21.5%) remained neutral on this issue.

Theme 4

With regards to the need for medical information, 85 respondents (79.4%)
agreed or totally agreed that this was a pertinent need in the terminal
situation. Only 7 respondents (6.5%) disagreed with this perception. The
right to seek other medical opinions was understood by 71 respondents
(66.4%), while a disturbing 36 respondents (30.9%) either disagreed or
were uncertain regarding this right.

Theme 5

With   reference    to   experienced      difficulties   in   accessing   medical
practitioners, the following was found:

(i)    61 Respondents (57.0%) experienced difficulties in accessing the
       relevant medical practitioners.       32 Respondents (29.9%) either
       disagreed or disagreed totally with this situation.

(ii)   An increase in their levels of frustration due to the inaccessibility to
       medical practitioners, were reported by 59 respondents (55.2%).
       The same number of respondents who did not have difficulty in
       accessing the medical practitioner (32 being 29.7%), also reported
       a lack of frustration due to inaccessibility.

         (iii)    43 Respondents (40.2%) agreed that medical information was
                  disclosed to them in an insensitive manner. Insensitive disclosure
                  was not experienced by 49 respondents (45.7%).

         (iv)     The following table indicates the identity of the person who first
                  informed the respondents about the patient’s terminal diagnosis:

             N = 107                                      Count                %
             Family Doctor                                   28               26.2
             Oncology Specialist                             21               19.6
             Other medical specialist                        18               16.8
             Nurse                                            8               7.5
             Receptionist                                     2               1.9
             Counselor                                        2               1.9
             Family member or friend                          4               3.7
             The patient him/herself                         21               19.6
             Laboratory staff                                 2               1.9
             Other                                            1               0.9

Table 7. Identity of the person who first disclosed the terminal diagnosis.

         While the medical practitioner and the patients themselves remain the
         main source of diagnosis disclosure, both the incidence of untrained role-
         players who disclose such sensitive information (receptionist, laboratory
         staff), as well as the low level of involvement of trained counselors,
         constitute a matter of grave professional concern.

        (v)      The manner in which the diagnosis was disclosed, is reflected in
                 the following illustration:

          N = 107                                                       Count     %
         Telephonically                                                 15        14.0
         Letter or fax                                                  3         2.8
         One-to-one personal contact                                    60        56.1
         Family conference where the patient was present                19        17.8
         Family conference where the patient was not present            9         8.4
         Other                                                         1          0.9

Table 8. Method of disclosure of diagnosis.

        While it is encouraging to see that the method most often used in terms of
        disclosure pertains to one-to one personal contact, the significantly high
        incidence of telephone disclosure necessitates professional concern.
        Family     conferencing      in   the   presence   of   the   patient   was     also
        disappointingly low, again emphasizing the general exclusion of the entire
        family system as primary source of support.

        Theme 6

        The extent to which complementary therapies have been utilized by the
        respondents, is reflected in the following illustration:

           N = 107
                                                    Count              %
          Homeopathy                                  16              15.0
          Reflexology                                  3              2.8
          Massage Therapy                             15              14.0
          Herbalism                                   13              12.1
          Yoga                                         4              3.7
          Guided Imagery                               2              1.9
          Reiki                                        1              0.9
          Aromatherapy                                11              10.3
          Naturopathy                                  5              4.7
          Nutritional Therapy                         71              66.4
          Stress Therapy                              12              11.2
          Psychotherapy                               13              12.1
          Spiritual Counseling                        26              24.3
          Acupuncture                                  1              0.9
          Meditation                                  10              9.3
          Other                                        1              0.9

Table 9. Extent to which caregivers access complementary therapies.

       The above table clearly indicates that a large onus is placed on nutritional
       therapy. This does not emerge as an unexpected finding, due to the fact
       that special diet formulation often forms part of the core treatment in
       terminal care. However, the extent to which complementary therapies are
       accessed in general, provides a clear indication of this need experienced
       by the respondents in order to enhance the provision of care.

Spiritual   counseling,   as   the   second   highest    reported      accessed
complimentary therapy, further serves to indicate the pertinent need for
professional intervention and support.

Theme 7

With reference to the tendency of clinical practitioners to offer a life
expectancy limit to families, 41 respondents (38.7%) reported that such
information was presented to them. While a larger number of respondents
(55, representing 51,9%) disagreed with being offered such information,
the data clearly suggests the existence of this phenomenon in practice.

Theme 8

When considering the increased sense of responsibility that the provision
of care naturally stimulates, the following findings emerged from the data:

(i)     73 Respondents (68.2%) reported feeling guilty for not providing as
        much care as they would have preferred. 19.7% of the respondents
        did not experience any guilt regarding their care provision.

(ii)    Guilt based upon their occasional negative feelings towards the
        patient, was reported by 69 respondents (64.5%). An absence of
        this level of guilt was found in 27 respondents (25.2%).

(iii)   Being perceived as uncaring, was a concern for 49 respondents

(iv)    Regarding the expectations of others, 60 respondents (56.6%)
        indicated that other people expected too much from them, while 56

       respondents (52.3%) felt that the patients themselves, were too
       demanding in their expectations from the care providers.

Theme 9

A comparison with the quality of care that is rendered by other caregivers,
with a subsequent need for re-assurance in terms of their personal care
provision, was reported upon as follows:

(i)    38 Respondents (35.8%) were found to be comparing the quality of
       their care with that of other caregivers, while 39 respondents
       (36.8%) did not make use of any comparisons.

(ii)   In accordance with the above, 53 respondents (49.5%) needed
       constant re-assurance in terms of the quality of care that they
       provided, while 54 respondents (50.5%) felt comfortable with the
       quality of care that they administered.

Theme 10

By implication of the care-giving function, new roles emerge for the person
who assumes this responsibility.     Accordingly, 84 respondents (75.5%)
reported that they were forced to accept new responsibilities due to the
illness of the patient.

In terms of the physical support of the patient, 85 respondents (80.2%)
agreed that they feel total responsibility in this regard, while a
corresponding 91 respondents (85.9%) were found to accept responsibility
for the emotional support of the patient.

Theme 11

The physical effect of assuming new roles in the terminal situation was
found to have significantly impacted on 66 respondents (62.3%) who
reported increased levels of fatigue due to additional responsibilities. Only
20 respondents (18.8%) reported an absence of physical exhaustion.

Theme 12

Assumption of new roles, combined with the demands of active care
provision, was found to have a direct correlation to increased stress levels.
To this effect, 74 respondents (69.1%) reported a significant increase in
their stress levels due to their care responsibilities.

Theme 13

47 Respondents (44.3%) experienced outbursts of anger from the patient,
which was directed to them personally.             The remaining 55.7% of
respondents reported an absence of anger at the stage of completing the

Theme 14

Support from others in dealing with the demands of the terminal situation
was found to be a primary need for care providers. To this extent, 86
respondents (80.4%) reported a distinct need of support from others, while
only 7 respondents (6.6%) were comfortable in dealing with the terminal
situation without external support.

A significantly high percentage of respondents (87.7%) expressed a need
to engage other people in understanding their emotions, while a total of 49

respondents (47.6%) felt that they had sufficient support from others. A
total of 54 respondents (52.4%) expressed an absence of sufficient
support from others.

Theme 15

The evidence of a need for professional support in the terminal situation,
was further emphasized by the following findings:

(i)     58 Respondents (54.2%) indicated a need for professional
        intervention in terms of their coping with the terminal situation. 25
        Respondents (23.4%) felt that they were not in need of professional
        assistance, while 24 respondents (22.4%) indicated a neutral

(II)    In terms of the need for professional support for the patient, 71
        respondents (66.4%) felt that this measure was indicated, 17
        respondents (15.7%) were neutral, and 19 respondents (17.7%)
        indicated that the patient functioned well without professional

(iii)   Notwithstanding the above, 74 respondents (69.8%) were found to
        have difficulty in dealing with their emotions surrounding the illness,
        while 64 respondents (59.8%) reported being fearful of dealing with
        the illness.

(iv)    50 Respondents (46.8%) were found to have been informed about
        relevant resources in the community while, 44 respondents (41.7%)
        disagreed with having been provided with relevant information.

(v)     More specifically, 80 respondents (75.5%) were aware of the
        support services offered by The Hospice Association of Southern
        Africa, while the remaining 24.5% of respondents were not aware of
        this resource.

(vi)    Of particular significance in terms of professional support, was the
        indication by 47 respondents (44.8%) who reported an unspoken
        wish that the patient should die.     The many emotional issues
        surrounding this particular notion, certainly warrants professional

Theme 16

A lack of self-care for the caregiver will contribute to diminished energy in
terms of fulfilling expectations surrounding the terminal situation.    The
subsequent impact on quality of care will unnecessarily compound
feelings of guilt and fear within the care provider. The urgent need for
self-care, as found in the data, can be reported as follows:

(i)     44 Respondents (41.1%) reported sufficient time to attend to their
        personal needs. 45 Respondents (42.%) reported the opposite.

(ii)    Conversely, only 3 respondents (2.8%) reported that their own
        needs were more important to them than the needs of the patient.
        A highly significant 92 respondents (86.0%) were found to perceive
        their personal needs as secondary to the immediate needs of the

(iii)   In addition, 64 respondents (61.0%) were found to hide their
        personal needs and feelings from the patient.

         (iv)     In terms of the utilization of external resources that are utilized by
                  caregivers for information and assistance regarding the illness of
                  the patient, the following table provides a summary of the extent
                  that these are accessed:

                     N = 107
                                                       Utilized to a large        Utilized to a very
                                                                 extent             large extent
                                                        Count             %       Count        %
                      Medical Practitioner                 38         35.5          27        25.2
                      Nurse                                29         27.1          18        16.8
                      Volunteers                           5              4.7        4         3.7
                      Spiritual Counselor                  19         17.8           6         5.6
                      Psychotherapist                      6              5.6        4         3.7
                      Social Worker                        13         12.3           7         6.6
                      Medical Books                        18         17.0          10         9.4
                      Internet                             13         12.4           9         8.6
                      Magazines                            18         16.8           5         4.7
                      Friends and Family                   40         37.4          16        15.0
                      Sangoma                              2              1.9        1         1.0

Table 10. Utilization of external resources by care providers.

         From the above table it is clear that the medical practitioner, the
         professional nurse and friends and family constitute the largest
         percentage of external resources utilized by the caregiver. It remains of
         professional        concern       that     knowledgeable           and   suitably   equipped
         professional resources are clearly under-utilized.

     Theme 17

     The inclusion of practical issues in the rendering of support for the
     caregiver, has emanated clearly from the data. A total of 63 respondents
     (58.9%) were found to be in need of practical support in order to sustain
     the level of their care provision.

     Theme 18

     The financial impact of the terminal situation on the circumstances of the
     caregiver, was found to have had a negative impact in 58 of the
     respondents (69.8%). Only 30.2% of the respondents (32) were found to
     have been financially unaffected by a terminal diagnosis.

4.3.4 Open-ended Analysis

     The final, open-ended question in the questionnaire provided the
     respondents with an opportunity to add any further experienced
     psychosocial needs that were not included in the questionnaire. A total of
     17 respondents contributed the following information, which was analyzed
     manually by means of a coding process, and which can be summarized as

     •   Disease and subsequent death should not be regarded as a threat per
         se.    Instead, the terminal situation should be regarded as an
         opportunity to find peace and to contemplate a life well lived. As such,
         death should be discussed openly.

     •   Not being able to alleviate the side effects of treatment, increases the
         helplessness experienced by care-givers.      Witnessing the physical
         deterioration, pain and discomfort of a loved one remains very difficult

    for caregivers. In this regard, an unspoken wish by caregivers that
    death becomes a viable option is thus based on a need to ameliorate
    the suffering of the terminal patient.

•   Upon diagnosis, and in the period directly following this event, support
    from others are extended on a broad base.             However, as time
    progresses, and especially in circumstances where the illness is
    prolonged over a long time, the initial support diminishes, and the
    primary caregivers experience an increased demand on their time and

•   There is a general lack of support structures in the community.
    Respite care structures are difficult to find, and often unaffordable for
    the family. The policy of The Hospice Association of Southern Africa to
    admit only cancer and HIV/AIDS patients, exclude patients whose
    terminal illness falls outside of these parameters.

•   The special diet that is required by some terminally ill patients, is not
    always affordable for all families. Again, resources that can address
    this issue, are extremely limited.

•   For the caregiver who is gainfully employed on a full-time basis, the
    balance between working, and the provision of quality care becomes a
    problematic issue. This is compounded by the fact that, even in the
    event of support and understanding from colleagues and management,
    the expectations regarding the employment situation do not diminish.

•   Social isolation of the patient is often induced by the patients
    themselves, who do not wish to leave the care environment in favour of
    broader socialization contexts.

      •   Differing messages in terms of life-expectancy that are offered by
          different medical professionals, contribute to confusion and increased
          levels of frustration and stress, both within the patient as a well as the

      •   Care-giving can be a positive life experience.          One respondent
          indicated such a degree of stimulation through this activity, that, upon
          the death of the ill family member, the respondent became actively
          involved in the rendering of volunteer care on a permanent basis.

4.4   Conclusion

      The above concludes the analysis of both the qualitative as well as the
      quantitative data. Through the process of analysis the extensive amount
      of data that was obtained through implementation of both data-gathering
      instruments (in-depth interviews and questionnaire), has been ordered
      and summarized in an attempt at providing relevant answers to the
      research question. For De Vos et al. (2002, 223), the purpose of this
      process is “to reduce data to an intelligible and interpretable form so that
      the relations of research problems can be studied, tested and conclusions

      The result of the analysis process will subsequently be transformed into
      appropriate guidelines, conclusions and recommendations and will
      represent an all-encompassing result of the study in its totality. These will
      be presented in the final chapter of this study.