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Patient and Carer Experiences Palliative Care Services National

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					Patient and Carer Experiences

   Palliative Care Services
   National Survey Report


                                                                                                                  August 2009


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                                                                                                                         Funded by the Australian Government
Table of Contents
Introduction................................................................................................................................................................................................................. 1
Patient experiences - survey results ........................................................................................................................................................................ 2
Age and Gender ........................................................................................................................................................................................................... 2
Cultural Background ..................................................................................................................................................................................................... 3
Question 1 - Over the past 3 days, have you been affected by pain? .......................................................................................................................... 3
Question 2 - Over the past 3 days, have other symptoms (eg, feeling sick, having a cough or constipation) been affecting how you feel? ............... 4
Question 3. Over the past 3 days, have you been feeling anxious or worried about your illness or treatment? .......................................................... 4
Question 4. Over the past 3 days, have any of your family or friends been anxious or worried about you? ................................................................ 5
Question 5 - Over the past 3 days, how much information have you and your family or friends been given? ............................................................. 5
Question 6 - Over the past 3 days, have you been able to share how you are feeling with your family or friends?..................................................... 6
Question 7. - Over the past 3 days, have you been feeling depressed? ...................................................................................................................... 6
Question 8. – Over the past 3 days, have you felt good about yourself as a person ................................................................................................... 7
Question 9. - Over the past 3 days, how much time do you feel has been wasted on appointments relating to your health care (e.g. waiting around
for transport or repeating tests)? .................................................................................................................................................................................. 7
Question 10. - Over the past 3 days, have any practical matters resulting from your illness, either financial or personal, been addressed? ............. 8
Question 11. – If any, what have been your main problems in the last three days? .................................................................................................... 8
Question 12. – How did you complete these questions?.............................................................................................................................................. 9
Carer experiences - survey results ......................................................................................................................................................................... 10
Age and Gender ......................................................................................................................................................................................................... 10
Cultural Background ................................................................................................................................................................................................... 11
Question1. – The patients comfort.............................................................................................................................................................................. 12
Question 2. - The way in which the patient’s condition and likely progress have been explained by the palliative care team ................................... 12
Question 3. - Information given about side effects of treatment ................................................................................................................................. 12
Question 4. - The way in which the palliative care team respects the patient’s dignity .............................................................................................. 12
Question 5. - Meetings with the palliative care team to discuss the patient’s condition and plan of care................................................................... 13
Question 6. - Speed with which symptoms are treated .............................................................................................................................................. 13
Question 7. - Palliative care team’s attention to the patient’s description of symptoms ............................................................................................. 13
Question 8. - The way in which the patient’s physical needs for comfort are met ...................................................................................................... 13
Question 9. - Availability of the palliative care team to the family............................................................................................................................... 14
Question 10. - Emotional support provided to family members by the palliative care team ....................................................................................... 14
Question 11. - The practical assistance provided by the palliative care team (e.g, bathing, home care, respite) ...................................................... 14
Question 12. - The doctor’s attention to the patient’s symptoms................................................................................................................................ 14
Question 13. - The way the family is included in treatment and care decisions ......................................................................................................... 15
Question 14. - Information given about how to manage the patient’s symptoms (eg., pain, constipation)................................................................. 15
Question 15. - How effectively the palliative care team manages the patient’s symptoms ........................................................................................ 15
Question 16. - The palliative care team’s response to changes in the patient’s care needs ...................................................................................... 15
Question 17. - Emotional support provided to the patient by the palliative care team................................................................................................ 16
Have you had someone to help you with practical tasks? .......................................................................................................................................... 17
Did anyone give you information on whether you would qualify for a Carer Payment or Allowance? ........................................................................ 17
Did someone give you information about available support services? ....................................................................................................................... 18
Did someone give you practical training in lifting, managing medicine or other tasks?.............................................................................................. 18
Comments about carer experiences........................................................................................................................................................................... 19



List of Tables
Table 1 Gender by age group....................................................................................................................................................................................... 2
Table 2 Pain.................................................................................................................................................................................................................. 3
Table 3 Other symptoms .............................................................................................................................................................................................. 4
Table 4 Anxiety or worry ............................................................................................................................................................................................... 4
Table 5 Family/friends anxiety or worry ........................................................................................................................................................................ 5
Table 6 Information received ........................................................................................................................................................................................ 5
Table 7 Sharing feelings with family or friends ............................................................................................................................................................. 6
Table 8 Feeling depressed ........................................................................................................................................................................................... 6
Table 9 Felt good about yourself as a person? ............................................................................................................................................................ 7
Table 10 Time wasted .................................................................................................................................................................................................. 7
Table 11 Addressing of practical matters ..................................................................................................................................................................... 8
Table 12 Main problems ............................................................................................................................................................................................... 8
Table 13 How did you complete these questions? ....................................................................................................................................................... 9
Table 14 Gender by age group................................................................................................................................................................................... 10
Table 15 Practical tasks?............................................................................................................................................................................................ 17
Table 16 Carer Payment or Allowance? ..................................................................................................................................................................... 17
Table 17 Support services? ........................................................................................................................................................................................ 18
Table 18 Did someone give you practical training in lifting, managing medicine or other tasks?............................................................................... 18
       Introduction
       In 2009 the patient and carer experience surveys were conducted using the same methodology as 2008. The 2009 surveys were initially intended
       for those services that missed out on the first round of surveys in 2008. PCOC now plans to administer the surveys on an annual basis. Once
       services are participating regularly the reports may possibly be able to demonstrate any changes and/or improvements (such as symptom control)
       identified in the surveys both at a national level and at the individual service level.

       Two surveys were made available to palliative care services to administer as a quality assessment process aimed at improving patient/carer
       outcomes. The questionnaire designed for patient experience aims to provide a reflection of response to need and patient experiences. The
       questionnaire for carers is designed to capture a profile of the carer and important elements of their experiences.

       The tools used were the Patient Outcome Scale (POS) 2 and FAMCARE 2.

       The patient measure is the POS 2 developed by Higginson and colleagues1. There are two versions of the survey instrument. One is for completion
       by those patients able to participate. The other is a staff-rated version for those patients who are not well enough to complete their own survey.

       FAMCARE 2 has 17 items and is a modified version of the original FAMCARE which has 20 items. FAMCARE 2 measures carer satisfaction with
       palliative care services and the 17 items relate to control of physical symptoms and comfort, provision of information, family support and practical
       assistance and psychological care. The instrument was revised to reflect changes in palliative care practice such as care delivered by palliative care
       teams rather than a doctor or a nurse and that more patients receiving non-hospital care rather than hospital care. FAMCARE 2 is administered as
       part of the Carer Experiences Survey and is followed by four questions that measure more practical issues.

       Services were asked to provide PCOC with a minimum of 20 survey forms (and a maximum of 50) for the Patient Experience Survey and the Carer
       Experiences Survey for analysis.

       Twenty two services nationally participated in the PCOC Patient and Carers Experiences surveys between November 2008 and April 2009.

       Ethics approval was received from the University of Wollongong Human Research Ethics Committee, proposal number HE06/045. Ethics approval
       was received from the University of Wollongong Human Research Ethics Committee (HREC), proposal number HE06/045. Some services also
       approached their local HREC’s for approval.




1
 Hearn J and Higginson IJ (1999) Development and validation of a core outcome measure for palliative care: the palliative care outcome scale. Palliative Care Core Audit Project Advisory
Group. Qual Health Care. Vol 8, No 4, 219-27, http://www.kcl.ac.uk/schools/medicine/depts/palliative/qat/posv2.html
PCOC Patient and Carer National Survey 2009                                                                                                                               Page 1 of 19
      Patient experiences - survey results
       Twenty two services nationally participated in the PCOC Patient Experiences survey between November 2008 and April 2008. In total, 477
       patients participated in the 2009 survey compared to 570 in 2008. The following Tables/Figures compare the aggregated national results from the
       2008 and 2009 surveys.

       Age and Gender

       The 2009 results show that in total, 51% of respondents were male compared to 55% in 2008. For both surveys the average age for males was 70
       yrs whilst the average age for females was 68.

       Table 1 shows the age and the gender of all respondents.

        Table 1       Gender by age group
                                                                                  2008                                                    2009
        Age group
                                                        Male               %             Female               %            Male     %            Female         %
       < 15                                               0                0.0             0                  0.0            0       0              0            0
       15-24                                              0                0.0             0                  0.0            0       0              0            0
       25-34                                              2                0.8             4                  1.8            3      1.6             2           0.9
       35-44                                              8                3.0             13                 6.0            6      3.2             7           3.3
       45-54                                             13                4.9             21                 9.7           10     5.3             23          10.8
       55-64                                             58               21.8             37                17.1           39     20.6            50          23.6
       65-74                                             87               32.7             56                25.8           61     32.3            63          29.7
       75-84                                             70               26.3             65                30.0           53     28.0            47          22.2
       85+                                               28               10.5             21                 9.7           17      9.0            20           9.4
       Total                                            266              100.0            217               100.0          189    100.0           212         100.0
       Note: records where either age or gender were not recorded or inadequately described are excluded from the table.




PCOC Patient and Carer National Survey 2009                                                                                                               Page 2 of 19
       Cultural Background
       All respondents from both the 2008 and 2009 surveys addressed the question relating to ethnicity. Eighteen percent of the respondents from 2008
       identified themselves as being from a particular ethnic origin or cultural background compared to 13% in 2009.


       Question 1 - Over the past 3 days, have you been affected by pain?
       Just over two fifths of all patients (42%) had moderate pain that limited some activity. Almost one quarter (23%) had severe or overwhelming pain
       that markedly affected their activities or concentration or they were unable to think of anything else. Only 15% reported no pain. These results
       show a 5% decrease in the number of patients reporting severe or overwhelming pain from 2008 (28%), suggesting that the services that
       participated in 2009 may be better at pain management.

        Table 2      Pain
                                                                                          2008                             2009
        Response
                                                                                Number              %            Number              %
       Not at all, no effect                                                       87             15.7              69             14.7
       Slightly – but not bothered to be rid of it                                103              18.6             94              20.0
       Moderately – pain limits some activity                                     207             37.4             198             42.0
       Severely – activities or concentration markedly affected                   134             24.2              95             20.2
       Overwhelmingly – unable to think of anything else                           22               4.0             15               3.2
       Total                                                                      553             100.0            471             100.0
       Not stated/inadequately described                                           17                                6




PCOC Patient and Carer National Survey 2009                                                                                                 Page 3 of 19
        Question 2 - Over the past 3 days, have other symptoms (eg, feeling sick, having a cough or constipation) been affecting
        how you feel?
        Two thirds of all patients (66%) had other symptoms had affected the way they feel either slightly or moderately. Approximately 15% of all patients
        had severe or overwhelming symptoms that affected the way that they felt. Almost one fifth of all patients (19%) had no other symptoms that
        affected how they felt. In 2008 the results were similar but a higher proportion reported severe or overwhelming symptoms (19%). This
        represents an improvement of around 4% in the management of other symptoms.

        Table 3     Other symptoms
                                                                                             2008                              2009
        Response
                                                                                    Number             %             Number              %
       Not at all                                                                      92             16.7              90              19.1
       Slightly                                                                       151             27.5             144             30.5
       Moderately                                                                     200             36.4             165             35.0
       Severely                                                                        90             16.4              58              12.3
       Overwhelmingly                                                                  17              3.1              15               3.2
       Total                                                                          550            100.0             472             100.0
       Not stated/inadequately described                                               20                               5

       Question 3. Over the past 3 days, have you been feeling anxious or worried about your illness or treatment?
        Approximately 18% of patients were so worried or anxious about their illness or treatment that it affected their concentration most of the time while
        a further 4% were so preoccupied with worry and anxiety that they could not think of anything else. Eighteen percent did not report any issues
        relating to worry and anxiety. The results were similar in 2008 but there has been a 3% improvement in the number of patients feeling anxious or
        worried most or all of the time.

        Table 4     Anxiety or worry
                                                                                             2008                              2009
        Response
                                                                                    Number             %             Number              %
       Not at all                                                                     126             22.8              83              17.6
       Occasionally                                                                   145             26.3             150             31.8
       Sometimes – affects my concentration now and then                              143            25.9              134             28.4
       Most of the time – often affects my concentration                              110            19.9              86              18.2
       Can’t think of anything else – completely preoccupied by worry and anxiety      28              5.1              19               4.0
       Total                                                                          552            100.0             472             100.0
       Not stated/inadequately described                                               18                               5

PCOC Patient and Carer National Survey 2009                                                                                                     Page 4 of 19
       Question 4. Over the past 3 days, have any of your family or friends been anxious or worried about you?
        Approximately one third of all patients (32%) reported that their family and friends were anxious or worried about them most of the time whilst 12%
        reported their family or friends were always preoccupied with worry about them. This is a decrease of around 8% from the 2008 results where
        this percentage was 20. Just over one third in both surveys reported that their family or friends were occasionally anxious or worried about them
        or was not an issue.

        Table 5     Family/friends anxiety or worry
                                                                                              2008                               2009
        Response
                                                                                    Number              %             Number               %
       Not at all                                                                      59              10.8              49               10.5
       Occasionally                                                                   145              26.6             131              28.1
       Sometimes – it seems to affect their concentration                              69              12.7              79               17.0
       Most of the time                                                               159              29.1             151               32.4
       Yes, always preoccupied with worry about me                                    114              20.9              56               12.0
       Total                                                                          546             100.0             466              100.0
       Not stated/inadequately described                                               24                                11

       Question 5 - Over the past 3 days, how much information have you and your family or friends been given?
        Just over 70% of all respondents felt that they or their family or friends received full information and were always free to ask further questions while
        30% did not. In total, 7% found the information they were given hard to understand, 9% wanted more information and 10% reported receiving no
        information at all. The results for 2008 were similar but slightly more patients (11%) were given no information at all.

        Table 6     Information received
                                                                                              2008                               2009
        Response
                                                                                    Number              %             Number              %
       Full information – always feel free to ask what I want                         389              71.5             324              70.7
       Information given but hard to understand                                        40               7.4              34               7.4
       Information given on request but would have liked more                          44               8.1              43               9.4
       Very little given and some questions were avoided                               11               2.0              12               2.6
       None at all                                                                     60              11.0              45               9.8
       Total                                                                          544             100.0             458              100.0
       Not stated/inadequately described                                               26                                19



PCOC Patient and Carer National Survey 2009                                                                                                       Page 5 of 19
       Question 6 - Over the past 3 days, have you been able to share how you are feeling with your family or friends?
        Over half of all patients (57%) had been able to share how they were feeling with family/friends as much as they wanted with another 25% being
        able to share their feelings most of the time. A further 10% of patients felt that they could share their feelings sometimes and 6% occasionally.
        However 3% of patients felt that they were not able to share their feelings at all. The results for 2008 were similar.

        Table 7     Sharing feelings with family or friends
                                                                                           2008                              2009
        Response
                                                                                 Number              %             Number              %
       Yes, as much as I wanted                                                    299              54.3             265              56.5
       Most of the time                                                            125              22.7             115             24.5
       Sometimes                                                                    65              11.8              47              10.0
       Occasionally                                                                 40               7.3              26               5.5
       Not at all with anyone                                                       22               4.0              16               3.4
       Total                                                                       551             100.0             469             100.0
       Not stated/inadequately described                                            19                                8

       Question 7. - Over the past 3 days, have you been feeling depressed?
        Over half of all patients (59%) felt depressed occasionally or sometimes with another 27% not feeling depressed at all. However, 7% had been
        feeling depressed most of the time. The results for 2008 are similar.

        Table 8     Feeling depressed
                                                                                           2008                              2009
        Response
                                                                                 Number              %             Number              %
       No, not at all                                                              169              31.3             125              26.8
       Occasionally                                                                169              31.3             171             36.7
       Sometimes                                                                   123              22.8             103              22.1
       Most of the time                                                             42               7.8              32               6.9
       Yes, definitely                                                              37               6.9              35               7.5
       Total                                                                       540             100.0             466             100.0
       Not stated/inadequately described                                            30                                11




PCOC Patient and Carer National Survey 2009                                                                                                   Page 6 of 19
       Question 8. – Over the past 3 days, have you felt good about yourself as a person
        Just over two thirds (67%) of all patients felt good about themselves most of the time or all the time. Just under one in ten (9%) felt good about
        themselves occasionally with a further 9% not feeling good about themselves at all. This is an improvement from the 2008 results where 59% felt
        good about themselves most of the time or all of the time and 11% did not feel good about themselves at all.

        Table 9     Felt good about yourself as a person?
                                                                                           2008                              2009
        Response
                                                                                 Number              %             Number              %
       Yes, all of the time                                                        100              18.7             111              24.2
       Most of the time                                                            214             40.0              198             43.1
       Sometimes                                                                    99              18.5              70              15.3
       Occasionally                                                                 65              12.2              40               8.7
       No, not at all                                                               57              10.7              40               8.7
       Total                                                                       535             100.0             459             100.0
       Not stated/inadequately described                                            35                                18

       Question 9. - Over the past 3 days, how much time do you feel has been wasted on appointments relating to your health care
       (e.g. waiting around for transport or repeating tests)?
        Overwhelmingly, most patients (85%) had no time wasted on healthcare appointments in the previous three days. However, 15% felt that they
        had wasted up to half a day or more on healthcare appointments. The results for 2008 are similar.

        Table 10 Time wasted
                                                                                           2008                              2009
        Response
                                                                                 Number              %             Number              %
       None at all                                                                 474              89.3             383              84.7
       Up to half a day wasted                                                      40               7.5              49              10.8
       More than half a day wasted                                                  17               3.2              20               4.4
       Total                                                                       531             100.0             452             100.0
       Not stated/inadequately described                                            39                                25




PCOC Patient and Carer National Survey 2009                                                                                                  Page 7 of 19
       Question 10. - Over the past 3 days, have any practical matters resulting from your illness, either financial or personal, been
       addressed?
        Overall, there was little evidence of patients having problems in relation to their financial and personal affairs, with only 4% reporting that these
        matters were not being addressed. Over three quarters (77%) had their practical matters either up to date or in the process of being addressed
        and almost one fifth (19%) had no practical problems. The results for 2008 are similar.

        Table 11 Addressing of practical matters
                                                                                                          2008                       2009
        Response
                                                                                                 Number              %      Number           %
       Practical problems have been addressed and my affairs are as up to date as I would wish     262              49.7      214           47.0
       Practical problems are in the process of being addressed                                    136              25.8      137           30.1
       Practical problems exist which were not addressed                                            20               3.8       16            3.5
       I have had no practical problems                                                            109              20.7       88           19.3
       Total                                                                                       527              100.0     455           100.0
       Not stated/inadequately described                                                            43                         22

       Question 11. – If any, what have been your main problems in the last three days?
        Out of the 570 patients that participated in the 2008 survey 311 (55%) addressed this question relating to main problems over the last 3 days.
        These problems were categorised into 15 themes. These themes together with the number of times that they were identified in the responses are
        highlighted below.

        Out of the 477 patients that participated in the 2009 survey 273 (57%) addressed this question relating to main problems over the last 3 days.
        These problems were categorised into 19 themes. These themes together with the number of times that they were identified in the responses are
        also highlighted below.

        Table 12 Main problems
                                                2008                                                  2009
          Problem                         N               %         Problem                      N                %
          Pain                            68             19.6       Pain                         74              18.6
          Fatigue                         48             13.8       Practical matters            53              13.3
          Practical matters               43             12.4       Fatigue                      40              10.1
          Anxiety                         42             12.1       Anxiety/worry                36               9.0
          Bowels                          31              8.9       Psychological                36               9.0
          Mobility                        23              6.6       Mobility/falls               23               5.8
                                                                                                           Continued….



PCOC Patient and Carer National Survey 2009                                                                                                         Page 8 of 19
                                                      2008                                                  2009
          Problem                               N              %    Problem                         N               %
          Nausea                                20            5.8   Bowels                          17              4.3
          Appetite                              20            5.8   Nausea/vomiting                 17              4.3
          Breathing                             17            4.9   Breathing                       14              3.5
          Confusion                             11            3.2   Appetite/eating problems        13              3.3
          Boredom                                8            2.3   Depression                      13              3.3
          Depression                             5            1.4   Communication                    6              1.5
          Falls                                  5            1.4   Oedema                           6              1.5
          Dysphasia                              3            0.9   Cough                            6              1.5
          Psychological                         3             0.9   Confusion                        5              1.3
          Total                                347*          100%   End of life                      5              1.3
                                                                    Dizziness                        5              1.3
                                                                    Boredom                          2              0.5
                                                                    Other                           27              6.8
                                                                    Total                          398*            100%
         * Some responses contained more than one theme

        The most common three problems in both the 2008 and 2009 surveys related to pain, fatigue and practical matters. Pain was highlighted as the
        most common problem. Twenty two respondents from the 2009 survey reported positive comments for this question rather than identifying any
        problems.

       Question 12. – How did you complete these questions?
        Patients could elect to complete the survey on their own or with the help of someone else. In both the 2008 and 2009 surveys approximately 10%
        were completed with the help of a member of the palliative care team while the remaining patients completed the survey on their own or with help
        of a friend or family member.

        Table 13 How did you complete these questions?
                                                                                                          2008                      2009
        Response
                                                                                               Number                %     Number            %
       On my own                                                                                 231                44.0     246            53.6
       With the help of a friend or relative                                                     238                45.3     161            35.1
       With help from a member of staff                                                           56                10.7      52            11.3
       Total                                                                                     525               100.0     459           100.0
       Not stated/inadequately described                                                          45                          18



PCOC Patient and Carer National Survey 2009                                                                                                        Page 9 of 19
       Carer experiences - survey results
       Twenty two services nationally participated in the PCOC Carer Experiences survey between November 2008 and April 2008. In total, 435 carers
       participated in the 2009 survey compared to 486 in 2008. The following Tables/Figures presented compare the aggregated national results from
       the 2008 and 2009 surveys.

       Age and Gender
       The 2009 results show that in total, 30% of respondents were male compared to 34% in 2008. For the 2009 survey the average age for males was
       65 yrs whilst the average age for females was 59. The average age for both female and male carers was 61years for the 2008 survey.

       Table 1 shows the age and the gender of all respondents.

        Table 14 Gender by age group
                                                                                2008                                                      2009
        Age group
                                                     Male                 %              Female               %            Male     %            Female         %
       < 15                                            0                  0.0              0                  0.0            1      0.9             1           0.4
       15-24                                           0                  0.0              3                  1.0            0      0.0             4          1.4
       25-34                                           9                  6.2              8                  2.8            0      0.0            14           5.1
       35-44                                          15                 10.3              19                 6.6            7      6.1            22           7.9
       45-54                                          24                 16.4              56                19.4           18     15.7            45          16.2
       55-64                                          32                 21.9              76                26.3           25     21.7            75          27.1
       65-74                                          42                 28.8              87                30.1           36     31.3            89          32.1
       75-84                                          19                 13.0              35                12.1           25     21.7            24           8.7
       85+                                             5                  3.4              5                  1.7            3      2.6             3          1.1
       Total                                         146                100.0             289               100.0          115    100.0           277         100.0
       Note: records where either age or gender were not recorded or inadequately described are excluded from the table.




PCOC Patient and Carer National Survey 2009                                                                                                               Page 10 of 19
       Cultural Background

       All respondents from both the 2008 and 2009 surveys addressed the question relating to ethnicity. Thirteen percent of the respondents from 2008
       identified themselves as being from a particular ethnic origin or cultural background compared to 12% in 2009.

        Responses to Questions

        For questions 1 through 17, carers were asked to tick one of five options on a Likert-type scale as a measure of their satisfaction with the palliative
        care services received by the patient. The options were ‘Very satisfied’, ‘Satisfied’, ‘Neither satisfied or dissatisfied’, ‘Dissatisfied’, and ‘Very
        dissatisfied’. Carers could also tick a box if the question was ‘Not relevant to my situation’.

        The feedback from all services for these 17 questions was overwhelmingly positive in both 2008 and 2009. The way in which palliative care teams
        respected patients’ dignity accrued the most positive response (Question 4) with 77% of all carers being Very Satisfied in 2009. These results
        were similar in 2008.

        For both 2008 and 2009, a small numbers of respondents (3%) expressed dissatisfaction related to information given about side effects of
        treatment (Question 3).




PCOC Patient and Carer National Survey 2009                                                                                                      Page 11 of 19
Question1. – The patients comfort                                                                     Question 2. - The way in which the patient’s condition and likely
                                                                                                      progress have been explained by the palliative care team


                                      2008                               2009                                                              2008                                 2009
               100                                                                                                  100

               80                                                                                                   80
                     258
  Percentage




                                                                                                       Percentage
                       223
               60                                                                                                   60    241233
                                    168
                                 184                                                                                                  187
               40                                                                                                                       142
                                                                                                                    40
               20
                                                14 17        5 6            0   6         4 6                       20
                                                                                                                                                     25 30        7 12                         7 10
                0                                                                                                                                                                2 1
                       Very      Satisfied      Neither   Dissatisfied       Very     No t relevant                  0
                     satisfied                                           dissatisfied                                       Very      Satisfied      Neither   Dissatisfied       Very     Not relevant
                                                                                                                          satisfied                                           dissatisfied
                                               Satisfaction rating
                                                                                                                                                    Satisfaction rating


Question 3. - Information given about side effects of treatment                                       Question 4. - The way in which the palliative care team respects the
                                                                                                      patient’s dignity


                                             2008                           2009                                                                  2008                           2009
               100                                                                                                  100

                                                                                                                          357331
                80                                                                                                   80



                                                                                                       Percentage
  Percentage




                60                                                                                                   60
                                 210
                        174        165
                     171
                40                                                                                                   40
                                                                                                                                       99 90
                20                              44 35                                                                20
                                                            11 12                       25 36
                                                                           4 0                                                                       3 8          2 1           1 0           8 1
                 0                                                                                                    0
                       Very      Satisfied      Neither   Dissatisfied       Very     Not relevant                          Very      Satisfied      Neither   Dissatisfied       Very     Not relevant
                     satisfied                                           dissatisfied                                     satisfied                                           dissatisfied
                                              Satisfaction rating                                                                                  Satisfaction rating



PCOC Patient and Carer National Survey 2009                                                                                                                                                         Page 12 of 19
Question 5. - Meetings with the palliative care team to discuss the                                  Question 6. - Speed with which symptoms are treated
patient’s condition and plan of care


                                             2008                           2009                                                                 2008                           2009
               100                                                                                                 100

               80                                                                                                  80




                                                                                                      Percentage
  Percentage




                        247
               60    227                                                                                           60    239211
                                                                                                                                     182160
               40                156                                                                               40
                                   125

               20                               40 26                                                              20
                                                                                        31 17                                                                                               21 25
                                                            10 8           1 1                                                                      17 19        9 7           2 0
                0                                                                                                   0
                       Very      Satisfied      Neither   Dissatisfied       Very     Not relevant                         Very      Satisfied      Neither   Dissatisfied       Very     Not relevant
                     satisfied                                           dissatisfied                                    satisfied                                           dissatisfied
                                              Satisfaction rating                                                                                 Satisfaction rating

Question 7. - Palliative care team’s attention to the patient’s                                      Question 8. - The way in which the patient’s physical needs for
description of symptoms                                                                              comfort are met


                                             2008                           2009                                                                 2008                            2009
               100                                                                                                 100

               80                                                                                                  80
                     274256                                                                                              283246
  Percentage




                                                                                                      Percentage
               60                                                                                                  60

               40                164                                                                                                    149
                                    132                                                                            40                145

               20                                                                                                  20
                                                14 15        2 2            1 0         13 20                                                       19 11        4 6            0 0         14 10
                0                                                                                                   0
                       Very      Satisfied      Neither   Dissatisfied       Very     Not relevant                         Very      Satisfied      Neither   Dissatisfied       Very     Not relevant
                     satisfied                                           dissatisfied                                    satisfied                                           dissatisfied
                                              Satisfaction rating                                                                                 Satisfaction rating


PCOC Patient and Carer National Survey 2009                                                                                                                                                      Page 13 of 19
Question 9. - Availability of the palliative care team to the family                                 Question 10. - Emotional support provided to family members by the
                                                                                                     palliative care team


                                             2008                           2009                                                                 2008                           2009
               100                                                                                                 100


               80                                                                                                  80




                                                                                                      Percentage
  Percentage




                     255247
               60                                                                                                  60
                                                                                                                         204194

               40                161                                                                               40                154129
                                    126

               20                                                                                                  20                               51 50                                   41 37
                                                28 30                                   16 13
                                                             4 9           0   0                                                                                 5 5           0   0
                0                                                                                                   0
                       Very      Satisfied     Neither    Dissatisfied       Very     Not relevant                         Very      Satisfied      Neither   Dissatisfied       Very     Not relevant
                     satisfied                                           dissatisfied                                    satisfied                                           dissatisfied
                                              Satisfaction rating                                                                                 Satisfaction rating

Question 11. - The practical assistance provided by the palliative care Question 12. - The doctor’s attention to the patient’s symptoms
team (e.g, bathing, home care, respite)


                                             2008                           2009                                                                 2008                           2009
               100                                                                                                 100

               80                                                                                                  80


                                                                                                      Percentage
  Percentage




                                                                                                                         277252
               60                                                                                                  60
                     181161
               40                134120                                                                            40                158
                                                                                                                                        125
                                                                                        98 97
               20                                    36                                                            20
                                                21
                                                             4 1           2 0                                                                      17 28        3 5            5 2         10 12
                0                                                                                                   0
                       Very      Satisfied     Neither    Dissatisfied       Very     Not relevant                         Very      Satisfied      Neither   Dissatisfied       Very     Not relevant
                     satisfied                                           dissatisfied                                    satisfied                                           dissatisfied
                                              Satisfaction rating                                                                                 Satisfaction rating


PCOC Patient and Carer National Survey 2009                                                                                                                                                    Page 14 of 19
Question 13. - The way the family is included in treatment and care                                  Question 14. - Information given about how to manage the patient’s
decisions                                                                                            symptoms (eg., pain, constipation)


                                             2008                           2009                                                                 2008                          2009
               100                                                                                                 100


               80                                                                                                  80
  Percentage




                                                                                                      Percentage
               60                                                                                                  60
                     217211                                                                                              223212
                                 175                                                                                                 176
               40                   133                                                                            40                   147


               20                                                                                                  20
                                                35 32                                   29 36                                                      29 33
                                                             5 9           1   1                                                                                                           24 25
                                                                                                                                                               5    7         2   1
                0                                                                                                   0
                       Very      Satisfied     Neither    Dissatisfied       Very     Not relevant                         Very      Satisfied     Neither   Dissatisfied       Very     Not relevant
                     satisfied                                           dissatisfied                                    satisfied                                          dissatisfied
                                              Satisfaction rating                                                                                 Satisfaction rating


Question 15. - How effectively the palliative care team manages the                                  Question 16. - The palliative care team’s response to changes in the
patient’s symptoms                                                                                   patient’s care needs


                                             2008                           2009                                                                 2008                          2009
               100                                                                                                 100


               80                                                                                                  80
  Percentage




                                                                                                      Percentage
               60    254223                                                                                              255232
                                                                                                                   60

                                 170166
               40                                                                                                  40                153144


               20                                                                                                  20
                                                17 19                                   15 13                                                      17 19                                   27 21
                                                             3 3            1 0                                                                                 3 8           2 0
                0                                                                                                   0
                       Very      Satisfied      Neither   Dissatisfied       Very     Not relevant                         Very      Satisfied     Neither   Dissatisfied       Very     Not relevant
                     satisfied                                           dissatisfied                                    satisfied                                          dissatisfied
                                              Satisfaction rating                                                                                 Satisfaction rating


PCOC Patient and Carer National Survey 2009                                                                                                                                                  Page 15 of 19
Question 17. - Emotional support provided to the patient by the
palliative care team


                                             2008                          2009
               100

               80
  Percentage




                     254232
               60

               40                135134

               20
                                               33 33                                   27 15
                                                           7 7            1 0
                0
                       Very      Satisfied     Neither   Dissatisfied       Very     Not relevant
                     satisfied                                          dissatisfied
                                              Satisfaction rating




PCOC Patient and Carer National Survey 2009                                                         Page 16 of 19
       Have you had someone to help you with practical tasks?
       Just under one third of carers did not need help with practical tasks. Of those that needed help, 70% felt that they had all the help that they needed
       while one third (30%) had either no help or not enough help with practical tasks. The results were similar in 2008.

        Table 15 Practical tasks?
                                                                                    2008                                    2009
       Response
                                                                         Number                 %               Number                 %
       Yes, I’ve had all the help I need                                   208                45.3                206                 49.2
       Yes, but not enough                                                  44                  9.6                38                  9.1
       I haven’t needed help                                               166                 36.2               125                 29.8
       No                                                                   41                  8.9                50                 11.9
       Total                                                               459                100.0               419                100.0
       Not stated/inadequately described                                    27                                     16

       Did anyone give you information on whether you would qualify for a Carer Payment or Allowance?
       Over 80% of carers needed financial help. Of these, 66% were given all of the information they needed about the carer payment or allowance
       compared to 51% in 2008. This is an improvement of around 15%. For both 2008 and 2009 surveys, approximately one quarter were not given
       any information.

        Table 16 Carer Payment or Allowance?
                                                                                    2008                                    2009
       Response
                                                                         Number                 %               Number                 %
       Yes, I was given all the information I need                         237                51.1                234                 56.3
       Yes, it was mentioned but not in any detail                          39                  8.4                25                  6.0
       I haven’t needed any financial help                                  81                 17.5                63                 15.1
       No                                                                  107                 23.1                94                 22.6
       Total                                                               464                100.0               416                100.0
       Not stated/inadequately described                                    22                                     19




PCOC Patient and Carer National Survey 2009                                                                                                    Page 17 of 19
       Did someone give you information about available support services?
       In 2009 only 11% of carers did not need support services. Of those that did, almost three quarters (74%) were given all the information they
       needed compared to just 58% in 2008, representing an improvement of around 16%. Nine per cent reported that that they were given no
       information in 2009 compared to 28% in 2008.

        Table 17 Support services?
                                                                                  2008                                   2009
       Response
                                                                       Number                 %               Number                 %
       Yes, I was given all the information I need                       270                57.6                275                 65.5
       Yes, it was mentioned but not in any detail                        84                17.9                 64                 15.2
       I haven’t needed any help                                          71                 15.1                47                 11.2
       No                                                                 44                  9.4                34                  8.1
       Total                                                             469                100.0               420                100.0
       Not stated/inadequately described                                  17                                     15


       Did someone give you practical training in lifting, managing medicine or other tasks?
       In 2009 nearly 40% of carers did not need any help with lifting, managing medicine or other caring tasks. Of those who did, only 44% were given
       all the training they felt they needed compared to just 23% in 2008. This represents an improvement of around 21%. In both 2008 and 2009
       approximately 46% reported that they received no training.

        Table 18 Did someone give you practical training in lifting, managing medicine or other tasks?
                                                                             2008                                        2009
       Response
                                                                     Number            %               Number                        %
       Yes, I was given all the training I need                        106            22.8               110                        26.7
       Yes, I was given a bit, but not enough                           39             8.4                25                         6.1
       I haven’t needed any help                                       188            40.5               163                        39.6
       No                                                              131            28.2               114                        27.7
       Total                                                           464           100.0               412                       100.0
       Not stated/inadequately described                                22                                23




PCOC Patient and Carer National Survey 2009                                                                                                 Page 18 of 19
       Comments about carer experiences
       Out of the 435 carers who participated in the 2009 survey 203 provided a total of 224 comments on their experiences. Approximately 68% of
       these were positive. The main focus of these comments was in praise of the palliative care services provided, and particularly the staff with whom
       carers had contact.

       Approximately 9% of the comments related negatively towards the staff and/or the organisation. Seven percent of carers reported varying levels of
       stress, 10% commented that they were given inadequate information and a further 4% commented that they needed more help.




PCOC Patient and Carer National Survey 2009                                                                                                  Page 19 of 19

				
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