A prospective cohort study and evaluation of an end-of-life programme intervention in a primary health care setting

Master Thesis

2014

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University of Cape Town

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Context: Palliative care is the holistic care for patients, and their families, who are facing the end of their life due to a life-threatening illness. The Global burden of disease indicates that 65.5% of all deaths in 2010 were caused by non-communicable diseases. In South Africa, seven of the top ten causes of death in 2007 would benefit from palliative care. Objectives: This study aimed to evaluate patient reported outcomes at a Community Health Centre (CHC) prior to an intervention and to evaluate the impact of an intervention involving a support group and focused care for people facing life threatening illness. Method: This study was conducted in a primary health care clinic, over a period of six months. Initially the participants were recruited, by the programme coordinator, to a control group (Group A) and the African Palliative Care Association African Palliative Outcome Scale (APCA African POS) was applied to them weekly for six weeks. Thereafter the intervention began, consisting of a support group and an in-depth consultation with a doctor at the clinic. The intervention group (Group B) was recruited after the completion of Group A’s data collection. Group B, like Group A, were asked to complete the APCA African POS questions, weekly for six weeks. Group A and Group B were invited to participate in the intervention. The participants still involved in the intervention at the completion of the study, and the staff at the CHC, completed an evaluation of the intervention. Results: There were 46 participants recruited to the study, five participants were excluded as they were not mentally competent; 20 participants were recruited to Group A and 21 participants were recruited to Group B. The percentage of participants in the whole cohort who died was 43.9%, with 66.7% of Group B dying at some point in the study. All (100%) participants wanted the role of programme coordinator to continue, the support group to continue to meet, monthly and the programme to continue with few changes. Of the staff that completed the evaluation, 64.9% had referred patients to the study, 66.67% stated that the study had a positive impact on them as staff members and 96.9% stated that they wanted the programme to continue. Conclusion: The participant and staff evaluation showed that both parties found the programme beneficial and recommended that the programme continue, with few changes. However, due to the attrition rate and poor participation in the intervention among Group B participants, the APCA African POS results could not be used to show a change in patient reported outcomes. Recommendations include: a permanent palliative care programme, a study over a longer period of time, active reminders to refer patients to the programme timeously, palliative care training for the staff in the facility and more opportunities for staff to be more involved in future palliative care programmes within the clinic.
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