| dc.description.abstract | The purpose of the study was to examine the phenomenon of cancer palliative
care as perceived by patients and informal caregivers who are receiving palliative care at
Hospice Africa Uganda. The study shows the views, contentment and expectations of patients
and caregivers about the nature of support received in cancer palliative care at HAU. The broad
objective of the study was to examine the perspectives of cancer patients and their family
caregivers on cancer palliative care so as to improve the delivery of palliative care services
offered by HAU. Whereas the specific objectives of the study were: To identify the nature of
palliative care support given to patients and their family caregivers; to examine patients and
family caregivers’ perceptions of palliative care received and to find out whether the
mechanisms in place enabled effective feedback from the clients about care received at HAU.
Methodology: A descriptive a phenomenological approach of qualitative data collection was
used. Purposive sampling method was used in identification of participants and thereafter in depth interview were used to collect data by use of an interview guide. Data were collected using
an audio recorder and later transcribed. Data analysis was through thematic analysis. Four
themes and fifteen sub-themes emerged through data categorization.
Results: The views of caregivers were quite divergent from those of patients experiencing the
pain which implies that there is no clear understanding of the care package to the patients and
caregivers. Nevertheless, it was recognized that HAU gives medical, financial and food support
to patients. However, the financial support at HAU differed from that given by branches of HAU
in rural areas like Hoima. The financial support given was found not to be adequate and access to
this support was inequitable among cancer and HIV/AIDS patients. It was also found out that
palliative care has improved quality and prolonged life of patients. More so, caregivers’ anxieties
were significantly reduced when their patients started receiving palliative care. However, much
as that was the case; there were concerns by some participants that professional caregivers
withhold information regarding patients care to both patients and caregivers. The mechanisms of
feedback at HAU had gaps and were somehow half hazard implying that the patients were
suffering silently because there was no clear feedback mechanisms a negative impact on the
quality of care provided.
Conclusion: By listening to the views of patients and caregivers about the nature of support it
would help the agency to be relieved of giving what may not be fully required by the patients or
what is inadequate because being palliative the patients and caregivers would be able to have a
say because a good support should originate from the views of patients. Given the views of the
patients and family caregivers therefore, one would conclude that by spreading the support the
organization would have better made a more holistic support by emphasizing this to the
satisfaction of the patients and their caregiver in line with their views.
Recommendation: I recommend that HAU administration streamlines its operations to include
patients and caregivers views for purposes of management of the nature of support efficiently.
There may also be dynamic staff interactions with clients, to enable detailed discussions on the
care package so as to get a mediated sense of service to the patients and ensure equity in
provision of support. Integration of patients and caregivers in Palliative Care at all levels to
understand their views would be of advantage to HAU in enabling effective feedback
mechanisms. | en_US |
