Perspectives of patients and informal caregivers on cancer palliative care at hospice Africa Uganda

Abstract

Introduction: 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 caregiverscaregiver’s 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