Evaluation of the integration of palliative care in a fragile setting amongst host and refugee communities: Using consecutive rapid participatory appraisals.

BACKGROUND: Palliative care is seldom integrated in healthcare in fragile, conflict affected and vulnerable settings with significant refugee populations. AIM: This study aimed to evaluate the integration of palliative care into a fragile, conflict affected and vulnerable community in Northern Uganda. DESIGN: Consecutive Rapid Participatory Appraisals were conducted to evaluate the integration of palliative care in Adjumani District. The first established a baseline and the second, 4 years later, evaluated progress. Data collection included documentary review, key informant interviews and direct observation. SETTING/PARTICIPANTS: A rural district in Uganda with equal numbers of refugees and host populations living side-by-side. 104 key informants were interviewed, and practice observed in 11 health facilities. RESULTS: At baseline, palliative care was not routinely integrated in the health system. Barriers included health system challenges, cultural beliefs, understanding and trust, mental health issues, gaps in palliative care provision, the role of the community and beliefs about illness impacted care with the village health teams being a trusted part of the health system. Following integration activities including training, mentorship and community sensitisation, the repeat rapid appraisal after 4 years showed a significant increase in palliative care delivery. New themes identified included increased provision of palliative care, the impact of training and community engagement and ownership of palliative care. CONCLUSION: Community engagement and participation, training interventions and referral pathways enabled the integration of palliative care. Rapid Participatory Appraisal provides a useful framework to evaluate activities aimed at integration of palliative care in a community.

Palliative care needs and barriers in an urban Ugandan Emergency Department: A mixed-methods survey of emergency healthcare workers and patients.

Background: Palliative Care offers patient-centered, symptom-focused relief for patients with incurable disease, and early integration of palliative care ensures quality of life and death while reducing medical impoverishment. The Emergency Department is an ideal yet understudied, under-utilized location to initiate palliative care. Objective: To evaluate the palliative care needs of patients with incurable disease and perceived barriers amongst healthcare providers in the Emergency Department of Kiruddu National Referral Hospital, Kampala, Uganda. Methods: A mixed methods survey of Emergency Department healthcare workers and patients was conducted. A crosse sectional survey of ninety-nine patients was conducted using the integrated Palliative Care Outcome Scale (IPOS). Eleven interviews were conducted with healthcare workers at Kiruddu Hospital, identified by purposive sampling. Descriptive and inferential statistics were used to analyze quantitative data.. Grounded theory approach was used to construct the in depth interview questions, code and analyze qualitative results and collapse these results into final themes. Results: The most common diagnoses were HIV/HIV-TB (32 %), heart disease (18 %), and sickle cell disease (14 %). The prevalence of unmet palliative care needs was substantial: more that 70 % of patients reported untreated symptoms e.g., pain, fatigue, difficulty breathing. Seventy-seven percent of the population reported severe or overwhelming pain. The main barriers to provision of palliative care in the Emergency Department as identified by healthcare workers were: (1) lack of adequate training in palliative care; (2) Challenges due to patient volume and understaffing; (3) the misconception that palliative care is associated with pain management alone; (4) Financial constraints as the greatest challenge faced by patients with incurable disease. Conclusions: We report a high prevalence of unmet palliative care needs among patients in this urban Ugandan Emergency Department, and important barriers reported by emergency healthcare providers. Identification of these barriers offers opportunities to overcome them including harnessing novel mHealth interventions such as clinical support apps or telehealth palliative care consultants. Integration of palliative care in this setting would improve the care of vulnerable patients, provide healthcare workers with an additional care modality while likely adding value to the health system.

Integrating palliative care into national health systems in Africa: a multi-country intervention study.

BACKGROUND: The WHO is calling for the integration of palliative care in all health care settings globally. METHODS: A 3.5-year program was implemented in 12 government hospitals, three each in Kenya, Rwanda, Uganda and Zambia. A four-pillared approach of advocacy, staff training, service delivery strengthening and international and regional partnership working was utilized. A baseline assessment was undertaken to ascertain needs, and 27 indicators were agreed to guide and evaluate the intervention. Data were also collected through surveys, interviews and focus groups. RESULTS: Palliative care was integrated into all 12 hospital settings to various degrees through concurrent interventions of these four approaches. Overall, 218 advocacy activities were undertaken and 4153 community members attended awareness training. 781 staff were equipped with the skills and resources to cascade palliative care through their hospitals and into the community. Patients identified for palliative care increased by a factor of 2.7. All 12 hospitals had oral morphine available and consumption increased by a factor of 2.4 over two years. Twenty-two UK mentors contributed 750 volunteer days to support colleagues in each hospital transfer knowledge and skills. CONCLUSIONS: Integration of palliative care within different government health services in Africa can be achieved through agreed interventions being delivered concurrently. These include advocacy at Ministry, Provincial and District level, intensive and wide-ranging training, clinical and support services supported by resources, including essential medicines, and an investment in partnerships between hospital, district and community.