Assessing and responding to palliative care needs in rural sub-Saharan Africa: results from a model intervention and situation analysis in Malawi

Abstract

Introduction: Palliative care is rarely accessible in rural sub-Saharan Africa. Partners In Health and the Malawi government established the Neno Palliative Care Program (NPCP) to provide palliative care in rural Neno district. We conducted a situation analysis to evaluate early NPCP outcomes and better understand palliative care needs, knowledge, and preferences.

Methods: Employing rapid evaluation methodology, we collected data from 3 sources: 1) chart review of all adult patients from the NPCP's first 9 months; 2) structured interviews with patients and caregivers; 3) semi-structured interviews with key stakeholders.

Results: The NPCP enrolled 63 patients in its first 9 months. Frequent diagnoses were cancer (n = 50, 79%) and HIV/AIDS (n = 37 of 61, 61%). Nearly all (n = 31, 84%) patients with HIV/AIDS were on antiretroviral therapy. Providers registered 112 patient encounters, including 22 (20%) home visits. Most (n = 43, 68%) patients had documented pain at baseline, of whom 23 (53%) were treated with morphine. A majority (n = 35, 56%) had ≥1 follow-up encounter. Mean African Palliative Outcome Scale pain score decreased non-significantly between baseline and follow-up (3.0 vs. 2.7, p = 0.5) for patients with baseline pain and complete pain assessment documentation. Providers referred 48 (76%) patients for psychosocial services, including community health worker support, socioeconomic assistance, or both. We interviewed 36 patients referred to the NPCP after the chart review period. Most had cancer (n = 19, 53%) or HIV/AIDS (n = 10, 28%). Patients frequently reported needing income (n = 24, 67%) or food (n = 22, 61%). Stakeholders cited a need to make integrated palliative care widely available.

Conclusions: We identified a high prevalence of pain and psychosocial needs among patients with serious chronic illnesses in rural Malawi. Early NPCP results suggest that comprehensive palliative care can be provided in rural Africa by integrating disease-modifying treatment and palliative care, linking hospital, clinic, and home-based services, and providing psychosocial support that includes socioeconomic assistance.

Figure 1. Map of Neno District, Republic of Malawi.

The inset picture depicts Neno district, located in the southwestern portion of the country. The district shares an international border with Mozambique to the west and borders with Ntcheu district to the north; Balaka and Zomba districts to the northeast; Blantyre district to the east; Chikwawa to the south; and Mwanza district to the southwest. The inset legend illustrates the locations of major health facilities, including the district’s two hospitals–Neno District Hospital and Lisungwi Community Hospital–as well as the remaining 11 health centers.

Figure 2. Major thematic codes generated from patient and caregiver interviews.

The coding tree depicts major themes identified from structured patient and caregiver interviews. Codes relate to patient and family caregivers’ experiences with illness, palliative care services provided, and palliative care services desired. Subordinate child codes elaborate descriptions for each root code. All root and child codes were generated using content analysis methodology and Dedoose software (SocioCultural Research Consultants, LLC., Manhattan Beach, CA, USA).

Figure 3. Neno Palliative Care Program team members conduct a home visit in a rural village.

Five members of the Neno Palliative Care Program (NPCP) team travel by foot to reach the home of a palliative care patient living in rural Neno district, Malawi. An Abwenzi Pa Za Umoyo/Partners In Health Medical Officer with specialized training in palliative care (foreground) leads the home visit. He is accompanied by (from left to right) a palliative care nurse, a Program on Social and Economic Rights social worker, a Village Health Worker and a NPCP clerk. NPCP team members work together to assess and treat patient pain and other physical symptoms, provide disease-specific care for serious chronic illnesses, and offer psychosocial support to patients and their families.