Assessing and Responding to Palliative Care Needs in Rural Sub-Saharan Africa: Results from a Model Intervention and Situation Analysis in Malawi

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

Assessment of water, sanitation and hygiene interventions in response to an outbreak of typhoid fever in Neno District, Malawi

<div><p>On May 2, 2009 an outbreak of typhoid fever began in rural villages along the Malawi-Mozambique border resulting in 748 illnesses and 44 deaths by September 2010. Despite numerous interventions, including distribution of WaterGuard (WG) for in-home water treatment and education on its use, cases of typhoid fever continued. To inform response activities during the ongoing Typhoid outbreak information on knowledge, attitudes, and practices surrounding typhoid fever, safe water, and hygiene were necessary to plan future outbreak interventions. In September 2010, a survey was administered to female heads in randomly selected households in 17 villages in Neno District, Malawi. Stored household drinking water was tested for free chlorine residual (FCR) levels using the N,N diethyl-p-phenylene diamine colorimetric method (HACH Company, Loveland, CO, USA). Attendance at community-wide educational meetings was reported by 56% of household respondents. Respondents reported that typhoid fever is caused by poor hygiene (77%), drinking unsafe water (49%), and consuming unsafe food (25%), and that treating drinking water can prevent it (68%). WaterGuard, a chlorination solution for drinking water treatment, was observed in 112 (56%) households, among which 34% reported treating drinking water. FCR levels were adequate (FCR ≥ 0.2 mg/L) in 29 (76%) of the 38 households who reported treatment of stored water and had stored water available for testing and an observed bottle of WaterGuard in the home. Soap was observed in 154 (77%) households, among which 51% reported using soap for hand washing. Educational interventions did not reach almost one-half of target households and knowledge remains low. Despite distribution and promotion of WaterGuard and soap during the outbreak response, usage was low. Future interventions should focus on improving water, sanitation and hygiene knowledge, practices, and infrastructure. Typhoid vaccination should be considered.</p></div

Household safe water, hygiene, and sanitation practices among survey respondents, Neno District, Malawi, September 2010.

<p>Household safe water, hygiene, and sanitation practices among survey respondents, Neno District, Malawi, September 2010.</p

Interventions received by village, as reported by village leadership, and number and percentage of surveyed household respondents who reported attendance at community educational meetings (“typhoid talks”), September, 2010.

<p>Interventions received by village, as reported by village leadership, and number and percentage of surveyed household respondents who reported attendance at community educational meetings (“typhoid talks”), September, 2010.</p

Major thematic codes generated from patient and caregiver interviews.

<p>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).</p

Summary of palliative care services provided by the Neno Palliative Care Program (NPCP, January through October 2012).

<p>*Setting information is missing for 1 patient encounter.</p>§<p>Describes non-clinical services provided to the 63 patients enrolled in the NPCP from January through October 2012. Non-clinical services were provided by the Abwenzi Pa Za Umoyo (APZU)/Partners In Health (PIH) Village Health Worker program and Program on Social and Economic Rights in collaboration with the Ministry of Health, Ministry of Gender, Child Development and Community Development, and the Neno Office of Social Welfare.</p>¶<p>In addition to counseling and emotional support, psychosocial services include provision of in-kind support (soap, water collection receptacles, new shoes, etc.), food packages, housing repairs, and school tuition payments and school supplies for patients’ children.</p><p>Summary of palliative care services provided by the Neno Palliative Care Program (NPCP, January through October 2012).</p

Patient pain status, severity, and management at the initial Neno Palliative Care Program (NPCP) encounter (January through October 2012).

<p>*African POS = African Palliative Care Association African Palliative Outcome Scale.</p>§<p>Pain measured using the African POS, which scores pain in 1-point increments from 0 to 5 on a 6-point Likert scale. Harding R, Selman L, Agupio G, Dinat N, Downing J, et al. (2010) Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale. Health and Quality of Life Outcomes 8∶10. doi:10.1186/1477-7525-8-10.</p>¶<p>SE = standard error.</p>•<p>Documented baseline pain assessment at initial encounter is missing for 7 patients.</p>#<p>Indicated by African POS = 0.</p><p>**Indicated by African POS>0.</p>§§<p>Indicated by African POS≥3.</p>¶¶<p>Documented HIV sero-status is missing for 2 patients.</p>••<p>Includes any non-opioid (e.g. ibuprofen), weak opioid (e.g. codeine), or strong opioid (e.g. morphine) prescribed by the referring health worker prior to NPCP enrollment.</p><p>Patient pain status, severity, and management at the initial Neno Palliative Care Program (NPCP) encounter (January through October 2012).</p

Patient symptom presence and severity over the three days prior to Neno Palliative Care Program enrollment (N = 36).

<p>*Present indicates score of >0 on the African Palliative Care Association African Palliative Outcome Scale.</p>¶<p>African POS = African Palliative Outcome Scale, which scores symptom severity in 1-point increments from 0 to 5 on a 6-point Likert scale. Harding R, Selman L, Agupio G, Dinat N, Downing J, et al. (2010) Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale. Health and Quality of Life Outcomes 8∶10. doi:10.1186/1477-7525-8-10.</p>§<p>Percentages do not sum to 100% as more than one symptom was reported per patient.</p>•<p>SE = Standard error.</p><p>Patient symptom presence and severity over the three days prior to Neno Palliative Care Program enrollment (N = 36).</p

Map of Neno District, Republic of Malawi.

<p>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.</p

Characteristics of patients at enrollment in the Neno Palliative Care Program (NPCP, January through October 2012).

<p>*Includes the following conditions: anal fissure, paraplegia, and tuberculosis.</p>§<p>HIV = Human immunodeficiency virus.</p>¶<p>Documented HIV sero-status is missing for 2 patients.</p>•<p>ART = Antiretroviral therapy.</p>#<p>For 3 of 6 patients documentation could not be verified because patients presented for palliative care from districts other than Neno district.</p><p>Characteristics of patients at enrollment in the Neno Palliative Care Program (NPCP, January through October 2012).</p