title: Assessing and responding to palliative care needs in rural sub-Saharan Africa: results from a model intervention and situation analysis in Malawi.
abstract: BACKGROUND
  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.
authors.affiliation: Department of Medicine, Division of Infectious Diseases, University of North Carolina School of Medicine, Chapel Hill, North Carolina, United States of America; Abwenzi Pa Za Umoyo, Neno, Malawi; Partners in Health, Boston, Massachusetts, United States of America.
authors.forename: Michael E
authors.initials: ME
authors.lastname: Herce
authors.affiliation: Department of Global Health and Social Medicine, Harvard Medical School, Boston, Massachusetts, United States of America.
authors.forename: Shekinah N
authors.initials: SN
authors.lastname: Elmore
authors.affiliation: Abwenzi Pa Za Umoyo, Neno, Malawi; Partners in Health, Boston, Massachusetts, United States of America.
authors.forename: Noel
authors.initials: N
authors.lastname: Kalanga
authors.affiliation: Abwenzi Pa Za Umoyo, Neno, Malawi; Partners in Health, Boston, Massachusetts, United States of America.
authors.forename: James W
authors.initials: JW
authors.lastname: Keck
authors.affiliation: Abwenzi Pa Za Umoyo, Neno, Malawi; Partners in Health, Boston, Massachusetts, United States of America; Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, United States of America.
authors.forename: Emily B
authors.initials: EB
authors.lastname: Wroe
authors.affiliation: Abwenzi Pa Za Umoyo, Neno, Malawi; Partners in Health, Boston, Massachusetts, United States of America.
authors.forename: Atupere
authors.initials: A
authors.lastname: Phiri
authors.affiliation: Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, United States of America.
authors.forename: Alishya
authors.initials: A
authors.lastname: Mayfield
authors.affiliation: Neno District Health Office, Neno District Hospital, Ministry of Health, Government of the Republic of Malawi, Neno, Malawi.
authors.forename: Felix
authors.initials: F
authors.lastname: Chingoli
authors.affiliation: Abwenzi Pa Za Umoyo, Neno, Malawi; Partners in Health, Boston, Massachusetts, United States of America.
authors.forename: Jason A
authors.initials: JA
authors.lastname: Beste
authors.affiliation: Neno District Health Office, Neno District Hospital, Ministry of Health, Government of the Republic of Malawi, Neno, Malawi.
authors.forename: Listern
authors.initials: L
authors.lastname: Tengatenga
authors.affiliation: Abwenzi Pa Za Umoyo, Neno, Malawi; Partners in Health, Boston, Massachusetts, United States of America.
authors.forename: Junior
authors.initials: J
authors.lastname: Bazile
authors.affiliation: Partners in Health, Boston, Massachusetts, United States of America; Department of Global Health and Social Medicine, Harvard Medical School, Boston, Massachusetts, United States of America; Department of Medicine, Division of Palliative Care, Massachusetts General Hospital, Boston, Massachusetts, United States of America.
authors.forename: Eric L
authors.initials: EL
authors.lastname: Krakauer
authors.affiliation: Abwenzi Pa Za Umoyo, Neno, Malawi; Partners in Health, Boston, Massachusetts, United States of America.
authors.forename: Jonas
authors.initials: J
authors.lastname: Rigodon
mesh_terms: D000328:Adult; D017954:Africa South of the Sahara; D000368:Aged; D017028:Caregivers; D005260:Female; D005843:Geography; D007722:Health Knowledge, Attitudes, Practice; D006301:Health Services Needs and Demand; D006801:Humans; D008295:Malawi / Q000453:epidemiology; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000175:diagnosis / Q000453:epidemiology / Q000628:therapy; D059408:Pain Management; D010147:Pain Measurement; D010166:Palliative Care; D015995:Prevalence; D015397:Program Evaluation; D036301:Qualitative Research; D019035:Rural Health Services; D012424:Rural Population