Voices of home-based palliative care community health workers in rural Malawi: A mixed methods study on factors affecting role and sustainability

Abstract

Purpose: St. Gabriel’s Hospital (SGH) in Namitete, Malawi, has a Home-Based Palliative Care program of 60 community health workers (CHWs) to support rehabilitation work. Over 5 years, these CHWs received support through annual rehabilitation training programs. The study explores the nature of the CHWs’ roles and factors affecting the program’s sustainability. Subjects: Participants were home-based palliative care CHWs at SGH (n = 60). Methods: This is a mixed-methods study including qualitative and quantitative data and analysis methods. Data were collected from training surveys, focus group discussion material, field and home-visit observation checklists. Results: Results showed that 59% of the CHWs traveled ≥ 5 km to visit patients. 100% of the 57 patients had participation restrictions. Following trainings, 93.3% of the CHWs felt more prepared. Qualitative analysis revealed four themes: (1) Empowerment and Motivation; (2) Barriers to care; (3) Communication and Network; (4) Scope of practice and Self-Perception of impact. Conclusion: This study illuminated important aspects of the CHWs’ work: empowerment through training, burden of travel, and altruism. Future studies could include impact of CHW-to-caregiver training, patient outcome measures following care, and future training needs. Significance: This study provides a unique perspective of the successes, barriers, and motivations of home-based CHWs in Malawi.

Keywords:

• Rehabilitation
• Community health workers
• Palliative care
• Physical therapy
• Physiotherapy
• LMIC
• Rehabilitation training
• Rehabilitation education
• Community rehabilitation
• Home-based rehabilitation
• Malawi

Acknowledgements

We want to thank and acknowledge the following for their contribution during the planning, data collection, and data management and during the development of this manuscript: Jeannette Q. Lee, PT, PhD, CLT, CSCS, Emily Gee PT, DPT; Alexander Ngalande; Ruth Kanjirawaya, SPT; Christopher Stewart, MD.

Disclaimer statements

Contributors GW and KN are the principal investigators of this project including development of data-collection instruments. GW and KN wrote the first draft of the manuscript. SR provided guidance and input throughout the development of the data-collection instruments, analysis of the data, and edited the draft through several iterations. All authors reviewed the manuscript and approved it for submission.

Funding None.

Conflict of interest None.

Ethics approval None.