Palliative care services at Nkhoma, rural Malawi – A qualitative exploration of experiences of the care providers and the recipients
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- Master theses 
Background and purpose Palliative care is rapidly developing in Africa, but still many people live and die in pain because the coverage and the capacity to meet the needs are low. Morphine is a potent opioid pain killer, however it’s circulation in low-income countries is extremely limited (0.03%). Almost all the available morphine is consumed in developed countries. This research is part of a master study in Global Health performed at the University of Bergen in Norway, in collaborations with institutions in Norway and Malawi, on provision of palliative care within Nkhoma hospital catchment area. The aim of the research is to investigate the strengths and limitations associated with provision of palliative care in the low income setting of Nkhoma Malawi, as experienced by both the palliative care providers and care reciepients. It aimed to describe practice models, strategies and challenges to delivering end-of-life care and to create awareness and provide knowledge that can be used to futher strenghten the palliative care program at Nkhoma, Malawi and other similar settings. Methodology A qualitative research design was used and purposive selection of participants participants was done to ensure diversity of participants. To boost the comprehensiveness of the report, data was triangulated primarily from four sources, namely: clinic documentations, active participatory observation and participants observation, in-depth interviews with palliative care reciepients as well as with the palliative care providers, both within the hospital premises and in the homes of care reciepients. In addition, discussions during meetings and informal chats, provided substantial insights into the delivery of palliative care services at Nkhoma. The participants included patients and their guardians, as well as healthcare providers, chaplaincy and community volunteers. Twenty (20) participants took part directly in the interviews that were conducted in English or in Chichewa with the help of a research assistant. The interviews lasted about 45 to 60 minutes and were audio-recorded after obtaining consent. In addition, more than thirty (30) patients were observed in the course of treatment, as part of the observatory component of my data collection, whose focus was to collect information on interactions, daily routines, practices, challenges and follow ups. Recorded interviews were thereafter transcribed verbatim and translated where applicable, followed by a four-step Malterud’s systematic text condensation which is a descriptive and explorative method for thematic cross-case analysis. Ethical approval was obtained ahead of the research from authorities in Norway and Malawi. Findings The study shows that many patients diagnosed with chronic life-limiting/threatening illnesses struggle with pain and other physical symptoms, such as stigmatization, and recurrent vaginal bleeding in patients with cervical cancer. As a result of these symptoms, many patients are unable to work and provide for themselves and their family. This leads to severe poverty and complete dependence. Moreover, poor access to resources and medication is a challenge that many face, since the community health centres, that are closer to the patients in those rural area, do not provide palliative care services due to drug policies restricting opioid pain killer distribution to the health centres. In addition to hospital-based care model, the Nkhoma palliative care team provides home-based services, which involves travelling far into the rural communities to provide physical, psychosocial, and spiritual care. However, the team is often unable to keep up with its home-based care schedule, due to limited resources and money to fuel the ambulance. Thus, many patients in the rural areas still live and die in pain. While the team may be able to address some of the physical symptoms, available resources significantly limit what they can do to meet the psychosocial and socioeconomic needs of patients. Conclusion Findings show that drug policy and availability, training, and financing are among the multiple and interconnected challenges affecting palliative care services at Nkhoma. Patients with chronic life-limiting illnesses and poverty, are especially prone to psychosocial and spiritual distress which contributes significantly to the total pain. In line with the palliative care holistic approach, serious attention should be giving to psychological, socioeconomic, and spiritual distress, as well as improved access to opioid pain-relief medications at centres closer to patients.