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"Small small interventions, big big roles"- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, IndiaBackground: Home-based palliative care is an essential resource for many communities. We conducted a qualitative study to explore perceptions of a home-based palliative care programme in Kerala, India, from the perspective of patients, their care-givers and the doctors, nurses and volunteers running the intervention. Methods: A descriptive qualitative study was carried out. One focus group discussion (FGD) was conducted with patients (n = 8) and two with male and female volunteers (n = 12); and interviews were conducted with doctors (n = 3), nurses (n = 3) and care-givers (n = 14). FGDs and interviews were conducted in Malayalam, audio-recorded, transcribed verbatim and translated into English. Transcripts were coded and analysed using manual content analysis. Results: Doctors, nurses and volunteers have interdependent roles in providing palliative care to patients, including mentorship, training, patient care and advocating for patient needs. Volunteers also considered themselves to be mediators between families and the programme. Care-givers were mainly female and were caring for relatives. They have physically demanding, psychologically stressful and socially restrictive experiences of care-giving. They felt that the programme facilitated their role as care-givers by giving them training and support. Patients with long standing illnesses felt that the programme enabled them to become more independent and self-reliant. The local community supports the programme through economic contributions and offering practical assistance to patients. Conclusion: The salient features of this programme include the provision of regular holistic care through a team of doctors, nurses and patients. The programme was perceived to have improved the lives of patients and their care-givers. The involvement of volunteers from the local community was perceived as a strength of the programme, whilst simultaneously being a challenge.
Twenty years of home-based palliative care in Malappuram, Kerala, India: a descriptive study of patients and their care-giversThe well lauded community-based palliative care programme of Kerala, India provides medical and social support, through home-based care, for patients with terminal illness and diseases requiring long-term support. There is, however, limited information on patient characteristics, caregivers and programme performance. This study was carried out to describe: i) the patients enrolled in the programme from 1996 to 2016 and their diagnosis, and ii) the care-giver characteristics and palliative care support from nurses and doctors in a cohort of patients registered during 2013-2015.