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BMC Palliative Care
Published in: BMC Palliative Care 1/2019

Open Access 01-12-2019 | Care | Research article

“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, India

Authors: Rekha Rachel Philip, Emilie Venables, Abdulla Manima, Jaya Prasad Tripathy, Sairu Philip

Published in: BMC Palliative Care | Issue 1/2019

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Abstract

Background

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.
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Metadata
Title
“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, India
Authors
Rekha Rachel Philip
Emilie Venables
Abdulla Manima
Jaya Prasad Tripathy
Sairu Philip
Publication date
01-12-2019
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2019
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-019-0400-2

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