The bittersweet experiences of providers of Home-Based Palliative Care (HBPalC): a qualitative study on the provider perspectives of HBPalC in Kerala, India.

Abstract

Background: Home-based care is a fundamental component of the Kerala model of palliative care, which has received global recognition. The study explores the experiences of palliative care providers caring for a vulnerable community of patients. Findings may assist in identifying gaps and replicating Kerala's palliative care model in other settings.

Methods: This descriptive qualitative study was conducted among palliative care providers (PCPs) and other stakeholders working with the Pain and Palliative Care Project of the National Health Mission (NHM), Thiruvananthapuram District, Kerala. Three Focus Group Discussions and 21 In-Depth Interviews were conducted among a purposively sampled group of participants including palliative care providers and patients. The validity of the data was ensured by data triangulation and member checks using standard methodologies. All interviews were audio recorded and thematic analysis was done using the Braun & Clarke method.

Results: PCPs experienced a multitude of positive and negative experiences and challenges. They found contentment in establishing an intimate relationship with patients and their families, getting the opportunity to deliver need-based quality care, crossing the hurdles of social acceptance and creating opportunities from challenges; giving them a feeling of satisfaction and self-worth. Challenges faced by caregivers included a lack of acceptance from patients/families, stress, burnout, and helplessness. Additionally, although the program was running efficiently in the community, palliative care providers faced administrative, organizational, and personal barriers that they felt impeded their contributions.

Conclusions: The study gives an in-depth illustration of the challenges and ambivalent experiences of palliative care providers working under Kerala's home-based palliative care programme, providing care to a vulnerable section of society. The caregivers themselves represent an underprivileged community of nurses who struggle to provide the highest possible care despite the challenges and difficulties.