Abstract
INTRODUCTION
Effective palliative care requires a multidisciplinary and holistic approach based on the provision of comprehensive care with treatment of pain and physical symptoms, management of psychosocial needs, as well as other non-medical needs. Few studies exist about palliative care in India, particularly in the context of people living with HIV/AIDS. MSF supports an advanced HIV inpatient ward in Bihar, where mortality rates are high. We aimed to explore the lived experiences of palliative care among patients, and their families, with advanced HIV, to understand conceptions of illness, death, and end-of-life care in Bihar, India.
METHODS
We carried out an exploratory, qualitative study using 21 semi-structured in-depth interviews and 1 focus group discussion. Participants included patients living with HIV/AIDS (PLHA), caregivers, relatives of deceased patients who had been treated in a government hospital, and key informants from community-based organizations in Patna, Bihar. Interview data were transcribed verbatim, translated from Hindi or other local languages into English by research assistants, and analysed using NVIVO (QSR International, Victoria, Australia). Two researchers then carried out inductive, thematic analysis of the data. Emergent codes and categories were identified and compared to subsequent areas of inquiry.
ETHICS
This study was approved by the ethics committee of the All India Institute of Medical Sciences, Patna, India, and the MSF Ethics Review Board.
RESULTS
Latent thematic analysis revealed poor understanding of palliative care among advanced HIV patients and their caregivers; the term “palliative care” was not known to PLHA. PLHA and relatives expected active treatment, despite poor prognosis, and believed that dying patients should be provided a separate, private inpatient area. However, patients were able to identify the importance of psychosocial counselling, the desire for a separate dedicated space for terminal patients with social and recreational activities to prevent isolation, and a preference for home-based palliative care wherever possible. Our data showed that relatives of patients played a substantial role in influencing doctors and nurses to avoid divulging the nature of the disease and prognosis directly to patients. There was variation in preferences for open disclosure of prognosis amongst critically ill PLHA and relatives of deceased patients.
CONCLUSION
There is a need to improve palliative care provision for advanced HIV patients in Bihar, who do not typically have access to such services. PLHA should have a separate dedicated area, with adequate psychosocial counselling for patients and families, and regular recreational activities to prevent social isolation.
CONFLICTS OF INTEREST
None declared.
