The lived experience of carers who assist people with disability in Ernakulam, Kerala, India

Abstract

Purpose: Family members are preferred providers of care for people with disability in India. Despite this, research which evaluates the impact of caregiving is limited. This qualitative study provides a comprehensive, in-depth exploration of the lived experience of carers who provide assistance to persons with a disability in Southwest India.

Methods: In this qualitative study, 20 carers who assist persons with disability were purposively selected to undertake semi-structured interviews across a variety of domains. Data analysis was informed by Attride-Stirling's thematic network analysis.

Results: Five global themes were identified which included; carers commitment to caring; concurrent demands of caregiving; mental and physical health of carers; networks and sources of non-financial support; and finances - strains and supports.

Conclusions: This study provides an in-depth exploration of the lived experience of carers in Kerala, India which will inform the future development of interventions to assist primary carers.Implications for rehabilitationFamily members are preferred providers of care for people with disability in India.By understanding the issues that affect carers who assist people with disability, it is possible to develop more effective, targeted, and sustainable interventions, that meet the needs of carers and alleviate some of their burden.Improving the health and wellbeing of carers needs to be urgently addressed in order to improve outcomes for those with disability - whom they care for.

Keywords: Carers; India; caregiving; disability; qualitative.