Stroke Survivors, their life and family care in India: Recovery and Rehabilitation

Abstract

Background: Stroke is a major global health issue and a leading cause of long-term disability, particularly in low- and middle-income countries such as India. Despite advancements in medical treatment, stroke survivors are dependent on their family caregivers due to limited rehabilitation facilities and healthcare infrastructure in India. However, research into stroke caregiving is predominantly rooted in the Western cultural context, often emphasising nuclear family structures and conventional pre-assumed gender roles, thereby inadequately addressing the diverse and complex caregiving scenarios prevalent in countries like India.

Aims and Objectives: This thesis aims to bridge this research gap by exploring the experiences of stroke survivors and their family caregivers in New Delhi, India, focusing on how caregiving responsibilities are negotiated, shared and sustained. It examines the caregiving roles within
the family and how these caregiving roles extend beyond family ties to social support networks such as extended family, neighbours, friends and wider community. Additionally, the study critically analyses how the distinct social and cultural values shape caregiving practices in the complex society of New Delhi, India.

Methods: This thesis employed a case study design (Stake,1995) to explore the experiences of stroke survivors and their family caregivers following a stroke event. Rolland’s Family System Illness Model (Rolland,1999, 2005) served as a theoretical lens to examine the interaction between illness and family dynamics. A narrative literature review was conducted to explore existing research on family caregiving and culture in the context of stroke. Seven case studies were selected based on pre-defined inclusion criteria. Interviews were collected through the Biographic Narrative Interview Method (BNIM) (Wengraf, 2009) and semi-structured interviews. Further, these interviews were analysed thematically by Braun and Clarke’s (2022) approach.

Results: Findings from the narrative review indicated that “Family” is rarely defined in stroke caregiving literature, but it is understood through the lens of caregiving roles. It also highlighted that socio-cultural factors such as gender norms, religious beliefs and social support networks shape caregiving practices. Thematic analysis of the seven case studies identified three key themes: 1. Impact of stroke on family dynamics, the theme explores how stroke reshapes family structures, disrupts traditional roles, and introduces emotional and functional
changes within the family system, 2. Role of socio-cultural values and support networks in care, this theme captures how cultural norms, religious beliefs, and social networks shape caregiving practices, responsibilities, and emotional experiences during stroke recovery 3. Adaptation and family values in the process of recovery, this theme explores how families collectively adjust to post-stroke life, reconfigure daily living, and draw upon cultural and emotional resources to sustain caregiving over the long term. An integrative approach was used
to combine insights from these findings to develop a synthesis which reveals three interconnected domains that shape stroke caregiving in India. 1. Redefining the immediate family highlights how the caregiving role shifts within families and extends to social networks. 2. Social and cultural values shape support networks: this underscores how caregiving support is deeply influenced by cultural concepts but diminishes over time 3. Sustaining caregiving addresses the complexities of long-term caregiving. Together, these domains lead to the development of the Family Care Dynamics (FCD) Framework.

Conclusion: This thesis presents a culturally informed framework that conceptualises family caregiving as a multi-dimensional, socially embedded practice shaped by immediate family caregiving roles, socio-cultural norms, and social support networks. By situating caregiving within its broader cultural context, this study addresses significant gaps in the existing literature and offers a new perspective for future research, policy development and intervention planning. It recommends creating community-based support systems, culturally appropriate rehabilitation services, and policies that formally acknowledge and support family caregivers in the Indian context.

Date of Award	24 Mar 2026
Original language	English
Awarding Institution	Bangor University
Supervisor	Patricia Masterson Algar (Supervisor), Sion Williams (Supervisor) & Maria Caulfield (Supervisor)