The forgotten other: supporting the caregivers of people with limb absence during the hospital-to-home transition.

Abstract

This study aimed to explore the interrelated nature of how caregivers of people with limb absence impact and are impacted by the hospital-to-home transition. Moreover, this study aimed to explore how caregivers can be better supported to fulfil their role. A qualitative research study positioned within an interpretivist paradigm. Semi-structured interviews were conducted with 14 people with limb absence and 15 nominated caregivers. Data was analysed using a reflexive thematic analysis. Three themes were identified. (1) Lost in transition: Disconnection and divergence from hospital to home: Both service-users and caregivers described how caregivers were marginalised during the rehabilitation process, creating differing expectations regarding the service-users' functional abilities upon returning home. (2) Bearing the weight of unseen struggles: The impact of caregiving on the caregiver. Participants described the cumulative impact of caregiving on caregivers' physical and mental well-being. (3) Supporting the supporter: Participants highlighted informational, care continuity, communication, and social support gaps and described how such gaps could be addressed. This study offers novel insights into the lived experiences of both caregivers and service-users in navigating the hospital-to-home transition and foregrounds how caregivers can be better supported. Centralising caregivers' perspectives can help ensure that they inform evidence-based initiatives to support integrated rehabilitation environments.