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

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.