The road to a new normal – A qualitative study on relatives’ needs and roles in amputation rehabilitation

Abstract

Objective

To explore the roles, experiences and support needs of relatives of individuals who have undergone major lower extremity amputation during the early post-amputation period (0–2 years).

Design

Qualitative study using focus group interviews and a Research-Driven Photo Elicitation approach.

Setting

A 5-day psychosocial residential rehabilitation program for individuals with lower extremity amputation.

Participants

Thirty-three relatives of individuals with a major lower extremity amputation recruited through participating patients.

Intervention

Participation in focus group interviews informed by photo elicitation to facilitate reflection and discussion of caregiving experiences.

Main Measures

Data were analysed using Reflexive Thematic Analysis to identify patterns and themes related to relatives’ roles and needs.

Results

One overarching theme, The Road to a New Normal, described relatives’ adaptive processes following amputation. Three subthemes were identified: (a) a gradual realisation of the long-term emotional and practical consequences of amputation; (b) challenges in supporting patients’ emotional reactions, including grief and altered identity; and (c) shifting relationship dynamics, where relatives assumed caregiving roles while striving to maintain their original relational identity. Many relatives adopted a shared ‘we-perspective’, emphasising joint adaptation and coping.

Conclusions

Relatives play a central role in post-amputation rehabilitation, and the findings highlight the complexity of relatives’ adaptation following amputation. Their experiences highlight the importance of systematically involving relatives in rehabilitation through support for dyadic coping, emotional preparedness and shared goal setting to enhance outcomes for both patients and caregivers.