Reflective Reappraisal and Coping Among Long-term Amyotrophic Lateral Sclerosis Family Caregivers

Introduction: Sustaining long-term home-based caregiving for individuals with amyotrophic lateral sclerosis (ALS) presents significant challenges for family caregivers. While peer support is frequently recommended, the cognitive processes by which caregivers interpret their experiences and engage with peer support over prolonged caregiving trajectories remain unclear. In this study, we aimed to explore such processes within the Japanese context, where long-term, high-burden home care is common. Methods: Semi-structured interviews were conducted with 9 primary family caregivers affiliated with the Japan ALS Association. Participants had provided home-based care for 3 to 18 years. The interviews focused on caregiving challenges, coping experiences, and engagement with peer support. Data were thematically analyzed to examine patterns in caregivers’ cognitive interpretations and meaning-making processes over time. Results: Caregivers described positive cognition not as a fixed attitude but as a dynamic, non-linear process comprising 3 interrelated themes: (1) gaining experiential knowledge and emotional reassurance through peer connections, (2) proactive engagement with caregiving challenges accompanied by self-affirmation, and (3) sharing caregiving experiences with others. Sustained caregiving contexts and ongoing engagement with peer networks shaped these processes. Conclusions: Peer support may influence how some family caregivers cognitively interpret and sustain long-term ALS caregiving by providing experiential reference points, emotional normalization, and opportunities for reflection. However, these trajectories are context-dependent and should not be interpreted as normative or expected. Therefore, home care systems should offer peer support flexibly, respecting the diverse realities of caregivers and avoiding prescriptive expectations surrounding growth, positivity, or contribution.