BACKGROUND:
Despite increased attention on caregivers as a distinct group with specific challenges, there remains a need for in-depth research on caregivers of people with traumatic disabilities, exploring emotional responses and everyday life after initial care. This study aimed to explore how informal caregivers of people with traumatic disabilities experience loss and grief and how their everyday lives are affected over time to inform future initiatives.

METHODS:
A qualitative design was employed, applying individual, semi-structured in-depth interviews with 17 caregivers. Reflexive thematic analysis was conducted. Input from a user panel ensured quality and relevance.

RESULTS:
Caregivers experience multiple losses: loss of the person they once knew, their own identity, familiar roles, social networks, and life expectations. These losses often result in enduring and ambivalent grief. Caregivers feel socially misunderstood and isolated, leading to emotional strain and exhaustion. They take on many new responsibilities to maintain family functioning and ensure the best possible quality of life for themselves and their loved ones. This includes major and minor micro-activities, performed consciously and unconsciously, that support a sense of normalcy. The extent to which loss, grief, and responsibility impact caregivers varies according to individual resources and life circumstances.

CONCLUSIONS:
Informal caregivers of people with traumatic disabilities face complex, often unacknowledged losses that deeply affect their identities, relationships, and wellbeing. Their everyday lives have changed dramatically and require on-going adaption. Greater recognition and tailored support are needed to address these challenges and promote both caregiver and care recipient wellbeing.