"Nobody ever asked how I was": the hidden mental health burden of caring for someone with spinal cord injury.

PURPOSE: This study aimed to understand how caregivers of people living with spinal cord injury (SCI) experience and carry secondary trauma, and how this shapes role identity and emotional wellbeing. It focused on the psychological toll of caregiving, highlighting needs that remain unsupported.

MATERIALS AND

METHODS

Twenty-three SCI caregivers participated in in-depth semi-structured interviews. Data were analysed using Reflective Thematic Analysis to understand recurring emotional and psychological challenges across the caregiving journey.

RESULTS

Five themes emerged: (1) SCI reality uncovered, confronting the gap between expectations and lived reality; (2) Shared traumatisation, describing caregivers' exposure to acute trauma and emotional burden alongside the person living with SCI; (3) The sidelined supporter, reflecting systemic invisibility across care contexts; (4) Masking mental health, involving the concealment of personal distress; and (5) Demanding a discharge toolkit, underscoring the desire to access adequate post-discharge support. Caregivers described persistent emotional suppression, role loss, and social isolation.

CONCLUSION

Caregivers carry emotional strain that is internalised, and rarely acknowledged. Their needs are frequently silenced, by their own efforts to stay strong and systems that overlook them. Addressing this burden demands the embedding of dedicated caregiver support into rehabilitation, with sustained attention to the emotional demands of long-term care.