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

Madhani, A. ORCID: https://orcid.org/0000-0002-6957-9087, Tilley, M. ORCID: https://orcid.org/0000-0003-0511-8561, Brook-Rowland, P. ORCID: https://orcid.org/0000-0002-6977-6267, Dosanjh, L. ORCID: https://orcid.org/0000-0002-7296-666X and Finlay, K. A. ORCID: https://orcid.org/0000-0002-8997-2652 (2026) “Nobody ever asked how I was”: the hidden mental health burden of caring for someone with spinal cord injury. Disability and Rehabilitation. ISSN 1464-5165 doi: 10.1080/09638288.2026.2632924

Abstract/Summary

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. Implications for rehabilitation: Caregivers perceived that supporting a person living with spinal cord injury involved sustained psychological strain that was often unacknowledged and unsupported within rehabilitation pathways. Caregivers described the hospital-to-home transition as fragmented and emotionally challenging, particularly due to insufficient information, limited mental health support, and a lack of structured follow-up after discharge. Addressing caregivers’ mental health needs requires the integration of formal support at the point of discharge alongside ongoing access to peer-based networks and outpatient rehabilitation services. Rehabilitation services should broaden their focus to include caregivers as active stakeholders whose wellbeing is central to the sustainability of home-based spinal cord injury care.

Item Type	Article
URI	https://centaur.reading.ac.uk/id/eprint/128631
Identification Number/DOI	10.1080/09638288.2026.2632924
Refereed	Yes
Divisions	Life Sciences > School of Psychology and Clinical Language Sciences > Department of Psychology
Publisher	Informa UK Limited
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