Background: Acquiring a brain (ABI) or spinal cord injury (SCI) constitutes a severe life change for the whole family, and the consequences can affect the overall family functioning negatively resulting in decreased quality of life (QoL) and increased caregiver burden. The paradigm of supporting the family after ABI or SCI has primarily been on psychosocial interventions focusing on the caregiver or the individual with the injury separately. However, improving family function must include the whole family.
Objective: To investigate the effectiveness of an eight-week manual-based family intervention developed for the whole family living with ABI or SCI.
Methods: A two-arm randomized controlled trial. Individuals (≥ 18 years) with moderate to severe ABI or SCI were recruited from two specialized rehabilitation units in East-Denmark between six- months to two-years after discharge. Recruitment period was 2018 to 2021, and individuals with ABI or SCI were randomly allocated to an intervention group (IG) or a control group (CG) (ratio 1:1) with their primary caregivers. IG received the manual-based family intervention, which relies on strategies from cognitive behavioral therapy and couples and family therapy. The content of the eight- weekly sessions included making meaning of the injury, shifting to a positive focus, managing emotions, communicating effectively, finding new solutions, and boundary making. CG received one psychoeducational session regarding the consequences of injury. Self-reported questionnaires on QoL measured with mental component summary scale from SF-36 and caregiver burden measured with caregiver burden scale were completed as primary outcome measures at baseline, at two- and eight-months follow-up.
Results: A total of 157 participants were included: 74 randomized to IG (completed by 60), and 83 to CG (completed by 69). Mean age in IG was 53.4 (SD 16.9) years, 53% males, 71% spouses or partners, 91% with length of relationship > 5 years, and 89% living together with the participating caregiver(s). Mean age in CG was 50.3 (SD 14.4) years, 49% males, 62% spouses or partners, 80% with length of relationship > 5 years, and 82% living together with the participating caregiver(s). In IG, 69% of the caregivers reported caring for the individual with the injury every day, which was 64% in CG. In IG, 71% reported spending between 1 to 5 hours each day on supervising, correspondingly with 64% in CG. The groups did not differ significantly on any baseline characteristics (all p’s > 0.05). Analyses on the outcomes of the trial are ongoing and will be reported at the conference.
Conclusion: The trial design was feasible and is currently being evaluated. The results of the ongoing analyses are expected to contribute with novel knowledge on the effectiveness of a manual-based family intervention.