Do caregivers of traumatic brain injury survivors experience post-traumatic growth? A mixed-methods study exploring the positive experiences of informal caregivers

Molly Hillyard; Ryan Westley; Jade Kettlewell

Just Accepted

This article has been peer reviewed and accepted for publication. It is in production and has not been edited, so may differ from the final published form.

Do caregivers of traumatic brain injury survivors experience post-traumatic growth? A mixed-methods study exploring the positive experiences of informal caregivers

Molly Hillyard, Ryan Westley, Jade Kettlewell

Abstract

Background: There are currently 5.7 million informal caregivers in the UK, with many experiencing psychological distress, compromised social functioning, and poor quality of life. Improving the negative impact of caregiving has been a key focus of research in this population. However, there is limited research on the positive experiences of informal caregivers, particularly those caring for traumatic brain injury (TBI) survivors. This study aimed to explore whether informal TBI caregivers have positive experiences resulting from their role and investigate the possibility of post-traumatic growth (PTG). Methods: Mixed-methods study. Quantitative data analysed using descriptive statistics. Qualitative data analysed thematically using the framework approach. Data sets were synthesised and compared for agreement. Online semi-structured interviews were conducted with informal TBI caregivers, alongside a demographic questionnaire and validated PTG measure (PTGI-SF). Results: Ten TBI caregivers recruited (n=10 male). Highest-scoring PTGI-SF domain across participants was ‘personal strength’ (mean=8.3, SD=1.5). Lowest-scoring domain was ‘greater appreciation for life’ (mean=7.1, SD=2.6). Qualitative themes included: 1) deepened personal connections, 2) strengthened spiritual beliefs, 3) personal growth and resilience, 4) transformed life priorities and purpose, 5) improved coping mechanisms and 6) emergence of new opportunities and pathways. Findings revealed how caregivers adapted positively through caregiving experiences. Conclusions: TBI caregivers appeared to experience post-traumatic growth through caring. Future studies should employ mixed-methods to explore PTG in female TBI caregivers, adaptive coping strategies, and the prevalence of occupational burden, facilitating the development of targeted interventions.

IB24019 Accepted 17 February 2025