Keetley, Rachel
(2024)
Development of an intervention to identify and address long-term participation and well-being needs of children and young people with acquired brain injuries and their families: A mixed methods study.
PhD thesis, University of Nottingham.
Abstract
Background: Acquired Brain Injury (ABI) is recognised as a significant public health issue, being the global leading cause of mortality and morbidity across all age groups. Approximately 40,000 UK children and young people (CYP) sustain an ABI every year from traumatic and non-traumatic causes. The physical, cognitive, emotional, and behavioural sequelae of ABI may continue to become evident months or years after the event, as childhood development progresses, and education and social demands increase. These can have a significant impact on the participation and well-being of CYP and their families.
Aim: To explore the long-term participation and well-being needs of UK CYP with ABI (5-18 years) and their families and develop a theoretically underpinned intervention to identify and address them.
Methods: A complex intervention development study was conducted using a theory-driven, evidence-informed approach, combining the Behaviour Change Wheel (COM-B and Theoretical Domains Framework (TDF)) and the Person-Based Approach (PBA). A scoping review of the literature regarding the long-term needs of CYP with ABI and their families was conducted to informed the study design. Study One was a mixed-methods study including a quantitative cross-sectional survey and multi-stakeholder qualitative study, in one geographical region of the UK. The survey included participation and health-related quality of life (HRQoL) outcomes and goals of CYP with ABI and their families. Standardised measures were used: Child and Adolescent Scale of Participation, Pediatric Quality of Life Inventory 4.0 Generic, Pediatric Quality of Life Inventory – Family Impact Module and Patient Health Questionnaire for Anxiety and Depression.
Interviews were conducted with CYP with ABI and parents, and focus groups with health, education, social care and charity stakeholders. Findings were analysed using the framework method using the ICF and COM-B/TDF. Study Two included synthesis of the scoping review and mixed methods study findings, a co-design workshop with CYP with ABI, parent, health education, social care and charity stakeholders, and theoretical modelling of the intervention.
Results: The scoping review identified four key themes; CYP-related impairment needs, support needs, return to school and long-term aftercare. Survey responses (n=95) demonstrated 72% of CYP had severely impaired participation and 67% had increased risk of impaired HRQoL. Reduced HRQoL and family functioning was reported by 53% of parents and 37% had an increased risk of anxiety/depression. Significant unmet participation and well-being needs were reported in 10 CYP/parent dyad interviews and focus groups with 17 health, education, care, and charity stakeholders. Barriers spanned the COM-B and TDF domains; the greatest being knowledge, skills, social influences, environmental context and resources, social identity, and emotion. Facilitators included increasing awareness and understanding, parent support, long-term access to specialist assessment and rehabilitation, and integrated collaborative pathways. The co-design workshop participants (n=17) identified potential solutions and intervention ingredients. These included the need for education for families and schools regarding long-term impact of ABI, and longer-term practical and emotional support for families. Findings from the workshop were analysed using the framework method and synthesised with previous findings using the BCW. The BCW and PBA guided the theoretical modelling of the intervention, ‘ABI-Participate’. This included identifying guiding principles and key design objectives that were mapped to intervention functions and behaviour change techniques to produce a logic model.
Conclusion: This research has provided an in-depth understanding of the substantial unmet participation and well-being needs of CYP with ABI and their families, and the barriers and facilitators they, and stakeholders, face in accessing support and rehabilitation. A systematic intervention development process using a theory-, evidence-, and person-based approach resulted in a logic model for ‘ABI-Participate’, which aims to address the unmet needs and barriers of CYP with ABI and their families. Further research is now required to refine this multi-faceted intervention, specify the components and develop the care pathway to support its effective implementation prior to feasibility testing.
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