Development of an intervention to identify and address long-term participation needs of children and young people with acquired brain injuries and their families
What we are doing?
This study aims to identify the longer-term participation needs of children and young people with acquired brain injuries (CYP-ABI) and their families and develop an intervention to address them. The participation needs of CYP-ABI and their families from one geographical region will be explored from multiple perspectives. Using mixed methods (survey, interviews, focus groups) evidence of the participation and quality of life outcomes and needs will be gathered and facilitators and barriers to participation identified. An intervention logic model aimed at identifying and addressing needs will be developed through co-production with families and stakeholders.
Why we are doing it?
CYP-ABI are known to experience physical, cognitive, emotional and behavioural sequelae which can be long-lasting or become more evident months and years after the even as developmental, education and social demands increase. Participation in activities at home, school and in the community is known to be restricted in CYP-ABI, however, little UK research has been completed exploring this or interventions to address it.
What the benefits will be and to whom?
This study will add to the evidence base regarding participation and quality of life outcomes and needs for CYP-ABI and their families. The development of an intervention aimed at addressing these needs will inform future implementation research which will inform clinical practice and directly benefit the CYP and their families.
Who we are working with?
CYP-ABI and their parents have been involved in providing PPI support to the study, have participated in the survey and interviews and will be involved in the co-production of the intervention. Healthcare, education and social care professionals have participated in the focus group element and there has been close liaison with the BRILL team who provide rehabilitation and ongoing support for all CYP admitted to Nottingham Children’s Hospital with an ABI.
Contact
Rachel Keetley, ARC/UoN PhD Student, Division of Rehabilitation, Ageing and Wellbeing, School of Medicine, University of Nottingham, Rachel.keetley@nottingham.ac.uk.