Investigating the acceptability of co-produced interventions for parents/carers of children with Acquired Brain Injury (ABI)

Spencer, Debra (2025) Investigating the acceptability of co-produced interventions for parents/carers of children with Acquired Brain Injury (ABI). Doctoral thesis, University of East Anglia.

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Abstract

Acquired brain injury (ABI) in children and young people (CYP) can lead to complex, long-term challenges across emotional, cognitive, physical, and social domains. These changes often have a profound impact on family life, with parents/carers taking on extensive caregiving and advocacy roles. Despite their central involvement, parents’/carers’ perspectives are frequently underrepresented in the design of interventions aimed at supporting CYP with ABI and their families.

This thesis portfolio explores how creative, participatory approaches can support parents/carers following ABI. It comprises a systematic review and an empirical study, designed and conducted in parallel, alongside a bridging chapter and extended reflections. The portfolio is grounded in a commitment to family-centred care, collaborative approaches, and engaging meaningfully with lived experience.

The systematic review uses thematic synthesis to examine qualitative and mixed-methods studies exploring parents’/carers’ experiences of interventions following paediatric ABI. It identifies key features parents/carers value – such as timely support, emotional connection, and practical strategies – and highlights the need for more inclusive, co-produced approaches.

The empirical study investigates how parents experienced engaging with a creative, materials-based storytelling approach. Using reflexive thematic analysis, it explores how parents related to the process, including what supported or constrained their participation. The analysis highlights emotional, relational, and identity-related aspects of engagement, offering insight into what made the approach feel safe, meaningful, or challenging to parents.

Taken as a whole, the portfolio contributes to the growing evidence base for participatory and emotionally responsive approaches in paediatric neurorehabilitation. It offers practical and theoretical insights into how support for families can be made more inclusive, flexible, and grounded in what matters to parents/carers themselves.

Item Type:	Thesis (Doctoral)
Faculty \ School:	Faculty of Medicine and Health Sciences > Norwich Medical School
Depositing User:	Chris White
Date Deposited:	12 Jan 2026 09:12
Last Modified:	12 Jan 2026 09:12
URI:	https://ueaeprints.uea.ac.uk/id/eprint/101496
DOI:

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