Understanding barriers and facilitators to long-term participation needs in children and young people following acquired brain injuries: a qualitative multi-stakeholder study

Rachel Keetley; Joseph C. Manning; Jane Williams; Emily Bennett; Meri Westlake; Kathryn Radford

doi:10.1071/IB23100

RESEARCH ARTICLE (Open Access)

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Understanding barriers and facilitators to long-term participation needs in children and young people following acquired brain injuries: a qualitative multi-stakeholder study

Rachel Keetley

^A ^B ^* , Joseph C. Manning ^B ^C , Jane Williams ^B , Emily Bennett ^B , Meri Westlake ^A and Kathryn Radford ^A

+ Author Affiliations

- Author Affiliations

^A Centre for Rehabilitation and Ageing Research, School of Medicine, University of Nottingham, Nottingham, NG7 2HA, UK.

^B Nottingham Children’s Hospital, Nottingham University Hospitals NHS Trust, Queen’s Medical Centre, Nottingham, NG7 2UH, UK.

^C School of Healthcare, University of Leicester, Leicester, UK.

^* Correspondence to: rachel.keetley@nottingham.ac.uk

Handling Editor: Dana Wong

Brain Impairment 25, IB23100 https://doi.org/10.1071/IB23100

Submitted: 8 September 2023 Accepted: 22 January 2024 Published: 15 February 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of the Australasian Society for the Study of Brain Impairment. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Background

This study focused on exploring the longer-term participation needs of children and young people with acquired brain injury (CYP-ABI) and their families in one region of the UK and identifying the barriers and facilitators of their participation and well-being to inform the development of a behavioural change intervention for clinical implementation.

Methods

Qualitative interviews were conducted with CYP-ABI and parents. Focus groups were created with health, education, care and charity stakeholders. The International Classification of Functioning, Disability and Health (ICF) and the Behaviour Change Wheel (BCW) were used to map needs, barriers and facilitators.

Results

A total of 10 CYP/parent dyads (n = 20) and 17 health, education, care and charity stakeholders were included in this study. Unmet participation needs were mapped to the ICF and barriers/facilitators to the BCW. Significant unmet needs impacting CYP-ABI participation and family well-being were found. Barriers spanned ‘Capability’, ‘Opportunity’ and ‘Motivation’, the greatest being knowledge, skills, social influences, environmental context and resources, social identity and emotion. Facilitators included increasing awareness and understanding, supporting parents, long-term access to specialist assessment and rehabilitation, peer support and integrated collaborative pathways.

Conclusion

The long-term impact of ABI on CYP and families’ participation and well-being were significant, with barriers spanning every sector and level of society. Implementation of collaborative, cross-sector (education, health and social care) accessible and family-centred care pathways is needed to meet the long-term needs of CYP-ABI and their families, ensuring equity of access. Multi-modal, family-centred, needs-led, theory-based interventions should be co-developed with CYP, families and stakeholders to improve the health and well-being outcomes and the lives of CYP-ABI and their families.

Keywords: acquired brain injury, barriers, children, facilitators, family, implementation, intervention development, participation, well-being, young people.

References

Alderwick H, Hutchings A, Briggs A, Mays N (2021) The impacts of collaboration between local health care and non-health care organizations and factors shaping how they work: a systematic review of reviews. BMC Public Health 21(1), 753.
| Crossref | Google Scholar | PubMed |

Allonsius F, de Kloet A, Bedell G, van Markus-Doornbosch F, Rosema S, Meesters J, et al. (2021) Participation restrictions among children and young adults with acquired brain injury in a paediatric outpatient rehabilitation cohort: the patients’ and parents’ perspective. International Journal of Environmental Research and Public Health 18, 1625.
| Crossref | Google Scholar | PubMed |

Anaby D, Law M, Hanna S, Dematteo C (2012) Predictors of change in participation rates following acquired brain injury: results of a longitudinal study. Developmental Medicine and Child Neurology 54(4), 339-346.
| Crossref | Google Scholar | PubMed |

Anaby D, Khetani M, Piskur B, van der Holst M, Bedell G, Schakel F, et al. (2021) Towards a paradigm shift in paediatric rehabilitation: accelerating the uptake of evidence on participation into routine clinical practice. Disability and Rehabilitation 44, 1746-1757.
| Crossref | Google Scholar | PubMed |

Atkins L, Francis J, Islam R, O’Connor D, Patey A, Ivers N, et al. (2017) A guide to using the Theoretical Domains Framework of behaviour change to investigate implementation problems. Implementation Science 12, 77.
| Crossref | Google Scholar | PubMed |

Batorowicz B, King G, Mishra L, Missiuna C (2016) An integrated model of social environment and social context for paediatric rehabilitation. Disability and Rehabilitation 38(12), 1204-1215.
| Crossref | Google Scholar | PubMed |

Botchway E, Knight S, Muscara F, Greenham M, D’Cruz K, Bonyhady B, et al. (2022) Rehabilitation models of care for children and youth with traumatic brain and/or spinal cord injuries: a focus on family-centred care, psychosocial wellbeing, and transitions. Neuropsychological Rehabilitation 32(4), 537-559.
| Crossref | Google Scholar | PubMed |

Botchway-Commey E, Muscara F, Greenham M, D’Cruz K, Bonyhady B, Anderson V, et al. (2023) Rehabilitation models of care for children and youth with traumatic brain and/or spinal cord injuries: a focus on service structure, service organisation, and barriers and facilitators of rehabilitation service provision. Neuropsychological Rehabilitation 33, 1697-1727.
| Crossref | Google Scholar | PubMed |

Crouchman M, Rossiter L, Colaco T, Forsyth R (2001) A practical outcome scale for paediatric head injury. Archives of Disease in Childhood 84, 120-124.
| Crossref | Google Scholar | PubMed |

de Kloet AJ, Gijzen R, Braga LW, Meesters J, Schoones JW, Vliet Vlieland T (2015) Determinants of participation of youth with acquired brain injury: a systematic review. Brain Injury 29(10), 1135-1145.
| Crossref | Google Scholar | PubMed |

Dewan MC, Mummareddy N, Wellons III JC, Bonfield CM (2016) Epidemiology of Global Pediatric Traumatic Brain Injury: Qualitative Review. World Neurosurgery 91, 497-509.
| Crossref | Google Scholar | PubMed |

Diener ML, Kirby AV, Sumsion F, Canary HE, Green MM (2022) Community reintegration needs following paediatric brain injury: perspectives of caregivers and service providers. Disability and Rehabilitation 44(19), 5592-5602.
| Crossref | Google Scholar | PubMed |

Fisher RJ, Russell L, Riley-Bennett F, Cameron T, Walker M, Sackley C (2023) Barriers and facilitators in providing home-based rehabilitation for stroke survivors with severe disability in the UK: an online focus group study with multidisciplinary rehabilitation teams. BMJ Open 13, e071217.
| Crossref | Google Scholar | PubMed |

Gan C, Gargaro J, Kreutzer JS, Boschen KA, Wright FV (2010) Development and preliminary evaluation of a structured family system intervention for adolescents with brain injury and their families. Brain Injury 24(4), 651-663.
| Crossref | Google Scholar | PubMed |

Gingrich N, Bosancich J, Schmidt J, Sakakibara BM (2023) Capability, opportunity, motivation, and social participation after stroke. Topics in Stroke Rehabilitation 30(5), 423-435.
| Crossref | Google Scholar | PubMed |

Glang AE, McCart M, Slocumb J, Gau JM, Davies SC, Gomez D, Beck L (2019) Preliminary Efficacy of Online Traumatic Brain Injury Professional Development for Educators: An Exploratory Randomized Clinical Trial. Journal of Head Trauma Rehabilitation 34(2), 77-86.
| Crossref | Google Scholar | PubMed |

Guyatt S, Ferguson M, Beckmann M, Wilkinson SA (2021) Using the Consolidated Framework for Implementation Research to design and implement a perinatal education program in a large maternity hospital. BMC Health Services Research 21, 1077.
| Crossref | Google Scholar | PubMed |

Hayes L, Shaw S, Pearce MS, Forsyth RJ (2017) Requirements for and current provision of rehabilitation services for children after severe acquired brain injury in the UK: a population-based study. Archives of Disease in Childhood 102, 813-820.
| Crossref | Google Scholar | PubMed |

Holloway M, Orr D, Clark-Wilson J (2019) Experiences of challenges and support among family members of people with acquired brain injury: a qualitative study in the UK. Brain Injury 33(4), 401-411.
| Crossref | Google Scholar | PubMed |

Holthe IL, Rohrer-Baumgartner N, Svendsen EJ, Hauger SL, Forslund MV, Borgen IMH, et al. (2022) Feasibility and Acceptability of a Complex Telerehabilitation Intervention for Pediatric Acquired Brain Injury: The Child in Context Intervention (CICI). Journal of Clinical Medicine 11(9), 2564.
| Crossref | Google Scholar | PubMed |

Hudon C, Chouinard MC, Pluye P, El Sherif R, Bush PL, Rihoux B, et al. (2019) Characteristics of Case Management in Primary Care Associated With Positive Outcomes for Frequent Users of Health Care: A Systematic Review. Annals of Family Medicine 17(5), 448-458.
| Crossref | Google Scholar | PubMed |

Imms C, Green D (2020) ‘Participation: Optimising Outcomes in Childhood-Onset Neurodisability’, 1 edn. (Mac Keith Press: London, UK)

Keetley R, Radford K, Manning JC (2019) A scoping review of the needs of children and young people with acquired brain injuries and their families. Brain Injury 33(9), 1117-1128.
| Crossref | Google Scholar | PubMed |

Keetley R, Manning J, Williams J, Stewart I, Radford K (2024) Child and family health-related quality of life and participation outcomes and goals after acquired brain injury: a cross-sectional survey. Brain Injury
| Crossref | Google Scholar |

Kettlewell J, Lindley R, Radford K, Patel P, Bridger K, Kellezi B, et al. (2021) Factors Affecting the Delivery and Acceptability of the ROWTATE Telehealth Vocational Rehabilitation Intervention for Traumatic Injury Survivors: A Mixed-Methods Study. International Journal of Environmental Research and Public Health 18(18), 9744.
| Crossref | Google Scholar | PubMed |

King G, Imms C, Stewart D, Freeman M, Nguyen T (2018) A transactional framework for pediatric rehabilitation: shifting the focus to situated contexts, transactional processes, and adaptive developmental outcomes. Disability and Rehabilitation 40(15), 1829-1841.
| Crossref | Google Scholar | PubMed |

Lawton R, Heyhoe J, Louch G, Ingleson E, Glidewell L, Willis TA, et al. (2016) Using the Theoretical Domains Framework (TDF) to understand adherence to multiple evidence-based indicators in primary care: a qualitative study. Implementation Science 11, 113.
| Crossref | Google Scholar | PubMed |

Lindsay S, Hartman LR, Reed N, Gan C, Thomson N, Solomon B (2015) A Systematic Review of Hospital-to-School Reintegration Interventions for Children and Youth with Acquired Brain Injury. PloS One 10(4), e0124679.
| Crossref | Google Scholar | PubMed |

Lindsay S, Patel S, Ragunathan S, Fuentes K (2023) Ableism among children and youth with acquired brain injuries and their caregivers: a systematic review. Brain Injury 37, 714-725.
| Crossref | Google Scholar | PubMed |

McKinlay A, Linden M, DePompei R, Jonsson CA, Anderson V, Braga L, et al. (2016) Service provision for children and young people with acquired brain injury: practice recommendations. Brain Injury 30(13–14), 1656-1664.
| Crossref | Google Scholar | PubMed |

McLaughlin J, Coleman-Fountain E (2014) The unfinished body: the medical and social reshaping of disabled young bodies. Social Science & Medicine 120, 76-84.
| Crossref | Google Scholar | PubMed |

Michie S, Atkins L, West R (2014) ‘The Behaviour Change Wheel: a guide to designing interventions.’ (Silverback Publishing: UK)

Ministry of Housing Communities and Local Government (2019) National statistics: English indices of deprivation 2019. Available at https://www.gov.uk/government/statistics/english-indices-of-deprivation-2019 [Accessed 11 February 2021]

Molteni E, Ranzini M, Beretta E, Modat M, Strazzer S (2021) Individualised Prognostic Prediction of the Long-Term Functional Trajectory in Pediatric Acquired Brain Injury. Journal of Personalized Medicine 11, 675.
| Crossref | Google Scholar | PubMed |

Murtagh EM, Barnes AT, McMullen J, Morgan PJ (2018) Mothers and teenage daughters walking to health: using the behaviour change wheel to develop an intervention to improve adolescent girls’ physical activity. Public Health 158, 37-46.
| Crossref | Google Scholar | PubMed |

NHS Digital (2023) ‘Cancer Survival in England.’ (NHS Digital) Available at https://digital.nhs.uk/data-and-information/publications/statistical/cancer-survival-in-england/cancers-diagnosed-2016-to-2020-followed-up-to-2021 [Accessed 05 September 2023]

NHS England (2013) 2013.2014 NHS Standard Contract for Paediatric Neurosciences: Neurorehabilitation Section B Part 1 – Service Specifications. Available at https://www.england.nhs.uk/wp‐content/uploads/2018/09/Paediatric‐Neurorehabilitation.pdf

Nilsen P (2015) Making sense of implementation theories, models and frameworks. Implementation Science 10, 53.
| Crossref | Google Scholar | PubMed |

Phillippi J, Lauderdale J (2018) A Guide to Field Notes for Qualitative Research: Context and Conversation. Qualitative Health Research 28(3), 381-388.
| Crossref | Google Scholar | PubMed |

Resch C, van Kruijsbergen M, Ketelaar M, Turks P, Adair B, Imms C, et al., van Heugten C (2020) Assessing participation of children with acquired brain injury and cerebral palsy: a systematic review of measurement properties. Developmental Medicine & Child Neurology 62, 434-444.
| Crossref | Google Scholar | PubMed |

Ritchie J, Lewis J, McNaughton Nicholls C, Ormaston R (2014) ‘Qualitative Research: a guide for social science students and researchers’, 2nd edn. (SAGE Publications)

Rohrer-Baumgarter N, Holthe I, Svendsen E, Røe C, Egeland J, Borgen I, et al. (2022) Rehabilitation for children with chronic acquired brain injury in the Child in Context Intervention (CICI) study: study protocol for a randomised controlled trial. Trials 23, 169.
| Crossref | Google Scholar |

Saldaña J (2016) ‘The Coding Manual for Qualitative Researchers’, 3rd edn. (SAGE Publications)

Sariaslan A, Sharp DJD, D’Onofrio B, Larsson H, Fazel S (2016) Long-Term Outcomes Associated with Traumatic Brain Injury in Childhood and Adolescence: A Nationwide Swedish Cohort Study of a Wide Range of Medical and Social Outcomes. PLOS Medicine 13, 1002103.
| Crossref | Google Scholar | PubMed |

Skivington K, Matthews L, Simpson SA, Craig P, Baird J, Blazeby JM, Moore L (2021) A new framework for developing and evaluating complex interventions: update of Medical Research Council guidance. BMJ 374, n2061.
| Crossref | Google Scholar | PubMed |

Truelove S, Vanderloo LM, Tucker P, Di Sebastiano KM, Faulkner G (2020) The use of the behaviour change wheel in the development of ParticipACTION’s physical activity app. Preventive Medicine Reports 20, 101224.
| Crossref | Google Scholar | PubMed |

van Markus-Doornbosch F, van der Holst M, de Kloet AJ, Vliet Vlieland T, Meesters J (2020) Fatigue, participation and quality of life in adolescents and young adults with acquired brain injury in an outpatient rehabilitation cohort. Developmental Neurorehabilitation 23(5), 328-335.
| Crossref | Google Scholar | PubMed |

Vasileiou K, Barnett J, Thorpe S, Young T (2018) Characterising and justifying sample size sufficiency in interview-based studies: systematic analysis of qualitative health research over a 15-year period. BMC Medical Research Methodology 18(1), 148.
| Crossref | Google Scholar | PubMed |

Wade DT (1992) Measurement in neurological rehabilitation. Current Opinion in Neurology and Neurosurgery 5(5), 682-686.
| Google Scholar | PubMed |

Wales L, Davis K, Kelly G, Lynott H (2021) Long term participation outcomes for severe acquired brain injury in childhood – an expanded scoping review. Developmental Neurorehabilitation 24(6), 379-387.
| Crossref | Google Scholar | PubMed |

World Health Organisation (2002) ‘Towards a Common Language for Functioning, Disability and Health – ICF.’ (WHO: Geneva, Switzerland) Available at https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health