Young People's Experiences of Returning to Physical Leisure Activities after a Severe Acquired Brain Injury.

AIMS: To understand the experiences of young people returning to physical leisure activities following a severe acquired brain injury (ABI). METHODS: Seven young people (5 male; 14-19 years) participated. Semi-structured interviews were conducted with young people who sustained a severe ABI 1-3 years prior to the study. Data thematically analyzed using Braun and Clarke's six-phase approach. RESULTS: Three main themes were created: My changing sense of identity around physical activity after my brain injury (how important physical activity was to them, how participation changed following their ABI); Why I take part in physical leisure activities (fun, friendships, help with recovery and physical and emotional health); and I can't do it alone (need for trusted adults to practically and emotionally support them to try and activities and continue to participate). DISCUSSION: Returning to physical leisure activities after ABI was important to young people, especially if they were active prior to their injury. However, participating with changed abilities was practically and emotionally challenging. Services need a multidisciplinary approach to ensure young people are supported with psychological processes of loss, adjustment, identity and resilience in addition to the practical help necessary to enable meaningful participation in activities they consider fun.

Conceptual framework of the recovery of self-awareness following a severe traumatic brain injury in childhood.

INTRODUCTION: Self-awareness following a TBI in childhood is an under-represented area of research in the pediatric literature. The issue is well described in the adult literature but the theories and practice recommendations in this body of literature are not easily transferable to pediatric neurorehabilitation. Children and young people sustain a TBI at a time when the brain is yet to fully develop. This paper outlines a conceptual framework that incorporates and adapts knowledge from the adult and pediatric literature of self-awareness. METHODS: The content and the structure of the framework is constructed from clinical experience, existing literature and the findings from an empirical study. FINDINGS: A conceptual framework is presented with 3 key components: self-awareness knowledge, self-awareness in context, self-awareness for the future. The components are explained and the relationship between the concepts is highlighted. CONCLUSION: The framework provides a common language for clinicians and academics to explore the concepts that impact self-awareness during recovery. The framework captures the dynamic developmental and recovery trajectory of self-awareness following a TBI in childhood.

Rehabilitation after paediatric acquired brain injury: Longitudinal change in content and effect on recovery.

AIM: To describe cross-sectional and longitudinal variation in neurorehabilitation content provided to young people after severe paediatric acquired brain injury (pABI) and to relate this to observed functional recovery. METHOD: This was an observational study in a cohort of admissions to a residential neurorehabilitation centre. Recovery was described using the Pediatric Evaluation of Disability - Computer Adaptive Testing instrument. Rehabilitation content was measured using the recently described Paediatric Rehabilitation Ingredients Measure (PRISM) and examined using multidimensional scaling. RESULTS: The PRISM reveals wide variation in rehabilitation content between and during admissions primarily reflecting proportions of child active practice, child emotional support, and other management of body structure and function. Rehabilitation content is predicted by pre-admission recovery, suggesting therapist decisions in designing rehabilitation programmes are shaped by their initial expectations of recovery. However, significant correlations persist between plausibly-related aspects of delivered therapy and observed post-admission recovery after adjusting for such effects. INTERPRETATION: The PRISM approach to the analysis of rehabilitation content shows promise in that it demonstrates significant correlations between plausibly-related aspects of delivered therapy and observed recovery that have been hard to identify with other approaches. However, rigorous, causal analysis will be required to truly understand the contributions of rehabilitation to recovery after pABI. WHAT THIS PAPER ADDS: Rehabilitation content varies widely between, and during, admissions for neurorehabilitation after paediatric acquire brain injury. Strong correlations are seen between plausibly-related aspects of rehabilitation content and observed recovery, though careful interpretation is necessary.

Rehabilitation in practice: improving delivery of upper limb rehabilitation for children and young people with acquired brain injuries through the development and implementation of a clinical pathway.

PURPOSE: Decision making regarding upper limb assessment and management of children and young people (CYP) with acquired brain injury (ABI) is complex. This project aimed to standardise and improve upper limb provision in one residential rehabilitation unit for CYP with ABI. METHODS: Plan-do-study-act (PDSA) methodology was used. Available evidence was synthesised and recommendations for assessment and intervention of CYP who present at different functional levels were made. A multi-modal knowledge translation process was used for pathway implementation, with regular review and updates in each PDSA cycle. Audit and staff survey at one year and two years post implementation were conducted. RESULTS: A clinical pathway consisting of an assessment decision tree, intervention matrix and evidence based summaries was developed. Audit at one year demonstrated 70% of CYP had an appropriate assessment form, which increased to 82% at two years. Staff survey showed increased knowledge and use of the pathway, and decreased perceived training needs between years one and two. CONCLUSIONS: Use of an upper limb pathway can standardise care in line with best available evidence, and increase staff confidence in this complex rehabilitation area. Several years of development and implementation were required to embed its use in practice.Implications for rehabilitationUpper limb rehabilitation for CYP with ABI is complex, with no "one size fits all" assessment or intervention techniques available.Developing a pathway in which the evidence for assessment and management interventions for CYP of different functional levels, and recommendations for clinical practice can improve the consistency of assessment and intervention, and staff confidence with upper limb management.A multimodal strategy for implementation planned from the outset of pathway development can facilitate the translation of the pathway into routine clinical practice.

Demonstration of functional rehabilitation treatment effects in children and young people after severe acquired brain injury.

PURPOSE: To examine relationships between functional outcomes after pediatric acquired brain injury (ABI) and measures of rehabilitation dose. METHODS: An observational study of children receiving residential neurorehabilitation after severe ABI. RESULTS: Basic total rehabilitation dose shows a paradoxical inverse relationship to global outcome. This is due to confounding by both initial injury severity and length of stay, and variation in treatment content for a given total rehabilitation dose. Content-aware rehabilitation dose measures show robust positive correlations between fractions of rehabilitation treatment received and plausibly related aspects of outcome: specifically, between rates of recovery of gross motor function and the fraction of rehabilitation effort directed to active practice and motor learning. This relationship was robust to adjustment for therapists' expectations of recovery. CONCLUSION: Content-aware measures of rehabilitation dose are robustly causally related to pertinent aspects of outcome. These findings are step toward a goal of comparative effectiveness research in pediatric neurorehabilitation.

Long Term Participation Outcomes for Severe Acquired Brain Injury in Childhood - An Expanded Scoping Review.

Introduction: Participation in childhood Acquired Brain Injury (ABI) lacks clarity in definition and determinants influencing long-term outcome. This paper aims to investigate and identify the factors that impact long-term outcomes, and prioritize the measures that focus on and endorse children, young people, and their family's concept of participation.Methods: A scoping review was carried out using research literature and non-research data sources including data review, child/family interviews, and expert consultation.Results: Six peer-reviewed papers sourced. Families reported that participation for the whole family is important and recovers in a non-linear manner after rehabilitation. Experts agreed the priority and complexity of participation following severe ABI.Conclusion: Review highlights that regaining participation through the attendance at, and the engagement in life situations, for children after severe ABI, is important, complex and is affected by many factors.Future research requires a flexible approach to understand participation and inform future targeted interventions.

First stage international validation of the pediatric family needs questionnaire (FNQ-P).

OBJECTIVES: 1. Evaluate reliability and construct validity of the newly-developed Family Needs Questionnaire - Pediatric (FNQ-P), a 40-item measure assessing the extent to which family's needs are met after a child has an acquired brain injury (ABI). 2. Explore the impact of selected child characteristics on FNQ-P scores. RESEARCH DESIGN: MEASUREMENT STUDY: Methods: Parents/caregivers of children with ABI (2-18 years) were recruited across four sites (Canada, Sweden, Lithuania, Australia) for FNQ-P test-retest evaluation. These sites plus a fifth (United Kingdom) completed construct validity evaluation with the Family Burden of Injury Inventory and Strengths and Difficulties Questionnaire. Associations between FNQ-P score and age, injury severity, time post-injury and site were evaluated via stepwise regression. RESULTS: FNQ-P mean scores (n=61) were 64.1% (SD 22.3) and 58.8% (SD 22.6) on test and retest, respectively. Test-retest reliability was good overall (ICC=0.78, 95% CI 0.65-0.86). There was a weak association between FNQ-P and FBII (r=-0.23, P=0.049, n=71), but no association between FNQ-P and SDQ scores (maximum r=0.16, P>0.15). None of the variables studied predicted FNQ-P scores. CONCLUSION: The FNQ-P demonstrated good test-retest reliability. Further validity assessment is recommended. Lack of relationship between FNQ-P and variables studied suggests independence of family needs.

The Information Gap for Children and Young People with Acquired Brain Injury.

Statement of Purpose: This study explored the information requirements of children/youth with an acquired brain injury.Methods: An online survey (n = 16), focus group (n = 5) and in-depth semi-structured interviews (n = 3) elicited the views of 24 children/youth with ABI. A priori thematic coding was used to analyze the data.Results: Five themes emerged: stage and age, school, friendship and peers, delivery methods and information content. The desired information changes over time depending on age and time since the injury. Children/youth want their friends and teachers to access information on brain injury. Children/youth want information delivered through a range of channels, including videos (featuring genuine case studies), apps and board games. Children/youth wanted information specific to their injury, information on brain injury more generally, and practical strategies for overcoming problems.Conclusions: Children/youth with ABI were able to express views about their information needs, which change over time and include a range of channels.

Self-awareness following a traumatic brain injury in childhood: a developmental perspective.

Impaired self-awareness is a common consequence following a brain injury that affects engagement in rehabilitation and results in poor long term functional outcomes. Literature regarding self-awareness following a brain injury in childhood is lacking. The aim of this research study was to understand the self-awareness of deficits from a developmental perspective. METHODS: A multiple case study design with fully integrated mixed methodology (QUAN+QUAL). Fifteen children/young people (CYP) with traumatic brain injury (TBI) (5-17 years; 10 male) were recruited and data were collected from CYP, their parents and teachers. Self-report measures included Strengths and Difficulties Questionnaire and Harter Scales. Interview measures included Self-Understanding Interview and Knowledge Interview for Children. A novel method of analysis compared CYP report to parent/teacher report and to normative children's data. Three exemplars showcase this methodology. RESULTS: Within-case and cross-case analysis identified interrupted development of self-awareness following TBI. CYP ratings differed most from parent/teacher ratings in the social and behavioural domains. In relation to the school/learning and physical domains, CYP ratings differed most from normative children's data. The younger children had greater degree of ratings discrepancy across all domains. Seven key themes were aspirations, beliefs, being different, brain injuries, characteristics, participation, and interpersonal interactions and relationships. CONCLUSION: This study is among the first to describe the complexity of self-awareness across a range of functional domains following a brain injury in childhood. New theoretical and clinical perspectives are presented from understanding the importance of typical development and the child's age at injury.

Paediatric Rehabilitation Ingredients Measure: a new tool for identifying paediatric neurorehabilitation content.

AIM: To develop an instrument (Paediatric Rehabilitation Ingredients Measure [PRISM]) for quantitative estimation of contents of interdisciplinary neurorehabilitation for use in studies of relationships between rehabilitation treatment delivered and severity-adjusted outcomes after acquired brain injury (ABI). METHOD: The measure was developed using an ingredients-mediators-outcomes model consistent with the International Classification of Functioning, Disability and Health, a literature review, and other current initiatives in the development of rehabilitation treatment taxonomies, with item codevelopment in workshops with rehabilitation professionals. Interrater reliability was assessed in inpatient and residential paediatric rehabilitation settings. RESULTS: Although sometimes an initially unfamiliar perspective on rehabilitation practice, PRISM's acceptability amongst professionals was excellent. Internal consistency of scores was sometimes an issue for users unfamiliar with the tool; however, this improved with practice and interrater reliability (assessed by Kendall's W) was good. The tool was felt to have particular value in facilitating interdisciplinary communication and working. Modifications to the design of the tool have improved internal consistency. INTERPRETATION: PRISM supports identification of the 'active ingredients' of an interdisciplinary rehabilitation package and facilitates interdisciplinary communication. It also has potential as a research tool examining relationships between rehabilitation delivered and severity-adjusted outcomes observed after paediatric ABI. WHAT THIS PAPER ADDS: Identifying contribution of rehabilitation to outcomes after acquired brain injury requires quantification of rehabilitation 'dose' and 'content'. Previous approaches to 'parsing' of rehabilitation dose and content may have overemphasized one-to-one sessions with therapists. We present a novel, holistic tool for identification of ingredients of an interdisciplinary rehabilitation package. It supports interdisciplinary communication and has potential as a research tool.