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

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.

Child and family health-related quality of life and participation outcomes and goals after acquired brain injury: a cross-sectional survey.

OBJECTIVE: To explore longer-term health-related quality of life (HRQoL) and participation outcomes and goals of children and young people (CYP) with acquired brain injuries (ABI) and their families in a region of the UK and the impact of the COVID-19 pandemic. METHODS: Cross-sectional survey of (5-18 CYP) and their parent-carers 12-43 months following ABI. Included measures of HRQoL, participation, family function and parental wellbeing and demographic and free text questions. RESULTS: Ninety-five responses (30% response) were received. 67% of CYP were at risk of impaired HRQoL, 72% had severely impaired participation. 53% of parent-carers reported reduced HRQoL and family functioning, 37% of parent-carers screened positive for anxiety/depression. Relationships exist between CYP participation and HRQoL and parental HRQoL and family functioning. Goals were overwhelmingly activity and participation focused. Participants described the global impact of an ABI on the CYP and family as well as the additional impact of the COVID-19 pandemic on CYP and family wellbeing. CONCLUSION: ABI significantly impacts CYP participation and both CYP and parent-carer wellbeing in the long-term, potentially further impacted by the COVID-19 pandemic. Rehabilitation interventions should address both participation and the psychological wellbeing of CYP with ABI and their parent-carers.

Outcomes for children with acquired brain injury (ABI) admitted to acute neurorehabilitation.

AIM: To evaluate an innovative paediatric neurorehabilitation model in relation to improving quality of neurorehabilitation and reducing length of stay (LOS) for children with acquired brain injury. METHOD: A process evaluation approach was conducted in line with Medical Research Council evaluation of complex interventions guidance. Analysis was conducted on routinely collected patient data from 2017 to 2018, including LOS and family feedback. Descriptive and inferential statistics were used for quantitative analysis and qualitative data was analysed thematically. RESULTS: Outcomes for 70 children (0-16y, median age 5y, IQR 1-11y, 46 males, 24 females) referred to the service indicated improved function and reduced complexity of need. The mean LOS was 10.6 days compared to baseline mean LOS of 41 days (2011-2012). High satisfaction from the families was recorded; however, ongoing needs and service gaps regarding long-term support were identified. INTERPRETATION: This service model is effective in delivering quality paediatric neurorehabilitation, demonstrating a sustained impact on LOS, and positive patient outcome data and family feedback for this group of patients. What this paper adds Investment in early intensive neurorehabilitation and supported discharge impacts length of stay (LOS) for children with acquired brain injury. Early intensive neurorehabilitation and supported discharge is effective. This is demonstrated by a sustained reduction in LOS, positive patient outcomes, and family feedback.

Exploring participation after paediatric acquired brain injury.

This study aimed to explore the levels of participation in a UK sample of children and young people (CYP) with an acquired brain injury (ABI) at home, school and in the community through a cross-sectional study. The Child and Family Follow-Up Survey was distributed to parents/carers of 134 CYP with ABI (CYP-ABI) who received neuro-rehabilitation from 2014 to 2016. Access and recruitment were problematic resulting in a low response rate (4%). Widespread restrictions in participation were reported by four of the five respondents with community-structured events/activities and educational activities being the most restricted. Factors impacting on participation were cognitive-based and movement skills, family stress and lack of support/encouragement in the community. Study results provide information pertaining to the feasibility of undertaking research with this population while also highlighting the restrictions to participation experienced by CYP-ABI more than two years after injury.

A scoping review of the needs of children and young people with acquired brain injuries and their families.

Understanding the needs of children and young people (CYP) with acquired brain injuries (ABI) is essential in delivering pathways of care and providing effective rehabilitation. Aim: To identify relevant literature and key themes relating to the nature and extent of needs (met, unmet or unrecognized) of CYP with ABI and their families. Method: Scoping review. Sixteen electronic bibliographic databases were searched using terms relating to children, brain injury and need. Papers were screened against eligibility criteria by two independent reviewers. No date limits were applied. Data were extracted by the lead author regarding the needs of CYP with ABI and their families and thematic analysis conducted to identify the key themes. Methodological quality was not assessed. Results: A total of 28 articles were identified including three systematic reviews, one scoping review, two practice recommendation articles, and 22 original research studies. Participants included CYP with ABI, parents, siblings, and professionals. Four key themes were identified; CYP-related impairment needs, support needs, return to school and long-term aftercare. Conclusion: CYP with ABI and their families report extensive needs, many of which are often unmet or unrecognized by those supporting the CYP. Needs transcend the health, social care, and education domains.

Early discharge and rehabilitation in paediatric acquired brain and neurological injury: a transferable model.

Children and young people who require rehabilitation following sustaining an acquired brain injury often experience long lengths of stay (LOS) and potentially poorer recovery outcomes due to limited access to therapy and little proactive discharge planning. After stakeholder enquiry we launched a new team and pathway with a primary aim to reduce LOS. The secondary aims were to pilot an outreach model, reduce cost and improve patient and family satisfaction. We achieved a significantly improved change in quality care with a financial gain and increased patient and family satisfaction.

Goals and outcomes for non ambulant children receiving continuous infusion of intrathecal baclofen.

AIM: To evaluate the success of goals and compare these to actual outcomes in severely disabled children receiving continuous intrathecal baclofen [ITB]. METHOD: 37 non ambulant children with severe spasticity were assessed just before implantation of a pump for ITB, and 9 and 18 months afterwards. Three key goals were chosen for treatment by the family and therapist. These were reviewed at the assessments, together with caregivers' views of the outcome of treatment in 14 different aspects. At the first and last assessment, the degree of deformity of the hips and spine were reviewed, and Orthopaedic Surgeons were also asked to predict what surgery would be needed in the next 2 years. RESULTS: The most common successful outcomes were ease of nursing care, better sitting, spasm reduction, more relaxed/better mood, and improved sleep. This was reflected in the goals selected which were therefore realistic for this treatment. All 3 pre-set goals were achieved by 80% of children. Deformities of the hip and spine continued to occur. The predicted number of orthopaedic operations before and after ITB remained unchanged. INTERPRETATION: ITB is a major treatment for children with severe disability and should be undertaken with understanding of what can and cannot be achieved, therefore allowing realistic goals to be set.

Intrathecal baclofen in the management of spasticity due to cerebral palsy.

Intrathecal baclofen is a cornerstone in the treatment of spasticity in children. However, further research is required to set criteria for treatment. This paper offers insight into the national act on baclofen and the experience at the Nottingham University Hospital.