Children's, parents', and teachers' experiences of the feasibility of a telerehabilitation intervention for children with acquired brain injury in the chronic phase - a qualitative study of acceptability and participation in the Child In Context Intervention (CICI).

BACKGROUND: This is a qualitative feasibility study of the Child in Context Intervention (CICI). The CICI is an individualized, goal-oriented and home-based tele-rehabilitation intervention which targets everyday functioning of children (6-16 years) with acquired brain injury in the chronic stage, and their families, one year or more after insult, who have ongoing challenges (physical, cognitive, behavioral, social and/or psychological). The aim of this study is to better understand how children, parents and teachers experienced participation and acceptability; to develop knowledge about the mechanisms of change, and to explore how the CICI was tailored to the context. METHODS: Six families and schools participated in the intervention, which comprised seven tele-rehabilitation sessions in which the child and parent participated, one in-person parent seminar and four digital school meetings. A multidisciplinary team delivered the intervention to 23 participants over a 4- to 5-month period. The intervention involved psychoeducation about targeted acquired brain injury-related problems, such as fatigue, pain, or social challenges. All but one consented to participate in the current digital interview study. The data were analyzed using content analysis. RESULTS: The experience of participation and acceptability varied among the children. Attendance was consistently high; the child participants felt mostly listened to and could influence goal setting and strategies. However, engaging and motivating the child participants proved somewhat challenging. The parents found the CICI rewarding, useful and relevant. However, they had different experiences regarding which intervention component they perceived as most helpful. Some argued in favor of the 'whole intervention', while others highlighted new knowledge, SMART goals or the school collaboration. The teachers found the intervention acceptable and useful but wanted a better meeting plan. They had difficulties in finding time for meetings, emphasized the involvement of school leaders, and appreciated the digital format. CONCLUSIONS: Overall, the intervention was perceived as acceptable, and the participants felt that the various intervention components contributed to improvements. The CICI's flexibility facilitated tailoring to different contexts based on the children's functional level. The digital format saved time and provided flexibility regarding the amount of attendance but limited full participation from children with more severe cognitive impairments. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04186182.

Community-Based Interventions After Acquired Brain Injury-A Systematic Review of Intervention Types and Their Effectiveness.

OBJECTIVES: Comprehensive review of existing types and effectiveness of community-based interventions delivered to adults (mean age 18-65 years) with long-lasting (≥6 months) difficulties following acquired brain injury (ABI). DESIGN: Systematic review of controlled intervention studies published until February 2021. MAIN MEASURES: Systematic searches in databases (MEDLINE, PsycINFO, Database of Abstracts of Reviews of Effects [Cochrane Library], and Cochrane Central Register of Controlled Trials [Cochrane Library]) and inclusion of English peer-reviewed full-text articles; randomized or controlled community-based intervention studies; sample size of 20 or more participants; and 3 or more intervention sessions. Two reviewers independently extracted data for the synthesis and assessed the methodological quality. Data extraction included study characteristics, demographics of participants, content and dose of intervention, outcome measures, and findings. RESULT: The search returned 7386 publications, of which 49 eligible studies were included, revealing a diverse range of community-based interventions and a myriad of outcome measures applied for assessing functional capacities, participation, and quality of life in the chronic phase of ABI. Intervention types encompassed 14 holistic, 23 physical, and 12 specific interventions. A large heterogeneity regarding intervention frequency and intensity was found. Meta-analyses performed on the holistic, physical, and specific interventions did not indicate any significant pooled effects but showed highly variable effects between individuals, both in persons with traumatic and nontraumatic brain injuries. CONCLUSIONS: Because of lack of pooled effects within types of community-based interventions, specific evidence-based recommendations within holistic, physical, and specific interventions designed to mitigate long-lasting ABI problems cannot be made. This review highlights the need for future studies to address methodological issues concerning larger sample size, lack of clear description interventions and comparator, missing reports of effects in change scores, need for consistent use of recommended outcome measures, and investigating the wide variety in intervention responsiveness among participants with ABI. Systematic review registration: PROSPERO (CRD42019124949).

"It gets better. It can´t be worse than what we have been through." Family accounts of the minimally conscious state.

OBJECTIVES: The aim of this qualitative study was to explore family life when a family member is in a chronic minimally conscious state (MCS). Experiences with the health care system were also explored. METHODS: As part of a larger qualitative study of family life after a family member suffers severe physical injury, we conducted a focus group interview with five family members of three patients in a chronic MCS. The participants included three mothers, one father, and one sibling. The length of time since the brain injuries was four, four, and ten years. A thematic analysis was conducted. RESULTS: Three main themes emerged. Each family reflected on the challenges of maintaining family unity. They also revealed how they had dealt with the ambiguity and severity of the situation, including the communication with the health care system. Finally, they described their journeys back toward a normal, everyday family life. CONCLUSIONS: The findings demonstrate challenges faced by family members but also their capacity to withstand and overcome adversity. Clinicians are reminded to maintain a long-term perspective and understand the importance of helping families adjust, maintain hope for a better future, and mitigate their psychological pain.

Cognition and emotional distress in middle-aged and older adults with spina bifida myelomeningocele.

PURPOSE: To investigate cognitive functioning and emotional distress in adults aged 55 to 68 years old with spina bifida myelomeningocele (SBM), both with and without hydrocephalus. A secondary aim was to explore the associations between psychosocial factors in relation to emotional distress. MATERIALS AND METHODS: Cross-sectional study of eleven females and eight males with SBM, five with and twelve without hydrocephalus. Cognitive functioning was investigated with neuropsychological tests and self-report measures. Furthermore, participants completed questionnaires regarding resilience, access to social support, coping, and emotional distress. Descriptive statistics were applied, and Spearman Rho correlation coefficients were used to explore the relationships between psychosocial factors and emotional distress. RESULTS: Eleven exhibited normal cognitive functioning. An observed difference was seen between participants with and without hydrocephalus, where six and five persons reported clinical levels of depression and anxiety, respectively. Positive perceptions of self and future were associated with lower levels of depression and anxiety. CONCLUSION: This study adds important information about cognitive functioning and emotional distress in an understudied population. The results indicated normal cognitive functioning in adults aged 55 to 68 years with SBM without hydrocephalus. Prevalence of emotional distress was comparable with previous studies of younger adults with SBM. There is a need for longitudinal studies investigating cognition and psychological health to fully capture important aspects of the life course of SBM with and without hydrocephalus.

Feasibility and Acceptability of a Complex Telerehabilitation Intervention for Pediatric Acquired Brain Injury: The Child in Context Intervention (CICI).

The current study is a feasibility study of a randomized controlled trial (RCT): the Child in Context Intervention (CICI). The CICI study is an individualized, goal-oriented and home-based intervention conducted mainly through videoconference. It targets children with ongoing challenges (physical, cognitive, behavioral, social and/or psychological) after acquired brain injury (ABI) and their families at least one year post injury. The CICI feasibility study included six children aged 11-16 years with verified ABI-diagnosis, their families and their schools. The aim was to evaluate the feasibility of the intervention components, child and parent perceptions of usefulness and relevance of the intervention as well as the assessment protocol through a priori defined criteria. Overall, the families and therapists rated the intervention as feasible and acceptable, including the videoconference treatment delivery. However, the burden of assessment was too high. The SMART-goal approach was rated as useful, and goal attainment was high. The parents' ratings of acceptability of the intervention were somewhat higher than the children's. In conclusion, the CICI protocol proved feasible and acceptable to families, schools and therapists. The assessment burden was reduced, and adjustments in primary outcomes were made for the definitive RCT.