NÅR ULYKKEN RAMMER ET BARN – FORELDREPERSPEKTIVER ETTER EN TRAUMATISK HJERNESKADE

Denne artikkelen undersøker foreldreperspektiver hos foreldretil barn som har blitt rammet av en traumatisk hjerneskade(TBI) og drøfter hva som kan bidra til å utvide mulighetsrommetfor foreldres deltagelse og innflytelse i skolen. Sosial praksisteori,herunder kritisk psykologi, utgjør den teoretiskeanalyserammen. Analysen av foreldreperspektivene og de utfordringerforeldrene opplever, har gjort det mulig å kommenærmere en forståelse av den betydningen TBI har hatt forforeldre og barn. Med denne bakgrunn argumenterer artikkelenfor behovet og muligheten for et utvidet mulighetsrom for foreldredeltagelseog innflytelse i barnets læring. Her framkommerbetydningen av at foreldre og profesjonelle i fellesskap kommertil forståelse av barnets behov, for å understøtte barnets utviklingi ulike kontekster. Artikkelen argumenterer følgelig forat “til tiden – på stedet” kunnskap, som forutsetter en dialogiskprosess mellom kunnskap om diagnosen TBI og praksisbegrunnetog erfaringsbasert viten hos foreldre, barnet, lærere ogøvrig involverte, vil kunne utvide foreldres mulighetsrom fordeltagelse og innflytelse. Artikkelen tilstreber med dette åanalysere utvidelse av mulighetsrom bredere enn spørsmåletom foreldreinnflytelse eller profesjonelles kunnskap alene

Young Peoples’ Selfunderstanding and Agency after an Acquired Brain Injury

Denne artikkelen inngår i et ph.d.-prosjekt som undersøker “Mening og sammenheng i læringsforløpet etter en ervervet hjerneskade”. Den argumenterer for betydningen av både en nevrovitenskaplig og en subjektvitenskaplig tilgang for å forstå de unges handleevne og selvforståelse, med et særlig fokus på sosial fungering etter ervervet hjerneskade. De aller fleste barn og unge i Norge som blir utsatt for en traumatisk hjerneskade, kommer direkte til- bake til skolen fra sykehuset. I ph.d.-prosjektet inngår en deltagelse i 8 skolers praksis, der 8 unge i alderen 13-17 år, alle med følger etter en traumatisk hjerneskade, blir fulgt spesielt. Undersøkelsen består av deltagende observasjon og intervju med de unge, deres foresatte og betydningsfulle profesjonelle i skolen, i tillegg til dokumentanalyse av fore- liggende nevropsykolograpporter, individu- elle opplæringsplaner og halvårsrapporter. I denne artikkelen analyseres handleevne og selvforståelse etter en traumatisk hjerneskade med utgangspunkt i en av de 8 unge, Peter. Analysen viser at fraværet av et “vi” og be- tingelser som begrenser og fastholder Peter i ikke-deltagende posisjoner, utelukker han fra sammenhenger og fellesskap som han ønsker å bli en del av. Artikkelen konkluderer med at det er behov for både en nevrovitenskaplig og en subjektvitenskaplig tilgang for å kunne forstå det dialektiske forholdet mellom den biologiske realiteten av de unges hjerneskade og vanskene slik de kommer til uttrykk i ulike sosiale praksiser i og utenfor skolen. Denne forståelsen blir hevdet å være av stor betyd- ning for at de unge kan utvide sin handleevne og overskride marginale posisjoner etter hjerneskaden.This article is included in a ph.d. project ex- ploring “Meaning and coherence in the course of learning after an acquired brain injury”. It argues the importance of both a neuroscience and a subject science approach in order to understand young people’s agency and self- understanding, with a focus on social func- tioning after an acquired brain injury. Most children and young people in Norway, who have sustained a traumatic brain injury, return to school directly from the hospital. Participa- tion in 8 schools’ practices is included in this ph.d. project, where eight young people aged 13-17 years, all with a traumatic brain injury, are followed, in particular. The investigation consists of participant observations and in- terviews with the young people, their par- ents and significant professionals in school, in addition to document analyses of available neuropsychological reports, individual educa- tional plans (IEPs), and evaluation reports. In this article, agency and self-understanding after a traumatic brain injury are analysed, based on one of the 8 young people, Peter. The analysis shows that the absence of a “we”     and conditions that restrict and maintain Peter in non-participating positions, exclude him from contexts and communities that he wants to be a part of. This article concludes that there is a requirement for both a neuroscience and a subject science approach in order to un- derstand the dialectical relationship between the biological reality of young people’s brain injuries, and the difficulties as they are ex- pressed in different social practices in and out of school. This understanding is claimed to be of great importance, so that young people can expand their agency and exceed marginal positions after the brain injury

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)

Abstract 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

Rehabilitation for children with chronic acquired brain injury in the Child in Context Intervention (CICI) study: study protocol for a randomized controlled trial

Background: Pediatric acquired brain injury (pABI) is associated with long-term cognitive, behavioral, social, and emotional problems, which may affect the quality of life, school, and family functioning. Yet, there is a lack of evidence-based community-centered rehabilitation programs for chronic pABI and these children do not systematically receive comprehensive rehabilitation. The Child In Context Intervention (CICI) study is a pragmatic randomized controlled trial (RCT) for children with chronic pABI, which aims to evaluate the effectiveness of an individualized and goal-oriented intervention targeting everyday functioning of the child and family. Methods: Children aged 6–16 years with MRI/CT-verified intracranial abnormalities will be included in the CICI study if they have persistent self- or parent-reported cognitive, emotional, and/or behavioral challenges 1 year or more after insult and attend school regularly. A total of 70 families will be randomized 1:1 to an intervention or a control group. The intervention consists of seven family sessions, one parent seminar, and four school sessions delivered over approximately 6 months. The parent seminar will be held in person, and the other sessions will mainly be video based. The children’s and families’ self-reported major challenges in everyday life will be targeted using SMART goals. Evidence-based strategies, when available, will be applied to achieve the goals, combined with psychoeducation. Goal attainment scaling (GAS) will be used to evaluate goal attainment. Data is collected at baseline and after approximately 6 and 9 months. External assessors are blinded to group allocation. Primary outcomes are parent-reported brain injury symptoms in children and parenting self-efficacy at 9 months of follow-up. Secondary outcomes include child-reported brain injury symptoms, quality of life, executive functioning in daily life, parent emotional symptoms, family functioning, and unmet family health care needs. A process evaluation will be conducted. Discussion: The current study provides an innovative approach to rehabilitation for children in the chronic phase of ABI and their families. This complex intervention may contribute to the development of evidence-based, high-quality rehabilitation for a large patient group, which is underrepresented in clinical research. It may also improve collaboration between specialized rehabilitation facilities, schools, and local health care services. Inclusion for the trial started in April 2021