This study tries to understand the power of knowledge within collaborative care networks to provide insights for designing successful collaboration within care networks by combining intersectionality and epistemic (in)justice. Becoming an informal carer for someone with an acquired brain injury (ABI) causes a dramatic disruption of daily life. Collaboration between professionals and carers with a migration background may result in unjust and unfair situations within care networks. Carer experiences are shaped by aspects of diversity which are subject to power structures and processes of social (in)justice in care networks. In this study, intersectionality was used to both generate complex in-depth insights into the different active layers of carer experiences and focus on within-group differences. Intersectionality was combined with the theoretical concept of epistemic (in)justice to unravel underlying dynamics in collaborative care networks contributing to the understanding that carers with a migration background are often not seen as ‘knowers of reality.’ This qualitative study conducted in the Netherlands between 2019 and 2022 incorporated three informal group conversations (N = 32), semi-structured interviews (N = 21), and three dialogue sessions (N = 7) with carers caring for someone with an ABI. A critical friend and a community of practice, with carers, professionals, and care recipients (N = 8), contributed to the analysis. Three interrelated themes were identified as constituting different layers of the carer experience: (a) I need to keep going, focusing on carers' personal experiences and how experiences were related to carers social positioning; (b) the struggle of caring together, showing how expectations of family members towards carers added to carer burden; and (c) trust is a balancing act, centering on how support from professionals shaped carers' experiences, in which trusting professionals' support proved challenging for carers, and how this trust was influenced by contextual factors at organizational and policy levels. Overall, the need for diversity-responsive policies within care organizations is apparent. Carers with a migration background need to feel heard so they can meaningfully tailor care to meet recipients' needs.
Aim. Cognitive rehabilitation is of interest after paediatric acquired brain injury (ABI). The present systematic review examined studies investigating cognitive rehabilitation interventions for children with ABI, while focusing on identifying effective components. Components were categorized as (1) metacognition and/or strategy use, (2) (computerized) drill-based exercises, and (3) external aids. Methods. The databases PubMed (including MEDLINE), Psyclnfo, and CINAHL were searched until 22nd June 2017. Additionally, studies were identified through cross-referencing and by consulting experts in the field. Results. A total of 20 articles describing 19 studies were included. Metacognition/strategy use trainings (five studies) mainly improved psychosocial functioning. Drill-based interventions (six studies) improved performance on tasks similar to training tasks. Interventions combining these two components (six studies) benefited cognitive and psychosocial functioning. External aids (two studies) improved everyday memory. No studies combined external aids with drill-based interventions or all three components. Conclusion. Available evidence suggests that multi-component rehabilitation, e.g. combining metacognition/strategy use and drill-based training is most promising, as it can lead to improvements in both cognitive and psychosocial functioning of children with ABI. Intervention setting and duration may play a role. Conclusions remain tentative due to small sample sizes of included studies heterogeneity regarding outcome measures, intervention and therapist variables, and patient characteristics. https://doi.org/10.1080/02699052.2018.1458335
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In een door het lectoraat Revalidatie uitgevoerd onderzoek bij jongeren met niet aangeboren hersenletsel (NAH) hebben veertien studenten van de Academie voor Gezondheid geparticipeerd. Bij jongeren hebben zij, twee jaar na het oplopen van hersenletsel door een ongeval of hersenaandoening, tijdens een huisbezoek, verschillende vragenlijsten over sociaal-maatschappelijke participatie afgenomen. In de periode voorjaar 2010 tot najaar 2012 zijn in vier wervingsrondes hoofdfase studenten via drie methoden geworven voor participatie in het NAH-onderzoek. In dit artikel worden werkwijze werving, voorbereiding en begeleiding van de studenten beschreven. De voorbereiding bestond uit informatieverstrekking en training. De begeleiding vond plaats in de vorm van supervisie. Studenten kwamen in dit onderzoek rechtstreeks en intensief met deelnemers in contact. Bij dit contact worden (beroeps)competenties op de proef gesteld: in vele opzichten een belangrijke aanvulling op hun opleiding. De belangrijkste aanbeveling is, dat studentenparticipatie in praktijkgericht onderzoek goed voorbereid en ondersteund moet worden en aanzienlijk makkelijker verloopt als dit onderdeel is van het curriculum van de opleiding. Ook zal participeren in analyse en verwerking van de onderzoeksgegevens naast dataverzameling meerwaarde voor de student hebben. ABSTRACT Fourteen students of the Academy of Health participated in a research about the social impact of acquired brain injury (ABI) in adolescents. This research was performed by the research group Rehabilitation. The students conducted several questionnaires about social functioning while visiting the adolescents with ABI at home, two years after the youths had suffered from brain injury, through accident or brain illness. During four selection rounds that took place between Spring 2010 and Autumn 2012, students were recruited by three methods to participate in the data collection of the ABI research. This article describes methods of recruitment, preparation and supervision of the selected students. The preparation consisted of education and training. The supervision consisted of feedback and encouragement. Students were in direct and intensive contact with participants during this research. Their (professional) competencies were therefore put to the test and in many respects this was an important addition to their education. The most important recommendation is that student participation be properly prepared and supported in practically oriented research and be a much more integrated component of the programme curriculum. In addition to data collection, participation in the analysis and processing of research data will also be of added value for the student.
