Lynn Grayson, Marian C Brady, Leanne Togher, Myzoon Ali
{"title":"“我认为我会从我的观点中得到很多,我可以帮助其他人”——与有创伤性脑损伤经历的人共同设计一个基于家庭项目的干预。","authors":"Lynn Grayson, Marian C Brady, Leanne Togher, Myzoon Ali","doi":"10.1071/IB24128","DOIUrl":null,"url":null,"abstract":"<p><p>Background Meaningful engagement with families who have lived experience of traumatic brain injury (TBI) is essential if interventions are to more closely align with their needs. The aim of this study was to co-design a family project-based intervention including people with lived experience of TBI and explore participant experience. Methods People with cognitive-communication disorders following severe TBI, and their family members, were recruited from three Scottish brain injury services. The co-design teams participated in Microsoft Teams focus groups (October 2022 to January 2023). A range of adapted communication tools were developed to facilitate the co-design process, and e-surveys about the co-design experience were completed. Qualitative data arising from the focus groups were analysed thematically, and survey data were analysed descriptively. Results Thirteen participants (6 people following TBI and 7 family members) attended the co-design groups. The concept of a family project-based intervention was positively received and adaptions to content identified: inclusion of real-life examples, family support resources and a toolkit of strategies. A range of perceived personal benefits of being involved in the co-design groups was also reported; peer support, feeling heard and helping others. Conclusion People with cognitive-communication disorders following severe TBI, and their families, can make a valuable contribution to co-design research and benefit from the process. Following development of the adapted content, progression to the next design stage will involve feasibility testing of the co-designed family project-based intervention.</p>","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"26 ","pages":""},"PeriodicalIF":1.4000,"publicationDate":"2025-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"'I think I'd get a lot out of something where my views count and I could help other people' - co-designing a family project-based intervention with people with lived experience of traumatic brain injury.\",\"authors\":\"Lynn Grayson, Marian C Brady, Leanne Togher, Myzoon Ali\",\"doi\":\"10.1071/IB24128\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>Background Meaningful engagement with families who have lived experience of traumatic brain injury (TBI) is essential if interventions are to more closely align with their needs. The aim of this study was to co-design a family project-based intervention including people with lived experience of TBI and explore participant experience. Methods People with cognitive-communication disorders following severe TBI, and their family members, were recruited from three Scottish brain injury services. The co-design teams participated in Microsoft Teams focus groups (October 2022 to January 2023). A range of adapted communication tools were developed to facilitate the co-design process, and e-surveys about the co-design experience were completed. Qualitative data arising from the focus groups were analysed thematically, and survey data were analysed descriptively. Results Thirteen participants (6 people following TBI and 7 family members) attended the co-design groups. The concept of a family project-based intervention was positively received and adaptions to content identified: inclusion of real-life examples, family support resources and a toolkit of strategies. A range of perceived personal benefits of being involved in the co-design groups was also reported; peer support, feeling heard and helping others. Conclusion People with cognitive-communication disorders following severe TBI, and their families, can make a valuable contribution to co-design research and benefit from the process. Following development of the adapted content, progression to the next design stage will involve feasibility testing of the co-designed family project-based intervention.</p>\",\"PeriodicalId\":56329,\"journal\":{\"name\":\"Brain Impairment\",\"volume\":\"26 \",\"pages\":\"\"},\"PeriodicalIF\":1.4000,\"publicationDate\":\"2025-08-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Brain Impairment\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1071/IB24128\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Brain Impairment","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1071/IB24128","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
'I think I'd get a lot out of something where my views count and I could help other people' - co-designing a family project-based intervention with people with lived experience of traumatic brain injury.
Background Meaningful engagement with families who have lived experience of traumatic brain injury (TBI) is essential if interventions are to more closely align with their needs. The aim of this study was to co-design a family project-based intervention including people with lived experience of TBI and explore participant experience. Methods People with cognitive-communication disorders following severe TBI, and their family members, were recruited from three Scottish brain injury services. The co-design teams participated in Microsoft Teams focus groups (October 2022 to January 2023). A range of adapted communication tools were developed to facilitate the co-design process, and e-surveys about the co-design experience were completed. Qualitative data arising from the focus groups were analysed thematically, and survey data were analysed descriptively. Results Thirteen participants (6 people following TBI and 7 family members) attended the co-design groups. The concept of a family project-based intervention was positively received and adaptions to content identified: inclusion of real-life examples, family support resources and a toolkit of strategies. A range of perceived personal benefits of being involved in the co-design groups was also reported; peer support, feeling heard and helping others. Conclusion People with cognitive-communication disorders following severe TBI, and their families, can make a valuable contribution to co-design research and benefit from the process. Following development of the adapted content, progression to the next design stage will involve feasibility testing of the co-designed family project-based intervention.
期刊介绍:
The journal addresses topics related to the aetiology, epidemiology, treatment and outcomes of brain impairment with a particular focus on the implications for functional status, participation, rehabilitation and quality of life. Disciplines reflect a broad multidisciplinary scope and include neuroscience, neurology, neuropsychology, psychiatry, clinical psychology, occupational therapy, physiotherapy, speech pathology, social work, and nursing. Submissions are welcome across the full range of conditions that affect brain function (stroke, tumour, progressive neurological illnesses, dementia, traumatic brain injury, epilepsy, etc.) throughout the lifespan.