Abstract Objective: A positive therapeutic (or working) alliance has been associated with better outcomes for clients in the psychotherapeutic and traumatic brain injury (TBI) rehabilitation literature. The aim of this pilot study was to gain an understanding of the therapeutic alliance in community rehabilitation from the perspectives of adults with TBI and their close others who have completed a community rehabilitation programme. Method: This study used a constructivist, qualitative methodology which applied grounded theory analysis techniques. Using purposeful sampling, three pairs of participants (adults with TBI and close others) who had finished a community rehabilitation programme completed separate in-depth interviews which were transcribed verbatim and progressively analysed using a process of constant comparison. Results: A preliminary framework illustrating participants’ experience of a therapeutic alliance was generated, comprising three interconnected themes: being recognised as an individual, working together and feeling personally connected. All participants viewed being able to work together as important in their experience of community rehabilitation and described features that helped and hindered the alliance. Conclusion: These pilot study results demonstrate the importance of the therapeutic alliance to the rehabilitation experience of individuals with TBI and those close to them.
{"title":"It takes two to tango: The therapeutic alliance in community brain injury rehabilitation","authors":"Liz M. Williams, J. Douglas","doi":"10.1017/BrImp.2021.26","DOIUrl":"https://doi.org/10.1017/BrImp.2021.26","url":null,"abstract":"Abstract Objective: A positive therapeutic (or working) alliance has been associated with better outcomes for clients in the psychotherapeutic and traumatic brain injury (TBI) rehabilitation literature. The aim of this pilot study was to gain an understanding of the therapeutic alliance in community rehabilitation from the perspectives of adults with TBI and their close others who have completed a community rehabilitation programme. Method: This study used a constructivist, qualitative methodology which applied grounded theory analysis techniques. Using purposeful sampling, three pairs of participants (adults with TBI and close others) who had finished a community rehabilitation programme completed separate in-depth interviews which were transcribed verbatim and progressively analysed using a process of constant comparison. Results: A preliminary framework illustrating participants’ experience of a therapeutic alliance was generated, comprising three interconnected themes: being recognised as an individual, working together and feeling personally connected. All participants viewed being able to work together as important in their experience of community rehabilitation and described features that helped and hindered the alliance. Conclusion: These pilot study results demonstrate the importance of the therapeutic alliance to the rehabilitation experience of individuals with TBI and those close to them.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"41 1","pages":"24 - 41"},"PeriodicalIF":0.8,"publicationDate":"2021-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83384645","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract Background: As rates of pediatric concussion have steadily risen, and concerns regarding its consequences have emerged, pediatric concussion has received increased attention in research and clinical spheres. Accordingly, there has been a commitment to determine how best to prevent and manage this injury that so commonly affects young people. Despite this increased attention, and proliferation of research, pediatric concussion as a concept has rarely, if ever, been taken up and questioned. That is, little attention has been directed toward understanding what concussion ‘is’, or how young people are regarded in relation to it. As a result, pediatric concussion is understood in decidedly narrow terms, constructed as such by a biomedical way of knowing. Aim: We aim to demonstrate how conceptualizing concussion, and young people, ‘otherwise’, enabled the co-production of a more nuanced and complex understanding of the experience of pediatric concussion from the perspective of young people. Approach: Drawing on an illustrative case example from a critical qualitative arts-based study, we demonstrate how bringing young people into research as ‘knowers’ enabled us to generate much-needed knowledge about concussion in young people. Implications: The critical thinking put forward in this paper suggests a different approach to pediatric concussion, which is shared in the form of implications for clinical and research practice.
{"title":"Thinking Otherwise: Bringing Young People into Pediatric Concussion Clinical and Research Practice","authors":"K. Mah, B. Gladstone, Deb Cameron, N. Reed","doi":"10.1017/BrImp.2021.28","DOIUrl":"https://doi.org/10.1017/BrImp.2021.28","url":null,"abstract":"Abstract Background: As rates of pediatric concussion have steadily risen, and concerns regarding its consequences have emerged, pediatric concussion has received increased attention in research and clinical spheres. Accordingly, there has been a commitment to determine how best to prevent and manage this injury that so commonly affects young people. Despite this increased attention, and proliferation of research, pediatric concussion as a concept has rarely, if ever, been taken up and questioned. That is, little attention has been directed toward understanding what concussion ‘is’, or how young people are regarded in relation to it. As a result, pediatric concussion is understood in decidedly narrow terms, constructed as such by a biomedical way of knowing. Aim: We aim to demonstrate how conceptualizing concussion, and young people, ‘otherwise’, enabled the co-production of a more nuanced and complex understanding of the experience of pediatric concussion from the perspective of young people. Approach: Drawing on an illustrative case example from a critical qualitative arts-based study, we demonstrate how bringing young people into research as ‘knowers’ enabled us to generate much-needed knowledge about concussion in young people. Implications: The critical thinking put forward in this paper suggests a different approach to pediatric concussion, which is shared in the form of implications for clinical and research practice.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"5 1","pages":"104 - 117"},"PeriodicalIF":0.8,"publicationDate":"2021-11-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"75324001","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract Humans are social animals. Our sense of identity and ‘self’ is defined in part by the roles we perform in the social groups to which we belong. This article discusses some of the variables that contribute to our sense of self, including language, place of origin, education and shared social norms. It also outlines some of the general mechanisms that underpin our various social networks. In its final part, this article reviews the impact of social isolation, such as that happened during the COVID pandemic, on these social mechanisms and the resulted disruption of psychological wellbeing in individuals diagnosed with dementia.
{"title":"‘Dazed and Confused!’ Context and Social Disconnect in the Time of Pandemic","authors":"O. Piguet","doi":"10.1017/BrImp.2021.23","DOIUrl":"https://doi.org/10.1017/BrImp.2021.23","url":null,"abstract":"Abstract Humans are social animals. Our sense of identity and ‘self’ is defined in part by the roles we perform in the social groups to which we belong. This article discusses some of the variables that contribute to our sense of self, including language, place of origin, education and shared social norms. It also outlines some of the general mechanisms that underpin our various social networks. In its final part, this article reviews the impact of social isolation, such as that happened during the COVID pandemic, on these social mechanisms and the resulted disruption of psychological wellbeing in individuals diagnosed with dementia.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"36 1","pages":"343 - 348"},"PeriodicalIF":0.8,"publicationDate":"2021-11-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"85015089","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract Engaging in a meaningful life where one can exercise autonomy has been proposed as a key aim of rehabilitation. Influenced by a neoliberal worldview, this has traditionally been characterised by a pursuit towards individual functional independence in which one completes tasks and activities unassisted. However for many persons, individual functional independence may not be a realistic, prioritised or beneficial goal. Many individuals must learn to work with support workers to exercise choice and control. Such relationships extend beyond a transactional nature and involve many subtle characteristics. In this article, I draw on my lived experience of partnering with support workers to illustrate the complexity of such relationships and how they can enable interdependence to serve as a vehicle to self-determination. I finish with some ideas about what rehabilitation can do to recognise the important role human connections play in facilitating interdependence. Understanding the nature of these relationships is necessary to provide services which value interdependence, supporting people to pursue a meaningful life following impairment.
{"title":"The Lived Experience of Interdependence: Support Worker Relationships and Implications for Wider Rehabilitation","authors":"J. Bourke","doi":"10.1017/BrImp.2021.24","DOIUrl":"https://doi.org/10.1017/BrImp.2021.24","url":null,"abstract":"Abstract Engaging in a meaningful life where one can exercise autonomy has been proposed as a key aim of rehabilitation. Influenced by a neoliberal worldview, this has traditionally been characterised by a pursuit towards individual functional independence in which one completes tasks and activities unassisted. However for many persons, individual functional independence may not be a realistic, prioritised or beneficial goal. Many individuals must learn to work with support workers to exercise choice and control. Such relationships extend beyond a transactional nature and involve many subtle characteristics. In this article, I draw on my lived experience of partnering with support workers to illustrate the complexity of such relationships and how they can enable interdependence to serve as a vehicle to self-determination. I finish with some ideas about what rehabilitation can do to recognise the important role human connections play in facilitating interdependence. Understanding the nature of these relationships is necessary to provide services which value interdependence, supporting people to pursue a meaningful life following impairment.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"27 1","pages":"118 - 124"},"PeriodicalIF":0.8,"publicationDate":"2021-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"87475692","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
T. Mulligan, S. Barker-Collo, K. Gibson, Kelly M Jones
Abstract Background: This research adds to scarce literature regarding adolescent experiences of traumatic brain injury (TBI). Retrospective accounts of young adults who had sustained a TBI in adolescence were analysed to explore the perceived impact this had on their lives and forming identities during this important developmental stage. Methods: Thirteen adults (aged 20–25 years; mean 23 years) who sustained a mild or moderate TBI during adolescence (i.e. aged 13–17 years at injury), approximately 7.7 years (range = 6.7–8.0 years) prior, participated in the research. Semi-structured individual interviews, analysed using thematic analysis, explored participants’ experiences following their TBIs. Results: Thematic analysis of interview data produced two categories of themes: (1) Impacts on Important Areas of Life, which included: schoolwork suffered, career opportunities became limited, struggling with work and missing out socially; and (2) Impacts on Identity: with themes including feeling ‘stupid’, feeling self-conscious, loss of social identity and being dependent. Conclusions: TBI sustained during adolescence can have broad impacts on important areas of life and on developing identity.
{"title":"You Only Get One Brain: Adult Reflections on the Long-Term Impacts of Traumatic Brain Injury in Adolescence","authors":"T. Mulligan, S. Barker-Collo, K. Gibson, Kelly M Jones","doi":"10.1017/BrImp.2021.22","DOIUrl":"https://doi.org/10.1017/BrImp.2021.22","url":null,"abstract":"Abstract Background: This research adds to scarce literature regarding adolescent experiences of traumatic brain injury (TBI). Retrospective accounts of young adults who had sustained a TBI in adolescence were analysed to explore the perceived impact this had on their lives and forming identities during this important developmental stage. Methods: Thirteen adults (aged 20–25 years; mean 23 years) who sustained a mild or moderate TBI during adolescence (i.e. aged 13–17 years at injury), approximately 7.7 years (range = 6.7–8.0 years) prior, participated in the research. Semi-structured individual interviews, analysed using thematic analysis, explored participants’ experiences following their TBIs. Results: Thematic analysis of interview data produced two categories of themes: (1) Impacts on Important Areas of Life, which included: schoolwork suffered, career opportunities became limited, struggling with work and missing out socially; and (2) Impacts on Identity: with themes including feeling ‘stupid’, feeling self-conscious, loss of social identity and being dependent. Conclusions: TBI sustained during adolescence can have broad impacts on important areas of life and on developing identity.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"213 1","pages":"278 - 295"},"PeriodicalIF":0.8,"publicationDate":"2021-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"73115104","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract Purpose: To investigate the experiences of significant others when their loved one with a severe acquired brain injury (ABI) is being discharged from an ABI-specific rehabilitation unit. Participants: Significant others of loved ones with an ABI participated in interviews close to their loved ones being discharged from inpatient ABI rehabilitation. Methods: Semi-structured interviews were conducted, and thematic analysis applied. Additionally, the drawing method was also used which involved participants drawing what it was like for them as their loved one was going home. Image analysis was then combined with the interview data. Results: Eight significant others participated in interviews on discharge and completed a drawing describing their experience. Five themes were identified (Change, Mixed feelings, Support of family and friends, Journey and Staff interactions). Conclusion: The experience of having a loved one with a severe ABI in rehabilitation is an emotional event. Compassionate communication, consistency of information and thorough discharge planning practices were cornerstones to enhancing the experience of significant others, empowering them to undertake their new role.
{"title":"Pictures and a thousand words: the experiences of significant others whose loved ones have a severe brain injury who are being discharged home","authors":"Martin Checklin, Delwyne Stephens","doi":"10.1017/BrImp.2021.19","DOIUrl":"https://doi.org/10.1017/BrImp.2021.19","url":null,"abstract":"Abstract Purpose: To investigate the experiences of significant others when their loved one with a severe acquired brain injury (ABI) is being discharged from an ABI-specific rehabilitation unit. Participants: Significant others of loved ones with an ABI participated in interviews close to their loved ones being discharged from inpatient ABI rehabilitation. Methods: Semi-structured interviews were conducted, and thematic analysis applied. Additionally, the drawing method was also used which involved participants drawing what it was like for them as their loved one was going home. Image analysis was then combined with the interview data. Results: Eight significant others participated in interviews on discharge and completed a drawing describing their experience. Five themes were identified (Change, Mixed feelings, Support of family and friends, Journey and Staff interactions). Conclusion: The experience of having a loved one with a severe ABI in rehabilitation is an emotional event. Compassionate communication, consistency of information and thorough discharge planning practices were cornerstones to enhancing the experience of significant others, empowering them to undertake their new role.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"14 1","pages":"311 - 324"},"PeriodicalIF":0.8,"publicationDate":"2021-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"79840372","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract Objectives: Building upon the findings of an earlier study that explored the experience and impact of narrative storytelling following acquired brain injury (ABI), this study sought to examine the engagement of storytelling facilitators with storytellers. Methods: Transcripts of in-depth interviews conducted with six storytelling facilitators were analysed drawing upon content analysis. The analysis included a process of mapping previously analysed data (D’Cruz et al., 2020b) to a humanising values framework (Galvin & Todres, 2013; Todres et al., 2009). Results: The findings of this study provide insights into how facilitators engaged in humanising practice within the context of a storytelling advocacy programme. The facilitator participants ranged in years of facilitation experience from 1 to 11 years, with a mix of professional backgrounds, including health care (3), journalism (1) and community development (2). Analysed facilitator data mapped to each of the eight dimensions of the framework (insiderness, agency, uniqueness, togetherness, sense-making, personal journey, sense of place and embodiment), with a breadth of codes represented in each dimension, revealing the depth of humanisation. Conclusions: This study extends our understanding of approaches to engagement with adults living with ABI, demonstrating the humanising potential of storytelling. Furthermore, the findings help us to think about what it means to be human, guiding us to find ways to better partner with and support adults living with brain injury.
摘要目的:在早期研究的基础上，本研究探讨了获得性脑损伤(ABI)后叙述性讲故事的经历和影响，旨在研究讲故事促进者与讲故事者的互动。方法:采用内容分析法对6位讲故事引导者的深度访谈笔录进行分析。该分析包括将先前分析的数据(D 'Cruz等人，2020b)映射到人性化价值观框架(Galvin & Todres, 2013;Todres et al.， 2009)。结果:本研究的发现提供了关于辅导员如何在讲故事倡导计划的背景下从事人性化实践的见解。促进者参与者的促进经验从1年到11年不等，他们的专业背景各异，包括卫生保健(3)、新闻(1)和社区发展(2)。分析了促进者数据，将其映射到框架的八个维度(内在性、能动性、独特性、团结性、意义构建、个人旅程、地方感和化身)中的每一个维度，每个维度都代表了广泛的代码，揭示了人性化的深度。结论:这项研究扩展了我们对与ABI患者接触的方法的理解，展示了讲故事的人性化潜力。此外，这些发现帮助我们思考作为人类意味着什么，指导我们找到更好的合作伙伴和支持患有脑损伤的成年人的方法。
{"title":"Humanising brain injury rehabilitation: a qualitative study examining humanising approaches to engagement in the context of a storytelling advocacy programme","authors":"Kate D’Cruz, J. Douglas, T. Serry","doi":"10.1017/BrImp.2021.16","DOIUrl":"https://doi.org/10.1017/BrImp.2021.16","url":null,"abstract":"Abstract Objectives: Building upon the findings of an earlier study that explored the experience and impact of narrative storytelling following acquired brain injury (ABI), this study sought to examine the engagement of storytelling facilitators with storytellers. Methods: Transcripts of in-depth interviews conducted with six storytelling facilitators were analysed drawing upon content analysis. The analysis included a process of mapping previously analysed data (D’Cruz et al., 2020b) to a humanising values framework (Galvin & Todres, 2013; Todres et al., 2009). Results: The findings of this study provide insights into how facilitators engaged in humanising practice within the context of a storytelling advocacy programme. The facilitator participants ranged in years of facilitation experience from 1 to 11 years, with a mix of professional backgrounds, including health care (3), journalism (1) and community development (2). Analysed facilitator data mapped to each of the eight dimensions of the framework (insiderness, agency, uniqueness, togetherness, sense-making, personal journey, sense of place and embodiment), with a breadth of codes represented in each dimension, revealing the depth of humanisation. Conclusions: This study extends our understanding of approaches to engagement with adults living with ABI, demonstrating the humanising potential of storytelling. Furthermore, the findings help us to think about what it means to be human, guiding us to find ways to better partner with and support adults living with brain injury.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"119 1","pages":"91 - 103"},"PeriodicalIF":0.8,"publicationDate":"2021-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"77465911","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Abstract In this paper, we critically explore the discourse of change post brain injury and challenge the dominant discourse of negative change, which alone leaves little room for other perspectives to exist. These negative changes pose a considerable risk to the well-being of families who may benefit from engaging in richer accounts making room for a more coherent and connected sense of self and family post-injury. We explore how narrative approaches provide opportunities for all practitioners to expand their professional scripts and support families to move towards a future which is not dominated by a discourse of loss. While loss and negative change is an important and very real consequence, of brain injury, focusing purely on stories of loss is life limiting for family members and can cause psychological distress. The life thread model is offered as a visible tool for all practitioners to engage with and use while working with families, providing a concrete focus for reflection and discussion of narratives relating to change which otherwise can feel quite abstract in everyday practice. We argue that one way we can humanise our professional practice is to support all practitioners to engage in a narrative understanding of family change following ABI.
{"title":"How does a narrative understanding of change in families post brain injury help us to humanise our professional practice?","authors":"C. Whiffin, C. Ellis-Hill","doi":"10.1017/BrImp.2021.14","DOIUrl":"https://doi.org/10.1017/BrImp.2021.14","url":null,"abstract":"Abstract In this paper, we critically explore the discourse of change post brain injury and challenge the dominant discourse of negative change, which alone leaves little room for other perspectives to exist. These negative changes pose a considerable risk to the well-being of families who may benefit from engaging in richer accounts making room for a more coherent and connected sense of self and family post-injury. We explore how narrative approaches provide opportunities for all practitioners to expand their professional scripts and support families to move towards a future which is not dominated by a discourse of loss. While loss and negative change is an important and very real consequence, of brain injury, focusing purely on stories of loss is life limiting for family members and can cause psychological distress. The life thread model is offered as a visible tool for all practitioners to engage with and use while working with families, providing a concrete focus for reflection and discussion of narratives relating to change which otherwise can feel quite abstract in everyday practice. We argue that one way we can humanise our professional practice is to support all practitioners to engage in a narrative understanding of family change following ABI.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"1 1","pages":"125 - 133"},"PeriodicalIF":0.8,"publicationDate":"2021-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"73098599","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Psychosocial difficulties, including changed relationships are among the most pervasive and concerning issues following stroke. This study aimed to collate and thematically analyse qualitative literature describing the experience of close personal relationships from the perspective of stroke survivors. Using a scoping review methodology, four databases (CINAHL/EBSCO, MEDLINE/Pubmed, Embase, Psychinfo) were systematically searched, yielding 3100 citations. Following exclusion of duplicates and screening against inclusion criteria at title/abstract and full text levels, 53 articles were included in the review. Data were charted and thematically analysed. While research has increased since 2000, longitudinal designs are few. Four overarching themes and 12 subthemes were identified. ‘Social disruption’ described changing social worlds, lost social opportunities and shrinking networks. ‘Changed relationships’ included changed family and spousal relationships and changed parenting relationships. The third theme ‘relationships help’ highlighted positive aspects including belonging, support and a life worth living. The final theme was ‘coping with an altered social world’ and described adjustment and emotional responses. Relationships are an important aspect of life post stroke but are subject to changes and challenges. This article brings together a breadth of qualitative data to describe lived experiences. Further research, in particular, longitudinal research is required.
{"title":"The experience of close personal relationships after stroke: scoping review and thematic analysis of qualitative literature","authors":"Amy L Ford, J. Douglas, R. O'halloran","doi":"10.1017/BrImp.2021.12","DOIUrl":"https://doi.org/10.1017/BrImp.2021.12","url":null,"abstract":"Psychosocial difficulties, including changed relationships are among the most pervasive and concerning issues following stroke. This study aimed to collate and thematically analyse qualitative literature describing the experience of close personal relationships from the perspective of stroke survivors. Using a scoping review methodology, four databases (CINAHL/EBSCO, MEDLINE/Pubmed, Embase, Psychinfo) were systematically searched, yielding 3100 citations. Following exclusion of duplicates and screening against inclusion criteria at title/abstract and full text levels, 53 articles were included in the review. Data were charted and thematically analysed. While research has increased since 2000, longitudinal designs are few. Four overarching themes and 12 subthemes were identified. ‘Social disruption’ described changing social worlds, lost social opportunities and shrinking networks. ‘Changed relationships’ included changed family and spousal relationships and changed parenting relationships. The third theme ‘relationships help’ highlighted positive aspects including belonging, support and a life worth living. The final theme was ‘coping with an altered social world’ and described adjustment and emotional responses. Relationships are an important aspect of life post stroke but are subject to changes and challenges. This article brings together a breadth of qualitative data to describe lived experiences. Further research, in particular, longitudinal research is required.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":"40 1","pages":"231 - 261"},"PeriodicalIF":0.8,"publicationDate":"2021-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"80928358","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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