The fact that acquired brain injury (ABI) rehabilitation services are made up of human beings supporting other human beings is not often considered in research or practice. In this special issue of Brain Impairment we are delighted to be able to share the work of academics who are engaging with this aspect of ABI rehabilitation. As editors, when we met in 2018 at the 41st annual conference of the Australasian Society for the Study of Brain Iimpairment (ASSBI), we were struck by how several presentations, although using slightly different language, were all touching on the same aspect of rehabilitation - human connection. Despite consensus and anecdotal evidence that human connection is a critical component of rehabilitation, there is remarkably little written in the literature to help us unpack, reflect on and harness human connection. Human connection is therefore not only ‘ invisible ’ in itself but also in developments in rehabilitation research and practice. As a first step, we would like to encourage service managers, researchers and clinicians to consider the value of human connection within service provision, to explore new ways of researching which allows human connection to come to the fore, and to celebrate the experience and power of human connection in our therapeutic relationships. In this special issue we invite you, the reader into the world of the invisible and immeasurable - human connection. We have a diverse range of authors and topics ranging from those reflecting individual lived experience, through therapeutic relationship, to wider social discourses. Although the focus for each author is discrete we feel that each contribution adds to this continuum as each part cannot exist without each other; the individual experience is always relational and social in an ever changing and powerful sea of meaning. The first author in our issue, Rixon sets the scene and in a way ‘ says it all ’ . Through sharing his own experience of
{"title":"We are human – an invisible and fundamental aspect of rehabilitation in acquired brain injury","authors":"C. Ellis-Hill, N. Kayes, J. Douglas","doi":"10.1017/brimp.2022.1","DOIUrl":"https://doi.org/10.1017/brimp.2022.1","url":null,"abstract":"The fact that acquired brain injury (ABI) rehabilitation services are made up of human beings supporting other human beings is not often considered in research or practice. In this special issue of Brain Impairment we are delighted to be able to share the work of academics who are engaging with this aspect of ABI rehabilitation. As editors, when we met in 2018 at the 41st annual conference of the Australasian Society for the Study of Brain Iimpairment (ASSBI), we were struck by how several presentations, although using slightly different language, were all touching on the same aspect of rehabilitation - human connection. Despite consensus and anecdotal evidence that human connection is a critical component of rehabilitation, there is remarkably little written in the literature to help us unpack, reflect on and harness human connection. Human connection is therefore not only ‘ invisible ’ in itself but also in developments in rehabilitation research and practice. As a first step, we would like to encourage service managers, researchers and clinicians to consider the value of human connection within service provision, to explore new ways of researching which allows human connection to come to the fore, and to celebrate the experience and power of human connection in our therapeutic relationships. In this special issue we invite you, the reader into the world of the invisible and immeasurable - human connection. We have a diverse range of authors and topics ranging from those reflecting individual lived experience, through therapeutic relationship, to wider social discourses. Although the focus for each author is discrete we feel that each contribution adds to this continuum as each part cannot exist without each other; the individual experience is always relational and social in an ever changing and powerful sea of meaning. The first author in our issue, Rixon sets the scene and in a way ‘ says it all ’ . Through sharing his own experience of","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2022-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86825181","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 Introduction: Family members living with relatives with severe acquired brain injury (ABI) face many challenges. Although this is recognised, service provision in the UK is poor and needs development. Method: In order to support innovative service delivery for family members, we reflect on the research carried out by the first author using a new perspective – a lifeworld humanising approach in order to consider (a) the dehumanising existential challenges facing family members of people living with severe ABI and (b) what family members most value in service delivery presented in humanising terms. Findings: Following ABI, family members may enter a parallel lifeworld (feeling separate from ‘usual’ life as it flows by) and face fundamental existential challenges of isolation, loss of agency, dislocation, loss of meaning and loss of personal journey. Family members have reported that service providers who are highly valued are those who act as ‘expert companions’. This role involves supporting families in some, if not all of the following (a) reaching across into the lifeworld of the family member and appreciating and validating what they are facing, (b) helping them make sense of their situation in terms which are meaningful to them and which they can explain to others, (c) through ABI expertise, supporting their relative through knowing their interests and needs and adapting the environment to suit these to help their relative to ‘settle’ and flourish, (d) supporting family members to share their life experiences – developing safe and trusting relationships, (e) having a humane, positive, creative and for some, a humorous approach, (f) being responsive to changing situations, (g) being available to call during times of worry or crisis and (h) help link with others and helpful networks. Discussion: It is suggested that the role and approach of companion may help family members regain some sense of their own life and their well-being.
{"title":"Humanising health and social care: What do family members of people with a severe acquired brain injury value most in service provision","authors":"M. Holloway, C. Ellis-Hill","doi":"10.1017/BrImp.2021.36","DOIUrl":"https://doi.org/10.1017/BrImp.2021.36","url":null,"abstract":"Abstract Introduction: Family members living with relatives with severe acquired brain injury (ABI) face many challenges. Although this is recognised, service provision in the UK is poor and needs development. Method: In order to support innovative service delivery for family members, we reflect on the research carried out by the first author using a new perspective – a lifeworld humanising approach in order to consider (a) the dehumanising existential challenges facing family members of people living with severe ABI and (b) what family members most value in service delivery presented in humanising terms. Findings: Following ABI, family members may enter a parallel lifeworld (feeling separate from ‘usual’ life as it flows by) and face fundamental existential challenges of isolation, loss of agency, dislocation, loss of meaning and loss of personal journey. Family members have reported that service providers who are highly valued are those who act as ‘expert companions’. This role involves supporting families in some, if not all of the following (a) reaching across into the lifeworld of the family member and appreciating and validating what they are facing, (b) helping them make sense of their situation in terms which are meaningful to them and which they can explain to others, (c) through ABI expertise, supporting their relative through knowing their interests and needs and adapting the environment to suit these to help their relative to ‘settle’ and flourish, (d) supporting family members to share their life experiences – developing safe and trusting relationships, (e) having a humane, positive, creative and for some, a humorous approach, (f) being responsive to changing situations, (g) being available to call during times of worry or crisis and (h) help link with others and helpful networks. Discussion: It is suggested that the role and approach of companion may help family members regain some sense of their own life and their well-being.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2022-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"79312278","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: Equal, collaborative and therapeutic relationships centred on the person affected by stroke are important for supporting recovery and adjustment. However, realising these relationships in hospital practice is challenging when there is increasing focus on biomedical needs and organisational pressures. Despite a body of evidence advocating for quality relationships, there remains limited research describing how to achieve this in clinical practice. This appreciative action research (AAR) study aimed to describe the processes involved in co-creating meaningful relationships on stroke units. Design and methods: An AAR approach was used to develop humanising relationship-centred care (RCC) within two hospital stroke units. Participants were staff (n = 65), patients (n = 17) and relatives (n = 7). Data generation comprised of interviews, observations and discussion groups. Data were analysed collaboratively with participants using sense-making as part of the AAR cyclical process. Further in-depth analysis using immersion crystallisation confirmed and broadened the original themes. Findings: All participants valued similar relational experiences around human connections to support existential well-being. The AAR process supported changes in self, and the culture on the stroke units, towards increased value being placed on human relationships. The processes supporting human connections in practice were: (i) sensitising to humanising relational knowing; (ii) valuing, reflecting and sharing relational experiences with others that co-created a relational discourse; and (iii) having the freedom to act, enabling human connections. The outcomes from this study build on existing lifeworld-led care theories through developing orientations for practice that support relational knowing and propose the development of RCC to include humanising values.
{"title":"Knowing-in-action that centres humanising relationships on stroke units: an appreciative action research study","authors":"Clare Gordon, C. Ellis-Hill, B. Dewar, C. Watkins","doi":"10.1017/BrImp.2021.34","DOIUrl":"https://doi.org/10.1017/BrImp.2021.34","url":null,"abstract":"Abstract Background: Equal, collaborative and therapeutic relationships centred on the person affected by stroke are important for supporting recovery and adjustment. However, realising these relationships in hospital practice is challenging when there is increasing focus on biomedical needs and organisational pressures. Despite a body of evidence advocating for quality relationships, there remains limited research describing how to achieve this in clinical practice. This appreciative action research (AAR) study aimed to describe the processes involved in co-creating meaningful relationships on stroke units. Design and methods: An AAR approach was used to develop humanising relationship-centred care (RCC) within two hospital stroke units. Participants were staff (n = 65), patients (n = 17) and relatives (n = 7). Data generation comprised of interviews, observations and discussion groups. Data were analysed collaboratively with participants using sense-making as part of the AAR cyclical process. Further in-depth analysis using immersion crystallisation confirmed and broadened the original themes. Findings: All participants valued similar relational experiences around human connections to support existential well-being. The AAR process supported changes in self, and the culture on the stroke units, towards increased value being placed on human relationships. The processes supporting human connections in practice were: (i) sensitising to humanising relational knowing; (ii) valuing, reflecting and sharing relational experiences with others that co-created a relational discourse; and (iii) having the freedom to act, enabling human connections. The outcomes from this study build on existing lifeworld-led care theories through developing orientations for practice that support relational knowing and propose the development of RCC to include humanising values.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2022-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"84671667","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}
When health professionals and systems reduce people who survive brain injury to their symptoms and “survivor narratives” they create The Isolation Industry an industry that perpetuates a feeling of difference and deficit that caps the potential of those who they seek to help. So, how might stories disrupt this? I think the sharing of survival stories should be sexy. Not to be confused with sexual I’m talking about making lived experiences of brain injury palatable, relatable and investible. Narratives that evoke empathy, understanding and excitement eliminate stigma and end isolation. This paper holds familiar themes drawn from values consistent with research found in Brain Impairment; the importance of listening to the stories of people with lived experience of brain injury. Within the journal, I have read the work of many researchers on this topic; fancy-pants people with lots of degrees, who know a lot about brain injury. I am not a researcher; I am not an academic. I am a stroke survivor, a storyteller and a community mobiliser with firsthand experience of empowerment built through story-sharing. Sharing (and listening to) stories is important, but the challenge for health professionals is to use these stories to improve their practice and the experiences for survivors. Through their research, Tevendale and Armstrong (2015) found that when survivors shared their stories with health professionals, it improved the health professionals’ understanding of issues affecting people with lived experience and helped to refocus their beliefs of what mattered most in assisting people living with brain injury. Stories invite an emotional response and offer a narrative that likely differs from the patient history engaged by some health professionals. This work is an attempt to use my early stories to cast a spotlight on the disconnection that can occur in the rehabilitation process. By sharing these, I hope to start a conversation about the isolation that occurs for people with living experience of brain injury and how health professionals, policymakers and the system contribute to this. I want to create a dialogue loud enough to inspire you to pause and reflect on the part you could play in building a more connected rehab journey. Let us create a stronger connection; one built through stories, not statistics. The rhetoric we use and the paternalistic approach we engage reduces survivors to their disability; disempowering engagement leads to more isolation and increases mental health problems. We can change these outcomes by creating safe spaces for peers to connect and build capacity, using supportive and empowering language, recognising the wisdom people with lived experience hold, and by making collaboration, not compliance, an industry standard. I know this because I live it and it has been my journey for the past 13 years. Some of the most oppressive interactions that halted my recovery journey involved members of my healthcare team, particularly thos
{"title":"Connection: stories not statistics","authors":"C. Rixon","doi":"10.1017/BrImp.2021.37","DOIUrl":"https://doi.org/10.1017/BrImp.2021.37","url":null,"abstract":"When health professionals and systems reduce people who survive brain injury to their symptoms and “survivor narratives” they create The Isolation Industry an industry that perpetuates a feeling of difference and deficit that caps the potential of those who they seek to help. So, how might stories disrupt this? I think the sharing of survival stories should be sexy. Not to be confused with sexual I’m talking about making lived experiences of brain injury palatable, relatable and investible. Narratives that evoke empathy, understanding and excitement eliminate stigma and end isolation. This paper holds familiar themes drawn from values consistent with research found in Brain Impairment; the importance of listening to the stories of people with lived experience of brain injury. Within the journal, I have read the work of many researchers on this topic; fancy-pants people with lots of degrees, who know a lot about brain injury. I am not a researcher; I am not an academic. I am a stroke survivor, a storyteller and a community mobiliser with firsthand experience of empowerment built through story-sharing. Sharing (and listening to) stories is important, but the challenge for health professionals is to use these stories to improve their practice and the experiences for survivors. Through their research, Tevendale and Armstrong (2015) found that when survivors shared their stories with health professionals, it improved the health professionals’ understanding of issues affecting people with lived experience and helped to refocus their beliefs of what mattered most in assisting people living with brain injury. Stories invite an emotional response and offer a narrative that likely differs from the patient history engaged by some health professionals. This work is an attempt to use my early stories to cast a spotlight on the disconnection that can occur in the rehabilitation process. By sharing these, I hope to start a conversation about the isolation that occurs for people with living experience of brain injury and how health professionals, policymakers and the system contribute to this. I want to create a dialogue loud enough to inspire you to pause and reflect on the part you could play in building a more connected rehab journey. Let us create a stronger connection; one built through stories, not statistics. The rhetoric we use and the paternalistic approach we engage reduces survivors to their disability; disempowering engagement leads to more isolation and increases mental health problems. We can change these outcomes by creating safe spaces for peers to connect and build capacity, using supportive and empowering language, recognising the wisdom people with lived experience hold, and by making collaboration, not compliance, an industry standard. I know this because I live it and it has been my journey for the past 13 years. Some of the most oppressive interactions that halted my recovery journey involved members of my healthcare team, particularly thos","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2022-02-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"73491208","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}
Bronwyn Moorhouse, Erica R. Mainprize, J. Douglas, C. Fisher
Abstract Background: Social connection is often impacted by acquired brain injury (ABI), contributing to isolation and compromised mental health. Group therapy is thought useful in this context. For those experiencing cognitive communication challenges, finding alternative ways to engage is also valuable. Art therapy may offer pro-social support through shared activity, self-expression, organic subject matter and enduring visual prompts. Method: A multiple A-B-A single case experimental design compared participation in sports discussion and art therapy groups on a long-stay secure unit. Nine individuals with ABI and complex combinations of communication, cognitive and mental health needs were studied. It was hypothesised that for some individuals, participation would be greater in art therapy than sports discussion groups. Results: Results from six individuals with at least five measurement points per phase are reported. Tau statistics revealed significant interphase differences for three individuals. Significantly less participation was recorded for two individuals in art than sports discussion, however they still appeared invested in the art groups. The remaining participant, with the most severe communication difficulties, avoided all baseline sports discussion groups, but participated in almost all art groups, with significant increase between initial sports discussion and art phases. Conclusion: Further research is warranted regarding the potential art therapy offers for group engagement, particularly where complex challenges render traditional talking-style groups less appropriate. Furthermore, disparate and complex needs in severe ABI require diverse, well-designed groups offering different opportunities and responding to individual strengths and motivations. More research into such approaches may increase group participation in this challenging cohort.
背景:获得性脑损伤(ABI)经常影响社会联系，导致孤立和心理健康受损。在这种情况下，团体治疗被认为是有用的。对于那些经历认知沟通挑战的人来说，寻找其他参与方式也很有价值。艺术疗法可以通过共享活动、自我表达、有机主题和持久的视觉提示来提供亲社会支持。方法:采用多个A- b -A单例实验设计，比较长期住院安全病房中运动讨论组和艺术治疗组的参与情况。本研究对9例ABI患者进行了研究，这些患者具有沟通、认知和心理健康需求的复杂组合。据推测，对一些人来说，艺术治疗比体育讨论组的参与度更高。结果:报告了六个人每个阶段至少五个测量点的结果。Tau统计显示三个个体的间期差异显著。两个人在艺术讨论中的参与度明显低于体育讨论，但他们似乎仍然对艺术小组很投入。其余沟通困难最严重的参与者避开了所有基本的体育讨论组，但参加了几乎所有的艺术小组，在最初的体育讨论和艺术阶段之间显著增加。结论:有必要进一步研究艺术疗法对群体参与的潜在作用，特别是在复杂的挑战使传统的谈话式群体不太合适的情况下。此外，在严重的ABI中，不同的和复杂的需求需要多样化的、设计良好的团体，提供不同的机会，并对个人的优势和动机做出反应。对这些方法的更多研究可能会增加这个具有挑战性的队列的群体参与。
{"title":"Comparing participation in sports discussion and art therapy groups in ABI","authors":"Bronwyn Moorhouse, Erica R. Mainprize, J. Douglas, C. Fisher","doi":"10.1017/BrImp.2021.32","DOIUrl":"https://doi.org/10.1017/BrImp.2021.32","url":null,"abstract":"Abstract Background: Social connection is often impacted by acquired brain injury (ABI), contributing to isolation and compromised mental health. Group therapy is thought useful in this context. For those experiencing cognitive communication challenges, finding alternative ways to engage is also valuable. Art therapy may offer pro-social support through shared activity, self-expression, organic subject matter and enduring visual prompts. Method: A multiple A-B-A single case experimental design compared participation in sports discussion and art therapy groups on a long-stay secure unit. Nine individuals with ABI and complex combinations of communication, cognitive and mental health needs were studied. It was hypothesised that for some individuals, participation would be greater in art therapy than sports discussion groups. Results: Results from six individuals with at least five measurement points per phase are reported. Tau statistics revealed significant interphase differences for three individuals. Significantly less participation was recorded for two individuals in art than sports discussion, however they still appeared invested in the art groups. The remaining participant, with the most severe communication difficulties, avoided all baseline sports discussion groups, but participated in almost all art groups, with significant increase between initial sports discussion and art phases. Conclusion: Further research is warranted regarding the potential art therapy offers for group engagement, particularly where complex challenges render traditional talking-style groups less appropriate. Furthermore, disparate and complex needs in severe ABI require diverse, well-designed groups offering different opportunities and responding to individual strengths and motivations. More research into such approaches may increase group participation in this challenging cohort.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2022-01-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"86328405","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}
N. Kayes, C. Cummins, K. McPherson, Linda Worrall, F. Bright
Abstract Background and Aims: Engagement is increasingly recognised as important for maximising rehabilitation outcome following stroke. However, engagement can be challenging when neurological impairment impacts a persons’ ability to activate the regulatory processes necessary for engagement and in the context of a changed self. We explored engagement in stroke rehabilitation from the perspective of people with stroke with a primary focus on identifying key processes that appeared important to engagement in stroke rehabilitation. Design and Methods: This study drew on Interpretive Description methodology. Maximum variation and theoretical sampling were used to capture diversity in the sample and access a depth and breadth of perspectives. Data collection included semi-structured interviews with people with stroke (n = 19). Data were analysed through a collaborative and iterative process drawing on range of analytical tools including coding, memoing, diagramming and group discussions. Findings: Our findings highlight that engagement is a complex, nuanced, responsive, flexible and inherently two-way process. Developing connections appeared central to engagement with connections taking various forms. The most fundamental was the therapeutic connection between the person with stroke and their practitioner as it provided the foundation on which to build other connections. Connection was made possible through five collaborative processes: Knowing, Entrusting, Adapting, Investing and Reciprocating. Conclusions: Engagement is a social and relational process enabled through an inherently person-centred approach and active and ongoing reflexivity – highlighting the importance of a humanising approach to care where aspects of self, care and emotion are evident, for both the person with stroke and their practitioner.
{"title":"Developing connections for engagement in stroke rehabilitation","authors":"N. Kayes, C. Cummins, K. McPherson, Linda Worrall, F. Bright","doi":"10.1017/BrImp.2021.27","DOIUrl":"https://doi.org/10.1017/BrImp.2021.27","url":null,"abstract":"Abstract Background and Aims: Engagement is increasingly recognised as important for maximising rehabilitation outcome following stroke. However, engagement can be challenging when neurological impairment impacts a persons’ ability to activate the regulatory processes necessary for engagement and in the context of a changed self. We explored engagement in stroke rehabilitation from the perspective of people with stroke with a primary focus on identifying key processes that appeared important to engagement in stroke rehabilitation. Design and Methods: This study drew on Interpretive Description methodology. Maximum variation and theoretical sampling were used to capture diversity in the sample and access a depth and breadth of perspectives. Data collection included semi-structured interviews with people with stroke (n = 19). Data were analysed through a collaborative and iterative process drawing on range of analytical tools including coding, memoing, diagramming and group discussions. Findings: Our findings highlight that engagement is a complex, nuanced, responsive, flexible and inherently two-way process. Developing connections appeared central to engagement with connections taking various forms. The most fundamental was the therapeutic connection between the person with stroke and their practitioner as it provided the foundation on which to build other connections. Connection was made possible through five collaborative processes: Knowing, Entrusting, Adapting, Investing and Reciprocating. Conclusions: Engagement is a social and relational process enabled through an inherently person-centred approach and active and ongoing reflexivity – highlighting the importance of a humanising approach to care where aspects of self, care and emotion are evident, for both the person with stroke and their practitioner.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2021-12-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"83211293","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}
Bob Wilson, F. Bright, C. Cummins, H. Elder, N. Kayes
Abstract Background and Aims: Therapeutic connections enhance patient experience and outcomes after neurological injury or illness. While we have some understanding of the components necessary to optimise therapeutic connections, these have developed from western-centric ideals. This study sought to explore the perspectives of Māori brain injury survivors, and their whānau (wider family and community), to develop more culturally informed understandings of what matters most for Māori in the development and experience of therapeutic connection. Design and Methods: A bicultural approach underpinned by principles of Kaupapa Māori Research was used. Whānau views and experiences were gathered through wānanga (focus groups). These perspectives were analysed drawing on Māori methods of noho puku (self-reflection), whanaungatanga (relational linkage) and kaitiakitanga (guardianship). Findings: Three wānanga were held with 16 people – 5 brain injury survivors and 11 whānau members. The phrase ‘therapeutic connection’ did not resonate; instead, people spoke of meaningful connections. For rehabilitation encounters to be meaningful, three layers of connection were acknowledged. The elemental layer features wairua (spirit) and hononga (connection) which both underpinned and surrounded interactions. The relational layer reflects the importance of whānau identity and collectivism, of being valued, known, and interactively spoken with. Finally, the experiential layer consists of relational aspects important within the experience: relationships of reciprocity that are mana-enhancing and grounded in trust. These layers are interwoven, and together serve as a framework for meaningful connections. Conclusions: Meaningful connections in neurorehabilitation are underpinned by wairua and hononga; are multi-layered; are enabled through interactions with people, practice, process and place; are inclusive of whānau and resonate with Māori worldviews. The primacy of wairua and whānau within an interconnected view of health, challenges individualistic notions inherent in western health models and deepens existing understandings of meaningful connections in neurorehabilitation which can guide future rehabilitation research, teaching and practice.
{"title":"‘The wairua first brings you together’: Māori experiences of meaningful connection in neurorehabilitation","authors":"Bob Wilson, F. Bright, C. Cummins, H. Elder, N. Kayes","doi":"10.1017/BrImp.2021.29","DOIUrl":"https://doi.org/10.1017/BrImp.2021.29","url":null,"abstract":"Abstract Background and Aims: Therapeutic connections enhance patient experience and outcomes after neurological injury or illness. While we have some understanding of the components necessary to optimise therapeutic connections, these have developed from western-centric ideals. This study sought to explore the perspectives of Māori brain injury survivors, and their whānau (wider family and community), to develop more culturally informed understandings of what matters most for Māori in the development and experience of therapeutic connection. Design and Methods: A bicultural approach underpinned by principles of Kaupapa Māori Research was used. Whānau views and experiences were gathered through wānanga (focus groups). These perspectives were analysed drawing on Māori methods of noho puku (self-reflection), whanaungatanga (relational linkage) and kaitiakitanga (guardianship). Findings: Three wānanga were held with 16 people – 5 brain injury survivors and 11 whānau members. The phrase ‘therapeutic connection’ did not resonate; instead, people spoke of meaningful connections. For rehabilitation encounters to be meaningful, three layers of connection were acknowledged. The elemental layer features wairua (spirit) and hononga (connection) which both underpinned and surrounded interactions. The relational layer reflects the importance of whānau identity and collectivism, of being valued, known, and interactively spoken with. Finally, the experiential layer consists of relational aspects important within the experience: relationships of reciprocity that are mana-enhancing and grounded in trust. These layers are interwoven, and together serve as a framework for meaningful connections. Conclusions: Meaningful connections in neurorehabilitation are underpinned by wairua and hononga; are multi-layered; are enabled through interactions with people, practice, process and place; are inclusive of whānau and resonate with Māori worldviews. The primacy of wairua and whānau within an interconnected view of health, challenges individualistic notions inherent in western health models and deepens existing understandings of meaningful connections in neurorehabilitation which can guide future rehabilitation research, teaching and practice.","PeriodicalId":56329,"journal":{"name":"Brain Impairment","volume":null,"pages":null},"PeriodicalIF":0.8,"publicationDate":"2021-12-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"88969857","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 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":null,"pages":null},"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":null,"pages":null},"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}
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