Sarah Louise Mason, Roger Alistair Barker, Katie Andresen, Fergus Gracey, Catherine Ford
{"title":"The meaning of apathy in Huntington's disease: A qualitative study of caregiver perspectives.","authors":"Sarah Louise Mason, Roger Alistair Barker, Katie Andresen, Fergus Gracey, Catherine Ford","doi":"10.1080/09602011.2024.2384519","DOIUrl":"https://doi.org/10.1080/09602011.2024.2384519","url":null,"abstract":"<p><p>Although one of the most prevalent and impactful features of Huntington's disease (HD), little is known about the impact of apathy on HD caregivers, although there is evidence it affects perceptions of distress and burden. Given the importance of the caregivers, we aimed to explore the lived experience of people supporting someone with HD and associated apathy. Semi-structured interviews were conducted with 11 caregivers and analysed using reflective thematic analysis, informed by a phenomenological framework. Five overarching themes were produced: (1) What even is apathy? (2) It makes my life harder: the practical impact of apathy, (3) They haven't forgotten me, but they have forgotten that they ever loved me, (4) I'm grieving for someone who hasn't died yet, and (5) I need a safe space to say what I really feel without fear of judgement. Inter-woven between these themes were complex narratives about the unspoken nature of HD, the invisibility of caregivers who felt trapped and unheard, and the one-sided nature of loving someone with the disease. Findings are discussed in relation to theoretical frameworks of anticipatory grief and ambiguous loss, and situated within the wider literature on caregiving for people with a neurodegenerative condition.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-08-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141894901","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"\"Maybe if this was addressed sooner, maybe things might be different in our relationship. I don't know. But who knows?\" Sexuality after TBI and its place in healthcare: A qualitative exploration of survivors' experiences.","authors":"Jill H A Hwang, Marina Downing, Jennie L Ponsford","doi":"10.1080/09602011.2024.2383340","DOIUrl":"https://doi.org/10.1080/09602011.2024.2383340","url":null,"abstract":"<p><p>Changes in sexual functioning and wellbeing after a traumatic brain injury (TBI) are common but remain poorly addressed. Little is known about the lived experiences and perspectives of individuals with TBI. Through semi-structured interviews with individuals with TBI (<i>n</i> = 20), this qualitative study explored their experiences with post-TBI sexuality, along with their needs and preferences for receiving sexuality support and service delivery. Three broad themes were identified through reflexive thematic analysis of interview transcripts. First, individuals differed significantly at the start of their journeys in personal attributes, TBI-associated impacts, and comfort levels in discussing sexuality. Second, journeys, feelings, and perspectives diverged based on the nature of post-TBI sexuality. Third, whilst responses to changes and preferences for support varied widely, individuals felt that clinicians were well-placed to help them navigate this area of their lives. The impacts felt by individuals with TBI, and the infrequency of clinical discussions highlight the need for clinician education and clinically validated assessment and treatment tools to improve how post-TBI sexuality is addressed and managed.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141879842","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Luke R Miller, Ross Divers, Christopher Reed, Jared Cherry, Abihail Patrick, Matthew Calamia
{"title":"Value-consistent rehabilitation is associated with long-term psychological flexibility and quality of life after traumatic brain injury.","authors":"Luke R Miller, Ross Divers, Christopher Reed, Jared Cherry, Abihail Patrick, Matthew Calamia","doi":"10.1080/09602011.2023.2256964","DOIUrl":"10.1080/09602011.2023.2256964","url":null,"abstract":"<p><p>Meaningful steps have been taken toward using holistic approaches in outpatient rehabilitation for traumatic brain injury (TBI) (i.e., treating the whole individual); however, research and practice continue to disproportionately focus on adapting to physical and cognitive changes. Research suggests treatment focusing on individual values may be important for psychological adjustment after TBI. The current study sought to explore individual values across multiple life domains in those with TBI as well as what values outpatient rehabilitation was helpful for, and to examine discrepancies between these factors (i.e., value-consistent rehabilitation) in relation to important long-term treatment outcomes. 215 adults with a history of TBI who had participated in outpatient rehabilitation completed online surveys assessing how consistent outpatient rehabilitation was with individual values, psychological flexibility, and quality of life. The life domains with the greatest discrepancies between individual importance and rehabilitation helpfulness were spirituality, intimate relations, and family relations. Greater value-consistent rehabilitation was associated with higher levels of psychological flexibility and quality of life beyond demographics and injury characteristics. Our findings provide further support in favour of holistic, client-centred approaches that are facilitated by neurological rehabilitation programs.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10244015","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Awareness through relationships in individuals undergoing rehabilitation following acquired brain injury.","authors":"Corinne McCabe, Andrea Sica, Donal G Fortune","doi":"10.1080/09602011.2023.2273578","DOIUrl":"10.1080/09602011.2023.2273578","url":null,"abstract":"<p><strong>Aim: </strong>This cross-sectional study investigated the association between self-awareness and quality of therapeutic relationships following acquired brain injury (ABI) while controlling for the potential impact of cognitive problems. It also aimed to investigate attachment as a potential moderator.</p><p><strong>Method: </strong>83 adults with ABI were recruited alongside a key member of their community neurorehabilitation team. The Scale to Assess Therapeutic Relationships (STAR) was used to measure therapeutic relationship quality and attachment was measured using the Experiences in Close Relationships - Relationship Structure (ECR-RS) questionnaire. Awareness was measured using the Patient Competency Rating Scale (PCRS) and the Mayo-Portland Adaptability Inventory (MPAI-4) provided a measure of cognitive problems. The MPAI-4 also provided an additional measure of awareness.</p><p><strong>Results: </strong>A significant association between self-awareness and therapeutic relationships was found in some regression models such that higher-quality relationships were associated with better awareness, after controlling for the impact of cognitive problems. Neither childhood parental attachment nor participants' attachment towards their rehabilitation staff were moderators.</p><p><strong>Conclusion: </strong>The observed associations between awareness in clients and therapeutic relationships with rehabilitation staff may have importance for rehabilitation in this context. Results highlight the value of continuing to prioritize the therapeutic relational environment in ABI rehabilitation and research.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71415329","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Emily J Carlson, Nour Al Ghriwati, Pam Wolters, Mary Anne Tamula, John Tisdale, Courtney Fitzhugh, Matt Hsieh, Staci Martin
{"title":"Longitudinal neurocognitive effects of nonmyeloablative hematopoietic stem cell transplant among older adolescents and adults with sickle cell disease: A description and comparison with sibling donors.","authors":"Emily J Carlson, Nour Al Ghriwati, Pam Wolters, Mary Anne Tamula, John Tisdale, Courtney Fitzhugh, Matt Hsieh, Staci Martin","doi":"10.1080/09602011.2023.2238948","DOIUrl":"10.1080/09602011.2023.2238948","url":null,"abstract":"<p><p>Sickle cell disease (SCD) is associated with increased risk of neurocognitive deficits. However, whether functioning changes following nonmyeloablative hematopoietic stem cell transplant (HSCT) remains unclear. This study aimed to examine changes in neuropsychological functioning pre- to post-transplant among patients with SCD and compare patients and siblings. Adults with SCD (<i>n</i> = 47; M<i><sub>age</sub></i> = 31.8 ± 8.9) and their sibling stem cell donors (<i>n</i> = 22; M<i><sub>age</sub></i> = 30.5± 9.2) enrolled on a nonmyeloablative HCST protocol completed cognitive and patient-reported outcome assessments at baseline and 12 months post-transplant. Path analyses were used to assess associations between pre-transplant variables and sibling/patient group status and post-transplant function. Mean patient cognitive scores were average at both timepoints. Patient processing speed and somatic complaints improved from baseline to follow-up. Baseline performance predicted follow-up performance across cognitive variables; patient/sibling status predicted follow-up performance on some processing speed measures. Results suggest that patients with SCD demonstrate slower processing speed than siblings. Processing speed increased pre- to post-HSCT among patients and siblings, and on some measures patients demonstrated greater improvement. Thus, HSCT may improve processing speed in patients, although further confirmation is needed. Findings provide promising evidence that neurocognitive functioning remains stable without detrimental effects from pre- to 12-months post nonmyeloablative HSCT in individuals with SCD.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9993448","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Nikita Tuli Sood, Celia Godfrey, Sarah Youn, Clara Chavez Arana, Vicki Anderson, Jonathan M Payne, Cathy Catroppa
{"title":"The decision-making task: Development and evaluation in a paediatric traumatic brain injury population.","authors":"Nikita Tuli Sood, Celia Godfrey, Sarah Youn, Clara Chavez Arana, Vicki Anderson, Jonathan M Payne, Cathy Catroppa","doi":"10.1080/09602011.2023.2242618","DOIUrl":"10.1080/09602011.2023.2242618","url":null,"abstract":"<p><p>Assessment measures that quantify decision-making abilities in children and adolescents are limited. In the current study, a novel computerized Decision-Making Task (DMT), which identifies the process that is involved in decision-making, was developed based on an existing information-boards paradigm. The overall aim was to validate the DMT in a paediatric TBI population. This prospective study investigated the performance on the DMT for children post-TBI (<i>n</i> = 49; 7-15 years) compared to typically developing controls (<i>n</i> = 22; 7-15 years), and investigated the psychometric properties of the DMT by examining internal consistency-related reliability, convergent validity (measures of decision-making, working memory, functional outcomes, and behaviour), and divergent validity (vocabulary). Significant differences were detected for performance on the DMT between children post-TBI and the control group. Psychometric properties of the DMT were acceptable, with variable findings for convergent validity (working memory, functional outcomes, and behaviour). This is the first study to develop and investigate a novel computerised task to assess decision-making skills in a paediatric TBI population. Results cautiously suggest that the DMT is a valid and a reliable measure of decision-making in our clinical sample.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10297704","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Predictive validity of the Oxford digital multiple errands test (OxMET) for functional outcomes after stroke.","authors":"Sam S Webb, Nele Demeyere","doi":"10.1080/09602011.2023.2247152","DOIUrl":"10.1080/09602011.2023.2247152","url":null,"abstract":"<p><p>The Oxford Digital Multiple Errands Test (OxMET) is a brief computer-tablet based cognitive screen, intended as an ecologically valid assessment of executive dysfunction. We examined aspects of predictive validity in relation to functional outcomes. Participants (≤ 2 months post-stroke) were recruited from an English-speaking stroke rehabilitation in-patient setting. Participants completed OxMET. The Barthel Index, Therapy Outcome Measure (TOMS), and modified Rankin Scale (mRS) were collected from medical notes. Participants were followed up after 6-months and completed the Nottingham Extended Activities of Daily Living (NEADL) scale. 117 participants were recruited (<i>M </i>= 26.18 days post-stroke (<i>SD </i>= 25.16), mean 74.44yrs (<i>SD</i> = 12.88), median NIHSS 8.32 (<i>IQR </i>= 5-11)). Sixty-six completed a follow-up (<i>M </i>= 73.94yrs (<i>SD</i> = 12.68), median NIHSS 8 (<i>IQR </i>= 4-11)). Significant associations were found between TOMS and mRS. At 6-month follow up, we found a moderate predictive relationship between the OxMET accuracy and NEADL (R<sup>2 </sup>= .29, <i>p </i>< .001), and we did not find this prediction with MoCA taken at 6-months. The subacute OxMET associated with measures of functionality and disability in a rehabilitation context, and in activities of daily living. The OxMET is an assessment of executive function with good predictive validity on clinically relevant functional outcome measures that may be more predictive than other cognitive tests.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10396127","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Josie Briscoe, Joanna Doherty, Katy Burgess, Christopher Kent
{"title":"Errorful learning improves recognition memory for new vocabulary for people living with memory and dysexecutive impairment following brain injury.","authors":"Josie Briscoe, Joanna Doherty, Katy Burgess, Christopher Kent","doi":"10.1080/09602011.2023.2259017","DOIUrl":"10.1080/09602011.2023.2259017","url":null,"abstract":"<p><p>A widely accepted view is that errorless learning is essential for supporting new learning in people with anterograde amnesia, but findings are mixed for those with a broader range of memory impairments. People at a chronic stage of recovery from brain injury (BI) with impaired memory and executive function (<i>N</i> = 26) were compared with adults in a comparison group without any known risks to brain function (<i>N</i> = 25). Learning techniques were compared using a \"Generate-and-correct\" and \"Read-only\" condition when learning novel word pairs. At test, both groups scored above chance and showed benefits of Generate-and-correct (error<i>ful</i> learning). Poor learners in the BI group were classified from \"flat\" learning slopes extracted from an independent word-pair learning task. Critically, poor learners showed no benefit, but also no decrement to learning, using the Generate-and-correct method. No group was harmed by errorful learning; all, except the poorest learners, benefitted from errorful learning. This study indicates, that in some rehabilitation settings, encouraging clients to guess the meaning of unfamiliar material (e.g., from cards, magazines, newspapers) and then correct their errors, could have benefits for recognition memory. Determining when and how errorful learning benefits learning is a key aim for future research.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41174952","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
P Burfein, T Roxbury, E J Doig, M-P McSween, N de Silva, D A Copland
{"title":"Return to work for stroke survivors with aphasia: A quantitative scoping review.","authors":"P Burfein, T Roxbury, E J Doig, M-P McSween, N de Silva, D A Copland","doi":"10.1080/09602011.2024.2381874","DOIUrl":"https://doi.org/10.1080/09602011.2024.2381874","url":null,"abstract":"<p><p>The international incidence of stroke in people of working age is rising. As such, meaningful work return is a major rehabilitation goal for many individuals, including those with aphasia. This scoping review aimed to outline the post-stroke aphasia evidence related to work outcomes, factors influencing employment along with contemporary vocational-language and communication rehabilitation practice. The review employed terms related to aphasia, stroke, rehabilitation, and return to work in publications preceding 25.6.2023. Data were descriptively analysed, and vocational outcomes were summarized at defined timepoints. Of the 908 articles reviewed, 31 papers were included. Individuals with post-stroke aphasia consistently have lower rates of return to work than those post-stroke without aphasia. Employment at one year was 34.29% for those with aphasia compared to 58.46% for people without aphasia. No literature reported vocational-language assessment practices and there were minimal work-focused aphasia interventions identified. There was insufficient evidence to clearly identify person-related, rehabilitation, workplace or other factors influencing work return. This scoping review has identified that there are gaps in knowledge about the factors that influence work return and targeted vocational rehabilitation for this group. Future research to optimize return to work for individuals with aphasia is recommended.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141861670","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Olivia Mazzone, Rowena Conroy, Taylor Jenkin, Adam Scheinberg, Sarah Knight
{"title":"The assessment and management of fatigue following paediatric acquired brain injury: rehabilitation clinicians' perspectives.","authors":"Olivia Mazzone, Rowena Conroy, Taylor Jenkin, Adam Scheinberg, Sarah Knight","doi":"10.1080/09602011.2024.2383337","DOIUrl":"https://doi.org/10.1080/09602011.2024.2383337","url":null,"abstract":"<p><p>Fatigue is common following paediatric acquired brain injury (ABI) and can negatively impact quality of life. Despite this, there is limited understanding of how clinicians currently assess and manage fatigue in rehabilitation. This study explored how Australian rehabilitation clinicians recognize, assess, and manage fatigue following paediatric ABI. Using a qualitative research design, semi-structured interviews were conducted with 11 clinicians who work with children (0-18 years) with ABI in rehabilitation. Interview transcripts were analysed using constructivist grounded theory methods. Two main themes and sub-themes were developed: (1) Reaching a shared understanding: Identifying and understanding fatigue; Unpacking fatigue with children and their families; and (2) Using the shared understanding: Clinicians working collaboratively to manage fatigue; Planning for and supporting children and their family through transitions; Anticipating and problem-solving speedbumps. Participants reflected on the importance of reaching a shared understanding of fatigue within each child's unique context, requiring the collaborative effort of the child, family, school, and interdisciplinary rehabilitation team, to problem-solve and manage fatigue together over time. These findings provide insights into the processes of assessing and managing fatigue from rehabilitation clinicians' perspectives and highlight the importance of a collaborative approach to support the individual needs of the child during their rehabilitation.</p>","PeriodicalId":54729,"journal":{"name":"Neuropsychological Rehabilitation","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141857221","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}