The meaning of apathy in Huntington's disease: A qualitative study of caregiver perspectives.

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.

Predictors and correlates of emotionalism across acquired and progressive neurological conditions: A systematic review.

Emotionalism can develop following a range of neurological disorders; however the aetiology of emotionalism is still unclear. To identify anatomical, neuropsychological and psychological predictors and correlates of emotionalism across neurological disorders: stroke, Parkinson's disease, multiple sclerosis, traumatic brain injury, Alzheimer's disease, vascular dementia and amyotrophic lateral sclerosis. To explore if these predictors and correlates of emotionalism differ across neurological disorders. A comprehensive systematic search was completed of four databases: MEDLINE, CINAHL Complete, PsycINFO and EMBASE. Methodological quality was assessed using the Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies and each study was graded according to the level of evidence using the Scottish Intercollegiate Guidelines Network. Fifty papers (participants N = 1922) were included. 25 studies were rated as "Fair," 21 "Good" and 4 "Poor." The review identified predictors and correlates found in several neurological disorder such as bulbar networks, serotonergic pathways, genetics and female gender. Multiple studies across diseases (stroke, MS, ALS) indicate emotionalism is associated with cognitive impairment, especially frontal deficits. Due to the disproportionate number of studies identified across neurological disorders, it is difficult to draw definitive answers. Further research is required across neurological disorders to explore similarities and differences in anatomical, neuropsychological and psychological predictors and correlates.

The experiences of wives following acquired brain injury (ABI). A qualitative analysis exploring realisations of change following the ABI of a "loved one."

The experiences of family members following Acquired Brain Injury (ABI) are well established, with spouses in particular facing multiple relational and personal changes. Qualitative studies have analysed accounts pertaining to a range of sequelae, however, "change" itself has yet to be addressed. This study explored the experiences of realisation of change for married women living with their husbands following ABI. Nine participants took part in semi-structured interviews focussing on becoming aware of changes in both their spouse and themselves post-injury. An Interpretative Phenomenological Analysis (IPA) was completed, arriving at two overarching themes; "bravery to face changes" and "lost and trapped in an unsolvable maze," with accompanying subthemes. Participants generally experienced realisation of change gradually, in some cases finding strategies to control their exposure to distress. They often referred to "acceptance," which held varied meanings, and metaphors appeared to aid personal meaning making. Relationship changes generated both dilemmas and the feeling of being trapped. Overall, this study contributes greater insights into the experiential mechanisms underpinning realisation of change in spouses after brain injury.

The process of identity change following ABI from the perspectives of adolescents and their mothers: A relational grounded theory approach.

This study explored the process of identity adjustment following adolescent brain injury, within the systemic context of the parent-adolescent dyad. Six young people with an ABI (mean age 16.5 years, range 15-18 years; TBI: n = 3) were individually interviewed, and six respective mothers (mean age 45 years, range 37-50 years). A novel relational qualitative grounded theory approach was used, with analyses of dyads linked in an attempt to capture the shared process of adaptation post-injury for young people and their parents. Shared themes emerged for adolescents and mothers regarding "continuity and change" and "acknowledging or rejecting" experiences of change post injury. Adolescents experienced change as an, at times, distressing sense of being "not normal". While mothers turned towards their child, working hard to try to "fix everything", adolescents sought continuity of identity in the context of peer relationships, withdrawing socially to avoid feeling abnormal, reframing or finding new relationships. Some mothers sought to fill social losses through family or disability-specific activity. This study provides a relational understanding of the process of identity adjustment post adolescent BI. Future research and clinical practice should recognize the significant work of mothers, and significance of social relationships to adolescents' emerging post-injury identity.

A new model to guide identity-focused multidisciplinary rehabilitation for children and young people following acquired brain injury: I-FoRM.

A complexity of biological, psychological, environmental and systemic factors influences a child's adaption after acquired brain injury (ABI), all of which transform as the child matures. Multidisciplinary rehabilitation teams are challenged by balancing family system needs and the child's needs, whilst promoting the child's functional skills in difficult or unappealing tasks. This paper presents the conceptual basis for a model for use in childhood ABI neurorehabilitation to address these challenges. A non-systematic narrative review of literature pertinent to integrated neurorehabilitation of pediatric ABI was conducted. Contemporary models of adult and pediatric psychosocial adaptation involving identity following ABI were reviewed. Key findings were then synthesized with models of pediatric resilience and self-concept development. The resulting model describes a cyclical adaptation process whereby the child learns experientially about their self and their world after ABI. Processes of identity development play a central role - particularly emotive processes of self-evaluation - by influencing the child's motivation for participation, tolerance for challenge, self-regulation and emerging self-awareness. The model directs clinicians to use the psychosocial processes of identity development to enhance the child's willingness and capacity to engage in the daily challenges of rehabilitation. Further systematic development and evaluation of the model is needed.

A qualitative exploration of fatherhood after acquired brain injury (ABI).

Acquired Brain Injury (ABI) significantly affects individuals across multiple areas of intimate, familial, and parental domains. Gender and identity are pivotal research areas in navigating life after ABI. To date, scant research has explored gendered experiences, particularly those related to the masculine lifeworld. This study aimed to explore how men who were fathers before their injuries experience fatherhood after ABI. An Interpretative phenomenological analysis (IPA) methodology was used, and seven fathers participated in the semi-structured interviews (time since injury 1-18 years, age range 27-66 years) which explored their meaning-making. Four superordinate themes were drawn from all interviews through engaging with the qualitative research process: (1) what being a father means, (2) altered relationships with others, (3) becoming lost and finding their way through, and (4) renewed fatherhood. The findings show intersectionality between pre-and post-injury comparisons of self and social identities, alongside the contextual and societal identities in the subjective fathering experiences. Through increased understanding, we may enable fathers to find new ways to resolve, reformulate, and connect to move into their future possible fatherhood. The importance of this research is in giving voice to these less represented men so that we may shape our understanding to aid future fathers post-ABI.

Wisdom enhancement and life skills to augment CBT outcomes for depression in later life: a series of N-of-1 trials.

BACKGROUND: It has been suggested that cognitive behavioural therapy for older adults be augmented with age-appropriate methods to enhance outcomes for depression treatment. AIMS: This study investigated whether a CBT wisdom enhancement timeline technique for older adults reduced depression, as well as increase self-compassion and self-assessed wisdom. METHOD: An N-of-1 series trial with non-concurrent multiple-baseline AB design was conducted. Older adults experiencing depression, recruited from mental health service waiting lists, were randomly assigned to baseline conditions. Participants received five individual sessions of the examined intervention, offering a structured way of utilising one's life experiences to evolve the psychological resource of wisdom within a cognitive behavioural framework, in order to improve mood. Participants completed idiographic daily measures and self-report standardised measures of depression, anxiety, self-compassion and wisdom during baseline and intervention phases, and at 1 month follow-up. RESULTS: Six participants competed the study and were subject to standardised and single-case data analyses. Four participants were deemed responders with reliable changes in depression post-intervention with idiographic changes coinciding with intervention onset. Two participants saw clinically significant changes in depression scores at follow-up. One responder saw significant changes in measures of self-compassion and self-assessed wisdom. CONCLUSIONS: The examined technique shows promise as an effective technique for reducing depression in older adults. There is insufficient evidence to implicate wisdom and/or self-compassion as significant mechanisms of change. Clinical and theoretical implications are discussed.

What Factors are Associated with Posttraumatic Growth in Older Adults? A Systematic Review.

OBJECTIVES: Posttraumatic growth (PTG) is of increased theoretical and clinical interest. However, less is known about PTG in older adults specifically. This systematic review aimed to identify domains where PTG is studied for older adults; investigate factors associated with PTG in older adults; consider how these might differ between historical and later life traumas. METHODS: Online databases were searched for quantitative studies examining PTG outcomes in adults aged ≥ 60 years. RESULTS: 15 studies were subject to a narrative synthesis. CONCLUSIONS: Older adults can experience substantial levels of PTG, from traumas during later life or across the lifespan, and historical wartime traumas. Traumas can be diverse, some studies found equivalent levels of PTG from different traumas across the lifespan. Social processes may be a key variable for older adults. Additional psychosocial factors are found; however, diverse findings reflect no overall model, and this may be consistent with variations found in other PTG literature. CLINICAL IMPLICATIONS: Clinical considerations are discussed. As diverse studies, findings may not be widely generalizable and directions for further research are highlighted. PROSPERO: CRD42020169318.

Psychometric evaluation of a newly developed measure of emotionalism after stroke (TEARS-Q).

OBJECTIVE: To evaluate, psychometrically, a new measure of tearful emotionalism following stroke: Testing Emotionalism After Recent Stroke - Questionnaire (TEARS-Q). SETTING: Acute stroke units based in nine Scottish hospitals, in the context of a longitudinal cohort study of post-stroke emotionalism. SUBJECTS: A total of 224 clinically diagnosed stroke survivors recruited between October 1st 2015 and September 30th 2018, within 2 weeks of their stroke. MEASURES: The measure was the self-report questionnaire TEARS-Q, constructed based on post-stroke tearful emotionalism diagnostic criteria: (i) increased tearfulness, (ii) crying comes on suddenly, with no warning (iii) crying not under usual social control and (iv) crying episodes occur at least once weekly. The reference standard was presence/absence of emotionalism on a diagnostic, semi-structured post-stroke emotionalism interview, administered at the same assessment point. Stroke, mood, cognition and functional outcome measures were also completed by the subjects. RESULTS: A total of 97 subjects were female, with a mean age 65.1 years. 205 subjects had sustained ischaemic stroke. 61 subjects were classified as mild stroke. TEARS-Q was internally consistent (Cronbach's alpha 0.87). TEARS-Q scores readily discriminated the two groups, with a mean difference of -7.18, 95% CI (-8.07 to -6.29). A cut off score of 2 on TEARS-Q correctly identified 53 of the 61 stroke survivors with tearful emotionalism and 140 of the 156 stroke survivors without tearful emotionalism. One factor accounted for 57% of the item response variance, and all eight TEARS-Q items acceptably discriminated underlying emotionalism. CONCLUSION: TEARS-Q accurately diagnoses tearful emotionalism after stroke.

Detecting mental health problems after paediatric acquired brain injury: A pilot Rasch analysis of the strengths and difficulties questionnaire.

The parent-reported Strengths and Difficulties Questionnaire (SDQ-P) is commonly used to assess for mental health problems, but its psychometric properties have not been studied in the paediatric Acquired Brain Injury (ABI) population. This study investigated the properties of the SDQ-P and its subscales in this population using Rasch analysis. One hundred and forty-three SDQ-Ps and 123 Impact Supplements were analyzed. Sixty-nine percent of SDQ-Ps were completed by female carers, 59% of young people were male, and 58% had Traumatic Brain Injury (TBI). In this population the SDQ-P Total Difficulties Scale and the Conduct Problems subscale showed questionable construct validity. The individual subscales and Impact Supplement did not meet the criteria for reliability. Two items had disordered thresholds. The individual subscales showed mistargeting and 13-24% person misfit. Two items were significantly underdiscriminating. There was differential item functioning with age and time post-injury, and local dependence between subscale items. The Total Difficulties scale was multidimensional. The most easily endorsed items were in keeping with common symptoms of brain injury. These findings suggest the SDQ-P in its current form may not be a reliable and valid assessment measure for mental health difficulties in the paediatric ABI population and requires further investigation.

What do Kids with Acquired Brain Injury Want? Mapping Neuropsychological Rehabilitation Goals to the International Classification of Functioning, Disability and Health.

OBJECTIVE: To increase understanding of the community neuropsychological rehabilitation goals of young people with acquired brain injuries (ABIs). METHOD: Three hundred twenty-six neuropsychological rehabilitation goals were extracted from the clinical records of 98 young people with ABIs. The participants were 59% male, 2-19 years old, and 64% had a traumatic brain injury. Goals were coded using the International Classification of Functioning, Disability and Health: Children and Youth Version (ICF-CY). Descriptive statistical analysis was performed to assess the distribution of goals across the ICF-CY. Chi-squared and Cramer's V were used to identify demographic and injury-related associations of goal type. RESULTS: The distribution of goals was 52% activities and participation (AP), 28% body functions (BF), 20% environmental factors (EF), and <1% body structures (BS). The number of EF goals increased with age at assessment (V = .14). Non-traumatic causes of ABIs were associated with more EF goals (V = .12). There was no association between sex or time post-injury and the distribution of goals across the ICF-CY. CONCLUSIONS: Young people with ABIs have a wide range of community neuropsychological rehabilitation goals that require an individualized, context-sensitive, and interdisciplinary approach. Community neuropsychological rehabilitation services may wish to ensure they are resourced to focus intervention on AP, with increasing consideration for EF as a young person progresses through adolescence. The findings of this research support models of community neuropsychological rehabilitation that enable wellness by combining direct rehabilitative interventions with attention to social context and systemic working across agencies. (JINS, 2019, 25, 403-412).

The nature of self-esteem and its relationship to anxiety and depression in adult acquired brain injury.

Acquired brain injury (ABI) has a negative impact on self-esteem, which is in turn associated with mood disorders, maladaptive coping and reduced community participation. The aim of the current research was to explore self-esteem as a multi-dimensional construct and identify which factors are associated with symptoms of anxiety or depression. Eighty adults with ABI aged 17-56 years completed the Robson Self-Esteem Scale (RSES), of whom 65 also completed the Hospital Anxiety and Depression Scale; 57.5% of the sample had clinically low self-esteem. The RSES had good internal consistency (α = .89), and factor analysis identified four factors, which differed from those found previously in other populations. Multiple regression analysis revealed anxiety was differentially predicted by "Self-Worth" and "Self-Efficacy", R2 = .44, F(4, 58) = 9, p < .001, and depression by "Self-Regard", R2 = .38, F(4, 58) = 9, p < .001. A fourth factor, "Confidence", did not predict depression or anxiety. In conclusion, the RSES is a reliable measure of self-esteem after ABI. Self-esteem after ABI is multidimensional and differs in structure from self-esteem in the general population. A multidimensional model of self-esteem may be helpful in development of transdiagnostic cognitive behavioural accounts of adjustment.

A pilot investigation of the potential for incorporating lifelog technology into executive function rehabilitation for enhanced transfer of self-regulation skills to everyday life.

The objective of the study was to identify the potential target and effect size of goal management training (GMT) enhanced with life-logging technology compared with standard GMT on a range of possible primary outcomes reflecting cognitive and ecological aspects of executive functioning and quality of life. Sixteen patients with acquired brain injury involving executive dysfunction were randomly allocated to one of the two interventions: seven weeks of GMT (n = 8), or seven weeks of GMT+Lifelog (n = 8). Outcome measures included a battery of executive function tests, the Dysexecutive Questionnaire (DEX) and the Quality of Life after Brain Injury scale (QOLIBRI), measured pre- and post-interventions. Within-group changes were assessed with related-samples t-tests and estimation of effect sizes. GMT+Lifelog was associated with significant changes, of medium to large effect size, in response inhibition (Stroop), multitasking (Strategy Application and Multiple Errand tests), DEX Intentionality and Positive Affect subscales and QOLIBRI Daily Life and Autonomy, subscales. GMT alone was associated with significant changes of overall quality of life. It was concluded that GMT+Lifelog holds promise to optimise the impact of GMT on executive dysfunction and quality of life.

Measuring coping style following acquired brain injury: a modification of the Coping Inventory for Stressful Situations Using Rasch analysis.

OBJECTIVE: The importance of coping style factors in the process of emotional adjustment following acquired brain injury (ABI) has been gaining increased attention. To assess ways of coping with distress accurately, clear conceptual definitions and measurement precision is vital. The purpose of this study was to investigate the psychometric properties of a well-known measure of coping, the Coping Inventory for Stressful Situations (CISS), for people who have experienced an ABI; and to modify the CISS, where necessary, to create a more reliable and valid measurement tool for this clinical group. METHODS: Psychometric properties were investigated using Rasch analysis of responses from a sample of adults with ABI (n = 207). The internal consistency reliability and construct validity of the scale were examined. RESULTS: All originally proposed subscales were not valid or reliable and, as such, were incapable of interval-level measurement within this sample - Task: χ(2) (32, N = 207) = 105.1, p < .001; Emotion: χ(2) (32, N = 204) = 121.9, p < .001; Avoidance: χ(2) (32, N = 207) = 66.7, p < .001. Three valid and reliable subscales were derived measuring emotion-, task-, and avoidance-oriented coping styles by removing items that provided the most unreliable information and exploring fit to the Rasch model. CONCLUSIONS: The original version of the CISS may not be a valid and reliable measure of coping style following ABI. Modified subscales of the three distinct coping domains have been proposed that would help to improve measurement of coping style following ABI in future research and clinical practice. PRACTITIONER POINTS: How people cope with difficulties following an ABI has been shown to impact upon emotional outcomes and functional recovery. The original version of the CISS was found to be an imprecise measure of coping following ABI. A modified version of the CISS was found to be a valid and reliable measure of three styles of coping (task-focused, emotion-focused, and avoidance-focused) that conforms to the properties of interval-level measurement as represented by the Rasch model. This structure is in keeping with previous theoretical models of coping. We advise caution about including items (1, 6, 7, 22, 24, 28, 29, 33, 34, and 46) that were found to diverge from the expectations of the Rasch measurement model in total subscale scores for measuring change in coping style. A conversion table for the three modified subscales is included in this paper to convert total raw scores into Rasch transformed logit values. Identifying strengths and weaknesses in coping style could be a means of guiding psychological intervention to promote good recovery following ABI. The sample included mainly people who had experienced non-traumatic brain injuries (e.g., a stroke). This research could be extended to include broader sample of people with differing brain injury aetiologies and neurological disorders.

Investigating the reporting of participant characteristics relating to health equity in randomised controlled trials of non-pharmacological interventions for post-stroke anxiety and/or depression: a scoping review.

PURPOSE: The review aims to identify what characteristics are reported in randomised controlled trials for the non-pharmacological management of post-stroke anxiety and/or depression and whether research has explored the correlation between participant characteristics and their outcomes. METHODS: A comprehensive systematic search was completed of five databases: CINAHL, Medline, PsychInfo, Web of Science, and The World Health Organisation. Google Scholar was also accessed. The reporting of participant characteristics was assessed by adapting the PROGRESS-Plus framework, a research framework of protected characteristics known to impact health equity (such as, age). RESULTS: 19 papers (n = 2187) were included. There was generally poor reporting of characteristics associated with an increased likelihood of post-stroke anxiety and/or depression. All studies reported the gender/sex of participants, 18 studies reported the age of participants, and 11 studies reported lesion location. None of the studies reported the sexual orientation or pre-existing disabilities of participants. CONCLUSION: There was variation in the reporting and analyses of protected characteristics. Future research should follow a health equity framework to ensure reporting of protected characteristics to support clinicians in identifying whether the proposed interventions are relevant to their stroke population and consider undergoing subgroup analyses to compare outcomes across protected characteristics.

Overall review on the reporting of protected characteristics known to impact the engagement with services and outcomes of stroke survivors.Reviewing the lack of reporting on who is taking part in stroke research and how this impacts evidence-based practice in stroke services.Identifying how demographic and social factors can impact post-stroke anxiety and depression rehabilitation.Supporting the understanding of the effectiveness of non-pharmacological interventions for post-stroke anxiety and/or depression across subgroups.Identification of which characteristics should be reported in services and in stroke rehabilitation research.Furthering the consideration of health equity in stroke rehabilitation research.

Post-stroke emotionalism: Diagnosis, pathophysiology, and treatment.

BACKGROUND: Post-stroke emotionalism affects one in five stroke sufferers 6 months after their stroke, but despite its frequency remains a poorly understood stroke symptom. The literature is limited, especially compared to other frequently observed neurological conditions such as aphasia and visual neglect. AIM AND METHODS: This narrative review presents a summary of the post-stroke emotionalism literature, to inform clinical practice and future research. We cover discussion of definitions, prevalence, neurobiology, predisposing and precipitating factors, and treatment. RESULTS: Increasing evidence suggests that damage to specific areas functionally linked to emotion expression or regulation processes, disruption to structural pathways and those related to serotonin production and modulation individually or in concert give rise to emotionalism-type presentations. A range of emotionalism measurement tools have been used in research contexts making between study comparisons difficult. Testing for Emotionalism after Recent Stroke-Questionnaire (TEARS-Q) has recently been developed to allow standardized assessment. Treatment options are limited, and there have been few adequately powered treatment trials. Antidepressants may reduce severity, but more trial data are required. There have been no randomized-controlled trials of non-pharmacological interventions. CONCLUSIONS: More research is needed to improve recognition and treatment of this common and disabling symptom. We conclude with research priorities and recommendations for the field.

Group-based positive psychotherapy for people living with acquired brain injury: a protocol for a feasibility study.

BACKGROUND: Acquired brain injury (ABI) and other chronic conditions are placing unprecedented pressure on healthcare systems. In the UK, 1.3 million people live with the effects of brain injury, costing the UK economy approximately £15 billion per year. As a result, there is an urgent need to adapt existing healthcare delivery to meet increasing current and future demands. A focus on wellbeing may provide an innovative opportunity to reduce the pressure on healthcare services while also supporting patients to live more meaningful lives. The overarching aims of the study are as follows: (1) evaluate the feasibility of conducting a positive psychotherapy intervention for individuals with ABI and (2) ascertain under what conditions such an intervention would merit a fully powered randomised controlled trial (RCT) compared to a standard control group (TAU). METHODS AND ANALYSIS: A randomised, two-arm feasibility trial involving allocation of patients to either a treatment group (positive psychotherapy) or control group (treatment as usual) group, according to a 1:1 ratio. A total of 60 participants at three sites will be recruited including 20 participants at each site. Assessments will be conducted at baseline, on completion of the 8-week intervention and 3 months following completion. These will include a range of questionnaire-based measures, psychophysiology and qualitative outcomes focusing on feasibility outcomes and participant experience. This study has been approved by the Wales Research Ethics Committee (IRAS project ID: 271,251, REC reference: 19/WA/0336). DISCUSSION: This study will be the first to examine the feasibility of an innovative, holistic positive psychotherapy intervention for people living with ABI, focused on individual, collective and planetary wellbeing, and will enable us to determine whether to proceed to a full randomised controlled trial. TRIAL REGISTRATION: ISRCTN12690685 , registered 11th November 2020.

Developing the 'Life Threads' approach to support families after traumatic brain injury in UK community settings: protocol for a qualitative prefeasibility study.

INTRODUCTION: Traumatic brain injury (TBI) brings about inevitable and significant changes for family members. Mental health effects for family members are well documented but there are significant gaps in support options across services. Here, we describe our protocol for a study that seeks to investigate the potential for a narrative, creative approach, the 'Life Threads' approach, as a low intensity, accessible means of support that can be applied across service contexts. METHODS: We will recruit 20 family members of someone who sustained a TBI from services in an area of the UK with a diverse demographic. Family members will be provided with the 'Life Threads' approach materials and guided in their use. The study is planned to run from March 2023 to July 2024. ANALYSIS: Collection of data on potential usefulness, feasibility and acceptability will be through focus groups and individual interviews. Transcripts will be analysed using reflexive thematic analysis, conducted within a relativist, constructivist orientation. ETHICS AND DISSEMINATION: Ethical approvals have been sought and gained (Nottingham 1 Research Ethics Committee, 23/EM/0185, 4 September 2023), and the study has been registered with ISRCTN. As a research team, we are guided by our own personal, professional and research experiences of TBI which we will consider reflexively throughout the research process. Results will be disseminated in collaboration with our patient and public involvement group through open peer-reviewed journal publication and scientific conference, with lay summaries shared via recruitment sites. TRIAL REGISTRATION NUMBER: ISRCTN17392794.

Adapting a Dutch Web-Based Intervention to Support Family Caregivers of People With Dementia in the UK Context: Accelerated Experience-Based Co-Design.

BACKGROUND: Around 700,000 family caregivers provide unpaid care for 900,000 people living with dementia in the United Kingdom. Few family caregivers receive support for their own psychological needs and funding for community respite services has declined. These trends are seen across Europe as demographic and budgetary pressures have intensified due to public spending cuts arising from the 2008 financial crisis and the COVID-19 pandemic. The World Health Organization has prioritized the need to expand the provision of support for caregivers and families of people with dementia by 2025. Web-based interventions have the potential for development as they require modest investment and can be accessed by family caregivers at home. Further cost benefits can be realized by adapting existing interventions with demonstrated effectiveness for new contexts. This paper reports initial findings from the CareCoach study, which is adapting Partner in Balance (PiB), a web-based coaching intervention developed in the Netherlands, for family caregivers in the United Kingdom. OBJECTIVE: This study aims to work with unpaid family caregivers and staff in adapting the Dutch web-based support tool PiB to improve its acceptability and usability for use in the United Kingdom. METHODS: Accelerated Experience-Based Co-Design (AEBCD) was used with caregivers, staff, and core stakeholders. Interviews, workshops, and stakeholder consultations were conducted. Data were analyzed iteratively. Recommendations for the redesign of PiB for use across the United Kingdom were adjudicated by the study Adaptation Working Party. RESULTS: Sixteen caregivers and 17 staff took part in interviews. Thirteen caregivers and 17 staff took part in workshops. Most (n=26) participants were White, female, and retired. All except 4 caregivers (2 male and 2 female) found the PiB's offer of web-based self-help learning acceptable. Caregivers identified complexity and lack of inclusivity in some wording and video resources as problematic. The staff took a stronger perspective on the lack of inclusivity in PiB video resources. Staff and caregivers coproduced new inclusive wording and recommended creating new videos to adapt PiB for the UK context. CONCLUSIONS: AEBCD methods facilitated the engagement of caregivers and staff and advanced the adaptation of the PiB complex intervention. An important addition to the AEBCD method in this process was the work of an Adaptation Working Party, which adjudicated and agreed to new wording where this could not be established in consultation with caregivers and staff. TRIAL REGISTRATION: ISRCTN Registry ISRCTN12540555; https://doi.org/10.1186/ISRCTN12540555.

An Evaluation of the Use of the Child and Adolescent Scale of Participation (CASP) to Measure Social Participation After Pediatric ABI in a Specialist Service in East Anglia.

Pediatric acquired brain injury (ABI) can lead to lifelong challenges restricting social participation, which is an important goal for rehabilitation due to associations with improved wellbeing. This evaluation considered the utility of the Child Adolescent Scale of Participation (CASP) in ABI rehabilitation services. The 20-item measure is rated on a Likert scale with reference to what the rater would expect of their child at that age, including "not applicable" (N/A). It showed high internal consistency (α = 0.954-0.968). Two-step cluster analysis indicated greater difficulties in children with lower participation, including more impairments of executive function and higher staff involvement. Between-group analysis indicated higher rates of N/A answers for younger children and those of ethnic minorities. Overall, the CASP is reliable and clinically useful on an individual level, helping identify people who may need prioritizing for neurorehabilitation; however, group-level analyses were more challenging due to high frequency of N/A responses.