Re-building relationships after a spinal cord injury: experiences of family caregivers and care recipients.

BACKGROUND: Following spinal cord injury (SCI), family members are often called upon to undertake the caregiving role. This change in the nature of the relationship between the individuals with SCI and their families can lead to emotional, psychological, and relationship challenges. There is limited research on how individuals with SCI and their family caregivers adapt to their new lives post-injury, or on which dyadic coping strategies are used to maintain relationships. Thus, the objectives of this study were to obtain an in-depth understanding of 1) the experiences and challenges within a caregiving relationship post-SCI among spouses, as well as parents and adult children; and 2) the coping strategies used by caregivers and care recipients to maintain/rebuild their relationships. METHODS: A qualitative descriptive approach with an exploratory design was used. Semi-structured face-to-face and telephone interviews were conducted. Thematic analysis was used to identify key themes arising from individuals with SCI's (n = 19) and their family caregivers' (n = 15) experiences. RESULTS: Individuals with SCI and family caregivers spoke in-depth and openly about their experiences and challenges post-injury, with two emerging themes (including subsequent sub-themes). The first theme of deterioration of relationship, which reflects the challenges experienced/factors that contributed to disintegration in a relationship post-injury, included: protective behaviours, asymmetrical dependency, loss of sex and intimacy, and difficulty adapting. The second theme of re-building/maintaining the relationship, which reflects the strategies used by dyads to adjust to the changes within the relationship brought upon by the injury, included: interdependence, shifting commonalities, adding creativity into routine, and creating a new normal. CONCLUSIONS: These findings should alert healthcare professionals and peer support groups as to the need for possible education and training (e.g., coping strategies, communication skills training) as well as counseling prior to discharge to assist individuals with SCI and family caregivers with adaptation to a new life post-injury.

Peer support interventions for individuals with acquired brain injury, cerebral palsy, and spina bifida: a systematic review.

BACKGROUND: Neurological disorders may negatively impact community integration and/or quality of life. Peer support has emerged as a potential strategy to enhance patients' efficacy in managing their own health. This review examines the key characteristics and impact of peer support interventions for adults with acquired brain injury, cerebral palsy, and spina bifida on community integration and quality of life. METHODS: Eligible studies reported on peer support interventions for adults (16 years of age or older) with acquired brain injury, cerebral palsy, or spina bifida. Only randomized controlled trials published in English in the last 10 years were included. MEDLINE, EMBASE, PsycINFO, and CINAHL were used to conduct the literature search. Two reviewers independently screened studies, abstracted data, and evaluated the risk of bias (for individual study elements and overall) using the Cochrane Risk of Bias Tool. RESULTS: The systematic review included 6 trials reporting on acquired brain injury only. Of these studies, 4 reported on stroke and 2 reported on traumatic brain injury. Two studies found significant improvements in quality of life following peer support. No studies reported significant results on community integration. Considerable heterogeneity existed in the key characteristics of interventions. CONCLUSIONS: There are a limited number of studies on the impact of peer support interventions for adults with acquired brain injury, cerebral palsy, or spina bifida on community integration and quality of life. Standardization of key intervention characteristics may aid the global adoption of peer support as a formalized, evidence-based practice.

Supporting the implementation of stroke quality-based procedures (QBPs): a mixed methods evaluation to identify knowledge translation activities, knowledge translation interventions, and determinants of implementation across Ontario.

BACKGROUND: In 2013, Health Quality Ontario introduced stroke quality-based procedures (QBPs) to promote use of evidence-based practices for patients with stroke in Ontario hospitals. The study purpose was to: (a) describe the knowledge translation (KT) interventions used to support stroke QBP implementation, (b) assess differences in the planned and reported KT interventions by region, and (c) explore determinants perceived to have affected outcomes. METHODS: A mixed methods approach was used to evaluate: activities, KT interventions, and determinants of stroke QBP implementation. In Phase 1, a document review of regional stroke network work plans was conducted to capture the types of KT activities planned at a regional level; these were mapped to the knowledge to action framework. In Phase 2, we surveyed Ontario hospital staff to identify the KT interventions used to support QBP implementation at an organizational level. Phase 3 involved qualitative interviews with staff to elucidate deeper understanding of survey findings. RESULTS: Of the 446 activities identified in the document review, the most common were 'dissemination' (24.2%; n = 108), 'implementation' (22.6%; n = 101), 'implementation planning' (15.0%; n = 67), and 'knowledge tools' (10.5%; n = 47). Based on survey data (n = 489), commonly reported KT interventions included: staff educational meetings (43.1%; n = 154), champions (41.5%; n = 148), and staff educational materials (40.6%; n = 145). Survey participants perceived stroke QBP implementation to be successful (median = 5/7; interquartile range = 4-6; range = 1-7; n = 335). Forty-four people (e.g., managers, senior leaders, regional stroke network representatives, and frontline staff) participated in interviews/focus groups. Perceived facilitators to QBP implementation included networks and collaborations with external organizations, leadership engagement, and hospital prioritization of stroke QBP. Perceived barriers included lack of funding, size of the hospital (i.e., too small), lack of resources (i.e., staff and time), and simultaneous implementation of other QBPs. CONCLUSIONS: Information on the types of activities and KT interventions used to support stroke QBP implementation and the key determinants influencing uptake of stroke QBPs can be used to inform future activities including the development and evaluation of interventions to address barriers and leverage facilitators.

Health and Community-Based Services for Individuals with Neurological Conditions.

BACKGROUND: The current study involves a national survey of healthcare providers who offer services for individuals with a variety of neurological conditions. It aims to describe the provision of health and community-based services as well as the admission criteria, waitlist practices, and referral sources of these services. METHODS: An online survey was directed at administrators/managers from publicly funded hospital programs, long-term care homes, and community-based healthcare provider agencies that were believed to be providing information and/or services to patients with a variety of neurological conditions. RESULTS: Approximately 60% (n=254) of respondents reported providing services in either urban/suburban areas or rural/remote areas only, whereas the remaining 40% (n=172) provided services regardless of patient location. A small proportion of respondents reported providing services for individuals with dystonia (28%), Tourette syndrome (17%), and Rett syndrome (13%). There was also a paucity of diverse healthcare professionals across all institutions, but particularly mental healthcare professionals in hospitals. Lastly, the majority of respondents reported numerous exclusion criteria with regard to service provision, including prevalent comorbid conditions. CONCLUSIONS: If the few services provided for these neurological patient populations exclude common comorbidities, it is likely that there will be no other place for these individuals to seek care.

Perspectives of health care professionals on the facilitators and barriers to the implementation of a stroke rehabilitation guidelines cluster randomized controlled trial.

BACKGROUND: The Stroke Canada Optimization of Rehabilitation by Evidence Implementation Trial (SCORE-IT) was a cluster randomized controlled trial that evaluated two knowledge translation (KT) interventions for the promotion of the uptake of best practice recommendations for interventions targeting upper and lower extremity function, postural control, and mobility. Twenty rehabilitation centers across Canada were randomly assigned to either the facilitated or passive KT intervention. The objective of the current study was to understand the factors influencing the implementation of the recommended treatments and KT interventions from the perspective of nurses, occupational therapists and physical therapists, and clinical managers following completion of the trial. METHODS: A qualitative descriptive approach involving focus groups was used. Thematic analysis was used to understand the factors influencing the implementation of the recommended treatments and KT interventions. The Clinical Practice Guidelines Framework for Improvement guided the analysis. RESULTS: Thirty-three participants were interviewed from 11 of the 20 study sites (6 sites from the facilitated KT arm and 5 sites from the passive KT arm). The following factors influencing the implementation of the recommended treatments and KT interventions emerged: facilitation, agreement with the intervention - practical, familiarity with the recommended treatments, and environmental factors, including time and resources. Each of these themes includes the sub-themes of facilitator and/or barrier. Improved team communication and interdisciplinary collaboration emerged as an unintended outcome of the trial across both arms in addition to a facilitator to the implementation of the treatment recommendations. Facilitation was identified as a facilitator to implementation of the KT interventions in the passive KT intervention arm despite the lack of formally instituted facilitators in this arm of the trial. CONCLUSIONS: This is one of the first studies to examine the factors influencing the implementation of stroke recommendations and associated KT interventions within the context of a trial. Findings highlight the important role of self-selected facilitators to implementation efforts. Future research should seek to better understand the specific characteristics of facilitators that are associated with successful implementation and clinical outcomes, especially within the context of stroke rehabilitation.

Meaning of self-management from the perspective of individuals with traumatic spinal cord injury, their caregivers, and acute care and rehabilitation managers: an opportunity for improved care delivery.

BACKGROUND: The trend of decreasing length of stay in rehabilitation facilities has led to individuals with spinal cord injury (SCI) entering the community with unmet needs and fewer self-care skills to prevent secondary complications. The implementation of a self-management program for individuals with SCI for the management of these complex needs, including secondary complications, may be one option to fill these care gaps. A greater understanding of the meaning of self-management may facilitate the development of a tailored self-management program in this population. Thus, the current research aims to understand the meaning of self-management in traumatic SCI from the perspectives of individuals with traumatic SCI and their caregivers as well as acute care/trauma and rehabilitation managers. METHODS: A descriptive qualitative approach was used. Semi-structured telephone interviews were conducted with 26 individuals with traumatic SCI, their family members/caregivers, and managers from acute care/trauma and rehabilitation centres. Inductive thematic analysis was applied. RESULTS: The meaning of self-management in SCI related to two overarching themes of internal and external responsibility attribution and revealed differences between the meaning of self-management in SCI among individuals with traumatic SCI and their caregivers versus managers. Overall, the meaning of self-management among the SCI and caregiver participants related principally to internal responsibility attribution. For the manager participants, the meaning of self-management was much narrower and the overarching theme of internal responsibility attribution that was observed among the SCI-caregiver dyads was not as widely expressed by this group. CONCLUSIONS: Interventions that are co-created by users and health care professionals are associated with positive physical and mental health outcomes. Thus, the understanding of self-management from these varying perspectives could be applied to the development of a tailored self-management program that is relevant to individuals with traumatic SCI and their caregivers. This may involve the development of a program that uses some of the structure of traditional chronic disease self-management programs, in accordance with the beliefs held by the managers, but also incorporates elements of wellness/health promotion interventions, in accordance with the beliefs held by the SCI and caregiver participants.

Perceived facilitators and barriers to self-management in individuals with traumatic spinal cord injury: a qualitative descriptive study.

BACKGROUND: Current evidence has suggested the need for increased self-management support efforts in spinal cord injury (SCI) to reduce secondary complications. However, current self-management programs may not be suitable for the unique needs of individuals with SCI, including reduced mobility and the importance of attendant care. There is a need for greater understanding of the self-management strategies adopted by individuals with SCI and the potential need for a tailored self-management program. Thus, the purpose of the current study was to understand the perceived facilitators and barriers to self-management to prevent secondary complications. METHODS: A descriptive qualitative approach was used and involved telephone interviews. Semi-structured interviews were conducted with individuals with traumatic SCI, their family members/caregivers, and managers from acute care/trauma and rehabilitation centres. Participants were recruited between September 2011 and May 2012. Analysis was conducted using inductive thematic analysis to understand the perceived facilitators and barriers to self-management to prevent secondary complications. RESULTS: A total of 26 interviews were conducted and they included 7 individuals with traumatic SCI, 7 family/caregivers (i.e., 7 SCI-caregiver dyads), and 12 acute care/rehabilitation managers from across the province of Ontario. The following five facilitators to self-management were identified: physical support from the caregiver, emotional support from the caregiver, peer support and feedback, importance of positive outlook and acceptance, and maintaining independence/control over care. The following five barriers to self-management were identified: caregiver burnout, funding and funding policies, lack of accessibility, physical limitations and secondary complications, and difficulties achieving positive outlook or mood. CONCLUSIONS: This study demonstrated that the caregiver and the individual's own mood/outlook, among other facilitators and barriers, make significant contributions to the self-management of individuals with traumatic SCI. The issues of timing/readiness and comorbidities and aging were observed across many of these themes. As such, the development of a tailored self-management program for individuals with traumatic SCI and their caregivers should incorporate these considerations.

Systems analysis of community and health services for acquired brain injury in Ontario, Canada.

PRIMARY OBJECTIVE: To conduct a systems analysis on community and health services for individuals with acquired brain injury (ABI) in the province of Ontario, Canada. RESEARCH DESIGN: This study employed a triangulation design. This design is used when there is a need to validate quantitative results with qualitative data, as is the case in the present study. METHODS AND PROCEDURES: Forty-two healthcare professionals and/or healthcare administrators from organizations across the province and across the continuum of care were surveyed. A 1-day focus group was also held to validate the study findings. MAIN OUTCOMES AND RESULTS: The main results of this study revealed: (1) a lack of services for children/adolescents; (2) service gaps for individuals with co-existing mental health conditions; (3) a lack of services related to employment; (4) changes in casemix, in terms of more individuals with co-morbid medical and mental health conditions (with many of the organizations reporting medical instability and severe behavioural disorders as exclusion criteria); and (5) a need for more organizations to track patient outcomes for evaluation and/or accountability purposes. CONCLUSIONS: Findings from this study will lead to improvement of current services but also improved planning of future services for individuals with ABI.

Understanding the use of co-design methods for research involving older adults living with HIV: A scoping review protocol.

There is a growing population of adults aged 50 years or older living with HIV, facing unique challenges in care due to age, minority status, and stigma. Co-design methodologies, aligning with patient-centered care, have potential for informing interventions addressing the complex needs of older adults with HIV. Despite challenges, co-design has shown promise in empowering older individuals to actively participate in shaping their care experiences. The scoping review outlined here aims to identify gaps in existing co-design work with this population, emphasizing the importance of inclusivity based on PROGRESS-Plus characteristics for future patient-oriented research. This scoping review protocol is informed by the Joanna Briggs Institute Manual to explore co-design methods in geriatric HIV care literature. The methodology encompasses six stages: 1) developing research questions, 2) creating a search strategy, 3) screening and selecting evidence, 4) data extraction, 5) data analysis using content analysis, and 6) consultation with key stakeholders, including community partners and individuals with lived experience. The review will involve a comprehensive literature search, including peer-reviewed databases and gray literature, to identify relevant studies conducted in the past 20 years. The inclusive criteria focus on empirical data related to co-design methods in HIV care for individuals aged 50 or older, aiming to inform future research and co-design studies in geriatric HIV care. The study will be limited by the exclusion of papers not published or translated to English. Additionally, the varied terminology used to describe co-design across different research may result in the exclusion of articles using alternative terms. The consultation with key stakeholders will be crucial for translating insights into meaningful co-design solutions for virtual HIV care, aiming to provide a comprehensive synthesis that informs evidence-based strategies and addresses disparities in geriatric HIV care.

Conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities: a scoping review.

Introduction: To examine the scope of existing literature on the conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities. Methods: A protocol was developed based on the Joanna Briggs Institute (JBI) scoping review method. MEDLINE, EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, and EBSCOhost CINAHL, were searched. Results: Eight studies were selected for inclusion; four used quantitative methodology, and four used qualitative methods. Compassion was not defined a priori or a posteriori in any of the included studies. The concept of self-compassion was explicitly defined only for parents of youth with childhood-onset disabilities in three studies a priori. The most reported outcome measure was self-compassion in parents of youth with childhood-onset disabilities. Self-compassion among parents was associated with greater quality of life and resiliency and lower stress, depression, shame and guilt. Discussion: There is limited evidence on the conceptualization, use, and outcomes associated with compassion among youth with childhood-onset disabilities. Self-compassion may be an effective internal coping process among parents of youth with childhood-onset disabilities. Further research is required to understand the meaning of compassion to youth with childhood-onset disabilities, their parents and caregivers. Systematic review registration: https://doi.org/10.17605/OSF.IO/2GRB4.

A Web-Based Peer-Patient Navigation Program (Compassionate Online Navigation to Enhance Care Transitions) for Youth Living With Childhood-Acquired Disabilities Transitioning From Pediatric to Adult Care: Qualitative Descriptive Study.

BACKGROUND: Studies have highlighted significant challenges associated with the transition from pediatric to adult health and social care services for youth living with childhood-acquired disabilities and their caregivers. Patient navigation has been proposed as an effective transitional care intervention. Better understanding of how patient navigation may support youth and their families during pediatric to adult care transitions is warranted. OBJECTIVE: This study aims to describe the preferred adaptations of an existing web-based platform from the perspectives of youth with childhood-onset disabilities and their family caregivers to develop a web-based peer-patient navigation program, Compassionate Online Navigation to Enhance Care Transitions (CONNECT). METHODS: A qualitative descriptive design was used. Participants included youth living with childhood-acquired disabilities (16/23, 70%) and their caregivers (7/23, 30%). Semistructured interviews and focus groups were conducted, digitally recorded, and transcribed. Thematic analysis was used to analyze the data and was facilitated through NVivo software (Lumivero). RESULTS: Participants desired a program that incorporated (1) self-directed learning, (2) a library of reliable health and community resources, and (3) emotional and social supports. On the basis of participants' feedback, CONNECT was deemed satisfactory, as it was believed that the program would help support appropriate transition care through the provision of trusted health-related information. Participants highlighted the need for options to optimize confidentiality in their health and social care and the choice to remain anonymous to other participants. CONCLUSIONS: Web-based patient navigation programs such as CONNECT may deliver peer support that can improve the quality and experience of care for youth, and their caregivers, transitioning from pediatric to adult care through personalized support, health care monitoring, and health and social care resources. Future studies are needed to test the feasibility, acceptability, usability, use, and effectiveness of CONNECT among youth with childhood-onset disabilities.

Quality Indicators for Transition from Paediatric to Adult Care for Youth with Chronic Conditions: Protocol for an Online Modified Delphi Study.

BACKGROUND: The transition from paediatric to adult care poses a significant health system-level challenge impeding the delivery of quality health services for youth with chronic health conditions. In Canada and globally, the transition to adult care is regarded as a top priority in adolescent health in need of readily applicable, adaptable, and relevant national metrics to evaluate and benchmark transition success across disease populations and clinical care settings. Unfortunately, existing literature fails to account for the lack of engagement from youth and caregivers in developing indicators, and its applicability across chronic conditions, primary care involvement, and health equity considerations. OBJECTIVE: Our proposed study aims to establish a consensus-driven set of quality indicators for the transition to adult care that are universally applicable across physical, developmental, and/or mental health conditions, clinical care settings, and health jurisdictions. METHODS: Using an integrated knowledge translation (iKT) approach, a panel comprised of youth, caregivers, interdisciplinary healthcare providers, and health system leaders will be established to collaborate with our research team to ensure the study methodology, materials, and knowledge dissemination are suitable and reflect the perspectives of youth and their families. We will then conduct an iterative 3-round Online Modified Delphi (OMD) study (n= 160) to (1) compare and contrast the perspectives of youth, caregivers, health care providers, and health system leaders on quality indicators for transition, and (2) prioritize a key set of quality indicators for transition applicable across disease populations that are the most important, useful, and feasible in the Canadian context. Using the RAND/UCLA Appropriateness Method (RAM) multi-stage analytic approach, data from each panel and stakeholder group will be examined separately and compared to establish a key set of indicators endorsed by both panels. RESULTS: The study is funded by the Canadian Institutes of Health Research and Physicians Services Incorporated. CONCLUSIONS: This study will produce quality indicators to evaluate and inform action equitably to improve transition from paediatric to adult care for youth and their families in Canada.

Patient, caregiver and other knowledge user engagement in consensus-building healthcare initiatives: a scoping review protocol.

INTRODUCTION: Patient engagement and integrated knowledge translation (iKT) processes improve health outcomes and care experiences through meaningful partnerships in consensus-building initiatives and research. Consensus-building is essential for engaging a diverse group of experienced knowledge users in co-developing and supporting a solution where none readily exists or is less optimal. Patients and caregivers provide invaluable insights for building consensus in decision-making around healthcare, policy and research. However, despite emerging evidence, patient engagement remains sparse within consensus-building initiatives. Specifically, our research has identified a lack of opportunity for youth living with chronic health conditions and their caregivers to participate in developing consensus on indicators/benchmarks for transition into adult care. To bridge this gap and inform our consensus-building approach with youth/caregivers, this scoping review will synthesise the extent of the literature on patient and other knowledge user engagement in consensus-building healthcare initiatives. METHODS AND ANALYSIS: Following the scoping review methodology from Joanna Briggs Institute, published literature will be searched in MEDLINE, EMBASE, CINAHL and PsycINFO databases from inception to July 2023. Grey literature will be hand-searched. Two independent reviewers will determine the eligibility of articles in a two-stage process, with disagreements resolved by a third reviewer. Included studies must be consensus-building studies within the healthcare context that involve patient engagement strategies. Data from eligible studies will be extracted and charted on a standardised form. Abstracted data will be analysed quantitatively and descriptively, according to specific consensus methodologies, and patient engagement models and/or strategies. ETHICS AND DISSEMINATION: Ethics approval is not required for this scoping review protocol. The review process and findings will be shared with and informed by relevant knowledge users. Dissemination of findings will also include peer-reviewed publications and conference presentations. The results will offer new insights for supporting patient engagement in consensus-building healthcare initiatives. PROTOCOL REGISTRATION: https://osf.io/beqjr.

Understanding data collection strategies for the ethical inclusion of older adults with disabilities in transitional care research: A scoping review protocol.

INTRODUCTION: A growing body of evidence suggests that older adults are particularly vulnerable to poor care as they transition across care environments. Thus, they require transitional care services as they transition across healthcare settings. To help make intervention research meaningful to the older adults the intervention aims to serve, many researchers aim to study their experiences, by actively involving them in research processes. However, collecting data from older adults with various forms of disability often assumes that the research methods selected are appropriate for them. This scoping review will map the evidence on research methods to collect data from older adults with disabilities within the transitional care literature. METHODS: The proposed scoping review follows the framework originally described by the Joanna Briggs Institute (JBI) Manual: (1) developing a search strategy, (2) evidence screening and selection, (3) data extraction; and (4) analysis. We will include studies identified through a comprehensive search of peer-reviewed and empirical literature reporting on research methods used to elicit the experiences of older adults with disabilities in transitional care interventions. In addition, we will search the reference lists of included studies. The findings of this review will be narratively synthesized. The Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews will guide the reporting of the methods and results. DISCUSSION: The overarching goal of this study is to develop strategies to assist the research community in increasing the inclusion of older adults with disabilities in transitional care research. The findings of this review will highlight recommendations for research to inform data collection within future intervention research for older adults with disabilities. Study findings will be disseminated via a publication and presentations.

"I Have Eight Different Files at Eight Different Places": Perspectives of Youths and Their Family Caregivers on Transitioning from Pediatric to Adult Rehabilitation and Community Services.

INTRODUCTION: The number of young adults (youth) living with childhood-onset disabilities, and requiring transitional support to adult community and rehabilitation services, is increasing. We explored facilitators and barriers to accessing and sustaining community and rehabilitation services during the transition from pediatric to adult care. METHODS: A qualitative descriptive study was conducted in Ontario, Canada. Data were collected through interviews with youth (n = 11) and family caregivers (n = 7). The data were coded and analyzed using thematic analysis. RESULTS: Youth and caregivers face many types of transitions from pediatric to adult community and rehabilitation services, e.g., those related to education, living arrangements, and employment. This transition is marked by feelings of isolation. Supportive social networks, continuity of care (i.e., same care providers), and advocacy all contribute to positive experiences. Lack of knowledge about resources, changing parental involvement without preparation, and a lack of system responses to evolving needs were barriers to positive transitions. Financial circumstances were described as either a barrier or facilitator to service access. CONCLUSIONS: This study demonstrated that continuity of care, support from providers, and social networks all contribute markedly to the positive experience of transitioning from pediatric to adult services for individuals with childhood-onset disabilities and family caregivers. Future transitional interventions should incorporate these considerations.

Conceptualization of frailty in rehabilitation interventions with adults: a scoping review.

Purpose: We aimed to synthesize the literature that considered frailty in the evaluation of rehabilitation interventions for adults (aged ≥18) by answering: (1) how is frailty defined in rehabilitation intervention research?; (2) how is frailty operationalized in rehabilitation intervention research?; (3) what are the characteristics of rehabilitation interventions for frail adults and what frailty related outcomes are assessed?Materials and methods: A scoping review was conducted. Data were analyzed using descriptive statistics and qualitative content analysis.Results: 53 articles met the inclusion criteria. Most studies were conducted in Europe and involved randomized control trials. The included studies reported on rehabilitation interventions that only included individuals aged 50 or older. Thirteen studies used Fried's definition of frailty, but most (n = 27) did not use any definition. Many studies did not differentiate between the conceptualization (e.g., definition) and operationalization (e.g., use of inclusion/exclusion criteria, outcome measures) of frailty. Most interventions focused on exercise. Instrumental activities of daily living reported most frequently as outcomes (n = 11).Conclusions: There is an absence of consistent definitions of frailty in rehabilitation interventions and current definitions tend to focus on physical functioning. The authors suggest rehabilitation researchers consider an expanded definition of frailty informed by the International Classification of Functioning, Disability and Health framework.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals should use an expanded definition of frailty, informed by the International Classification of Functioning, Disability and Health framework, should include physical, mental, personal, environmental, and social factors to decrease, delay, or prevent frailty in adults.Rehabilitation professionals should consider a broader operationalization of frailty that is not dependent on age and physical functioning.Rehabilitation professionals that consider a broader conceptualization of frailty should tailor interventions to the specific needs of frail adults.

Psychological interventions for individuals with Ehlers-Danlos syndrome and hypermobility spectrum disorder: a scoping review.

PURPOSE: To identify the nature and extent of the evidence on psychological interventions among individuals with Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD). MATERIALS AND METHODS: Eligible studies reported on psychological interventions for individuals of all ages with EDS and/or HSD. All studies published in English were included, with no restrictions to publication year or status. MEDLINE, CINAHL, EMBASE, and PsycINFO were searched. Two reviewers independently screened studies and abstracted data. RESULTS: This scoping review included 10 studies reporting on EDS, HSD, or both. Only cohort studies and case studies were identified. Four studies investigated Cognitive Behavioural Therapy (CBT), one investigated Dialectical Behavioural Therapy (DBT), two investigated psychoeducation, two investigated Intensive Interdisciplinary Pain Treatment (IIPT), and one investigated Acceptance Commitment Therapy (ACT). Interventions targeted pain management, self-destructive behaviours, and related psychological issues (e.g., depression/anxiety). Sample sizes were small (n < 50) for most studies and interventions were generally poorly described. CONCLUSIONS: There is a critical need for high-quality research surrounding psychological interventions for individuals with EDS/HSD. Psychological interventions for these individuals are understudied and existing studies lack validity. Researchers should investigate psychological interventions for individuals with all types of EDS/HSD with high-quality studies to validate findings from the existing studies.

Exploring the Poststroke Experiences and Needs of South Asian Communities Living in High-Income Countries: Findings from a Scoping Review.

Despite the high prevalence of stroke among South Asian communities in high-income countries, a comprehensive understanding of their unique experiences and needs after stroke is lacking. This study aimed to synthesize the literature examining the experiences and needs of South Asian community members impacted by stroke and their family caregivers residing in high-income countries. A scoping review methodology was utilized. Data for this review were identified from seven databases and hand-searching reference lists of included studies. Study characteristics, purpose, methods, participant characteristics, results, limitations, recommendations, and conclusions were extracted. Data were analyzed using descriptive qualitative analysis. In addition, a consultative focus group exercise with six South Asian community members who had experienced a stroke and a program facilitator was conducted to inform the review interpretations. A total of 26 articles met the inclusion criteria and were analyzed. Qualitative analysis identified four descriptive categories: (1) rationale for studying the South Asian stroke population (e.g., increasing South Asian population and stroke prevalence), (2) stroke-related experiences (e.g., managing community support versus stigma and caregiving expectations), (3) stroke service challenges (e.g., language barriers), and (4) stroke service recommendations to address stroke service needs (e.g., continuity of care). Several cultural factors impacted participant experiences, including cultural beliefs about illness and caregiving. Focus group participants from our consultation activity agreed with our review findings. The clinical and research recommendations identified in this review support the need for culturally appropriate services for South Asian communities across the stroke care continuum; however, more research is necessary to inform the design and structure of culturally appropriate stroke service delivery models.

Examining the Relationship Between Community Integration and Mental Health Characteristics of Individuals With Childhood Acquired Neurological Disability.

Background: Many individuals with cerebral palsy (CP) or acquired brain injury (ABI) are at higher risk of lowered psychosocial functioning, poor mental health outcomes and decreased opportunities for community integration (CI) as they transition to adulthood. It is imperative to understand the characteristics of those at highest risk of dysfunction so that targeted interventions can be developed to reduce the impact. Methods: This quantitative, cross-sectional study examines current patients of the Living Independently Fully Engaged [(LIFEspan) Service], a tertiary outpatient hospital-based clinic. The Patient Health Questionnaire-4 (PHQ-4) and the Community Integration Questionnaire (CIQ) were administered to participants. Personal health information was also collected from participants' health charts, and participant interviews. Associations of sex and condition with the outcomes of screening for further assessment of depression, screening for further assessment of anxiety, and CI were calculated using t-tests and Chi-square tests. Results: 285 participants completed standardized screening tools for depression and anxiety (PHQ-4) and 283 completed the Community Integration Questionnaire (CIQ). Mean age was 23.4 (4.2) years; 59% were diagnosed with CP, 41% diagnosed with ABI, and 56% were male. A moderate proportion of the sample screened positive for further assessment of anxiety (28%) and depression (16%), and the overall mean score on the CIQ for the sample was 15.8 (SD 5.1). Participants that screened positive for further assessment of depression and anxiety on the PHQ-4 had lower scores on the Social Integration subscale of the CIQ (p = 0.04 and p = 0.036, respectively). Females were found to have significantly higher community integration than males (p = 0.0011) and those diagnosed with ABI were found to have significantly higher community integration than those with CP (p = 0.009), respectively. A weak negative association was found between age for the total sample and overall PHQ-4 score (p = 0.0417). Presence of an intellectual or learning disability/challenge was associated with a lower CIQ score (p = 0.0026). Conclusions: This current study, highlights the need for further research to explore the unique needs and barriers faced by this population. This study may inform assessments and interventions to support the mental health and community integration of this population.

Web-Based Peer Support Interventions for Adults Living With Chronic Conditions: Scoping Review.

BACKGROUND: Globally, 1 in 3 adults live with multiple chronic conditions. Thus, effective interventions are needed to prevent and manage these chronic conditions and to reduce the associated health care costs. Teaching effective self-management practices to people with chronic diseases is one strategy to address the burden of chronic conditions. With the increasing availability of and access to the internet, the implementation of web-based peer support programs has become increasingly common. OBJECTIVE: The purpose of this scoping review is to synthesize existing literature and key characteristics of web-based peer support programs for persons with chronic conditions. METHODS: This scoping review follows the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) extension for scoping reviews guidelines. Studies were identified by searching MEDLINE, CINAHL, Embase, PsycINFO, and the Physiotherapy Evidence Database. Chronic diseases identified by the Public Health Agency of Canada were included. Our review was limited to peer support interventions delivered on the web. Peers providing support had to have the chronic condition that they were providing support for. The information abstracted included the year of publication, country of study, purpose of the study, participant population, key characteristics of the intervention, outcome measures, and results. RESULTS: After duplicates were removed, 12,641 articles were screened. Data abstraction was completed for 41 articles. There was a lack of participant diversity in the included studies, specifically with respect to the conditions studied. There was a lack of studies with older participants aged ≥70 years. There was inconsistency in how the interventions were described in terms of the duration and frequency of the interventions. Informational, emotional, and appraisal support were implemented in the studied interventions. Few studies used a randomized controlled trial design. A total of 4 of the 6 randomized controlled trials reported positive and significant results, including decreased emotional distress and increased health service navigation, self-efficacy, social participation, and constructive attitudes and approaches. Among the qualitative studies included in this review, there were several positive experiences related to participating in a web-based peer support intervention, including increased compassion and improved attitudes toward the individual's chronic condition, access to information, and empowerment. CONCLUSIONS: There is limited recent, high-level evidence on web-based peer support interventions. Where evidence exists, significant improvements in social participation, self-efficacy, and health-directed activity were demonstrated. Some studies incorporated a theoretical framework, and all forms of peer support-emotional, informational, and appraisal support-were identified in the studies included in this review. We recommend further research on web-based peer support in more diverse patient groups (eg, for older adults and chronic conditions outside of cancer, cardiovascular disease, and HIV or AIDS). Key gaps in the area of web-based peer support will serve to inform the development and implementation of future programs.