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 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.

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.

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.

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.

"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.

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.

Prioritizing a Research Agenda of Transitional Care Interventions for Childhood-Onset Disabilities.

Transitional care interventions have the potential to optimize continuity of care, improve health outcomes and enhance quality of life for adolescents and young adults living with chronic childhood-onset disabilities, including neurodevelopmental disorders, as they transition to adult health and social care services. The paucity of research in this area poses challenges in identifying and implementing interventions for research, evaluation and implementation. The purpose of this project was to advance this research agenda by identifying the transitional care interventions from the scientific literature and prioritize interventions for study. A modified-Delphi approach involving two rounds of online surveys followed by a face-to-face consensus meeting with knowledge users, researchers and clinician experts in transitional care (n = 19) was used. A subsequent virtual meeting concluded the formulation of next steps. Experts rated 16 categories of interventions, derived from a systematic review, on importance, impact, and feasibility. Seven of the 16 interventions categories received a mean score rating of ≥7 (out of 10) on all three rating categories. Participants then rank ordered the reduced list of seven interventions in order of priority and the top four ranked interventions advanced for further discussion at a consensus meeting. Using the Template for Intervention Description and Replication (TIDieR) checklist as a guide, the participants identified that a study of a peer system navigator was worthy of future evaluation. This study highlighted that transitional care interventions are complex and multifaceted. However, the presence of a peer to support system navigation, advocacy and individual and family education was considered the most ideal intervention addressing the current gap in care. Future research, which aims to engage patients and families in a co-design approach, is recommended to further develop this intervention.

Using an integrated knowledge translation approach to inform a pilot feasibility randomized controlled trial on peer support for individuals with traumatic brain injury: A qualitative descriptive study.

INTRODUCTION: Traumatic brain injury (TBI) is estimated to affect 10 million people annually, making it a leading cause of morbidity and mortality worldwide. One cost-effective intervention that has been shown to minimize some of the negative sequelae after TBI is peer support. However, the evidence supporting the benefits of peer support for individuals with TBI is sparse and of low quality. Integrated knowledge translation (iKT) may be one approach to optimizing the evaluation of peer support programs among individuals with TBI. Therefore, the objectives are: (1) To understand key informants' perspectives of the barriers and facilitators of participating in peer support research and programs among individuals with TBI; (2) to understand key informants' perspectives on the perceived impacts of peer support programs on individuals with TBI; and, (3) to demonstrate how an iKT approach can inform the development and implementation of a pilot feasibility randomized controlled trial (RCT). METHODS: A qualitative descriptive approach using one-on-one semi-structured interviews was used. Purposive sampling of 22 key informants included 8 peer support mentors, 4 individuals with TBI who received peer support, 3 caregivers of individuals with TBI, 4 peer support program staff, and 3 academics in peer support and/or TBI. RESULTS: There were five main themes related to the barriers and facilitators to participating in peer support research and programs: knowledge, awareness, and communication; logistics of participating; readiness and motivation to participate; need for clear expectations; and matching. There were three main themes related to the perceived impact of peer support: acceptance, community, social experiences; vicarious experience/learning through others: shared experiences, role-modelling, encouragement; and "I feel better." Discussions with our Research Partner led to several significant adaptations to our trial protocol, including removing the twice/week intervention arm, shortening of the length of trial, and changing the measure for the community integration outcome. DISCUSSION/CONCLUSION: This is the first study to use an iKT approach to inform a trial protocol and the first to assess the barriers and facilitators to participating in peer support research.

A Pilot Feasibility Randomized Controlled Trial on the Ontario Brain Injury Association Peer Support Program.

BACKGROUND: The long-term consequences of traumatic brain injury can create major barriers to community integration. Peer support represents a sustainable model of support across this transition. The objective of the current study was to determine the feasibility of conducting a randomized controlled trial on the Ontario Brain Injury Association Peer Support Program and the preliminary effectiveness of the program on community integration, mood, health-related quality of life, and self-efficacy; Methods: A pilot feasibility randomized controlled trial with an embedded qualitative component was conducted. Mentees with moderate-to-severe traumatic brain injury (n = 13) were randomized to a weekly intervention or waitlist control group. Interviews were conducted with a subset of mentees and peer mentors (n = 10). Integration of the quantitative and qualitative data was completed using a joint display approach; Results: No statistically significant results were found for community integration, mood, or self-efficacy; however, changes in these outcomes were accompanied by moderate-to-large effect sizes. Within health-related quality of life, the mean pain score of the intervention group was significantly lower than that of the control group at the two-month timepoint but not at completion. Interviews revealed proximal improvements in knowledge, skills, and goals, and identified two domains related to trial acceptability: (1) environmental context and resources, and (2) reinforcement; Conclusions: Given the conceivable importance of proximal improvements in domains such as knowledge, skills, and/or goals for the attainment of more distal outcomes, modifications to the existing Peer Support Program may be warranted. The introduction of program recommendations which promote discussion around particular domains may help facilitate long-term improvements in health outcomes.

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.

Physical performance outcome measures used in exercise interventions for adults with childhood-onset disabilities: A scoping review.

BACKGROUND: People with childhood-onset disabilities face unique physical and social challenges in adulthood. Exercise interventions may improve physical performance in children, but there is a lack of research on adults. OBJECTIVE: To describe studies that investigate exercise interventions and to evaluate the quality of physical performance outcome measures for adults with childhood-onset disabilities. METHODS: Eligible studies reported on exercise interventions for adults (ages 16+) with cerebral palsy, spina bifida, or acquired brain injuries. Only randomized controlled trials published in English from 2008 to 2019 were included. MEDLINE, CINAHL, PEDro, EMBASE, and Cochrane Central Register of Controlled Trials were searched. Two reviewers independently screened studies and abstracted data. RESULTS: This scoping review included 4 trials reporting on cerebral palsy only. Three strength training programs found significant improvements in gait, and one mixed training program found significant improvements in strength and fitness. Only two outcome measures used are valid/reliable for adults (6 Minute Walk Test and Borg-20 Grades). CONCLUSION: Certain interventions may improve physical performance, but there is a lack of research on appropriate exercise interventions and physical performance outcome measures for adults with childhood-onset disabilities. Different exercise interventions should be investigated using larger sample sizes and outcome measures should be standardized.

Transitional Care Interventions for Youth With Disabilities: A Systematic Review.

CONTEXT: Transition from the pediatric to the adult health care system is a complex process that should include medical, psychosocial, educational, recreational, and vocational considerations. OBJECTIVE: In this systematic review, we aim to synthesize the evidence on transitional care interventions (TCIs) to improve the quality of life (QoL) for adolescents and young adults with childhood-onset disabilities, including neurodevelopmental disorders. DATA SOURCES: Four electronic databases (Medline, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature) were searched. STUDY SELECTION: In the included studies, researchers examined TCIs for adolescents and young adults (12-24 years of age) with childhood-onset disabilities. Studies were experimental, quasi-experimental, and observational studies published in the last 26 years. DATA EXTRACTION: Two reviewers independently completed study screening, data extraction, and risk-of-bias assessment. RESULTS: Fifty-two studies were included. Five studies reported on QoL, but statistically significant improvements were noted in only 1 of these studies. Significant improvements were also found in secondary outcomes including disability-related knowledge and transitional readiness. TCIs targeted patients, families and/or caregivers, and health care providers and exhibited great heterogeneity in their characteristics and components. LIMITATIONS: Inconsistent reporting on interventions between studies hindered synthesis of the relationships between specific intervention characteristics and outcomes. CONCLUSIONS: Although there is limited evidence on the impact of TCIs on the QoL for youth with childhood-onset disabilities, there is indication that they can be effective in improving patient and provider outcomes. The initiation of transition-focused care at an early age may contribute to improved long-term health outcomes in this population.

Impact of quality improvement strategies on the quality of life of individuals post-stroke: a systematic review.

Purpose: The purpose of this systematic review was to synthesize and appraise the evidence regarding the impact of quality improvement strategies on quality of life as well as physical and psychological well-being of individuals with stroke.Materials and methods: Studies were identified by searching MEDLINE (OVID interface, 2000 onwards), CINAHL (EBSCO interface, 2000 onwards), EMBASE (OVID interface, 2000 to present), and PsycINFO (OVID interface, 2000 onwards). The Effective Practice and Organization of Care Risk of Bias Tool was applied. Extracted data from the publications included: study characteristics, participant characteristics, the strategy characteristics, the outcomes, and quality appraisal.Results: Our review identified 12 trials that utilized only 4 of the 10 quality improvement strategies included in this review. The most common quality improvement strategy was self-management. Other studies included patient education, team changes, and case management. Only 5 of the 12 studies reported statistically significant improvements in some component of quality of life.Conclusions: There is a lack of evidence to demonstrate efficacy/effectiveness of patient education, self-management, team changes, and case management approaches on improving the quality of life of stroke survivors. Identifying the essential features of effective and ineffective strategies, especially in the area of self-management strategies would be beneficial.Implications for rehabilitationThere is a lack of evidence to demonstrate efficacy/effectiveness of patient education, self-management, team changes, and case management approaches on improving the quality of life of stroke survivors.To improve these outcomes, there may be a need to co-create/tailor quality improvement interventions with patients, their caregivers, and providers.The impact of a broader range of quality improvement interventions, including clinician education and patient reminder systems, on quality of life post-stroke should be considered.

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.

Ontario Brain Injury Association Peer Support Program: a mixed methods protocol for a pilot randomised controlled trial.

INTRODUCTION: The objective of this study is to conduct a pilot randomised controlled trial (RCT) of the Ontario Brain Injury Association (OBIA) Peer Support Program. The RCT is designed to evaluate the effectiveness and dose-response of the Peer Support Program in improving participation and mood for people with moderate-to-severe traumatic brain injury compared with a wait-list control group. METHODS AND ANALYSIS: The proposed research is a three-phase, mixed methods pilot RCT. Consistent with an integrated knowledge translation approach, the study design has been informed in consultation with the knowledge user (ie, OBIA). It will include an initial qualitative examination of barriers and enablers to the trial implementation (phase 1), a pilot RCT (phase 2) and conclude with a qualitative component (phase 3). A qualitative descriptive approach will be adopted for both qualitative phases of the study (n=20-25) and thematic analysis will be used. The 6 months phase-2 trial will be conducted with 60 participants. These participants will be randomised to one of three groups: a twice a week programme (n=20), a once a week programme (n=20) or the wait-list control group (n=20). The feasibility of participant recruitment and retention, data collection, as well as participant adherence to the OBIA Peer Support Program will be evaluated. The primary outcome measure will be participation, as measured by the Participation Assessment with Recombined Tools-Objective. Other proposed outcomes of interest will include mood, health-related quality of life and self-efficacy. ETHICS AND DISSEMINATION: Ethics approval will be obtained from the principal author's institution (University Health Network Research Ethics Board). The results of this study will inform the development of a larger scale RCT and will inform future iterations of the OBIA Peer Support Program including a revised programme curriculum. TRIAL REGISTRATION NUMBER: NCT03450460; Pre-results.

The association between adverse childhood experiences and adult traumatic brain injury/concussion: a scoping review.

BACKGROUND: Adverse childhood experiences are significant risk factors for physical and mental illnesses in adulthood. Traumatic brain injury/concussion is a challenging condition where pre-injury factors may affect recovery. The association between childhood adversity and traumatic brain injury/concussion has not been previously reviewed. The research question addressed is: What is known from the existing literature about the association between adverse childhood experiences and traumatic brain injury/concussion in adults? METHODS: All original studies of any type published in English since 2007 on adverse childhood experiences and traumatic brain injury/concussion outcomes were included. The literature search was conducted in multiple electronic databases. Arksey and O'Malley and Levac et al.'s scoping review frameworks were used. Two reviewers independently completed screening and data abstraction. RESULTS: The review yielded six observational studies. Included studies were limited to incarcerated or homeless samples, and individuals at high-risk of or with mental illnesses. Across studies, methods for childhood adversity and traumatic brain injury/concussion assessment were heterogeneous. DISCUSSION: A positive association between adverse childhood experiences and traumatic brain injury occurrence was identified. The review highlights the importance of screening and treatment of adverse childhood experiences. Future research should extend to the general population and implications on injury recovery. Implications for rehabilitation Exposure to adverse childhood experiences is associated with increased risk of traumatic brain injury. Specific types of adverse childhood experiences associated with risk of traumatic brain injury include childhood physical abuse, psychological abuse, household member incarceration, and household member drug abuse. Clinicians and researchers should inquire about adverse childhood experiences in all people with traumatic brain injury as pre-injury health conditions can affect recovery.