The impact on employment and education of caregiving for a family member with young onset dementia: A scoping review.

Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of 'decision-making' was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified 'Guidance for Researchers To Support Caregivers'. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations.

The Conceptualization and Measurement of Research Impact in Primary Health Care: Protocol for a Rapid Scoping Review.

BACKGROUND: The generation of research evidence and knowledge in primary health care (PHC) is crucial for informing the development and implementation of interventions and innovations and driving health policy, health service improvements, and potential societal changes. PHC research has broad effects on patients, practices, services, population health, community, and policy formulation. The in-depth exploration of the definition and measures of research impact within PHC is essential for broadening our understanding of research impact in the discipline and how it compares to other health services research. OBJECTIVE: The objectives of the study are (1) to understand the conceptualizations and measures of research impact within the realm of PHC and (2) to identify methodological frameworks for evaluation and research impact and the benefits and challenges of using these approaches. The forthcoming review seeks to guide future research endeavors and enhance methodologies used in assessing research impact within PHC. METHODS: The protocol outlines the rapid review and environmental scan approach that will be used to explore research impact in PHC and will be guided by established frameworks such as the Canadian Academy of Health Sciences Impact Framework and the Canadian Health Services and Policy Research Alliance. The rapid review follows scoping review guidelines (PRISMA-ScR; Preferred Reporting Items for Systematic Review and Meta-Analysis Extension for Scoping Reviews). The environmental scan will be done by consulting with professional organizations, academic institutions, information science, and PHC experts. The search strategy will involve multiple databases, citation and forward citation searching, and manual searches of gray literature databases, think tank websites, and relevant catalogs. We will include gray and scientific literature focusing explicitly on research impact in PHC from high-income countries using the World Bank classification. Publications published in English from 1978 will be considered. The collected papers will undergo a 2-stage independent review process based on predetermined inclusion criteria. The research team will extract data from selected studies based on the research questions and the CRISP (Consensus Reporting Items for Studies in Primary Care) protocol statement. The team will discuss the extracted data, enabling the identification and categorization of key themes regarding research impact conceptualization and measurement in PHC. The narrative synthesis will evolve iteratively based on the identified literature. RESULTS: The results of this study are expected at the end of 2024. CONCLUSIONS: The forthcoming review will explore the conceptualization and measurement of research impact in PHC. The synthesis will offer crucial insights that will guide subsequent research, emphasizing the need for a standardized approach that incorporates diverse perspectives to comprehensively gauge the true impact of PHC research. Furthermore, trends and gaps in current methodologies will set the stage for future studies aimed at enhancing our understanding and measurement of research impact in PHC. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/55860.

Co-design for stroke intervention development: Results of a scoping review.

BACKGROUND: Co-design methodology seeks to actively engage end-users in developing interventions. It is increasingly used to design stroke interventions; however, limited guidance exists, particularly with/for individuals with stroke who have diverse cognitive, physical and functional abilities. Thus, we describe 1) the extent of existing research that has used co-design for stroke intervention development and 2) how co-design has been used to develop stroke interventions among studies that explicitly used co-design, including the rationale, types of co-designed stroke interventions, participants involved, research methodologies/approaches, methods of incorporating end-users in the research, co-design limitations, challenges and potential strategies reported by researchers. MATERIALS AND METHODS: A scoping review informed by Joanna Briggs Institute and Arksey & O'Malley methodology was conducted by searching nine databases on December 21, 2022, to locate English-language literature that used co-design to develop a stroke intervention. Additional data sources were identified through a hand search. Data sources were de-duplicated, and two research team members reviewed their titles, abstracts and full text to ensure they met the inclusion criteria. Data relating to the research objectives were extracted, analyzed, and reported numerically and descriptively. RESULTS: Data sources used co-design for stroke intervention development with (n = 89) and without (n = 139) explicitly using the term 'co-design.' Among studies explicitly using co-design, it was commonly used to understand end-user needs and generate new ideas. Many co-designed interventions were technology-based (65%), and 48% were for physical rehabilitation or activity-based. Co-design was commonly conducted with multiple participants (82%; e.g., individuals with stroke, family members/caregivers and clinicians) and used various methods to engage end-users, including focus groups and workshops. Limitations, challenges and potential strategies for recruitment, participant-engagement, contextual and logistical and ethics of co-designed interventions were described. CONCLUSIONS: Given the increasing popularity of co-design as a methodology for developing stroke interventions internationally, these findings can inform future co-designed studies.

The clinical use of personal hearing amplifiers in facilitating accessible patient-provider communication: A scoping review.

BACKGROUND: Older adults with hearing loss struggle to communicate with care providers and experience higher mortality rates when hospitalized (Genther et al., 2015), even after controlling for age and comorbidities. Personal hearing amplifiers (PHAs), (e.g., Pocketalkers™), can improve communication with older patients. METHODS: We conducted a scoping review to identify research gaps and summarize findings on the clinical use of PHAs with patients with hearing loss. After refining search terms relating to hearing loss and PHAs, we searched MEDLINE, Embase, PsycINFO, Cochrane Library, CINAHL Complete, Web of Science Core Collection, ERIC (Proquest), PubMed, ClinicalTrials.gov, International Clinical Trials Registry Platform, and the International Standard Randomised Controlled Trial Number Registry. We identified articles published in English between 1980 and 2022 that reported empirical outcomes relating to PHA use in clinical settings. Two reviewers independently extracted data from articles. We then organized data into an evidence map, and a narrative review summarizing outcomes. RESULTS: From 4234 initially identified titles and abstracts, 12 met our criteria as full texts. These included three surveys on clinicians' awareness and use of PHAs, one evaluation of the acoustic output of a PHA, and eight interventions wherein PHAs were provided to patients with hearing loss. These papers used 10 different terms for PHAs and largely did not cite one another. Results showed high levels of satisfaction with PHAs, and consistently improved speech understanding. Despite this, care providers used devices inconsistently, with challenges around provider awareness, and device maintenance and location tracking. CONCLUSIONS: PHAs have a consistent positive effect on patients' ability to understand their care providers despite hearing loss. Barriers and facilitators to their use in clinical settings should be further explored.

Occupational Therapists in Patient Navigation: A Scoping Review of the Literature.

This review seeks to understand the literature on patient navigator programs (PNPs) that employ occupational therapists (OTs), including the role (conceptualization), functions (operationalization) of OTs who work as patient navigators (PNs) and the settings and populations they serve. This review also mapped the role of PNs to the 2021 Competencies for Occupational Therapists in Canada. Scoping review methodology by Arksey and O'Malley (2005) was employed. Data were analyzed thematically and numerically to identify frequent patterns. Ten articles were included. Within PNPs, OTs worked in hospitals and communities, but their role was rarely well-defined. Five competency domains (i.e., communication and collaboration, culture, equity and justice, excellence in practice, professional responsibility, and engagement with the profession) were evident in existing PNPs that included OTs. This review supports the increasing interest in OTs as PNs by demonstrating the alignment between the OT competencies and roles and functions of OTs working within PNPs.

Easing the Nursing Shortage: Tools for Retaining Nurses through Mentorship.

To increase retention of nurses and ease the nursing shortage, innovative mentorship strategies must be implemented. Our rapid review shows that mentorship programs in hospitals for early-, mid- and late-career nurses is an effective way to improve nurse retention. The unique needs of internationally educated nurses must also be considered in these programs to bolster the Canadian nursing workforce supply. We highlight five tools that are critical to the successful implementation of nurse mentorship programs in hospitals: (1) establish reciprocal relationships between mentors, mentees, hospital administrators and leaders ; (2) facilitate administrative structures, resources and support for mentors and mentees ; (3) enable effective features of mentorship programs ; (4) ensure that mentorship promotes professional and personal development ; and (5) support internationally educated nurses through mentorship.

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.

Exploring the roles and functions of champions within community-based interventions to support older adults with chronic conditions: A scoping review protocol.

BACKGROUND: Health care solutions are needed to meet the need of an ageing population. Health care champions are people who endorse the adoption of new initiatives being implemented within health care settings. Although the role of champions has been cited as key to the success of numerous community-based interventions implemented to improve the care of older adults with chronic conditions, no synthesis of their implementation experiences have been conducted. We report on a scoping review protocol that will be applied to collect evidence on the role of champions within community-based health interventions to support older adults with chronic conditions. Specifically, we will identify how the term 'champion' is used and defined (i.e., conceptualized) and identify the roles (i.e., professional background) and functions of champions (i.e., responsibilities). We will also explore how this role impacts program implementation. METHODS: This is a scoping review protocol informed by guidelines for Scoping Reviews (PRISMA-ScR) and a six-stage scoping review methodology. Peer-review literature will be retrieved from Medline, CINAHL, PubMed, PsycInfo, Cochrane JBI and Scopus databases, using a peer-reviewed search strategy developed in collaboration with an Information Specialist. The scoping review will consider all empirical studies published in English. Two reviewers will pilot-test the screening criteria and data abstraction forms, and then independently screen the literature. Extracted data will be analyzed numerically and thematically. Self-identified champions will be consulted to refine the practice recommendations from this work. DISCUSSION: This scoping review will broadly and systematically identify, define and expand existing knowledge on champions' impact in implementing community-based interventions to support older adults with chronic conditions. We anticipate that our results will lead to a greater understanding of the characteristics and role champions play within these interventions, which will be relevant to a wide range of knowledge users, including researchers, decision-makers, and health care providers.

Commentary: Minding the Gap - Why Wage Parity Is Crucial for the Care of Older Canadians.

Zagrodney and colleagues (2023) have highlighted the pay differences that exist between those working in the home and community care (HCC) sector and other healthcare sectors. The authors argue that achieving wage parity could significantly mitigate the current HCC human resource crisis, support the overall sustainability of Ontario's healthcare system and improve patient outcomes. We build on their argument by highlighting issues that have contributed to wage disparities within healthcare systems and discuss how addressing them can create more equitable systems for both those receiving and those providing care. We further note how other healthcare systems that have wage parity have demonstrated that it is not a "nice to have" but an essential element of establishing a sustainable health human resources strategy. Finally, the new 10-year bilateral healthcare funding agreements that the federal, provincial and territorial governments are currently announcing will not only provide significant new funding but also an opportunity to decisively address the long-standing issue of wage parity in Canada, once and for all.

"Why Do We Always Have to Focus on the Bad": A Strengths-Based Approach to Identify the Positive Aspects of Care From the Perspective of Older Adults Using a Secondary Qualitative Analysis.

Hospitalization is often viewed as a burdensome and stressful period for older adults and their family caregivers; however, little attention has been given to the positive aspects of the care continuum journey. The purpose of this article is to highlight the positive aspects of healthcare from the perspective of Canadian older adults with complex needs and their family caregivers. This study utilized a strengths-based theoretical perspective to conduct a secondary qualitative analysis of interviews with 12 older adults and seven family caregivers. Four themes relating to positive aspects of care were identified, including: (1) looking beyond illness, (2) emotional support from healthcare providers, (3) timely discharge, and (4) upholding independence. Focusing on the positive aspects can help determine areas of care practice that currently work well. These insights will be valuable for current and future initiatives seeking to restructure and optimize healthcare services for older adults.

Stroke Experiences and Unmet Needs of Individuals of African Descent Living in High-Income Economy Countries: a Qualitative Meta-Synthesis.

BACKGROUND: Stroke service disparities experienced by individuals of African descent highlight the need to optimize services. While qualitative studies have explored participants' unique experiences and service needs, a comprehensive synthesis is lacking. To address current knowledge gaps, this review aimed to synthesize existing literature on the experiences of individuals of African descent impacted by a stroke living in high-income economy countries in terms of stroke prevention, management, and care. METHODS: A qualitative meta-synthesis incorporating a meta-study approach was conducted to obtain comprehensive and interpretive insights on the study topic. Four databases were searched to identify qualitative English-language studies published in the year 2022 or earlier on the experiences of adults of African descent who were at risk or impacted by a stroke and living in high-income economy countries. Study methods, theory, and data were analyzed using descriptive and interpretive analyses. RESULTS: Thirty-seven studies met our inclusion criteria, including 29 journal articles and 8 dissertations. Multiple authors reported recruitment as a key challenge in study conduct. Multiple existing theories and frameworks of health behaviours, beliefs, self-efficacy, race, and family structure informed research positionality, questions, and analysis across studies. Participant experiences were categorized as (1) engagement in stroke prevention activities and responses to stroke symptoms, (2) self-management and self-identity after stroke, and (3) stroke care experiences. CONCLUSIONS: This study synthesizes the experiences and needs of individuals of African descent impacted by stroke. Findings can help tailor stroke interventions across the stroke care continuum, as they suggest the need for intersectional and culturally humble care approaches.

Exacerbated inequalities: A scoping review of the experiences of older persons during conflict situations.

BACKGROUND: We conducted the first known comprehensive literature review to (1) identify, categorize, and summarize the existing knowledge about the experiences of older persons and their caregivers during conflict situations; (2) identify the support needs of older persons and their caregivers, and; (3) identify gaps in the literature and understanding that may inform future research. METHODS: A scoping review methodology of academic peer-reviewed and gray English language literature was employed using six academic literature databases and one gray literature database. We further performed comprehensive searches of relevant search engines and organization websites and bibliographic hand searches to identify additional academic and gray literature. Two authors screened for eligibility of identified studies and documents. One reviewer extracted data regarding authors, article type, geographic origin, key participant characteristics, aims, study design and data collection method, results, conclusions and limitations. Data were analyzed thematically. RESULTS: 83 documents met this review's inclusion criteria, including 21 academic documents and 62 from the gray literature. Thematic analysis revealed that conflict situations exacerbate existing inequalities experienced by older persons. Within this overarching theme were three interconnected sub-themes: (1) Older adults are particularly vulnerable during conflict situations; (2) Older persons are inadequately supported in conflict situations; (3) In the face of great challenges, many older adults still manage to endure through conflict situations. We identified 15 recommendations from the reviewed documents to better support older adults in conflict situations. CONCLUSIONS: Existing inequalities, such as ageism and ableism, targeted discrimination, and poor health outcomes, become exacerbated during conflict situations, resulting in older persons being less able to flee and meet their daily needs with sufficient access to necessities and healthcare. Little is known of the experiences and needs of family caregivers during conflict situations. We identified several opportunities to improve the experience and support of older persons in conflict situations.

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.

Considering a Need for Dementia-Specific, Family-Centered Patient Navigation in Canada.

Patient navigation has been proposed as a novel family-centered, integrated care model to address the care needs of persons living with dementia and their family caregivers by helping them navigate the complex range of dementia services offered in hospital and community settings. A key informant qualitative descriptive study explored the perspectives of 48 healthcare professionals to explore the need for dementia-specific patient navigation. Data were analyzed thematically. We identified one overarching theme: "Variability in the Need for Illness-Specific Patient Navigation" and five themes that highlight considerations when providing navigation to individuals with dementia: (1) Taking Part in Ongoing Training, (2) Addressing Stigma, (3) Focusing on Quality of Life, (4) Defining Home, and (5) A Continuous Process of Support. These themes provide preliminary insights into the conceptual differences about the need for illness-specific patient navigation and the areas within patient navigation where healthcare professionals are encouraged to find consensus.

Understanding the Goals of Older Adults with Complex Care Needs, Their Family Caregivers and Their Care Providers Enrolled in a Patient Navigation Program.

Patient navigation models of care are being used to support hospital-to-home transitions. The present paper aimed to explore the goals important to older adults, their caregivers, and care providers as they transition from hospital-to-home and how, if at all, patient navigation can enable goals of care. Data were comprised of 94 interviews with 16 older adults, 5 family caregivers and 48 healthcare providers. Data were analyzed thematically and similarities and differences in goals were identified. Shared goals included having someone to count on and easy access to services. Older adults expressed the goal of independence, whereas family caregivers and healthcare providers noted safety. Caregivers noted goals of developing skills. While patient navigation was viewed as meeting goals of care by participants, future research is required to determine how patient navigation can support goal setting as a standard clinical practice and the long-term patient outcomes of meeting goals.

Engagement of patient and family advisors in health system redesign in Canada.

OBJECTIVES: Globally, there has been a shift towards integrated care delivery and patient-centredness in the design of health services. Such a transformation is underway in Ontario, which is progressively using an interprofessional team-based approach known as Ontario Health Teams (OHTs) to deliver care. During their initial development, OHTs were required to integrate patient and families' preferences, experiences and opinions in the form of consultation and partnership with patient and family advisors (PFAs). This study aimed to understand how PFAs were involved in the early stages of planning for health system change and the perceived benefits of including PFAs in system reform. METHODS: This study used a qualitative descriptive design. Semi-structured interviews were conducted with 126 participants at 12 OHTs, including PFA (n = 16) and non-PFA (n = 110) members (e.g. clinicians). Data were analysed thematically. RESULTS: We identified four themes; mechanisms of engagement, motivations to engage, challenges to PFA engagement and PFAs' impact and added value. Overall, participants viewed PFA engagement positively and PFAs felt valued and empowered. There remain logistical challenges around PFA compensation, and the amount of time and training expected of PFAs. However, all participants believed that developing an understanding of the patient, caregiver and family experience will strengthen the engagement of PFAs in OHT planning, decisions and policies. CONCLUSIONS: Diverse approaches to and stages of PFA engagement fostered meaningful and highly valued contributions to OHT development. These were considered critical to successfully achieving the mandate of patient-centred care reform.

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.

A Systematic Review on Navigation Programs for Persons Living With Dementia and Their Caregivers.

BACKGROUND AND OBJECTIVES: System navigation programs are becoming more available to meet the needs of patients with complex care needs. The aim of this review was to systematically assess the outcomes of navigation programs for persons with dementia and their family caregivers. RESEARCH DESIGN AND METHODS: A systematic review methodology was employed. Ten databases were searched for all relevant articles published until October 30, 2021. English-language full-text articles were included if they focused on implemented navigation program(s) that primarily supported persons with dementia who were aged 50 or older. Methodological quality was assessed by 2 independent raters using the Physiotherapy Evidence Database Scale, the STrengthening the Reporting of OBservational studies in Epidemiology checklist, and the Mixed Methods Appraisal Tool. RESULTS: Fourteen articles were included in the review. There was Level 1 evidence for the benefits of system navigation programs on delaying institutionalization, wherein benefits appeared to be specific to interventions that had an in-person component. There was Level 1 (n = 4) and Level 3 (n = 1) evidence on service use from time of diagnosis to continued management of dementia. Finally, Level 1 to Level 5 evidence indicated a number of benefits on caregiver outcomes. DISCUSSION AND IMPLICATIONS: There is strong evidence on the benefits of system navigation for people with dementia on delaying institutionalization and caregiver outcomes, but outcomes across other domains (i.e., functional independence) are less clear, which may be due to the varied approaches within system navigation models of care.

The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study.

Introduction: Family caregivers play an important role supporting the day-to-day needs of ventilator-assisted individuals (VAIs) living at home. Peer-to-peer communication can help support these caregivers and help them sustain caregiving in the community. Online peer-support has been suggested as a way to help meet caregivers' support needs. Methods: A qualitative descriptive approach was used to elicit the perspectives of support received from caregivers who participated in a pilot web-based peer support program from October to December 2018. Data were collected through the transcripts of weekly online peer-to-peer group chats. Data were analyzed using an integration of thematic and framework analysis. Results: In total, eight caregivers and five peer mentors participated in the pilot. All five mentors and four of the caregivers participated in the weekly chats. We identified three themes, a) The experience of caregivers is characterized by unique challenges related to the complexity of VAI care including technology; b) Mentors and caregiver participants reciprocally share support; c) Despite hardships, there are things that make caregiving easier and joyful. Discussion: Our results add to the growing body of evidence pointing to the importance of online communities for supporting vulnerable caregivers. The reciprocal element of peer support, where trained mentors and untrained participants both benefit from support, can help sustain peer-support interventions. Despite the challenges of providing care to a VAI, there are facilitators that may help ease the caregiving experience and caregivers can benefit from ongoing support that is tailored to their needs along the caregiving trajectory.