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Introduction: Caring for children and youth with special health care needs (CYSHCN) is a significant undertaking for families. While respite care is intended to address this burden, demand continues to exceed supply. Exploring the perspectives of respite service providers (SPs) and stakeholders (SKs) provides unique insight into families' needs and respite care systems., Methods: We conducted semistructured interviews with 41 respite care SPs and SKs across four Canadian provinces to ascertain perspectives on current and ideal respite care for families of CYSHCN. The analysis included delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. The second-level analysis involved applying themes and subthemes to cross-functional process maps., Findings: Participants noted the critical, but sometimes absent role of Community Service Workers, who have the ability to support families accessing and navigating respite care systems. SPs and SKs identified current respite systems as operating in crisis mode. New findings suggest an ideal respite care system would incorporate advocacy for families, empower families and value CYSHCN, their families and respite workers., Conclusion: The evidence of unmet respite care needs of families of CYSHCN across Canada has long been available. Our findings identifying respite system challenges and solutions can be used by funders and policymakers for planning and enhancing resources, and by healthcare professionals, respite care providers and SKs to understand barriers and take action to improve respite outcomes to meet the respite needs of all families and CYSHCN., Patient or Public Contribution: The research team is composed of patients, researchers, clinicians and decision-makers along with our Family Advisory Committee (FAC) composed of members of families of CYSHNC. The FAC was formed and met regularly with research team members, knowledge users and collaborators throughout the study to provide input on design, review themes and ensure findings are translated and disseminated in a meaningful way., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Objectives: Respite for families of children and youth with special healthcare needs (CYSHCN) is essential for sustaining a family care environment. Lacking is an understanding of families' respite experiences who reside in Canada. We sought to understand experiences of the use of respite services by families with CYSHCN with the aim to help improve respite services. This paper reports on the qualitative arts-based findings., Design: Qualitative methods including open-ended interviews combined with the arts-based methods of ecomaps and the photovoice process were used. Analysis involved delineating units of meaning from the data, clustering units of meaning to form thematic statements and extracting themes. Setting Manitoba, a western Canadian province., Participants: Thirty-two families (including 38 parents and 13 siblings) of CYSHCN., Results: We identified six themes surrounding challenges experienced by families' in their journeys accessing, acquiring and navigating the respite care system, and sustainment of respite care for their families, leading to familial burn-out and breakdown, financial stress, unemployment and unaddressed mental health struggles. Families provided multipronged recommendations to address these challenges., Conclusions: Through the lens of Canadian families of children with a range of complex care needs, the qualitative arts-based portion of the study underscores the challenges with accessing, navigating and sustaining respite care, which has implications for CYSHCN, their clinicians and the potential for long-term costs for government and society. This study identifies the state of the current Manitoba respite care system as an issue, presenting actionable recommendations from families that can assist policymakers and clinicians in advocating for and implementing a collaborative, responsive, family-centred system of respite care., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: Families coping with palliative-stage cancer need comprehensive community services to support death at home. One such service, respite care, allows family caregivers to experience short breaks from their intensive role while giving patients new opportunities for social and care support. Respite care can be invaluable to families, especially when services are flexible and staffed by trusted care providers, such as nurses. However, many families forego respite because the available services are difficult to schedule and not staffed by providers with palliative care training. Other industries (e.g. transportation, travel accommodations) are using mobile applications ("apps") to optimize service delivery, but there is limited research on apps for palliative respite services. We aim to develop an app to foster the integrated care co-ordination of nurseprovided respite care services for families coping with palliative-stage cancer in Québec, Canada. Methods: A user-centered design study will be conducted, guided by Hevner's Information Systems Research Framework. 20 nurses, 15 adults with palliative-stage cancer, and 20 of their caregivers will be recruited from one palliative home-care community partner and two palliative oncology departments. Remote data collection will occur over three phases: brainstorming potential app features for addressing the needs of both caregivers and care recipients; evaluating the proofs-ofconcept; and usability testing of the prototype. Qualitative and quantitative data will be descriptively analyzed and triangulated to identify key app features. An Expert Council of key informants, including patient and caregiver advocates, will be consulted throughout the study to guide further data collection, app design, and dissemination. Highlights: To our knowledge, this will be the first app collaboratively designed to co-ordinate nurse-provided respite care for families with cancer. While this research is primarily digital solutions research (Pillar 7), this study also aligns with Pillar 3, "People as partners in health and care". The mHealth app will be developed in partnership with: patient, family caregiver, and nurse participants; community partners; and our transdisciplinary research team composed of nurses and computer scientists, several of whom have lived experience as family caregivers and palliative homecare workers. The creation of this app may empower families to use these optimally co ordinated respite care services with available nurse providers, allowing them to personalize their requested respite care services (such as through scheduling, and nurse skillset), leading to improved family and carer support in the community. Preliminary results for this ethically-approved project will be available for the conference. Conclusions: We will design an app to facilitate the delivery of respite care services in Québec, where cancer is the leading cause of death, and where respite care services are often fragmented. Once pilot-tested and launched, this app could improve the delivery of respite care services, reducing demand on institutional services while facilitating death at home, where most patients wish to be. Limitations and Implications: Anticipated study limitations are related to the risk of palliative care participant attrition. While the findings will be contextualized to Québec, the innovative methodological approach and app results may be transferable to other caregiving populations and settings. [ABSTRACT FROM AUTHOR]

Introduction: Locating respite services requires a high level of digital literacy among families to navigate limited resources within complex healthcare systems. In Québec, Canada, respite care services are often fragmented across public and private sectors, making service navigation particularly difficult. Consequently, families who could benefit from respite may forgo these services due to lack of knowledge of available services. Therefore, this study aims to: (a) identify, compile, and centralize all respite services available in Québec, Canada; (b) describe the specific features of these services; (c) compare existing services to best practices; and (d) identify potential gaps in the provision of these services. Methods: An environmental scan of respite care services available in Québec will be conducted by searching grey literature in targeted online databases and search engines. All retrieved documents will be screened by two independent reviewers. Data will be extracted, descriptively analyzed, and geographically schematized. Existing respite care services will then be compared to established best practices for respite care (e.g., ARCH National Respite Care Network Guidelines), to identify opportunities for improvement. Highlights: For these preliminary results, we focused on one database of caregiving support resources in Québec. Based on the first 50 results for seven keyword searches, we identified 42 resources specific to respite care. Themes identified included: a predominance of short-term respite services (n = 28), limited overnight service availability (n = 8), a care recipient target population typically comprising of older adults (n = 24), and a lack of palliative care services (n = 3). Further results will be available for the 2022 conference, based on additional searches and consultations with patient and caregiver community stakeholders. These stakeholders will review the preliminary search and data analysis strategies and offer recommendations for sharing the results in a user-friendly manner. This project is led by a transdisciplinary research team with lived experiences as palliative care nurses and family caregivers. By generating a comprehensive analysis of available respite services, this project most clearly aligns with Pillar 3 (partnership) by facilitating identification and dissemination of community-based carer support services; but also with Pillar 4: building resilient communities by empowering families via increased awareness of services. Compiling all respite services into a central resource will support personal care planning by identifying services that can address different families' unique needs. This access to information can empower families to seek community-delivered care and encourage innovative collaborations between local organizations and clinicians. Conclusions: By integrating various search strategies, we hope to identify a variety of respite care services throughout Québec. Assessing the features of these services may enable us to identify gaps in localized respite care needs, which may then be addressed through future research and service development. Limitations and Implications: While a comprehensive and innovative approach was developed, not all organizations providing respite care label their services as "respite", and so may not be identified in this search. However, a user-friendly summary of the identified services will be generated in both analog and digital formats, to share with community support services across Québec. [ABSTRACT FROM AUTHOR]

Background: Respite care may act as a means to reduce stress and fatigue in people caring for a dependent who has a disability. Despite this, a variety of barriers may exist to obtaining such services. This study explored caregivers' experiences seeking respite care for their children with special needs within a province in Canada., Methods: Caregivers were recruited from two agencies providing respite care for children with fetal alcohol spectrum disorders and other mental health and developmental difficulties. In total, 10 caregivers participated in in-depth individual interviews. A constructivist grounded theory approach was employed in the design and analysis of the data., Results: Caregivers discussed their frustrations with the process of finding and obtaining respite care, a course of action described as 'jumping through hoops'. This construct was composed of subcategories emphasizing the complexity of 'navigating the system', the bidirectional process of 'meeting the requirements' and the challenges of 'getting help'., Conclusions: The collective experiences of these caregivers point to the need for more flexibility and co-ordination of respite care services for children with special needs.

As utilization of home care increases across Canada, questions are emerging concerning the extent to which home care expenses, many of which are not publicly covered, are borne by unpaid caregivers of home care recipients. In this systematic review, we review English-language literature published between 2001 and 2022 exploring the magnitude and sources of home care costs incurred by unpaid caregivers in Canada. Of particular interest were empirical, cost-of-illness studies that describe the implications of these costs across domains of financial risk, including caregivers' income level, employment status, and personal health. Following the screening of 492 studies derived across 6 databases (OVID Medline, CINAHL, PsycINFO, AMED, EconLit, and EMBASE), 24 studies were included in this review. Overall, few studies describe how home care expenses incurred by unpaid caregivers contribute to their financial risk. While some studies characterize the direct costs of caregiving incurred by caregivers, including out-of-pocket expenditure on transportation to medical appointments, respite care, home renovations, supplemental housekeeping, and prescription medications, limited studies attempt to estimate the magnitude of these expenses. Concerning financial risk, the literature is chiefly concerned with indirect costs of caregiving, including consequences on caregivers' employment (foregone wages). Findings from this literature review suggest further work is needed in Canadian context to document costs associated with unpaid home care provision. [ABSTRACT FROM AUTHOR]

The Victoria AIDS Respite Care Society (VARCS) has provided respite care to people living with HIV/AIDS (PLWAs) since 1991. In 1998, an evaluation of VARCS services was undertaken to gain a better understanding of the VARCS model of community-based care. The evaluation was comprised of four components including an examination of the historical evolution of VARCS, an account of the community development processes used, a description of VARCS services, and an analysis of the impact and outcomes of VARCS services. This article highlights qualitative findings from the impact and outcomes component of this study. Guided by principles of participatory action research, this project included interviews with 85 participants. Eight themes emerged from the analysis that appeared to speak to the qualitative impact and outcomes of VARCS service. Actions taken by VARCS as a result of the evaluation findings are discussed as are the study limitations. [ABSTRACT FROM AUTHOR]

Autism is associated with a range of costs. This paper reviews the literature on estimating the economic costs of autism spectrum disorder (ASD). More or less 50 papers covering multiple countries (US, UK, Australia, Canada, Sweden, the Netherlands, etc.) were analysed. Six types of costs are discussed in depth: (i) medical and healthcare service costs, (ii) therapeutic costs, (iii) (special) education costs, (iv) costs of production loss for adults with ASD, (v) costs of informal care and lost productivity for family/caregivers, and (vi) costs of accommodation, respite care, and out-of-pocket expenses. A general finding is that individuals with ASD and families with children with ASD have higher costs. Education costs appear to be a major cost component for parents with children with ASD.

The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada. The perspectives of non-hospice health care professionals (n=4) involved in the child's care are explored. Data were gathered through audio-taped, semi-structured interviews. Initially, parents and health professionals were unaware that the hospice provided more than just end-of-life services. Parents began to consider hospice care when something changed in their lives that forced them to see things differently. This became the impetus for recognizing that CPCH might be a resource for their family. The prospect of respite care was usually the deciding factor in applying to the hospice. Parents reported benefits of hospice respite for themselves and the whole family. Recommendations for practice and future research are offered, including discussion about the feasibility of the study procedures.

What are mothers' experiences of receiving in-home nursing respite care for their children with medically fragile or complex conditions? This paper highlights selected findings from a comprehensive 2-year study designed to evaluate the impact of a Canadian nursing respite program. Data were collected at 3 time points in the homes of 27 families, using both quantitative and qualitative methods. This paper reports on 1 construct arising from unstructured interview and observational data: learning to manage the system. A specific subset of 10 mothers was chosen for constant comparative analysis of their perspectives of receiving in-home nursing respite, revealing a 4-phase process: taking in, losing control, taking charge, and managing effectively within the constraints of inflexible rules. These findings contribute to nursing knowledge about meeting the in-home respite needs of mothers of children with complex medical conditions. Implications for nursing include how to better support maternal coping, decrease uncertainty, and foster more effective relationships with mothers of children with complex conditions.

Respite services are seen as one key formal support intervention mitigating the negative consequences of family caregiving. The purpose of this paper is to examine how the caregivers' respite experience influenced their return to the responsibilities of caring for their family members. The discussion is based on a qualitative interpretative study with 20 caregivers exploring the meaning of respite to family caregivers of persons with dementia. Although the beneficial effect of the emotional and physical refreshment and renewal was evident throughout, there were notable variations in how caregivers experienced their return to caregiver responsibilities. Some experienced short-term despondency and feelings of 'let-down' while others felt guilty and emotionally devastated when they returned. Three factors emerged which related to the differential caregiver experiences: the amount of time and quality of the respite interval; the nature and quality of the respite help that was used for the dependent family member; and the condition of their dementia family member when the caregiver resumed the caregiver role. Clinicians must recognize that these factors strongly influence how the responsibilities of caregiving are resumed. Researchers must explore for additional factors which detract from the anticipated positive effects of the caregiver respite experience. Clarification of these factors can provide guidance to service providers to develop respite services that are more attuned to the caregivers' perceptions of benefit for themselves and for their dependent family members.

This longitudinal study inventoried the types of services accessed by a sample of Alberta families of children with or at-risk for disabilities. We explored the role of severity of disability, parental stress, and family income on services accessed. With few exceptions, services were accessed more frequently as the children's lives progressed but higher income families accessed more services than lower income families, even though the latter families had children with more severe disabilities. Difficulties accessing services and lack of services were reported by lower income families. The authors conclude that integrated services are necessary to improve access for those families most in need. (Contains 4 figures.)

This paper challenges traditional definitions of work and leisure as separate concepts by suggesting that a space where individuals engage in employment (paid work) can, at the same time, be a space of respite (leisure) for employees who are also family caregivers. The research aims to better understand what caregivers perceive as ideal respite space, what that space means to them, how the space where employment takes place fits that ideal and what forces restrict caregivers' ability to engage with employment as a space of respite. The term space is used because a caregiver's presence in a particular space (inside or outside of a place) gives it meaning that is simultaneously social, political and emotional. We report on a qualitative intrinsic case study of primary caregivers who are both employed and providing care to relatives with dementia. Using a reflective iterative process, 12 participants were recruited and interviewed from two Canadian provinces in 2013/14. Using a non-temporal view of respite facilitated the identification of employment as an important space for caregivers to experience effective respite. Although this connection has been noted by other scholars, our research goes beyond this to identify four forces that create challenges for caregivers who want to maintain engagement with employment as a space of respite. These forces are internalised socialisation, family and organisational pressures and government policy. In addition, this research is one of the first to suggest ways that caregivers resist these forces. In concluding remarks, we reflect on the limitations of the study and offer suggestions for further research aimed at elucidating the spatiality of caregiver respite and the complex and dynamic aspects of resistance., (© 2019 John Wiley & Sons Ltd.)

Objective: To describe a novel model for the development of Caregiver Networks that is based on the notion of partnership. Methods: We describe the background rationale and key elements of the Model in order to assist individuals in developing new Caregiver Networks and respite mechanisms. Participants: Provincial/territorial/state health and social service systems, unpaid caregivers (family members or friends) and care recipients (ill or disabled individuals across cultures and age groups) in a network partnership. Results: We demonstrated in this model that Caregiver Networks is a shared responsibility among partner members for development and evaluating network and respite care mechanisms. Conclusion: The model for developing Caregiver Networks is at the stage of implementation. The authors welcome opportunities to conduct pilot projects to evaluate this Model. [ABSTRACT FROM AUTHOR]

We examined the service needs of foster families with children who have disabilities. Foster parents in a large Canadian city were asked "What services or supports would be helpful to you?" The responses to this question were edited for clarity and to eliminate redundancies, and sorted into piles of like statements by a group of 15 foster care professionals. Two types of statistical analysis were applied to the sorting of the statements to describe the relationship between statements and their groupings. The major concepts were identified according to the contents of the cluster and a map was constructed to provide a graphic representation of the conceptualization process. The major services and supports identified in this study were: support in the community, financial support, accommodating school system, good relationships with social workers, responsive professionals, information, comprehensive medical care, services for aboriginal children and families, transitional services, and respite.

Background: Dementia is common, particularly among older adults, and is one of the major causes of dependency later in life. We sought to provide an overview and comparison of key services related to dementia care as the disease progresses in three large Canadian healthcare centres.Methods: We identified family physicians, geriatric specialists, and dementia case managers from three major population centres in Canada with universal healthcare coverage. Using a standardized longitudinal dementia case vignette, participants were interviewed on services they would provide at each stage of the disease. We used principles of content analysis to generate codes and identify themes; appropriate time frames from the vignette fitting the necessary provision of services were derived from the Canadian consensus statement and determined in consultation with clinical experts. Proportions of participants that identified dementia-related care services were analyzed at each time point of the vignette using chi-square tests.Results: Thirty-four healthcare providers from Calgary (Alberta), Edmonton (Alberta), and Ottawa (Ontario) participated. Review of our data identified seven overarching themes of dementia-related care services. Services provided in the community setting include future planning and related services, educational and social support services, and home care and respite services. Although all providers consistently identified educational and social support services (e.g. the Alzheimer Society) within the appropriate time frame, the provision of other services was variable. The proportion of providers reporting potential access of future planning services was significantly different across the three sites (Calgary, 91.7 %; Edmonton; 58.3 %; and Ottawa, 30.0 %), p = 0.012. Also, the proportion of providers that identified day program services were significantly different across the three sites (Calgary, 100.0 %; Edmonton, 91.7 %; and Ottawa, 60.0 %), p = 0.023 according to a chi-square test.Conclusions: We found important types of variability in service delivery among different regions in Canada for a typical patient with dementia and their family caregiver. Health systems can be calibrated by aligning services from different settings to appropriate time points in the vignette, which illustrates the dynamic course of service delivery and opportunities for improvement throughout the disease trajectory. [ABSTRACT FROM AUTHOR]

Objective: The objective of this study was to determine the extent of changes in mental health status of children in a respite service as little has been reported on this aspect of respite care. Method: All families enrolled in a new centre-based respite program in a moderately large urban center in Canada were invited to participate. The child's primary caregiver completed the Strengths and Difficulties Questionnaire (SDQ) at baseline, mid-point and endpoint, as did respite staff. A comparison group of primary caregivers seeking respite care also completed the same ratings at baseline and at one-follow-up point. Results: The children's primary caregivers perceived high levels of mental health difficulties in their children at baseline; significantly more than respite providers. No significant changes were found between SDQ baseline and endpoint values for either primary caregivers or respite workers. The amount of change between baseline and midpoint was no different for the intervention and comparison group. Conclusions: No evidence of a positive impact on child mental health status by the new respite program as measured by the SDQ was detected. Specific evidence-based child mental health interventions may need to be paired with respite care to improve child mental health outcomes. [ABSTRACT FROM AUTHOR]

South Australia releases national and international travel scholarships every year to the nursing and midwifery workforce to enable them to undertake observational site visits to inform the development of service models that can be introduced into care practices back in South Australia. Ten sites across New Zealand, Canada, and the UK agreed to host a site visit as part of a scholarship to look at day hospice (DH) programmes. The author undertook an observational study that included participation in DH programmes and discussions with staff and patients. There were many similarities across the three countries, in particular in the structure of the programmes, the staff makeup, and the support of the volunteer workforce. Two distinct models were observed: social and medical. Each has its value and both need to be incorporated to ensure services and participants have their needs met. Based on the site visits and other research, the author devised a proposal for South Australia to commence with a time-limited sessional group DH programme with a focus on maintenance of function for participants coupled with caregiver education and information provision. [ABSTRACT FROM AUTHOR]

In an interview, an adult learner with the Canadian School of Management discusses her research proposal aimed at strengthening the capability of the facility where she works to deal with clients suffering from Alzheimer's disease (AD) and other forms of dementia. The learner describes her motivation for this kind of work. She describes how she will apply some of the action learning principles recently learned to bring a mix of people together to discuss and work through issues relating to the care of clients residing in the Alzheimer unit. Canadian statistics suggest that at this time, one in three adults over the age of 85 and 1 in 13 over the age of 65 is affected with Alzheimer's or other forms of dementia. These numbers are expected to grow significantly as the population ages. The learner explains how, through her initiative, the facility will be more equipped to both meet the needs of current clients and those in the future.

Medical advances in recent years have led to an increased life span for children with progressive, neurodegenerative illnesses. The purpose of this hermeneutic inquiry was to explore the experience of families caring for their child at home. In-depth, audiorecorded interviews with six families (13 interviews) living in western Canada were transcribed and analyzed. The illness journey was revealed to be complex and unpredictable. We discovered many metaphors that spoke to the child's/family's life and explored the paradox of duality, such as holding both joy and sorrow, and containing both suffering and love. We outline implications for policy development within the area of respite care and coordination of services for families. The voices of families must be a vital component to influence and guide education and service development within the emerging specialty of pediatric palliative care.

The article reports that the Canadian Healthcare Association urges the adoption of a pan-Canadian approach to support those who provide care to family and friends. The author states that the approach will ease the financial burden of caregiving through tax changes. He notes that the association will help improve training of respite workers, and develop more research aimed at determining effective means of providing respite.

Public resilience, an important determinant of effective disaster management, is dynamic, and families coping with debilitating illnesses, such as stroke or dementia, experience unique vulnerabilities as a result of their caregiving responsibilities. When social networks cannot sustain care, family caregivers turn to formal respite programmes for support. This has tremendous implications on demands for respite services in any disaster response. With an ageing population, the demands for family caregiving are increasing, and more people face the challenges of balancing work and family responsibilities. This includes members of the response community who have family members who need assistance with daily living. Without support, many responders may struggle to fulfil their professional roles, creating a threat to response capacity. Preparedness interventions should focus on building resilience and encourage families to explore possibilities for respite care as well as other standard strategies to ensure self-sufficiency in the early phases of a disaster.

A survey of preschool children to establish the incidence of autistic or autistic-like behavior and unmet needs was carried out in the Lower Mainland of British Columbia. Forty-eight children ages two to seven were identified (3.8 boys to one girl). Among needs cited were behavior management consultation, respite care, and recreational programs. (Author/JW)

In this article, the authors explore the home care experience as described by older physically impaired individuals and their caregiving spouses. Separate face-to-face semistructured interviews were carried out with each spouse from nine couples. Analysis of the interview data revealed four themes. For care receivers the themes were Independence and Developing a Trusting Relationship With Home Care Workers. Relief and Continuity were voiced by the caregiving spouses. The authors show how these themes relate to the participants' sense of security, which emerged as a key underlying concept in the home care experience. This study adds to the home care and caregiving literature as it expands our understanding of the relationship between formal and informal caregiving, highlights issues and concerns older couples face as they receive home-based care, and includes both older spouse caregivers and their direct-care recipients.

Objective To describe the use of formal respite services among caregivers of children with cerebral palsy in Ontario and discuss the factors that may contribute to respite use and non-use. Methods A total of 468 caregivers were interviewed about their experience with formal respite services. Interviews were part of a larger cross-sectional study on caregiver health. Caregivers were asked about their knowledge of formal respite services; their use of formal respite services in the past year; financial implications relating to formal respite use; perceived barriers to formal respite service use; and reasons for not using formal respite services (if applicable). Results Nearly half (46%) of caregivers in the sample reported using respite services in the past year. Most of the caregivers who used respite services used more than one source of respite, had services provided in their home, often for less than 1 day, and reported using them more than six times. The most commonly cited reason for using formal respite services was for a planned break. Many factors influenced caregivers' use of formal respite services. Caregivers who had a child with a lower level of function, with multiple additional conditions, or who was male, were more likely to use formal respite services. Although over 90% of caregivers indicated that respite use is beneficial for both their family and child, over 60% reported facing many barriers while attempting to access respite services. Conclusion Results from this cross-sectional study indicate that caregivers who used respite services used them frequently for breaks from caregiving. Caregivers described facing many barriers while attempting to access respite services therefore to improve caregiver's experience with respite services, strategies are suggested. [ABSTRACT FROM AUTHOR]

AIM OF THE STUDY: To present the results of evaluation research investigating a successful community development project. RATIONALE: Many governments, health care agencies, and organizations require community participation in health care. As a result, nurses and other health professionals are often required to practice using a philosophy of community development. Although the theoretical, philosophical, and practical components of community development are well articulated, there is little evidence that exemplifies the experience of initiating and participating in a community development project. This paper provides evidence of how one organization successfully engaged the broader community on a respite care project. METHOD: Using qualitative research methods and guided by the principles and practices of participatory action research, this evaluation engaged with the community in data collection, analysis, dissemination of finding, and in promoting effective change. RESULTS: Four themes emerged that provide insight into how one HIV/AIDS organization successfully undertook community development. These themes include: (a) identifying a community need; (b) addressing the various components identified in the community development process; (c) highlighting the strategies used to engage in successful community development; and (d) attending to factors that influence community development. CONCLUSION: The results of this research contribute to the body of knowledge related to engaging in the process of community development. By highlighting the experiences of one community group, it is hoped that nurses can learn and incorporate this knowledge into practice. [ABSTRACT FROM AUTHOR]

Introduction: The UNICEF-WHO Global Report on Developmental Delays, Disorders, and Disabilities is an ongoing initiative aimed at increasing awareness, compiling data, providing guidance on strengthening health systems, and engaging country-level partners. Data from its caregiver survey assessing impacts of the COVID-19 pandemic showed that half of youths with developmental delays and disabilities (DDDs) and their caregivers struggled to cope, with a significant portion reporting a lack of supports and difficulty managing the worsening of the child’s symptoms in isolation. Governments created service strategies supporting vulnerable groups. Little is known about the alignment between COVID-19 policies for persons with disabilities and their lived experiences. Contextualizing caregivers’ experiences can promote the development of tailored public supports for these families following a public health crisis. Methods: Online survey data were collected from June-July 2020, leading to a convenience sample of caregivers of youth with DDDs across Canada. Respondents answered two open-ended questions regarding challenges and coping strategies during the pandemic. We conducted a thematic analysis of responses using inductive coding on NVivo software. Overarching codes derived from the dataset were contextualized using an analysis of provincial policies published during the pandemic. Parallels with these policies supported the exploration of families’ and youths’ experiences during the same period. Results: Five hundred and seventy-six (N = 576) participants answered openended questions. Barriers to coping included family mental health issues, concerns about the youths’ regression, challenges in online schooling, limited play spaces, and managing physical health during quarantine. Environmental barriers encompassed deteriorating family finances, loss of public services, and a lack of accessible information and supports. In contrast, caregivers reported coping facilitators, such as family time, outdoor activities, and their child’s resilience. Environmental facilitators included community resources, public financial supports, and access to telehealth services. Few COVID-19 [ABSTRACT FROM AUTHOR]

Introduction: Patients with higher-risk myelodysplastic syndromes (MDS) face considerable challenges in disease management and often require caregiver support. Reports on the burden of caring for patients with advanced cancer suggest that caregivers receive insufficient support. Our research aimed to identify key challenges for caregivers of patients with higher-risk MDS. Methods: Online bulletin board is a qualitative research methodology which enables data collection via a web-based platform. A mix of moderator-led discussion guide and interparticipant discussion provides the caregiver insights as online dialogue, which then undergo content analysis to extract key findings. Results: Sixteen caregivers participated from the USA (n = 5), UK (n = 6) and Canada (n = 5). Content analysis identified the caregiver experience in higher-risk MDS as multifactorial, with seven key categories of caregiver burden: caregiver role and burden, mental health, family dynamics, disease experience, treatment experience, healthcare professional (HCP) interactions and information and education. Conclusion: There is significant impact and burden on caregivers of patients with higher-risk MDS, which varies depending on disease stage, choice (or lack of choice) of treatments, and the personal situation of the caregiver. Emotional stress occurs mostly at diagnosis/prognosis stage and when told to 'watch and wait', which is amplified when HCPs are perceived to lack knowledge/expertise about MDS. There is a need for better education about MDS for HCPs, patients, caregivers and the general community; a need for improved communication between patients/caregivers and HCPs; and a high unmet need for better mental health and emotional support for both patient and caregiver. [ABSTRACT FROM AUTHOR]

Therapeutic recreation camps have been considered to be an effective context for improving the psychosocial functioning of children with congenital heart disease (CHD). However, there is limited research regarding their impact on parents. Nine parents participated in two semi-structured interviews before and after their children attended a camp for children with CHD. Parents described their perceptions of their children's camp experiences and identified the psychosocial utility of camp for themselves. Camp enabled parents to let their children grow and be independent, and helped reduce parents' restricting and overprotective behaviours. Camp also provided parents with respite care, which alleviated their need to be 'cardiac' parents. These findings strengthen the case for therapeutic recreation camps and underscore the importance of expanding camp access to more families affected by CHD. [ABSTRACT FROM AUTHOR]

AgeTech, a subset of the health technology industry, uses technology to support healthy aging, and support care partners and health professionals to improve quality of life for aging adults. By enhancing and adapting alternative care approaches through emerging technologies, it is possible to enable and extend the ability for older adults to safely age in place within their own homes, improve care experiences, and/or decrease long-term care costs/needs. With the rapid development and proliferation of AgeTech into the consumer market, it is paramount for policymakers and funders to ensure that AgeTech solutions can be leveraged to support older adults to age well in place. This paper highlights five key messages for policymakers and funders drawing on experiences from Canada. First, it is essential to embrace a life course perspective on aging, recognizing the heterogeneity of older adults who experience diverse and evolving needs. AgeTech should adapt as needs and capacities evolve. Second, AgeTech should solve a real problem. Technology must be well aligned to the needs and preferences of older adults to be impactful. Third, health related AgeTech should empower, enhance, or support existing health care services, while recognizing the value of human interactions. In-person interactions can provide meaningful connection and important health data which should be enhanced not replaced. Fourth, the establishment and ongoing fostering of authentic partnerships to inform, co-create and co-design AgeTech solutions is key to developing successful products. Finally, policymakers and funders have an important role to play in enabling accelerated design, development and testing to meet current and future needs. [ABSTRACT FROM AUTHOR]

Background: The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children's holistic health needs at the end of life. Methods: A scoping review of the international scholarly literature was conducted. Thirteen data sources were searched to search the scholarly literature without date limits until January 2022. Studies were included on the basis of population: children (aged 0–19 years), families and caregivers; setting (in Canada and end-of-life or dying phases of living) and concepts of interest (dying and death). Results: Of the 7377 studies identified, 12 were included for data extraction and content thematic analysis. The themes and subthemes include: 1) valuing the whole person; 2) living while dying; 3) authentic death talk; 4) a supportive approach (with lack and presence of support as subthemes); and, 5) a personalist approach. Conclusions: There is a pressing need for research into the meaning of dying and death for children, their carers and families in Canada. Lack of holistic care, authentic death talk, specialized pediatric palliative care providers, a personalist approach and communities of support present major gaps in care for Canadian children. Research is urgently needed to address these knowledge gaps to generate policy and support practice for dying children in Canada. [ABSTRACT FROM AUTHOR]

The objective of the present study was to examine the health beliefs, values and practices of rural residents living in two geographically diverse regions of western Canada.An ethnographic study with semistructured interviews of 55 persons was conducted with participants ranging in age from 19 to 84 years.Being healthy was described as having balance in one's life, taking into consideration the relationship between the physical, mental, social, and spiritual aspects of the person. Health-seeking behaviours spanned the gamut of diet, exercise, sleep, home remedies, a belief in a spiritual being, to consulting health professionals. Resources that participants valued included professionals who listened, friends, neighbours, church, music, elders, ambulance service and the internet.It is important that professionals view the person beyond the disease and take into account more than the physical manifestations of an illness. A key component is the demonstration of respect for all persons regardless of age. It is essential that health professionals develop websites providing accurate health-care information. Participants noted the need to recruit and retain professionals in rural regions.Canadian rural research, to date, has largely focused on the recruitment of rural health-care providers. Nurse researchers from Montana discovered that rural dwellers have a tendency to define health from a role performance perspective that meant being able to work and meet family obligations; in contrast to urban dwellers, who tend to focus upon the comfort, cosmetic and life prolonging aspects of health. Because of the paucity of Canadian published literature on this topic, the health benefits, values and practices of rural Canadians are entirely speculative.Data analysis revealed several themes with implications relevant to health-care professionals. Being healthy was described as involving the physical, mental, social and spiritual aspects of a person. Health-seeking behaviours engaged in included diet, exercise, sleep, home remedies, spiritual beliefs and consulting health professionals. Accessing accurate health information was identified as a significant resource. The development of websites by health-care professionals to facilitate the acquisition of information that are understandable and pertinent was seen as one way of meeting this need. Those health professionals who truly listen to their patients and view them as whole persons rather than disease entities are highly valued. Health professionals need to be retained once recruited if trusting relationships are to be developed and maintained. To maintain these relationships over the long term, resources that support the elderly and infirm must be secured and further developed, such as day programs, respite care for family members and palliative care services. [ABSTRACT FROM AUTHOR]

Research in America, Canada, Australia and Britain has revealed that disabled children are particularly vulnerable to abuse. Their likelihood of attending residential institutions, their dependency on others for personal care and the lack of opportunities for them to alert others to maltreatment or comprehend the nature of abusive acts all increase levels of risk. Over the last decade, there has been increasing public and professional concern about the abuse of children in residential establishments, resulting in a number of inquiries. However, the abuse of disabled children in residential settings has received little attention. Despite residential schools, care homes and respite care being widely used by disabled children, there is a paucity of knowledge regarding the standards of child protection in these establishments. This article explores the research literature revealing the vulnerability of disabled children to abuse when living away from home, what measures can be taken to help protect them and the limitations of available data as a basis for planning child protection measures. Copyright © 2002 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

BACKGROUND: Care partners are essential supports to individuals with multiple sclerosis (MS). Both negative and positive outcomes associated with the caregiving role have been reported. Psychological resilience may be an important factor influencing the MS caregiving experience, but an MS-specific model of care partner resilience has yet to be established. This study sought to explore an explicit model of MS care partner resilience. METHODS: Cross-sectional data from 471 Canadian MS care partners were collected via an online survey. Confirmatory factor analysis (CFA) and structural equation modeling (SEM) were used to test measures within a hypothesized model of resilience. Resilience was measured using the 25-item Connor-Davidson Resilience Scale. RESULTS: Following CFA, the hypothesized model was simplified due to the poor fit of several variables. The final model yielded a moderate SEM fit (χ² = 6030.95, P < .01). Being a woman was associated with greater caregiving tasks (β = 0.53, P < .001) and poorer spiritual health (β = --0.35, P < .001). Spiritual health, but not caregiving tasks, had a positive impact on both positive (β = 0.48, P < .01) and negative coping (β = 0.49, P = .01). Quality of life and resilience did not have relationships with other variables in the model. However, quality of life had a positive, unidirectional influence on resilience (β = 0.83, P < .01). CONCLUSIONS: Our findings indicate that spiritual health is an important predictor of coping and should be further explored in MS care partners. Quality of life may act as a precursor to resilience within MS care partners. Further research and exploration into MS care partner resilience is warranted to confirm this exploratory model. [ABSTRACT FROM AUTHOR]

This study explores the state of kinship care in British C olumbia (BC), Canada 10 years after the implementation of major policy reform designed by the provincial government to improve services to kinship caregivers. It arises from a community-based research project that included Parent Support Services (PSS), a charitable nonprofit organization that supports kinship caregivers in BC, and the University of Northern British Columbia (UNBC). Two hundred participants were involved, including kinship caregivers and key informants. Data collection used surveys, focus groups, and interviews. The key recommendation from this article is that there should be ongoing evaluation of the experiences of kinship caregivers, particularly after policy changes, to ensure that kinship care programs meet the needs of those for whom they were created. Based on what was shared by the caregivers, secondary recommendations around the provision of supports and services are also provided. [ABSTRACT FROM AUTHOR]

Children with disabilities were especially vulnerable during the COVID-19 pandemic, and policies designed to mitigate its effects were limited in addressing their needs. We analyzed Canadian policies related to children with disabilities and their families during the COVID-19 pandemic to identify the extent to which these policies aligned with the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) and responded to their mental health needs by conducting a systematic collection of Canadian provincial/territorial policies produced during the pandemic, building a categorization dictionary based on the UN CRPD, using text mining, and thematic analysis to identify policies' alignment with the UN CRPD and mental health supports. Mental health was addressed as a factor of importance in many policy documents, but specific interventions to promote or treat mental health were scarce. Most public health policies and recommendations are related to educational settings, demonstrating how public health for children with disabilities relies on education and community that may be out of the healthcare system and unavailable during extended periods of the pandemic. Policies often acknowledged the challenges faced by children with disabilities and their families but offered few mitigation strategies with limited considerations for human rights protection. [ABSTRACT FROM AUTHOR]

Understanding what culturally safe care means to First Nations people is the first step to reimagining how healthcare can be conceived and operationalized. This study explored the meaning of culturally safe cancer care with Algonquins of Pikwakanagan First Nation in Canada, including community members' perceptions of barriers to receiving it. Two focus groups using journey mapping were held with cancer survivors and family members (n = 16) and healthcare providers (n = 12), followed by individual interviews (n = 13). Discussions were video-recorded, transcribed verbatim, and thematically analysed. Culturally safe cancer care encompassed: (a) family and community, (b) culture as healing, and (c) stories for sharing cultural teachings. Ongoing systemic racism was described as prevalent in cancer care today and a significant barrier to culturally safe care. Further research is needed for health system change to dismantle the systemic and structural factors that continue to make healthcare unsafe and harm Indigenous People. [ABSTRACT FROM AUTHOR]

Background: In Canada, virtual health care rapidly expanded during the COVID-19 pandemic. There is substantial variability between older adults in terms of digital literacy skills, which precludes equitable participation of some older adults in virtual care. Little is known about how to measure older adults' electronic health (eHealth) literacy, which could help healthcare providers to support older adults in accessing virtual care. Our study objective was to examine the diagnostic accuracy of eHealth literacy tools in older adults. Methods: We completed a systematic review examining the validity of eHealth literacy tools compared to a reference standard or another tool. We searched MEDLINE, EMBASE, CENTRAL/CDSR, PsycINFO and grey literature for articles published from inception until January 13, 2021. We included studies where the mean population age was at least 60 years old. Two reviewers independently completed article screening, data abstraction, and risk of bias assessment using the Quality Assessment for Diagnostic Accuracy Studies-2 tool. We implemented the PROGRESS-Plus framework to describe the reporting of social determinants of health. Results: We identified 14,940 citations and included two studies. Included studies described three methods for assessing eHealth literacy: computer simulation, eHealth Literacy Scale (eHEALS), and Transactional Model of eHealth Literacy (TMeHL). eHEALS correlated moderately with participants' computer simulation performance (r = 0.34) and TMeHL correlated moderately to highly with eHEALS (r = 0.47–0.66). Using the PROGRESS-Plus framework, we identified shortcomings in the reporting of study participants' social determinants of health, including social capital and time-dependent relationships. Conclusions: We found two tools to support clinicians in identifying older adults' eHealth literacy. However, given the shortcomings highlighted in the validation of eHealth literacy tools in older adults, future primary research describing the diagnostic accuracy of tools for measuring eHealth literacy in this population and how social determinants of health impact the assessment of eHealth literacy is needed to strengthen tool implementation in clinical practice. Protocol registration: We registered our systematic review of the literature a priori with PROSPERO (CRD42021238365). [ABSTRACT FROM AUTHOR]

Family care-giving is associated with social isolation, which can lead to adverse health and wellbeing outcomes among family care-givers. The role of geographic distance in care-giver social isolation (CSI) is unclear and has received mixed research findings. Framed by the Ecological Model of Caregiver Isolation, this study examined the relationship between geographic distance and CSI, including the interaction between geographic distance and care-giving intensity for CSI. Linear regression and analysis of covariance were used to test these hypotheses using a sub-set of family care-givers from the 2012 Canadian General Social Survey (N = 2,881). Care-givers living a short distance from receivers reported lower levels of social isolation than co-resident, moderate-distance and long-distance care-givers. Being involved in higher-intensity care-giving as the primary care-giver, undertaking more care-giving tasks and providing care more frequently resulted in higher CSI scores. Long- and moderate-distance care-givers reported greater CSI than co-resident and short-distance care-givers only when providing higher-intensity care-giving. Employing a granulated measure of geographic distance positioned within an ecological framework facilitates an understanding of the nuanced association between geographic proximity and CSI. Furthermore, the identified interaction effects between geographic distance and care-giving intensity on CSI further explicate the complexity of care-giving experiences. The findings are relevant for programmes supporting care-givers in different contexts, especially distance care-givers. [ABSTRACT FROM AUTHOR]

Resilience research in family caregiving in chronic neurological conditions is growing, but multiple sclerosis (MS) caregivers are noticeably absent from this body of work. MS caregivers represent a unique population due to the disease's early onset, prolonged life expectancy, and heterogeneity. As such, this study aimed to explore MS caregivers' conceptualizations of resilience, examine MS caregivers' experiences of resilience development, and determine which assets and resources influence resilience in this role. Twenty-four Canadian MS caregivers were recruited. Semi-structured in-depth interviews were conducted with questions derived from an ecological resilience framework. Data were analysed using reflexive thematic analysis. Themes constructed a cyclical resilience model, beginning with encounters with hardship and extending to thriving adjustment. Subthemes included reports of additive challenges, impactful individual and community resources, and multi-level adaptive pathways. Within this cycle, the achievement of healthy adjustment exerted a positive feedback function and informed future responses to lifelong challenges. Despite the salience of resilience processes within caregiver testimonies, inadequate resources at societal levels were evident. These findings afford researchers and decision-makers relevant information for designing and implementing resilience-building interventions for MS caregivers that attend to contextual factors and current systemic support deficiencies. [ABSTRACT FROM AUTHOR]