Parental Involvement in the Transition from Paediatric to Adult Care for Youth with Chronic Illness: A Scoping Review of the North American Literature.

With medical advancements and improvements in medical technology, an increasing number of children with chronic conditions survive into adulthood. There is accordant growing interest toward supporting adolescents throughout the transition from paediatric to adult care. However, there is currently a paucity of research focusing on the role that these patients' parents should play during and after the transition to adult care and if maintained parental involvement is beneficial during this transition within a North American context. Accordingly, this scoping review utilized Arksey and O'Malley's five-step framework to consider parental roles during chronically ill children's transition to adult care. APA PsycInfo, CINAHL, EMBASE, MEDLINE, ProQuest, and Scopus were searched alongside advanced Google searches. Thematic content analysis was conducted on 30 articles meeting the following inclusion criteria: (1) published in English between 2010 and 2022, (2) conducted in Canada or the United States, (3) considered adolescents with chronic conditions transitioning to adult care, (4) family being noted in the title or abstract, and (5) patient populations of study not being defined by delays in cognitive development, nor mental illness. Three themes emerged from the literature: the impacts of maintaining parental involvement during transition to adult care for patients, parents experiencing feeling loss of stability and support surrounding the transition of their child's care, and significant nonmedical life events occurring for youths at the time of transition of care. Parents assuming supportive roles which change alongside their maturing child's needs were reported as being beneficial to young peoples' transition processes, while parents who hover over or micromanage their children during this time were found to hinder successful transitions. Ultimately, the majority of reviewed articles emphasized maintained parental involvement as having a net positive impact on adolescents' transitions to adult care. As such, practice and policies should be structured to engage parents throughout the transition process to best support their chronically ill children during this time of change.

Patient-Centered Access to IBD Care: A Qualitative Study.

Background: Canada has the highest global age-adjusted incidence and prevalence rates of inflammatory bowel disease (IBD). Due to IBD patient volumes and limited resources, challenges to timely access to specialty care have emerged. To address this gap, the aim of this paper was to understand the experiences and perspectives of persons living with IBD with a focus on accessing health care. Methods: Using a qualitative descriptive approach, patients diagnosed with IBD (≥18 years of age) were purposively sampled from rural and urban gastroenterology clinics and communities across Canada. Co-facilitated by a researcher and patient research partner, 14 focus groups were recorded, transcribed, and coded for themes. Thematic analysis was used to ascertain the congruence or discordance of IBD specialty care access experiences. Results: A total of 63 individuals participated in the study. The majority of participants were female (41/63, 65%) and from urban/suburban regions (33/63, 52%), with a mean age of 48.39 (range 16-77 years). The analysis generated three main themes: (1) need for patient to be partner, (2) adapting IBD care access to individual context, and (3) patient-defined care priorities should guide access to IBD care. Conclusions: The complexity of specialty care access for IBD patients cannot be underestimated. It is vital to possess a robust understanding of healthcare system structures, processes, and the impact of these factors on accessing care. Using a patient-centered exploration of barriers and facilitators, IBD specialty care access in Canada can be better understood and improved on provincial and national levels.

Interventions for Grieving and Bereaved Informal Caregivers: A Scoping Review of the Canadian Literature.

Background: The palliative approach to care is playing a larger role in the healthcare of older adults in Canada. Within (hospice) palliative care, informal caregivers play a crucial role as part of the interdisciplinary care team. Ensuring high quality palliative care includes providing effective grief and bereavement supports for them. Objective: This study aimed to identify current interventions addressing the grief and bereavement experiences of informal caregivers of geriatric patients in the Canadian (hospice) palliative/end-of-life care realm. Methods: A scoping review was undertaken using Arksey and O'Malley's framework. Seven electronic health and social science databases were searched. In addition, several stakeholder organizations' websites were reviewed to identify grey literature sources. Interventions that took place in Canada, were in English, and explored grief and bereavement supports for informal caregivers in an adult/geriatric (hospice) palliative care setting were included. After full text review, data were extracted and charted. Major themes were established following thematic content analysis. Results: Within a total of 18 sources, three themes were identified: (1) Classification of intervention, (2) Format of intervention, and (3) Intervention target. Method of delivery and type of intervention for grief and bereavement supports were aligned with the international literature. There is a need for large-scale evaluations of interventions and informal caregivers should be engaged in this process. Practitioners should be encouraged to direct bereavement interventions toward grieving caregivers, and to collaborate with them to improve access to these interventions. Policy makers should provide additional funding for grief interventions for informal caregivers. Conclusions: It is important to better understand the needs of informal caregivers experiencing grief and bereavement. Interdisciplinary collaborations will be necessary to develop, evaluate, and scale future interventions.

Patient Experiences in the Management of Inflammatory Bowel Disease: A Qualitative Study.

Background: Inflammatory bowel disease (IBD) can lead to substantial impairments of quality-of-life. Clinical guidelines and quality indicators aid physicians in practice but may not reflect the perspectives and experiences of patients with IBD. To address this, the objectives of this study were to understand patient experiences with IBD care and to explore priorities. Methods: Based on a convenience sample of 36 participants, five focus groups were completed at four sites across Canada. Data were analyzed using a deductive thematic analysis approach to assess emergent themes and variability in participants' experiences. Results: Our results are organized by themes of structure, process and outcomes to illustrate common issues with respect to how care is organized in the healthcare system, how patients receive and experience care and how patients perceive the outcomes of their care. Our results frame a health systems quality approach that signal needed improvements in access to care, the need for innovation with respect to virtual medicine, the potential expansion of multidisciplinary team-based care and the importance of addressing the psychosocial dimensions for patients with IBD and their caregivers in order to better deliver patient-centred care. Conclusions: The issues identified have the potential to impact priority areas in the system, IBD care delivery, and how outcomes can be improved by focusing on 'lived experience' and patient-centred care. The differing values and perspectives of all those involved in caring for patients with IBD underscore the importance of good communication with patients, caregivers and family members, as well as staying responsive to evolving needs.

Advance Care Planning for Seniors Diagnosed with Dementia: A Scoping Review of the Canadian Literature.

Advance care planning (ACP) is commonly recommended for persons living with dementia. Increasing age and uncertain disease trajectory add complexity to this process. A scoping review of the Canadian literature was completed to assess the feasibility and acceptability of ACP for seniors (≥ 65 years of age) diagnosed with dementia and to provide practice, policy, and research recommendations towards ACP as a critical aspect of care. Twenty-nine articles were grouped into five themes: (1) feasibility of patient engagement in ACP; (2) opinions regarding medical assistance in dying (MAiD) for incompetent patients; (3) knowledge translation to support persons living with dementia, professionals, and caregivers; (4) barriers to and facilitators of the delivery of holistic dementia care; and (5) Indigenous health considerations. Additional research should consider socio-demographic and social/cultural factors associated with older persons living with dementia's engagement in ACP. Future policies warrant a multidisciplinary approach when reviewing legalities. Finally, ACP knowledge translation should become a routine aspect of dementia care.

Support for Informal Caregivers in Canada: A Scoping Review from a Hospice and Palliative/End-of-Life Care Lens.

Objective: Informal caregivers (ICs) providing care for those at the end-of-life face physical, psycho-social, emotional, and/or financial challenges. However, there is a paucity of research towards the effectiveness of available interventions for this vulnerable population. The purpose of this scoping review was to investigate the availability and efficacy of interventions for ICs providing hospice and palliative/end-of-life care in Canada. Methods: Using Arksey and O'Malley's five step framework, a scoping review was conducted in the spring of 2020. Key electronic healthcare, social sciences, and grey literature databases were searched. Relevant publications from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis was conducted to summarize all key findings. Results: Initial searches yielded 145 results out of which 114 distinct articles were obtained. De-duplication and final screening yielded 28 sources which met inclusion criteria (22 peer-reviewed articles [78%] and 6 grey sources [22%]; 12 qualitative papers [42%]). Through thematic content analysis, four major themes were identified: [1] Direct financial support, [2] Direct psycho-sociospiritual support, [3] Indirect patient information provision/education, and [4] Indirect patient support. Conclusions: Healthcare practitioners should provide information on patient care and financial aid to ICs. Policies should aim to expand eligibility for and access to financial aid, in particular the Compassionate Care Benefits (CCB). Future research should focus on exploring other interventions, such as physical activities, to better support this vulnerable population. The results from this review will help inform and improve the well-being of ICs providing end-of-life care in Canada and beyond.

The Grief and Bereavement Experiences of Informal Caregivers: A Scoping Review of the North American Literature.

Background: Informal caregivers are a significant part of the hospice and palliative care landscape as members of the interdisciplinary care team. Despite this, little is known about the impact this responsibility has on informal caregivers' experiences of grief and bereavement. Objective: To address this, a scoping review of the literature was conducted to explore the current state of knowledge toward grief and bereavement of informal caregivers of adult/geriatric patients in the hospice and palliative/end-of-life care realm within North America. Methods: Using Arksey and O'Malley's 5-step framework, key electronic health care and social sciences databases (eg, CINAHL, MEDLINE, ProQuest Sociological Abstracts, PsycINFO) alongside gray literature sources were searched and screened against inclusion and exclusion criteria. A thematic content analysis was used to identify key themes. Results: 29 articles met the final inclusion criteria with 3 central themes emerging: (1) mediators of grief, (2) grief experiences, and (3) types of grief. Discussion: Informal caregivers encounter unique grief and bereavement experiences: The range of psychosocial outcomes, both negative and positive, can be affected by various mediators such as caregiver burden, demographics, disease type of the patient being cared for, etc. Bereavement interventions must be designed with the mediators of grief in mind. Conclusions: Understanding the nuances of informal caregivers' experiences with grief and bereavement will inform and advance practice, policy, and research. Practitioners/clinicians should be further educated on how to properly acknowledge the complexity of grief and bereavement for informal caregivers, specifically paying attention to mediators. Further research needs to consider the role of culture.

Informal Caregiving for People With Life-Limiting Illness: Exploring the Knowledge Gaps.

Background: People with life-limiting illness are increasingly having more care provided to them by informal caregivers (ICs) such as family members and friends. Although there is a substantial amount of literature surrounding informal caregiving, there is a paucity of research from a hospice palliative care angle. To address this knowledge gap, this scoping review explored the effects of/challenges to informal caregiving at the end of life in Canada. Methods: Scoping review of the literature following Arksey and O'Malley's framework. Key healthcare and social sciences databases alongside the gray literature were searched. Relevant scholarly and gray literature sources from 2005 to 2019 were screened for inclusion criteria, and a thematic content analysis employed to summarize findings. Results: Of 2,717 initial search results, 257 distinct full text articles were obtained. Following deduplication and screening, 33 met inclusion criteria. Four major themes were identified: (1) Physical health challenges, (2) Psycho-socio-spiritual health challenges, (3) Financial issues, and (4) Health system issues. Gender of ICs was also found to be an important contributor to the differing effects of providing support. Conclusions: This review raises awareness toward ICs regarding the numerous physical, psycho-socio-spiritual, financial, and health system challenges faced during care for people with life-limiting illness. The knowledge gained will inform and advance future practice, policy, and research. Application to interventions (such as caregiver benefits) will assist to improve informal caregiving experiences and outcomes alongside quality of life. Further research is required to understand these unique experiences and the challenges of minority IC populations.

Impact of Fellow Participation During Colonoscopy on Adenoma Detection Rates.

BACKGROUND: An endoscopist's adenoma detection rate (ADR) is inversely related to interval colorectal cancer risk and cancer mortality. Previous studies evaluating the impact of gastroenterology fellow participation in colonoscopy on ADR have generated conflicting results. AIMS: We aimed to determine the impact of fellow participation, duration of fellowship training, and physician sex on ADR and advanced ADR (AADR). METHODS: We retrospectively analyzed average-risk patients undergoing screening colonoscopy at Veterans Affairs New York Harbor Healthcare System Brooklyn Campus and Kings County Hospital Center. Review of colonoscopy and pathology reports were performed to obtain adenoma-specific details, including the presence of advanced adenoma and adenoma location (right vs. left colon). RESULTS: There were 893 colonoscopies performed by attending only and 502 performed with fellow participation. Fellow participation improved overall ADR (44.6% vs. 35.4%, p < 0.001), right-sided ADR (34.1% vs. 25.2%, p < 0.001), and AADR (15.3% vs. 8.3%, p < 0.001); however, these findings were institution-specific. Year of fellowship training did not impact overall ADR or overall AADR, but did significantly improve right-sided AADR (p-value for trend 0.03). Female attending physicians were associated with increased ADR (47.1% vs. 37.0%, p = 0.0037). Fellow sex did not impact ADR. CONCLUSIONS: Fellow participation in colonoscopy improved overall ADR and AADR, and female attending physicians were associated with improved ADR. Year of fellowship training did not impact overall ADR or AADR.

Hospice Palliative Care (HPC) and Medical Assistance in Dying (MAiD): Results From a Canada-Wide Survey.

BACKGROUND: With the legalization of medical assistance in dying (MAiD) in Canada, physicians and nurse practitioners now have another option within their scope of practice to consider alongside hospice palliative care (HPC) to support the patient and family regardless of their choice toward natural or medically assisted death. To elucidate insights and experiences with MAiD since its inception and to help adjust to this new end-of-life care environment, the membership of the Canadian Hospice Palliative Care Association (CHPCA) was surveyed. METHODS: The CHPCA developed and distributed a 16-item survey to its membership in June 2017, one year following the legalization of MAiD. Data were arranged in Microsoft® Excel and open-ended responses were analyzed thematically using NVivo 12 software. RESULTS: From across Canada, 452 responses were received (response rate: 15%). The majority of individuals worked as nurses (n = 161, 33%), administrators (n = 79, 16%), volunteers (n = 76, 16%) and physicians (n = 56, 11%). Almost 75% (n = 320) of all respondents indicated that they had experienced a patient in their program who had requested MAiD. Participants expressed dissatisfaction with the current psychological and professional support being provided by their health care organization and Ministry of Health - during and after the MAiD procedure. CONCLUSION: The new complexities of MAiD present unique challenges to those working in the health-care field. There needs to be an increased focus on educating/training providers as without proper support, health-care workers will be unable to perform to their full potential/scope of practice while also providing patients with holistic and accessible care.

Examining Fall Risk Assessment in Geriatric Rehabilitation Settings Using Translational Research.

PURPOSE: The objective of this study was to identify gaps in and to improve the falls prevention strategy (FPS) of an inpatient rehabilitation facility (IRF) in Toronto, Canada. DESIGN: A modified version of the Stanford Biodesign Methodology was used. METHODS: Chart reviews, a focus group (n = 8), and semistructured interviews (n = 8) were conducted to evaluate the FPS. FINDINGS: Admission Functional Independence Measure score, age, and gender significantly correlated with risk for a fall. The tool used at this IRF was not effectively capturing patients who were at high risk for falls. All healthcare providers interviewed were knowledgeable of fall risks; however, a patient's fall risk status was rarely discussed as a team. CONCLUSIONS: The findings informed recommendations to improve the overall FPS at this IRF. CLINICAL RELEVANCE: Staff may require more coaching for implementing preventative measures/ensuring accountability and evaluating whether current strategies work. These insights can guide improvement initiatives at similar facilities elsewhere.

Gaps in Hospice and Palliative Care Research: A Scoping Review of the North American Literature.

BACKGROUND: The demand for hospice and palliative care is growing as a result of the increase of an aging population, which is most prominent in North America. Despite the importance of the topic and an increase in hospice and palliative care utilization, there still are gaps in research and evidence within the field. AIM: To determine what gaps currently exist in hospice and palliative/end-of-life care research within the context of a North American setting to ensure that future directions are grounded in appropriate evidence. METHODS: Using Arksey and O'Malley's scoping review framework, six peer-reviewed, and four grey electronic literature databases in healthcare and the social sciences were searched in mid-2019. 111 full-text articles were retrieved, with 25 articles and reports meeting the inclusion criteria. Major themes were identified through thematic context analysis: (1) clinical, (2) system access to care, (3) research methodology, and (4) caregiving-related research gaps. RESULTS: Findings include strategies for engaging stakeholder organizations and funding agencies, implications for other stakeholder groups such as clinicians and researchers, and highlight implications for policy (e.g., national framework discussion) and practice (e.g., healthcare provider education and training and public awareness). CONCLUSION: Reviewing and addressing targeted research gaps is essential to inform future directions in Canada and beyond.

More Than Just a Room: A Scoping Review of the Impact of Homesharing for Older Adults.

BACKGROUND AND OBJECTIVES: "Aging in place" is commonly defined as the ability to remain living safely and independently for as long as possible either in the home or community of one's choosing. Yet, the literature indicates that older adults prefer to remain specifically in their own homes. Homesharing, an innovative exchange-based housing approach, is a means by which older adults can obtain additional income, companionship, and assistance by renting out a room to a home seeker, potentially increasing capacity to remain living independently in their homes. But what is known about their experiences of homesharing? RESEARCH DESIGN AND METHODS: A scoping review was conducted to map and consolidate the literature related to the experience of homeshare participation for adults aged 55 and older published from 1989 to 2018. Fifteen databases were searched, including 3 medical, 5 social science, and 7 gray literature databases. Following abstract and full-text review, 6 sources were retained for study inclusion. Thematic content analysis was used to identify major themes. RESULTS: Within included studies, 4 major themes were identified: (i) benefits of homeshare participation for older adults; (ii) challenges of participating in homeshare for older adults; (iii) intergenerational engagement as social exchange; and (iv) the key role of agency facilitation. DISCUSSION AND IMPLICATIONS: Findings were used to derive practice, policy, and research implications. By focusing on older adults and the ways homesharing impacts their lives, we can better determine the viability of homeshare as a means for improving and prolonging experiences of living at home.

The Association between Public Transportation and Social Isolation in Older Adults: A Scoping Review of the Literature.

Inadequate public transportation was recognized as a barrier to social participation, especially for older adults in rural communities and with mobility issues. Older adults will not benefit from opportunities to engage with their community and maintain social networks if they are unable to access them. The purpose of this scoping review was to make recommendations for further research and to summarize areas for improvement identified in the literature that will aid in the development of public transportation initiatives that can better address social isolation for older adults (≥ 55 years of age). Nineteen articles met the inclusion criteria, identifying themes of access to rural public transportation, issues with public transportation, and mobility. In practice, older adults need to prepare for driving cessation and mobility transitions; sound policy requires input to tailor transportation initiatives to an aging population, and future research should explore older adults' transportation needs and potential solutions in urban and rural communities.

The Use of Palliative Sedation to Treat Existential Suffering: A Scoping Review on Practices, Ethical Considerations, and Guidelines.

CONTEXT: Though palliative sedation has been recognized as an acceptable practice in Canada for many years now, there is a lack of clinical research and guidelines pertaining to its use as a treatment of existential refractory symptoms in the terminally ill. OBJECTIVES: This scoping review aimed to survey the literature surrounding palliative sedation and existential suffering and to inform research, policy, and practice. METHODS: To address the main research question: Is palliative sedation an acceptable intervention to treat existential refractory symptoms in adults aged 65 and older? a scoping review following Arksey and O'Malley's framework was performed, spanning electronic databases of the peer reviewed and grey literature. Articles were screened for inclusion, and a thematic content analysis allowed for a summary of key findings. RESULTS: Out of 427 search results, 71 full text articles were obtained, 20 of which were included. Out of these articles, four themes were identified as key findings. These included: (1) Ethical considerations; (2) The role of the health care provider; looking specifically at the impact on nurses; (3) The need for multidisciplinary care teams; and (4) Existential suffering's connection to religiosity and spirituality. CONCLUSION: Palliative sedation to treat existential refractory symptoms was labelled a controversial practice. A shortage of evidence-based resources limits the current literature's ability to inform policy and clinical practice. There is a need for both qualitative and quantitative multi-center research so health care professionals and regional-level institutions have firm roots to establish proper policy and practice.

Implementation of Medical Assistance in Dying: A Scoping Review of Health Care Providers' Perspectives.

RESEARCH AIMS: With the growing interest in Medical Assistance in Dying (MAiD), understanding health care professionals' roles and experiences in handling requests is necessary to evaluate the quality, consistency, and efficacy of current practices. This scoping review sought to map the existing literature on health care providers' perspectives of their involvement in MAiD. METHODS: A scoping review was conducted to address the following: 1) What are the roles of diverse health care professionals in the provision of MAiD? and 2) What professional challenges arise when confronted with MAiD requests? A literature search in electronic databases and gray literature sources was performed. Articles were screened, and a thematic content analysis synthesized key findings. RESULTS: After evaluating 1715 citations and 148 full-text papers, 33 articles were included. Perspectives of nurses (n = 10), physicians (n = 7), mental health providers (n = 7), pharmacists (n = 4), social workers (n = 3), and medical examiners (n = 1) were explored. Professional roles included consulting/supporting patients and/or other staff members with requests, assessing eligibility, administering/dispensing the lethal drugs, providing aftercare to bereaved relatives, and regulatory oversight. Challenges included lack of clear guidelines/protocols, role ambiguity, evaluating capacity/consent, conscientious objection, and lack of interprofessional collaboration. CONCLUSION: Evidence from various jurisdictions highlighted a need for clear guidelines and protocols that define each profession's role, scope of practice, and legal boundaries for MAiD. Comprehensive models of care that incorporate multidisciplinary teams alongside improved clinician education may be effective to support MAiD implementation. Little is known about health care providers' perspectives in handling requests, especially outside physician practice and nursing.

Social Isolation in Chinese Older Adults: Scoping Review for Age-Friendly Community Planning.

Chinese older adults may be at increased risk of social isolation and loneliness, and a fragmented understanding exists about the challenges they face for social participation in their neighbourhoods and communities. A scoping review was undertaken to describe the current knowledge on social isolation and loneliness in urban-dwelling Chinese older adults living in Western societies to inform future research, practice, and policy in Canada. Nineteen articles met the inclusion criteria. The World Health Organization's age-friendly community framework contextualized the study findings. Studies identified issues related to (1) social participation; (2) community support and health services; (3) housing; (4) community and information; (5) respect and social inclusion; (6) outdoor spaces and public buildings; (7) civic participation and employment; and (8) transportation. Social isolation and loneliness is a growing concern in this population in Canada, and additional research is needed to identify its scope and effective interventions.

Developing a Research Agenda on Resident-to-Resident Aggression: Recommendations From a Consensus Conference.

This article provides an overview of the development of a research agenda on resident-to-resident aggression (RRA) in long-term care facilities by an expert panel of researchers and practitioners. A 1-day consensus-building workshop using a modified Delphi approach was held to gain consensus on nomenclature and an operational definition for RRA, to identify RRA research priorities, and to develop a roadmap for future research on these priorities. Among the six identified terms in the literature, RRA was selected. The top five priorities were: (a) developing/assessing RRA environmental interventions; (b) identification of the environmental factors triggering RRA; (c) incidence/prevalence of RRA; (d) developing/assessing staff RRA education interventions; and (e) identification of RRA perpetrator and victim characteristics. Given the significant harm RRA poses for long-term care residents, this meeting is an important milestone, as it is the first organized effort to mobilize knowledge on this under-studied topic at the research, clinical, and policy levels.

Questioning context: a set of interdisciplinary questions for investigating contextual factors affecting health decision making.

OBJECTIVE: To combine insights from multiple disciplines into a set of questions that can be used to investigate contextual factors affecting health decision making. BACKGROUND: Decision-making processes and outcomes may be shaped by a range of non-medical or 'contextual' factors particular to an individual including social, economic, political, geographical and institutional conditions. Research concerning contextual factors occurs across many disciplines and theoretical domains, but few conceptual tools have attempted to integrate and translate this wide-ranging research for health decision-making purposes. METHODS: To formulate this tool we employed an iterative, collaborative process of scenario development and question generation. Five hypothetical health decision-making scenarios (preventative, screening, curative, supportive and palliative) were developed and used to generate a set of exploratory questions that aim to highlight potential contextual factors across a range of health decisions. FINDINGS: We present an exploratory tool consisting of questions organized into four thematic domains - Bodies, Technologies, Place and Work (BTPW) - articulating wide-ranging contextual factors relevant to health decision making. The BTPW tool encompasses health-related scholarship and research from a range of disciplines pertinent to health decision making, and identifies concrete points of intersection between its four thematic domains. Examples of the practical application of the questions are also provided. CONCLUSIONS: These exploratory questions provide an interdisciplinary toolkit for identifying the complex contextual factors affecting decision making. The set of questions comprised by the BTPW tool may be applied wholly or partially in the context of clinical practice, policy development and health-related research.