Perspectives of Health Care Providers on Peer Support for Adolescents with Cancer in Pediatrics.

Health care providers (HCPs) play a key role in psychosocial care of adolescents with cancer (AWC) and present a unique perspective. This prospective study included a brief survey followed by an interview, seeking to understand HCPs' viewpoints on peer support needs of AWC. Participants were 10 multidisciplinary HCPs with 5-30 years of experience. Three key themes found were: observations made and relationships with AWC; challenges to providing support; and potential peer support interventions. HCPs want to provide peer support resources but lack adequate information. Next steps: interventions should include information dissemination to all HCPs caring for AWC.

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.

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.

Peer Support Perspectives of Parents of Adolescents with Cancer in Pediatrics.

Parents of adolescents with cancer (AWC) provide critical support throughout the cancer journey and could offer key insights into support needs. This prospective study aimed to obtain parent perspectives on peer support needs of AWC. Ten individual parents (9 mothers and 1 father) completed a survey and a semistructured interview. Four themes were identified: cancer journey challenges; emotions, reactions, and coping; personal support preferences; and AWC's support needs. Parents recognized that AWC require various support, but lacked insight into their specific peer support desires. Next step interventions should focus on peer support for AWC, while also incorporating peer support for parents.

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.

Peer Support Needs of Adolescents with Cancer in Pediatrics: A Canadian Mixed Methods Study.

Adolescents with cancer (AWC) in pediatrics may not have adequate opportunities for peer support. This mixed methods study aimed to characterize peer support needs of AWC during or shortly after treatment. Ten AWC with median age 16.5 (range 14-18) years completed a survey and semistructured interview. Three themes were apparent: cancer journey difficulties, current support system, and peer support perspectives. Participants felt incompletely understood by existing supports, lacked connection with other AWC, and craved experiential information. Peer support interventions should be flexible, facilitate various interactions, and include social media. The next step is to implement and evaluate an intervention.

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.

Cancer Care Professionals' Attitudes Toward Systematic Standardized Symptom Assessment and the Edmonton Symptom Assessment System After Large-Scale Population-Based Implementation in Ontario, Canada.

CONTEXT: Cancer patients experience a high symptom burden throughout their illness. Despite this, patients' symptoms and needs are often not adequately screened for, assessed, and managed. OBJECTIVES: This study investigated the attitudes of cancer care professionals toward standardized systematic symptom assessment and the Edmonton Symptom Assessment System (ESAS) and their self-reported use of the instrument in daily practice in a large healthcare jurisdiction where this is routine. METHODS: A 21-item electronic survey, eliciting both closed and open-ended anonymous responses, was distributed to all 2806 cancer care professionals from four major provider groups: physicians, nurses, radiotherapists, and psychosocial oncology (PSO) staff at the 14 Regional Cancer Centres across Ontario, Canada. RESULTS: A total of 1065 questionnaires were returned (response rate: 38%); 960 were eligible for analysis. Most respondents (88%) considered symptom management to be within their scope of practice. Sixty-six percent of physicians considered the use of standardized tools to screen for symptoms as "best practice," compared to 81% and 93% of nurses and PSO staff, respectively. Sixty-seven percent of physicians and 85% of nurses found the ESAS to be a useful starting point to assess patients' symptoms. Seventy-nine percent of physicians looked at their patient's ESAS scores at visits either "always" or "often," compared to 29%, 66%, and 89% of radiotherapists, PSO staff, and nurses, respectively. Several areas for improvement of ESAS use and symptom screening were identified. CONCLUSION: Findings show significant albeit variable uptake across disciplines in the use of the ESAS since program initiation. Several barriers to using the ESAS in daily practice were identified. These need to be addressed.

Barriers and facilitators to care for the terminally ill: a cross-country case comparison study of Canada, England, Germany, and the United States.

BACKGROUND: Why do many patients not die at their preferred location? AIM: Analyze system-level characteristics influencing the ability to implement best practices in delivering care for terminally ill adults (barriers and facilitators). DESIGN: Cross-country comparison study from a "most similar-most different" perspective, triangulating evidence from a scoping review of the literature, document analyses, and semi-structured key informant interviews. SETTING: Case study of Canada, England, Germany, and the United States. RESULTS: While similar with regard to leading causes of death, patient needs, and potential avenues to care, different models of service provision were employed in the four countries studied. Although hospice and palliative care services were generally offered with standard care along the disease continuum and in various settings, and featured common elements such as physical, psycho-social, and spiritual care, outcomes (access, utilization, etc.) varied across jurisdictions. Barriers to best practice service provision included legislative (including jurisdictional), regulatory (e.g. education and training), and financial issues as well as public knowledge and perception ("giving up hope") challenges. Advance care planning, dedicated and stable funding toward hospice and palliative care, including caregiver benefits, population aging, and standards of practice and guidelines to hospice and palliative care, were identified as facilitators. CONCLUSION: Successful implementation of effective and efficient best practice approaches to care for the terminally ill, such as shared care, requires concerted action to align these system-level characteristics; many factors were identified as being essential but not sufficient. Policy implementation needs to be tailored to the respective health-care system(s), monitored, and fine-tuned.