Supportive care services in New Brunswick, Canada: An environmental scan.

Cancer diagnosis and treatment often have significant physical and psychological implications for both the survivor and their family/caregivers. Necessary services extend beyond medical treatment and include a variety of supportive care services (SCS) that address individuals' physical, social, educational, and emotional needs. This study seeks to map the SCS available in the province of New Brunswick (NB), Canada, for cancer survivors, their families, and their caregivers. An environmental scan was conducted to assess current SCS available in NB. While some SCS exist in NB, they are not always easily accessible or identifiable, and gaps in services were prevalent. In particular, a gap in services was found for individuals who are no longer actively receiving cancer treatment, as well as for family members and caregivers.

Moving forward with dementia: an explorative cross-country qualitative study into post-diagnostic experiences.

OBJECTIVES: This explorative cross-country qualitative study aims to describe experiences of receiving a dementia diagnosis and experiences of support following a diagnosis in Australia, Canada, the Netherlands and Poland. METHOD: Qualitative study using projective techniques during online focus groups, online and telephone interviews with people with dementia and caregivers. RESULTS: Twenty-three people with dementia and 53 caregivers participated. Qualitative content analysis revealed five themes; (1) 'Coming to terms with dementia' helped people deal with complex emotions to move forward. (3) 'The social network as a source of support' and (4) 'The challenges and realities of formal support' and impacted 'Coming to terms with dementia'. (2) 'Navigating life with dementia as a caregiver' highlights caregiver burden and was impacted by (4) 'The challenges and realities of formal support'. People were (5) 'Self-caring and preparing for tomorrow' as they focused on maintaining current health whilst planning the future. Despite differences in healthcare and post-diagnostic support systems, there were more similarities across countries than differences. CONCLUSION: Across countries, formal support and support from friends and family are crucial for people with dementia and caregivers to come to terms with dementia and maintain carer wellbeing to ultimately live well with dementia.

Depiction of conversational agents as health professionals: a scoping review.

OBJECTIVE: The purpose of this scoping review was to examine the depiction of conversational agents as health professionals. We identified the professional characteristics that are used with these depictions and determined the prevalence of these characteristics among conversational agents that are used for health care. INTRODUCTION: The depiction of conversational agents as health professionals has implications for both the users and the developers of these programs. For this reason, it is important to know more about these depictions and how they are implemented in practical settings. INCLUSION CRITERIA: This review included scholarly literature on conversational agents that are used for health care. It focused on conversational agents designed for patients and health seekers, not health professionals or trainees. Conversational agents that address physical and/or mental health care were considered, as were programs that promote healthy behaviors. METHODS: This review was conducted in accordance with JBI methodology for scoping reviews. The databases searched included MEDLINE (PubMed), Embase, CINAHL with Full Text (EBSCOhost), Scopus, Web of Science, ACM Guide to Computing Literature (Association for Computing Machinery Digital Library), and IEEE Xplore (IEEE). The main database search was conducted in June 2021, and an updated search was conducted in January 2022. Extracted data included characteristics of the report, basic characteristics of the conversational agent, and professional characteristics of the conversational agent. Extracted data were summarized using descriptive statistics. Results are presented in a narrative summary and accompanying tables. RESULTS: A total of 38 health-related conversational agents were identified across 41 reports. Six of these conversational agents (15.8%) had professional characteristics. Four conversational agents (10.5%) had a professional appearance in which they displayed the clothing and accessories of health professionals and appeared in professional settings. One conversational agent (2.6%) had a professional title (Dr), and 4 conversational agents (10.5%) were described as having professional roles. Professional characteristics were more common among embodied vs disembodied conversational agents. CONCLUSIONS: The results of this review show that the depiction of conversational agents as health professionals is not particularly common, although it does occur. More discussion is needed on the potential ethical and legal issues surrounding the depiction of conversational agents as health professionals. Future research should examine the impact of these depictions, as well as people's attitudes toward them, to better inform recommendations for practice.

Fostering collective leadership to improve integrated primary care: lessons learned from the PriCARE program.

Case management (CM) is an intervention for improving integrated care for patients with complex care needs. The implementation of this complex intervention often raises opportunities for change and collective leadership has the potential to optimize the implementation. However, the application of collective leadership in real-world is not often described in the literature. This commentary highlights challenges faced during the implantation of a CM intervention in primary care for people with complex care needs, including stakeholders' buy-in and providers' willingness to change their practice, selection of the best person for the case manager position and staff turnover. Based on lessons learned from PriCARE research program, this paper encourages researchers to adopt collective leadership strategies for the implementation of complex interventions, including promoting a collaborative approach, fostering stakeholders' engagement in a trusting and fair environment, providing a high level of communication, and enhancing collective leadership attitudes and skills. The learnings from the PriCARE program may help guide researchers for implementing complex healthcare interventions.

Using theater as an innovative knowledge translation approach for health research: a scoping review protocol.

OBJECTIVE: The objective of this review is to synthesize the existing literature on how theater has been used as a knowledge translation approach for health research and to identify the outcome measures employed for evaluation and the facilitators/challenges related to this approach. INTRODUCTION: The use of arts-based knowledge translation methods is relatively new in health research but has already shown to have positive impacts on knowledge, attitudes, policy, and practice. Specifically, theater has proven to be an effective approach for communicating research findings in a way which stimulates thought and discussion on important health-related topics. INCLUSION CRITERIA: This review will include scholarly literature on how theater is being used as a knowledge translation approach for health research. The review will not impose any limitations related to demographic variables, health issues, or settings. The review will consider papers using any study design, and will also consider other literature, such as protocols, descriptive papers, unpublished papers, and evaluation reports. METHODS: This review will be conducted in accordance with the JBI methodology for scoping reviews. The databases to be searched will include CINAHL (EBSCOhost), Embase, MEDLINE (Ovid), Academic Search Premier (EBSCOhost), and Scopus. Google/Google Scholar and ProQuest Dissertations and Theses will also be searched for unpublished studies and gray literature. All literature identified in the search will be screened by 2 independent reviewers and the results will be presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram. The data extracted from the included literature will be presented in both tabular and narrative format. THIS PROTOCOL HAS BEEN REGISTERED ON OPEN SCIENCE FRAMEWORK: https://doi.org/10.17605/OSF.IO/GBCPJ.

Barriers and facilitators for engaging in the practice of medical assistance in dying among providers in Canada: a scoping review protocol.

OBJECTIVE: This review will explore the perceived barriers and facilitators for engaging in the practice of medical assistance in dying (MAiD) from the perspective of physicians, nurse practitioners, and medical residents in Canada. INTRODUCTION: The number of MAiD requests in Canada is growing steadily and is predicted to continue to grow with the passing of Bill C-7 in 2021, which expands access to individuals whose deaths are not reasonably foreseeable. Under federal law, physicians and nurse practitioners are the only health care professionals permitted to assess for and administer MAiD. Providers are not obligated to engage in the practice of MAiD; therefore, patient access relies on providers' readiness to engage in the practice. More information is needed to understand the barriers and facilitators for engaging in MAiD care from the perspective of providers. INCLUSION CRITERIA: This review will consider studies that identify physicians, nurse practitioners, and medical residents' perceived barriers and facilitators for engaging in the practice of MAiD in Canada. Physicians, nurse practitioners, and medical residents who do not directly administer MAiD, including those who identify as conscientious objectors or non-participants, will be included. Studies looking at barriers and facilitators for providing MAiD care to individuals with dementia, mental illness, or for individuals under the age of 18 years will be excluded. METHODS: MEDLINE, Embase, CINAHL with Full-text, and APA PsycINFO will be searched. Studies will be screened and data extracted by 2 independent reviewers using a tool created for this review. The scoping review findings will be presented in a narrative format and mapped in tables to address the review aims.

Stakeholders' perceptions of a nurse-led telehealth case management intervention in primary care for patients with complex care needs: a qualitative descriptive study.

OBJECTIVE: With the onset of the COVID-19 pandemic, telehealth case management (TCM) was introduced in primary care for patients requiring care by distance. While not all healthcare needs can be addressed via telehealth, the use of information and communication technology to support healthcare delivery has the potential to contribute to the management of patients with chronic conditions and associated complex care needs. However, few qualitative studies have documented stakeholders' perceptions of TCM. This study aimed to describe patients', primary care providers' and clinic managers' perceptions of the use of a nurse-led TCM intervention for primary care patients with complex care needs. DESIGN: Qualitative descriptive study. SETTING: Three primary care clinics in three Canadian provinces. PARTICIPANTS: Patients with complex care needs (n=30), primary care providers (n=11) and clinic managers (n=2) participated in qualitative individual interviews and focus groups. INTERVENTION: TCM intervention was delivered by nurse case managers over a 6-month period. RESULTS: Participants' perceptions of the TCM intervention were summarised in three themes: (1) improved patient access, comfort and sense of reassurance; (2) trusting relationships and skilled nurse case managers; (3) activities more suitable for TCM. TCM was a generally accepted mode of primary care delivery, had many benefits for patients and providers and worked well for most activities that do not require physical assessment or treatment. Participants found TCM to be useful and a viable alternative to in-person care. CONCLUSIONS: TCM improves access to care and is successful when a relationship of trust between the nurse case manager and patient can develop over time. Healthcare policymakers and primary care providers should consider the benefits of TCM and promote this mode of delivery as a complement to in-person care for patients with complex care needs.

Transitioning from paediatric to adult healthcare: Exploring the practices and experiences of care providers.

Complex paediatric health conditions are increasingly associated with survival into adulthood resulting in more youth with complex care needs (CCN) transitioning from paediatric to adult healthcare. Current transition practices, when present, are disorganized, resulting in health status deterioration and complications due to unmet needs. The aim of this qualitative descriptive study is to develop a broader understanding of the current transition practices and experiences, as well as recommendations of care providers who support youth with CCN in the transition from paediatric to adult healthcare. Fifteen care providers from two Eastern Canadian provinces were interviewed using a semi-structured interview guide. The data collected were analyzed using inductive thematic analysis following the six phases outlined by Braun and Clarke (2006). The findings from this research demonstrate (1) a shortage of care providers, (2) inconsistent timing for transition initiation, and (3) lack of available community resources and services. Participant recommendations include (1) a designated transition coordinator; (2) transition policy implementation; (3) improved collaboration between and across care teams; and (4) the integration of virtual care to facilitate the transition process. The results of this study can potentially improve transition practices and policies and guide future research in this area.

Patient engagement in health implementation research: A logic model.

INTRODUCTION: Growing evidence supports patient engagement (PE) in health implementation research to improve the quality, relevance and uptake of research. However, more guidance is needed to plan and operationalize PE before and throughout the research process. The aim of the study was to develop a logic model illustrating the causal links between context, resources, activities, outcomes and impact of PE in an implementation research programme. METHODS: The Patient Engagement in Health Implementation Research Logic Model (hereafter the Logic Model) was developed using a descriptive qualitative design with a participatory approach, in the context of the PriCARE programme. This programme aims to implement and evaluate case management for individuals who frequently use healthcare services in primary care clinics across five Canadian provinces. Participant observation of team meetings was performed by all team members involved in the programme and in-depth interviews were conducted by two external research assistants with team members (n = 22). A deductive thematic analysis using components of logic models as coding categories was conducted. Data were pooled in the first version of the Logic Model, which was refined in research team meetings with patient partners. The final version was validated by all team members. RESULTS: The Logic Model highlights the importance of integrating PE into the project before its commencement, with appropriate support in terms of funding and time allocation. The governance structure and leadership of both principal investigators and patient partners have significant effects on PE activities and outcomes. As an empirical and standardized illustration that facilitates a shared understanding, the Logic Model provides guidance for maximizing the impact of patient partnership in various contexts for research, patients, providers and health care. CONCLUSION: The Logic Model will help academic researchers, decision makers and patient partners plan, operationalize, and assess PE in implementation research for optimal outcomes. PATIENT OR PUBLIC CONTRIBUTION: Patient partners from the PriCARE research programme contributed to developing the research objectives and designing, developing and validating data collection tools, producing data, developing and validating the Logic Model and reviewing the manuscript.

Implementation analysis of a case management intervention for people with complex care needs in primary care: a multiple case study across Canada.

BACKGROUND: Case management is one of the most frequently performed interventions to mitigate the negative effects of high healthcare use on patients, primary care providers and the healthcare system. Reviews have addressed factors influencing case management interventions (CMI) implementation and reported common themes related to the case manager role and activities, collaboration with other primary care providers, CMI training and relationships with the patients. However, the heterogeneity of the settings in which CMI have been implemented may impair the transferability of the findings. Moreover, the underlying factors influencing the first steps of CMI implementation need to be further assessed. This study aimed to evaluate facilitators and barriers of the first implementation steps of a CMI by primary care nurses for people with complex care needs who frequently use healthcare services. METHODS: A qualitative multiple case study was conducted including six primary care clinics across four provinces in Canada. In-depth interviews and focus groups with nurse case managers, health services managers, and other primary care providers were conducted. Field notes also formed part of the data. A mixed thematic analysis, deductive and inductive, was carried out. RESULTS: Leadership of the primary care providers and managers facilitated the first steps of the of CMI implementation, as did the experience and skills of the nurse case managers and capacity development within the teams. The time required to establish CMI was a barrier at the beginning of the CMI implementation. Most nurse case managers expressed apprehension about developing an "individualized services plan" with multiple health professionals and the patient. Clinic team meetings and a nurse case managers community of practice created opportunities to address primary care providers' concerns. Participants generally perceived the CMI as a comprehensive, adaptable, and organized approach to care, providing more resources and support for patients and better coordination in primary care. CONCLUSION: Results of this study will be useful for decision makers, care providers, patients and researchers who are considering the implementation of CMI in primary care. Providing knowledge about first steps of CMI implementation will also help inform policies and best practices.

Value of pre-licensure interprofessional education on post-licensure interprofessional collaboration: Perceptions and experiences of practicing professionals.

Interprofessional education (IPE) allows students in health professional programs to practice providing collaborative patient care before graduating. Understanding the perceptions and experiences of health care professionals' IPE received prior to entering the workforce is key for improving IPE programs. This study investigated participants' post-licensure interprofessional collaboration (IPC) experiences, how IPE helped prepare them for IPC post-licensure, their perceptions of the IPE they received as students, and their suggestions for improving IPE. This qualitative descriptive study included 20 healthcare workers from seven professions who graduated from two of three co-located post-secondary educational institutions. Data were collected using semi-structured interviews, which were audiotaped and transcribed verbatim. Inductive thematic analysis revealed five themes and six sub-themes: (a) Quality of care; (b) Role clarification; (c) Interpersonal skills (sub-themes: communication and self-confidence); (d) Co-location; and (e) Need for IPE improvements (sub-themes: additional IPE exposures, shadowing experiences, mandatory IPE, and informal peer learning). These findings appear to reinforce the perception that pre-licensure IPE may support the development of skills for IPC among practicing health professionals.

Patient navigation programs for people with dementia, their caregivers, and members of the care team: a scoping review.

OBJECTIVE: The main objective of this review was to map the literature on the characteristics of patient navigation programs for people with dementia, their caregivers, and members of the care team across all settings. The secondary objective was to map the literature on the barriers and facilitators for implementing and delivering such patient navigation programs. INTRODUCTION: People with dementia have individualized needs that change according to the stage of their condition. They often face fragmented and uncoordinated care when seeking support to address these needs. Patient navigation may be one way to help people with dementia access better care. Patient navigation is a model of care that aims to guide people through the health care system, matching their unmet needs to appropriate resources, services, and programs. Organizing the available information on this topic will present a clearer picture of how patient navigation programs work. INCLUSION CRITERIA: This review focused on the characteristics of patient navigation programs for people living with dementia, their caregivers, and the members of the care team. It excluded programs not explicitly focused on dementia. It included patient navigation across all settings, delivered in all formats, and administered by all types of navigators if the programs aligned with this review's definition of patient navigation. This review excluded case management programs. METHODS: This review was conducted in accordance with JBI methodology for scoping reviews. MEDLINE, CINAHL, APA PsycINFO, Embase, and ProQuest Nursing and Allied Health databases were searched for published full-text articles. A gray literature search was also conducted. Two independent reviewers screened articles for relevance against the inclusion criteria. The results are presented in a Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram, and the extracted data are presented narratively and in tabular format. RESULTS: Thirty-nine articles describing 20 programs were included in this review. The majority of these articles were published between 2015 and 2020, and based out of the United States. The types of sources included randomized controlled trials, quasi-experimental studies, and qualitative exploratory studies, among others. All programs provided some form of referral or linkage to other services or resources. Most dementia navigation programs included an interdisciplinary team, and most programs were community-based. There was no consistent patient navigator title or standard delivery method. Commonly reported barriers to implementing and delivering these programs were navigator burnout and a lack of coordination between stakeholders. Commonly reported facilitators were collaboration, communication, and formal partnerships between key stakeholders, as well as accessible and flexible program delivery models. CONCLUSIONS: This review demonstrates variety and flexibility in the types of services patient navigation programs provided, as well as in the modes of service delivery and in navigator title. This information may be useful for individuals and organizations looking to implement their own programs in the future. It also provides a framework for future systematic reviews that seek to evaluate the effectiveness or efficacy of dementia navigation programs.

Hospital-based patient navigation programs for patients who experience injury-related trauma and their caregivers: a scoping review.

OBJECTIVE: This review's objective is to map the literature on the characteristics, impact, barriers and facilitators of hospital-based patient navigation programmes that support patients who experience injury-related trauma and their caregivers. Patients who experience injury-related trauma frequently require support from multiple care teams and face many challenges to care, both in hospital and when transitioning across settings and services. Patient navigation can improve their care. DESIGN: This review is conducted according to JBI methodology for scoping reviews. The initial database search took place on 6 June 2021 and the grey literature search took place between September and October 2021. The results are presented in a Preferred Reporting Items for Systematic Reviews and Meta-analyses for Scoping Reviews flow diagram. SETTING: This review considered materials where the patient navigation programmes were delivered in hospital settings. There was no geographical limit to this study. PARTICIPANTS: This review focused on hospital-based patient navigation programmes for patients who experience injury-related trauma and/or their caregivers. RESULTS: This review captured 11 records that describe 10 programmes. All programmes were based in the USA. Most programmes provided education, care coordination, discharge planning, and referrals to resources, services, and programmes to assist patients and/or their families in the hospital or the community. Half the programmes were based in level 1 trauma centres. Common impacts included decreases in readmission rates and increases in satisfaction rates. Barriers included difficulty recruiting or enrolling patients with short hospital stays and hospital administrators' and healthcare providers' lack of understanding of the navigator role. Navigator background, either professional or experiential, was identified as a facilitator, as was flexibility in programme delivery and communication methods. CONCLUSIONS: Eleven records show a small but distinct sample. Reported characteristics, impact, barriers and facilitators were consistent with findings from other patient navigation studies. The results can inform the development and implementation of similar programmes in trauma centres and support changes in policy to improve the delivery of care.

Improving the transition from paediatric to adult healthcare: a scoping review on the recommendations of young adults with lived experience.

OBJECTIVE: The goal of this review was to identify recommendations within the literature on how to improve the transition from paediatric to adult healthcare from the perspective of young adults (YAs) living with chronic conditions who have gone through the process. DESIGN: This review was conducted in accordance with JBI methodology for scoping reviews. SEARCH STRATEGY: We searched MEDLINE (Ovid), CINAHL (EBSCO), PsycINFO (EBSCO) and EMBASE (Elsevier) databases, and conducted a grey literature search for relevant material. The databases were searched in December 2019, and re-searched June 2020 and September 2020, while the grey literature was searched in April 2020. This scoping review focused on the recommendations of YAs with chronic conditions who have transitioned from paediatric to adult healthcare, in any setting (eg, hospital, clinic or community), and across all sectors (eg, health, education and social services). RESULTS: Eighteen studies met inclusion criteria for this review. These studies included YAs with 14 different chronic conditions, receiving primary health services in North America (67%) and Europe (33%). YAs' recommendations for improving the transition from paediatric to adult healthcare (n=number of studies reported) included: improving continuity of care (n=12); facilitating patient-centred care (n=9); building strong support networks (n=11) and implementing transition education preparedness training (n=7). CONCLUSION: Review findings can benefit service delivery by addressing important barriers to health, education, and social services for youth transitioning to adult healthcare.

Effectiveness of general practitioner-delivered nutrition care interventions on dietary and health outcomes in adults with diet-related chronic conditions: a systematic review protocol.

OBJECTIVE: This systematic review will evaluate the effectiveness of nutrition care interventions delivered by general practitioners versus usual care or no care on dietary and health outcomes in adults with diet-related chronic conditions or risk states. INTRODUCTION: General practitioners are usually the first contacts in the health care system for patients with diet-related chronic conditions. While there is some evidence that general practitioners can be effective in delivering nutrition care for a number of outcomes, to inform future care, an update of the evidence is required as well as an examination of which components are associated with positive outcomes. INCLUSION CRITERIA: Published studies will be included if they report on adults with or at risk of diet-related chronic conditions; one-on-one nutrition care interventions individually delivered by general practitioners during primary care consultations; usual or no care as comparators; dietary and/or health outcomes with a minimum three-month follow-up; and randomized controlled trials. Included studies will be available in, or able to be translated into, English and will have no date restrictions. METHODS: The databases to be searched will include CINAHL, Embase, MEDLINE, and ProQuest Nursing and Allied Health. Following deduplication, two reviewers will independently screen the titles and abstracts in Covidence, followed by the full texts of potentially relevant studies. Disagreements will be resolved through discussion or with a third reviewer. Included studies will be critically appraised and data will be extracted using a modified JBI tool. Findings will be reported in tables and narrative synthesis, and pooled with statistical meta-analysis, where possible. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42021289011.

Programmes to support transitions in community care for children with complex care needs: a scoping review.

OBJECTIVE: This scoping review aimed to map the range of programmes in the literature to support children and youth with complex care needs and their families during transitions in care in the community. DESIGN: A scoping review of the literature. CONTEXT: This review included programmes that supported the transition in care to home and between settings in the community. DATA SOURCES: We implemented our strategy to search five databases: (1) PubMed; (2) CINAHL; (3) ERIC; (4) PyscINFO and (5) Social Work Abstracts. The search was last implemented on 29 April 2021. STUDY SELECTION: Our search results were imported into Covidence Systematic Review Software. First, two reviewers assessed titles and abstracts against our eligibility criteria. Relevant articles were then retrieved in full and reviewed by two reviewers for inclusion. Disagreements were resolved by a third reviewer. DATA EXTRACTION: Relevant data were extracted related to population, concept, context, methods and key findings pertinent to our review objective. RESULTS: A total of 2482 records were identified. After our two-stage screening process, a total of 27 articles were included for analysis. Articles ranged in the type of transitions being supported and target population. The most common transition reported was the hospital-to-home transition. Intervention components primarily consisted of care coordination using a teams-based approach. The most reported barriers and enablers to implementing these transition care programmes were related to physical opportunities. LIMITATIONS: Included articles were limited to English and French. CONCLUSIONS: This review identified important gaps within the literature, as well as areas for future consideration to ensure the effective development and implementation of programmes to support children and youth with complex care needs during transitions in care.

Experiences, Motivations, and Perceived Impact of Participation in a Facebook-Based Support Group for Caregivers of Children and Youth With Complex Care Needs: Qualitative Descriptive Study.

BACKGROUND: Caregivers of children and youth with complex care needs (CCNs) often require considerable support to ensure the well-being of their families. Social media present an opportunity to better support caregivers through computer-mediated communication for social support. Peer-to-peer (P2P) support groups are a way in which caregivers are accessing needed support; however, the experiences of caregivers who use these groups and the perceived impact that participation has on caregivers of children and youth with CCNs are not known. OBJECTIVE: This study aimed to explore the experiences of caregivers of children and youth with CCNs who use a Facebook-based P2P support group to communicate, understand their motivations to use the group, and investigate its perceived impact on knowledge of programs and services and sense of community belonging among caregivers. METHODS: A qualitative descriptive design was used to explore the experiences and perceived impact of a Facebook-based (Meta Platforms) P2P support group for caregivers of children and youth with CCNs in New Brunswick, Canada. The group was launched on the web in October 2020, during the COVID-19 pandemic, and resulted in 108 caregivers joining the group. A web-based survey was distributed, and semistructured interviews were conducted in February 2021 with a subsample of members. Thematic analysis was used to identify and report patterns related to caregivers' experiences and perceived impacts of participation. RESULTS: A subsample of members in the Facebook group completed the web-based survey (39/108, 36.1%) and interviews (14/108, 12.9%). A total of 5 themes emerged from the interviews: safe space, informational support and direction, web-based connection with peers, impact on knowledge of programs and services, and degree of community belonging. Participants reported joining the group to obtain geography-specific information support and connect with peers. Many participants reported an improvement in their knowledge of programs and services and felt connected to the community; however, the short observation period and diversity among the caregiver population were cited as barriers to community belonging. CONCLUSIONS: Social media present an important opportunity to facilitate the exchange of support between patients and caregivers in an accessible and curated environment. Findings from this study suggest that involvement in web-based, geography-specific P2P support groups can influence perceived knowledge of services and resources and sense of community belonging among caregivers of children and youth with CCNs. Furthermore, this study provides insight into the experiences and motivations of caregivers of children and youth with CCNs who participate in a private social media environment.