Joanne Tay

Background: Siblings of children with progressive life-limiting conditions face elevated emotional and behavioural risks. Although multiple family stressors are known, how cumulative stress shapes sibling adjustment is unclear. This study examined how illness-related family stressors affect sibling behavioural outcomes and whether active versus passive coping strategies are associated with these relationships. Methods: We conducted secondary analysis of longitudinal data from the Charting the Territory (CTT) study, examining 70 siblings (aged 7–18 years) from 58 families with a child diagnosed with progressive life-limiting conditions. Families were categorized into two treatment-duration groups based on time since first seeking medical treatment for the ill child (≤ 1 year vs. > 1 year). Using multilevel exploratory factor analysis, we empirically derived a latent "Siblings' Stressor" construct from nine potential variables. Multilevel mediation models examined relationships between Siblings' Stressor, coping strategies (Kidcope), and three behavioural outcomes (Child Behaviour Checklist): internalizing, externalizing, and total behaviour problems across baseline (defined as each family's first assessment wave at study enrollment), 6-month, and 12-month assessments. Results: The Siblings' Stressor construct comprised parental stress, anxiety, depression, and caregiving burden. Significant direct effects emerged between Siblings' Stressor and all behavioural outcomes. Coping associations differed by treatment-duration group. For internalizing problems, active coping provided consistent protection across early (≤ 1 year: -.052, 95% CI [-.103, -.001]) and longer-term families (> 1 year: -.109, 95% CI [-.121, -.097]), while passive coping demonstrated risk effects. However, for externalizing and total behaviour problems, active coping showed different associations by treatment-duration group, being protective in early-treatment families (≤ 1 year) and positively associated with externalizing (.048, 95% CI [.021, .075]) and total behaviour problems (095, 95% CI [.053, .136]) in longer-treatment families (> 1 year). Passive coping was linked to elevated externalizing and total behaviour problems in both groups, with particularly strong associations in families within their first year of treatment. Conclusion: Parental psychological distress and caregiving burden were associated with sibling adjustment across all behavioural outcomes, with coping strategies showing differential patterns by treatment-duration group. Active coping was related to fewer internalizing difficulties, while passive coping was associated with elevated risk. These findings support family-centred approaches that address parental mental health and promote developmentally appropriate coping strategies across the illness trajectory.

Background: Patients’ homes are increasingly recognized as the preferred setting for palliative care (PC). As frontline providers, home care nurses face complex clinical and systemic challenges that demand high levels of knowledge and confidence. Thus, this review aimed to critically appraised and synthesized the literature on home care nurses’ perceived competence and self-efficacy in PC delivery, along with factors that influence both constructs. Methods: This integrative review employed Whittemore and Knafl’s framework and was guided by Bandura’s self-efficacy theory. The search was conducted in November 2024 using 9 databases: MEDLINE, Cochrane Central Register of Controlled Trials, Emcare, Cochrane Database of Systematic Reviews, CINAHL, ProQuest Nursing & Allied Health, ProQuest Dissertations & Theses Global, PsycINFO, and Scopus. Results: The search yielded 13 articles. Findings were categorized into 2 overarching themes: (1) structural and relational challenges and (2) educational and training gaps in PC. Time constraints resulted in task-oriented visits, while late PC referrals strained relationships by introducing nurses late in patients’ illness trajectories. Home care nurses often function in isolation with limited access to supervision and support. Persistent gaps were identified in knowledge and skills related to pediatric care, end-of-life discussions, symptom management, and psychosocial support. Conclusion: The findings suggest that nurses’ perceived competence and self-efficacy are shaped by individual, organizational, and systemic factors, highlighting areas for targeted training, organizational change, and policy development to support holistic PC. The review contributes to Bandura’s work by explaining self-efficacy and competence within the context of home-based PC.

Aim To synthesise evidence on how home care providers' readiness to care for children and youth with medical complexity (CYMC) is conceptualised, what shapes it in practice and what approaches have been used to support or enhance readiness. Methods This scoping review was conducted in accordance with PRISMA‐ScR and Joanna Briggs Institute guidelines, with the protocol registered on the Open Science Framework. MEDLINE, Scopus, CINAHL, PsycINFO, Cochrane databases and ProQuest (Nursing & Allied Health; Dissertations & Theses) were searched from 30 ^th April 2025, with an update on 29th December 2025. Quantitative, qualitative, mixed‐methods studies, reviews and relevant grey literature examining provider readiness to care for CYMC (0–18 years) at home were eligible. Two reviewers independently screened and charted data. Results A total of 19 studies were included following screening of 3530 records and 64 full‐text reviews. Providers described limited paediatric‐specific education, mentorship and supervision, variable training quality and reliance on experiential learning. Readiness was shaped by home conditions, isolation, unclear roles, family dynamics and equipment reliability. No tool measured readiness as a unified construct. Lower readiness was related to safety concerns, readmissions, family stress and provider moral distress. Conclusion Provider readiness appears to be a key safety and quality concern in paediatric home care, shaped by clinical, relational and system‐level supports. Future work should clarify the construct, develop measures and test multicomponent strategies combining paediatric‐specific education, mentorship, supported practice and service redesign.

Background: Adolescents and young adults with cancer have distinct developmental and psychosocial needs that require care models bridging pediatric and adult oncology systems. While survival outcomes have improved, there is growing recognition of the need to strengthen coordinated care, psychosocial support, and survivorship services. In Ontario, regional and community-based cancer programs play a central role in delivering accessible care and are well-positioned to support adolescents and young adults closer to home. However, variation in infrastructure, workforce capacity, and system-level coordination influences how developmentally appropriate oncology care is implemented. Existing literature has focused on tertiary and specialty centers, highlighting the need to leverage and strengthen regional systems, providers, and community resources to support high-quality adolescent and young adult cancer care. Objective: This study aimed to explore how structural barriers and supports shape the experiences of adolescents and young adults with cancer, their caregivers, and health care providers (HCPs) in accessing and navigating regional cancer care in Ontario. Methods: An exploratory qualitative study was conducted between July 2024 and March 2025, guided by Bronfenbrenner’s Ecological Systems Theory and a social constructionist orientation. Semistructured interviews were conducted with 14 participants (adolescents and young adults, caregivers, and HCPs) in Southwestern Ontario. Participants were recruited through purposive sampling. Data were analyzed using reflexive thematic analysis. Trustworthiness and rigor were strengthened through reflexive team discussions and audit trail documentation. Results: A total of 2 adolescents and young adults, 6 caregivers, and 6 HCPs were interviewed. Youth were in their early 20s and represented different cancer diagnoses. Most caregivers (n=5) were mothers, and HCPs had 2-20 years of experience. Six key themes were generated: (1) structural gaps in coordinated care, (2) reliance on individual champions, (3) developmental and environmental misalignment, (4) barriers to youth engagement and autonomy, (5) gaps in psychosocial, palliative, and survivorship support, and (6) local system enablers. Participants described fragmented care poorly suited to adolescents’ and young adults’ needs. Care environments often defaulted to child- or adult-oriented models, limiting autonomy and engagement. Psychosocial, palliative, and survivorship supports were unevenly available, particularly during transitions off treatment. Despite these challenges, local satellite clinics and community organizations reduced travel burden, fostered continuity, and provided long-term emotional and financial support. Conclusions: Adolescent and young adult cancer care in regional settings is delivered within evolving systems adapting to youth’s developmental and psychosocial needs. Our findings suggest that targeted investments in workforce development, coordinated communication structures, and age-appropriate care models can further enhance regional capacity to support adolescents and young adults across the cancer trajectory. By shifting from reliance on informal solutions toward more structured, team-based approaches, regional programs can build resilient, youth-responsive systems that promote high-quality, equitable adolescent and young adult cancer care. International Registered Report Identifier (IRRID): RR2-10.2196/76877

Objective: This scoping review aims to examine and map existing literature about barriers encountered by migrant farm workers accessing health care services in Canada. Methods: The search was conducted in multiple databases and grey literature. The PRISMA-ScR was used to document the inclusion and exclusion process. Two or more team members screened and reviewed all articles to ensure accuracy in capturing data. Synthesis: 380 records were screened by examining abstracts and titles, and 325 were deemed irrelevant. Of the remaining records, 55 had full-text assessments; 16 were excluded because they did not meet the inclusion criteria. Thirty-nine articles were extracted. They represented a mix of qualitative and quantitative studies, reviews, and other forms of commentaries and analyses. The thematic analysis revealed barriers that affect migrant farm workers’ access to Canadian health care services: (1) language and literacy challenges, (2) concern of medical repatriation, (3) lack of transportation, (4) barriers to timely care and medical follow-up, (5) restrictive work schedules, and (6) health care coverage issues. Conclusion: This review provides a synthesis of the barriers experienced by migrant farm workers when accessing Canadian health care services. Canadian health care policy experts and organizations where Canadian migrant farm workers seek care are encouraged to design and implement policies, practice changes and/or educational interventions to address these barriers. This review may also inform public health nursing programming to promote positive health outcomes in the migrant farm worker population.

Background: Children with medical complexity (CMC) need coordinated home care beyond traditional healthcare, and how parents interact with these systems is central to shaping their children’s care pathways. While family-centered care emphasizes collaboration between providers and families, this study examined how parents engage with home care systems and the impact of these interactions on their children’s care pathways. Methods: A descriptive qualitative design was used, with reflexive thematic analysis. Fifteen parents (13 mothers, 2 fathers) were recruited through pediatric community organizations across Ontario, Canada. Virtual interviews, 45 to 90 minutes in length, explored experiences with care coordination, system interactions, and service navigation. Data were analyzed inductively using NVivo software. Results: Three overarching themes were generated: (1) systemic barriers in pediatric home care, (2) service delivery and information gaps in home care, and (3) Family-Managed Home Care (FMHC) alternative pathways and trade-offs. Limited funding led to inadequate staffing and poor care quality, resulting in some children losing developmental progress. Parents feared that speaking up about care issues could result in losing services. Information gaps and geographic disparities created systematic inequities. FMHC offered enhanced control but transferred substantial administrative burdens to families, creating new forms of stratification based on administrative capacity. Conclusion: Current home care systems for CMC in Ontario create structural barriers that limit family engagement and shift responsibilities onto families, potentially deepening inequities. Meaningful reform requires engaging families as partners in system design and policy development rather than relying on individual-level solutions.

Background & Purpose: Parents of children with medical complexity (CMC) provide continuous, intensive care that encompasses a range of technical tasks, emotional support, advocacy, and coordination within fragmented healthcare systems. Existing research often treats caregiving as a discrete phenomenon, overlooking how parents make meaning of their roles amid uncertainty and moral distress. This study aimed to explore the lived experiences of parents caring for children with medical complexity at home, examining how caregiving is experienced, sustained, and made meaningful in everyday life. Methods & Procedures: An exploratory qualitative design was used to conduct in-depth, semi-structured interviews with 15 parents (13 mothers, two fathers) of CMC receiving home care in Ontario, Canada. Purposive sampling was used to recruit parents. Data were analyzed using Braun and Clarke's thematic analysis approach. Results: Two overarching themes emerged from parents’ accounts: (1) The Layered and Relentless Nature of Caregiving; and (2) The Transformation of Self Through Caregiving, with effects spanning social life, identity loss, mental and physical health decline, and financial strain. Parents reported role overload, identity loss, chronic fatigue, emotional isolation, and ongoing pressure to advocate within unresponsive systems. The lack of consistent and reliable home care and financial support intensified challenges. Conclusion: Caring for a CMC impacts parental well-being and reshapes their identity. Sustainable caregiving requires policies and services that support more than just childcare. Integrated mental health services, equitable access to respite, income protections, and caregiver-informed systems are needed to relieve families of unsupported responsibilities and ensure the long-term sustainability of home-based complex care.

BACKGROUND Adolescents and young adults with cancer have distinct developmental and psychosocial needs that require care models bridging pediatric and adult oncology systems. While survival outcomes have improved, there is growing recognition of the need to strengthen coordinated care, psychosocial support, and survivorship services. In Ontario, regional and community-based cancer programs play a central role in delivering accessible care and are well-positioned to support adolescents and young adults closer to home. However, variation in infrastructure, workforce capacity, and system-level coordination influences how developmentally appropriate oncology care is implemented. Existing literature has focused on tertiary and specialty centers, highlighting the need to leverage and strengthen regional systems, providers, and community resources to support high-quality adolescent and young adult cancer care. OBJECTIVE This study aimed to explore how structural barriers and supports shape the experiences of adolescents and young adults with cancer, their caregivers, and health care providers (HCPs) in accessing and navigating regional cancer care in Ontario. METHODS An exploratory qualitative study was conducted between July 2024 and March 2025, guided by Bronfenbrenner’s Ecological Systems Theory and a social constructionist orientation. Semistructured interviews were conducted with 14 participants (adolescents and young adults, caregivers, and HCPs) in Southwestern Ontario. Participants were recruited through purposive sampling. Data were analyzed using reflexive thematic analysis. Trustworthiness and rigor were strengthened through reflexive team discussions and audit trail documentation. RESULTS A total of 2 adolescents and young adults, 6 caregivers, and 6 HCPs were interviewed. Youth were in their early 20s and represented different cancer diagnoses. Most caregivers (n=5) were mothers, and HCPs had 2-20 years of experience. Six key themes were generated: (1) structural gaps in coordinated care, (2) reliance on individual champions, (3) developmental and environmental misalignment, (4) barriers to youth engagement and autonomy, (5) gaps in psychosocial, palliative, and survivorship support, and (6) local system enablers. Participants described fragmented care poorly suited to adolescents’ and young adults’ needs. Care environments often defaulted to child- or adult-oriented models, limiting autonomy and engagement. Psychosocial, palliative, and survivorship supports were unevenly available, particularly during transitions off treatment. Despite these challenges, local satellite clinics and community organizations reduced travel burden, fostered continuity, and provided long-term emotional and financial support. CONCLUSIONS Adolescent and young adult cancer care in regional settings is delivered within evolving systems adapting to youth’s developmental and psychosocial needs. Our findings suggest that targeted investments in workforce development, coordinated communication structures, and age-appropriate care models can further enhance regional capacity to support adolescents and young adults across the cancer trajectory. By shifting from reliance on informal solutions toward more structured, team-based approaches, regional programs can build resilient, youth-responsive systems that promote high-quality, equitable adolescent and young adult cancer care. INTERNATIONAL REGISTERED REPORT RR2-10.2196/76877

Background: Children and youth with medical complexities have chronic conditions, functional limitations, and extensive care needs requiring significant family involvement and frequent health service use. Pediatric medicine has improved their life expectancy, shifting care from acute to home settings. In Ontario, home care is publicly funded and includes nursing, therapy, personal support, and allied health services. However, families continue providing the bulk of care, often at great personal costs. As care complexity increases, so does the reliance on home care providers. Yet, many providers report feeling unprepared due to insufficient pediatric training, lack of supervision, and system-level gaps. Here we applied Weiner’s theory of organizational readiness for change, framing readiness as a shared psychological state involving commitment to and confidence in delivering change, thus helping conceptualize provider readiness as encompassing individual competence, contextual supports, and motivational factors. Despite its importance, provider readiness in pediatric home care remains poorly understood. Objective: We examine how home care providers perceive their readiness to care for children and youth with medical complexities, factors influencing readiness, and strategies proposed to enhance their capacity to deliver safe, coordinated, developmentally appropriate home care. Methods: This scoping review follows the updated Joanna Briggs Institute scoping review methodology and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. Articles focusing on (1) children and youth with medical complexities aged 0-18 years receiving home care and (2) with at least one chronic medical condition, and (3) paid home care providers will be searched on MEDLINE, CINAHL, Scopus, ProQuest Nursing & Allied Health, PsycINFO, Cochrane Central Register of Controlled Trials, and Cochrane Database of Systematic Reviews. Gray literature will be searched on Google Scholar and ProQuest (Dissertations & Theses). A 2-stage screening process will be conducted in Covidence, involving title and abstract screening and full-text review by 2 independent reviewers. Data will be extracted using predefined charting categories and analyzed using both qualitative and quantitative approaches. Results: As of May 2025, screening is underway. The review will map key themes across provider types, care settings, and training contexts and identify factors influencing provider readiness including access to training, system navigation supports, and workplace role clarity and chart recommendations or strategies to enhance readiness. Gaps in pediatric-specific competencies and workforce preparation may also emerge. Conclusions: This review will synthesize current evidence on provider readiness in pediatric home care, identifying strengths, challenges, and development areas. Findings will inform provider training, workforce development, and policy strategies to ensure children and youth with medical complexities receive safe, coordinated, effective home care. A deeper understanding of provider readiness will support more sustainable home care systems and improve outcomes for children and youth with medical complexities and their families. Trial Registration: OSF Registries 10.17605/OSF.IO/N4FAJ; https://osf.io/n4faj International Registered Report Identifier (IRRID): PRR1-10.2196/76796

BACKGROUND Adolescents diagnosed with cancer face significant disruptions to their development, education, and social lives. These challenges are pronounced in regional settings, where access to specialized, developmentally appropriate oncology care is limited. In Ontario, Canada, youth aged 12 to 18 years often fall between pediatric and adult care systems, leading to fragmented services, unmet psychosocial needs, and long-term disparities in survivorship. While international literature has examined the cancer experiences of adolescents and young adults, most research originates from the United States, limiting its relevance in the Canadian context. In Ontario’s regional hospitals, youth and families face disparities in care quality, specialist access, and logistical challenges. More research is needed to inform equitable, youth-centered cancer care models. OBJECTIVE This study aims to explore the lived experiences of youth cancer survivors, their caregivers, and health care providers (HCPs) in a regional Canadian context. The study investigates four research questions: (1) What are the daily experiences and psychosocial needs of youth during and after treatment? (2) How do caregivers navigate cancer care for youth? (3) What are HCPs’ perspectives on delivering cancer care for youth? (4) What recommendations can youth, caregivers, and HCPs offer to improve cancer care systems for youth? METHODS We applied a qualitative descriptive design using semistructured web-based interviews and reflexive thematic analysis. Participants were recruited through a multimethod strategy, including clinician referral, posters, digital outreach, and professional networks. The anticipated sample includes 24 participants: 8 (33%) youth cancer survivors (aged 12 to 18 years at diagnosis), 8 (33%) caregivers, and 8 (33%) HCPs. Eligibility criteria were defined to ensure safety, diversity, and relevance. Interviews were conducted via Microsoft Teams, transcribed verbatim, and analyzed using the 6-phase reflexive thematic analysis approach described by Braun and Clarke. NVivo software supported coding and theme development. Demographic data were analyzed descriptively to contextualize the findings. RESULTS As of September 2025, 14 participants had completed interviews: 6 (43%) caregivers, 6 (43%) HCPs, and 2 (14%) youths. Youth recruitment has been challenging due to the developmental stage and competing commitments. Data collection concluded in December 2024. Preliminary transcript coding was completed in early 2025, with final analysis and synthesis of themes completed in June 2025. This study was funded in August 2023, and results are expected to be published in Fall 2025 and Winter 2026. CONCLUSIONS This study will provide critical insight into cancer care delivery for youth in a regional Canadian setting. Integrating youth, caregiver, and HCP perspectives will illuminate systemic gaps, relational dynamics, and context-specific barriers. The findings will inform policy, education, and service innovations aimed at improving equity, continuity, and developmental responsiveness in oncology care for adolescents and young adults in Canada. INTERNATIONAL REGISTERED REPORT RR1-10.2196/76877