Shannon D. Scott

Objective: The objective of this mixed methods systematic review was to synthesize primary research regarding parents’ self-reported experiences and information needs related to seeking emergency care for their child with medical complexity. Introduction: Children with medical complexity are frequent users of emergency department and other emergency care services. While some primary research describing family experiences of caring for children with medical complexity exists, no synthesis of available evidence on this topic is available. Findings from this review can provide a better overall understanding of the experiences and information needs of parents while in emergency care settings with a child with medical complexity in order to support families and guide expectations. Eligibility criteria: Primary studies of any design were included when reported in English, conducted with parents of a child < 18 years of age with medical complexity, and describing parents’ experiences or information needs when in emergency care settings. Methods: A search was conducted in the following electronic databases from inception to May 17, 2024: MEDLINE, Embase (Ovid), PsycINFO (Ovid), Scopus, and CINAHL Plus with Full Text (EBSCOhost). Screening and data extraction were completed by 2 reviewers independently. Eligible studies were critically appraised for methodological quality by 2 reviewers independently using the Mixed Methods Appraisal Tool. Data synthesis and integration of qualitative and quantitative data occurred simultaneously following the JBI convergent integrated approach. Results: Fifteen studies were included: 3 quantitative, 5 mixed methods, and 7 qualitative. The majority of studies were conducted in the United States (n=10, 67%) and used semi-structured interviews or focus group discussions to collect data (n=11, 73%). The most common pediatric diagnosis was sickle cell disease (n=6, 40%). Most included studies (n=12, 80%) met at least 80% of the Mixed Methods Appraisal Tool criteria. Synthesized findings were grouped into 6 integrated findings: i) patient and family experiences are impacted by the need to constantly advocate for their child; ii) parents perceived a lack of skills and knowledge among health care providers in caring for children with medical complexity; iii) parents experienced challenges when accessing emergency services and during transitions in care; iv) perceptions of the care received are influenced by quality of communication, timeliness of care, and pain management; v) collaboration and coordination in care are necessary; and vi) information supporting communication and decision-making can support positive experiences in emergency care settings. Conclusions: This mixed methods systematic review synthesized research to explore and gain a broader understanding of the experiences and information needs of parents when presenting to emergency care settings with a child with medical complexity. Findings highlight opportunities to improve patient and family experiences through improved communication, collaboration, care coordination, pain management, and informed decision-making. Findings can be used to inform the development of knowledge translation resources (eg, videos, infographics) for parents, and to contextualize educational tools or interventions for health care providers working in emergency care settings. Creating evidence-based resources for families and health care providers that consider parent perspectives has the potential to promote informed and shared decision-making while supporting patient-centered care. Review registration: PROSPERO CRD42024534701

Context: Effective management of children’s acute pain in emergency departments (EDs) is essential, yet health disparities exist. The applicability of evidence to diverse pediatric populations depends on clear demographic reporting. The PROGRESS-Plus framework identifies social determinants of health that influence care and outcomes, but it is unclear to what extent randomized controlled trials (RCTs) in pediatric ED pain management report these variables. Objective: This scoping review examines the frequency and completeness of PROGRESS-Plus reporting in RCTs evaluating acute pain interventions for children in EDs in Canada and the USA. Data Sources: Using Joanna Briggs Institute methodology and the Participant, Concept, Context framework, we conducted a scoping review of RCTs published between 2013 and 2025. MEDLINE, PsycINFO, CINAHL, and CENTRAL were searched using a peer-reviewed strategy. Study Selection: Eligible studies involved children and youth experiencing acute presenting or procedural pain in ED settings. Two reviewers independently screened studies. Data Extraction: Data were extracted using standardized forms refined with input from patient partners. Narrative synthesis and descriptive statistics were applied to summarize PROGRESS-Plus reporting. Results: Of 3667 records identified, 65 RCTs met inclusion criteria. Thirty-five studies focused on procedural pain interventions, and 30 on interventions for painful presentations. Age was reported in all studies, and gender and/or sex in 98%. Race and/or ethnicity was reported in 40%, and chronic illness and/or disability in 18%. No studies reported socioeconomic status or place of residence. Conclusions: RCTs addressing pediatric pain in the ED rarely report equity-relevant demographic variables beyond age and gender and/or sex, limiting assessment of intervention effectiveness across diverse populations. Standardized demographic reporting is needed to support equitable, evidence-based pain research and care.

BACKGROUND Young people increasingly seek sexual health information through digital technologies, particularly when sensitive questions are difficult to discuss with parents, educators, or health care professionals. Conversational artificial intelligence may offer a private, immediate, and accessible way to obtain information through natural-language interactions. However, generative artificial intelligence systems can produce inaccurate, unsupported, biased, or developmentally inappropriate responses, creating important safety concerns for adolescents and young adults. Although conversational agents have been investigated for sexual and reproductive health, qualitative and participatory studies remain among the least represented in this literature and less is known about how diverse youth can be meaningfully engaged throughout the design of generative artificial intelligence systems intended to provide sensitive health information. OBJECTIVE This study aims to engage youth in the co-design and evaluation of an artificial intelligence–powered chatbot intended to provide safe, reliable, inclusive, and evidence-based comprehensive sexuality education to youth aged 15-24 years in Canada. Specifically, the study will identify youths’ sexual health information and support needs, engage youth in chatbot development, and evaluate the prototype’s usability, acceptability, perceived safety, and utility. METHODS This multiphase study is guided by community-based participatory research and informed by intersectionality and user-centered design. In phase 1, a National Youth Advisory Group (N-YAG) of approximately 10-12 youth aged 15-24 years will be established and will remain engaged across all subsequent phases, contributing to study implementation, co-development of the focus group guide, interpretation of findings, chatbot development, usability assessment, and knowledge mobilization. Phase 2 will involve 8-10 virtual focus groups with approximately 80-100 youth aged 15-24 years residing in Canada to explore sexual health information-seeking experiences, unmet needs, barriers to accessing information and support, and expectations of conversational artificial intelligence. In phase 3, qualitative findings and vetted sexual health resources will inform development of a curated knowledge base, which will be validated by a panel of 3-5 content experts using content validity indices and reviewed by the N-YAG, and then integrated into a chatbot prototype using retrieval-augmented generation. In phase 4, approximately 30-60 youth will use the prototype for approximately 2 days and participate in usability testing combining virtual focus groups with standardized rating scales, including the System Usability Scale and the user version of the Mobile Application Rating Scale, alongside study-developed items addressing inclusivity, perceived safety, and trust. Qualitative data will be analyzed using the DEPICT participatory analysis model and managed using NVivo. Rating-scale data will be summarized descriptively, and open-ended responses will be analyzed thematically. The study received ethics approval from the University of Alberta Research Ethics Board (Pro00164574). RESULTS Recruitment is expected to begin in November 2026. Data collection across all 4 phases is anticipated to conclude in March 2027. Initial study findings are expected to be disseminated and submitted for publication in fall 2027. CONCLUSIONS This study places young people within the design and interpretation processes of an artificial intelligence–supported sexual health intervention. Integrating participatory research with a validated sexual health knowledge base and retrieval-augmented generation may provide practical insights into the development of safer and more inclusive conversational artificial intelligence for developmentally sensitive health information. CLINICALTRIAL NA

BACKGROUND Given significant advances in medical treatment and technology in recent decades, increasing numbers of children with health conditions are living longer and most will require transition from pediatric to adult care. Many youth and their caregivers experience challenges during this transition, leading to adverse health outcomes. In response, transition in care (TiC) has been identified as a priority health system issue in Canada. Substantial investments have promoted the development of TiC innovations to improve the transition from pediatric to adult care. However, these TiC innovations are rarely implemented or sustained in practice. Knowledge translation (KT) interventions are strategies designed to promote the uptake of innovations into clinical practice. Despite a growing body of evidence KT interventions and TiC innovations, little is known about what, when, and how KT interventions influence the implementation and sustainability of TiC innovations. OBJECTIVE This mixed methods realist evaluation will examine what, when, how, and under what contexts KT interventions work or do not work to support the implementation and sustainability of TiC innovations for youth transitioning from pediatric to adult care. METHODS Guided by realist methodology, the study comprises three phases. An integrated knowledge translation approach is used to actively involve people with lived and professional experience of TiC throughout the study. In Phase 1, we will conduct a realist review to identify KT interventions and develop initial program theories. In Phase 2, we will test and refine these initial program theories through a realist evaluation, using a multiple comparative case study design, leveraging three real-world TiC innovation cases in Alberta, Ontario, and Nova Scotia. In Phase 3, we will host a knowledge exchange event to co-design recommendations for using KT interventions to support the implementation and sustainability of TiC innovations. RESULTS This is study is funded by the Canadian Institutes of Health Research, starting in January 2026. Scientific and Research Partner Teams have been established with representation from across Canada. Terms of reference have been co-developed to guide engagement with youth, caregivers, healthcare professionals, health system leaders, and community partners. The total project duration is anticipated to be three years. CONCLUSIONS Using a theory-driven realist approach, this study will test and generate refined program theories explaining what, when, how, and under what contexts KT interventions work, or do not work, to implement and sustain TiC innovations. These theories will inform the co-development of recommendations, with the potential to reduce research waste and support the use and adaptation of KT interventions across different health conditions and settings in Canada and internationally.

Introduction: Young adults with chronic conditions, including epilepsy, congenital heart disease (CHD) and systemic lupus erythematosus (SLE), face unique sexual and reproductive health (SRH) challenges. Limited access to age-appropriate information, inconsistent counselling and systemic inequities contribute to unmet needs and suboptimal reproductive outcomes. Evidence on SRH in this population remains limited. This review maps existing literature and identifies barriers, facilitators and gaps in SRH care across these conditions. Methods: This review followed Joanna Briggs Institute (JBI) methodology for scoping reviews. A search was conducted in MEDLINE, Embase, CINAHL, PsycINFO, Scopus and grey literature for studies published from inception through October 2025. Using Covidence, three reviewers completed screening. Data on study characteristics, participants, SRH needs, barriers, facilitators and key findings were extracted and synthesised descriptively and narratively. The protocol is registered on the Open Science Framework ( https://doi.org/10.17605/OSF.IO/5SWTY ). Results: 21 studies met eligibility criteria, focusing on young adults aged 10–24 years with epilepsy, CHD or SLE from Canada and the USA. Participants consistently reported unmet SRH needs around contraception, pregnancy planning and reproductive risks, with counselling often delayed or inadequate. Barriers included limited provider guidance, stigma, fear of complications, fragmented care, transition gaps and racial/socioeconomic inequities. Facilitators included young adult-centred education and multidisciplinary care. Males and gender-diverse populations remain underrepresented. Conclusion: SRH remains insufficiently addressed among young adults with chronic conditions, requiring inclusive research, equitable policies and integrated clinical approaches.

Introduction: Adolescence and young adulthood (ages 15–24) are critical developmental periods that require comprehensive sexual and reproductive health (SRH) education. Youth with chronic conditions like epilepsy, congenital heart disease (CHD) and systemic lupus erythematosus (SLE) face unique SRH challenges, such as teratogenic medication risks and higher maternal mortality, yet often lack specialised counselling. A significant evidence gap exists in Canada regarding the SRH needs and access to care for this population. To address the SRH needs of youth with epilepsy, CHD and SLE, this project will apply community-based participatory research (CBPR) principles to meaningfully engage youth and co-design culturally relevant knowledge translation tools that enhance SRH information and care for these youth. Methods and analysis: This study employs a four-stage CBPR and integrated knowledge translation (iKT) approach. Stage 1 involves a scoping review and environmental scan to map existing SRH evidence and resources. Stage 2 uses semistructured qualitative interviews (n=30–40) with youth with chronic conditions to explore lived experiences regarding SRH needs and services. Stage 3 uses CBPR and human-centred design (HCD) to co-create tailored KT tools (eg, infographics, videos) with youth partners. Stage 4 is a mixed-methods evaluation involving a usability survey (n=60–75) and nine focus group discussions to assess the tools’ potential usability, acceptability, perceived usefulness and relevance. Ethics and dissemination: Ethical approval has been obtained from the University of Alberta Research Ethics Board ( Pro00165408 ). Informed consent will be secured from all participants. Dissemination will include peer-reviewed publications, academic presentations, social media content (TikTok, Instagram) and a national Canadian conference. Registration details: The protocol for the scoping review is registered in the Open Science Framework ( https://doi.org/10.17605/OSF.IO/5SWTY ).

Background: Many adolescents rely on digital sources for sexual and reproductive health (SRH) information; yet, online content is often inconsistent, inaccurate, or difficult to interpret. Digital knowledge translation strategies offer promising approaches to deliver accessible and youth-centred SRH education. This study aimed to explore youth perceptions, lived experiences, barriers, and facilitators to SRH education and services in Alberta, Canada. The study also sought to identify priority SRH topics, preferred communication approaches, and design features that would enhance usability and acceptability. Methods: We used a community-based participatory research approach to recruit 15 young people aged 15–24 years from diverse backgrounds as youth partners to help guide the study, including exploring barriers to SRH education, identifying preferences for digital text-message-based SRH content, and informing the development of youth-friendly educational resources. Data were collected through semi-structured interviews. Braun and Clarke’s reflexive thematic analysis approach was used to identify themes related to content priorities, messaging preferences, and implementation considerations. Results: Participants emphasised the importance of accessible, non-judgemental, and culturally responsive SRH information. Content priorities included healthy relationships, consent, online safety, sexual orientation and gender identity, and communication with trusted adults. Short, clear messages delivered in a supportive tone was preferred, with links to credible resources. Youth highlighted the need for guidance in initiating conversations and addressing sensitive topics. Study results also demonstrated strong support for text messaging as a convenient and private method for receiving SRH information. Conclusions: Interactive text messaging represents a feasible and acceptable strategy for delivering youth-centred SRH education to design digital interventions that are relevantcultural appropriate, and useable,.