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Buchanan talks about her son who had been in hospital for 500 days. Before he could be discharged, she and her husband had to undergo extensive training on all his medical care and equipment. They learned what acronyms such as \"PIP\" and \"PEEP\" meant on his ventilator; they learned what all the alarms were telling us and how to troubleshoot them. They learned how to give him oxygen and life-saving breaths with a resuscitation bag while calling 911 if required. However, all the newly acquired knowledge and skills did little to alleviate the overwhelming sense of dread and fear that they could not do it. When theirson was discharged from the ICU, they had a 24/7 hotline to respiratory therapists trained on his ventilator. If they had a question, they could contact a specialist on call at the hospital.

Chanchlani et al examine the indirect effects of COVID-19 on the health of children and young people. As of June 21, 2020, 6,982 individuals in Canada aged 19 years and younger, hereafter referred to as children and young people, had tested positive for severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection, leading to 98 hospital admissions and 20 intensive care admissions, but no deaths. Aside from cases of pediatric multisystem inflammatory syndrome temporally associated with SARS-CoV-2 (PIMS-TS), for which understanding is still developing worldwide, children and young people have been more mildly affected by coronavirus disease 2019 (COVID-19) than adults. Countries that have seen substantial disruption to usual medical services and widespread public health measures related to COVID-19 are likely to see both immediate and long-term indirect effects of the pandemic on health. The potential adverse effects on children and young people's health may be underappreciated. Moreover, the limited access to primary and secondary health care, the parental fear of seeking health care, the closures of daycare and schools, employment and financial instability, and the greater risk of exposure to adverse childhood experiences are discussed.

Amin et al discuss the Long-Term In-Home Ventilator Engagement (LIVE) program, a new virtual care program, rolled out during the coronavirus disease 2019 (COVID-19) pandemic to enable specialized centres to provide virtual support to people using home mechanical ventilation (HMV). The LIVE program is an intensive clinical management program delivered via an e-health platform, creating a circle of care that includes HMV clinical teams, ventilator technology support specialists, the patient and their family caregivers. The LIVE program was codesigned by patients, families, health care professionals and clinical academics, in collaboration with our e-health partner. By bringing the expertise of HMV specialists virtually into the home, LIVE overcomes barriers related to distance and travel for patients who are often fragile and dependent on complex equipment that is hard to transport, as well as the risk of exposure to SARS-CoV-2. The standard of care before COVID-19 included in-person clinic visits with the specialized HMV team every 3-6 months for clinical assessment and ventilator data downloads. In addition, a respiratory therapist from the ON-VEP is available at all hours for equipment-related issues. The LIVE program comprises a multicomponent intervention that includes virtual home visits, customizable care plans and clinical workflows for respiratory symptoms and signs. It also addresses ventilator issues.

Background Children with medical complexity (CMC) have high healthcare utilization and face unique challenges during hospital admissions. The evidence describing their experiences of inpatient care is distributed across disciplines. The aim of this scoping review was to map the evidence related to the inpatient experience of care for CMC and their families, particularly related to key aspects and methodological approaches, and identify gaps that warrant further study. Methods This scoping review was conducted in accordance with JBI methodology and included all studies that reported experiences of acute hospital care for CMC/families. All study designs were included. Databases searched included EMBASE, CINAHL Plus with Full Text, Web of Science, MEDLINE(R) and APA PsycInfo from 2000 to 2022. Details about the participants, concepts, study methods and key findings were ed using a data ion tool. A thematic analysis was conducted. Results Forty‐nine papers were included: 27 qualitative studies, 10 quantitative studies, six mixed methods studies, two descriptive studies and four reviews. Some quantitative studies used validated instruments to measure experience of care, but many used non‐validated surveys. There were a few interventional studies with a small sample size. Results of thematic analysis described the importance of negotiating care roles, shared decision‐making, common goal setting, relationship‐building, communication, sharing expertise and the hospital setting itself. Conclusion CMC and families value relational elements of care and partnering through sharing expertise, decision‐making and collaborative goal‐setting when admitted to hospital. Patient or Public Contribution This review was conducted in alignment with the principles of patient and family engagement. The review was conceptualized, co‐designed and conducted with the full engagement of the project's parent–partner. This team member was involved in all stages from constructing the review question, to developing the protocol, screening articles and drafting this manuscript. Practitioner Points Qualitative research describes key elements of inpatient experience of care for CMC and their families as relationships, communication, respect for parent/provider expertise and the hospital setting. There is less evidence on measuring experience of care using quantitative methodology, particularly using validating instruments. This would be helpful to support the evaluation of inpatient interventions to improve the experiences of CMC.

Pediatric patient and family engagement is an active and collaborative process, that involves children, adolescents, and family members with lived experience contributing to the design, implementation, and evaluation of healthcare services. Prior studies have highlighted the patient engagement methods and impact in clinical care, education, and research. However, gaps remain in understanding the commonalities and distinctions of engagement approaches, patient/family partner roles, and outcomes in clinical care, education, and research contexts. Further, research examining the nuances of pediatric patient and family engagement within healthcare delivery, education, and research in pediatric institutions is needed to streamline efforts. This scoping review will identify the commonalities of and distinctions between pediatric patient and family engagement in clinical care, education, and research contexts in pediatric healthcare institutions. A scoping review, conducted in collaboration with a team of adolescent, young adult, and family partners, will allow us to systematically map out key concepts, evidence, and knowledge gaps regarding pediatric patient and family engagement in clinical care, education, and research. We will follow the Joanna Briggs Institute framework in the design and conduct of the review and guidance on engaging knowledge users within scoping reviews. The protocol for this scoping review has been registered with the Open Science Framework database (https://osf.io/63qx5). This study will describe the engagement types, approaches, and outcomes of pediatric patient and family engagement employed within clinical care, education, and research settings, highlighting commonalities and distinctions across contexts. In doing so, it will identify potential opportunities for collaboration and resource-sharing based on the context of engagement and provide needed clarity on streamlining pediatric patient and family engagement approaches within pediatric institutional settings. It is anticipated that the results will produce preliminary evidence of relevance to pediatric institutions seeking to consolidate engagement practices across clinical care, education, and research domains.

Family caregivers have primary responsibility for providing care in the home for people with neuromuscular diseases (NMDs). This may negatively affect caregiver health. Peer support may enhance quality of life and reduce stress among family caregivers, but few trials have been conducted in NMD caregivers. Therefore, we conducted a randomized controlled trial with a nested qualitative evaluation (this report) of a 12-week digital peer support intervention for family caregivers of children and adults with NMD. The aim of the study is to gain insights into the perspectives of intervention participants and peer mentors regarding their experiences with the trial's digital peer support program. We conducted a nested exploratory qualitative study (August 2022 to March 2024), recruiting participants who were randomized to the intervention arm of the randomized controlled trial and study mentors. We conducted semistructured interviews via videoconferencing. Homophily theory and the theoretical framework of acceptability informed our analyses. We interviewed 21 participants and 10 mentors, identifying four themes: (1) program participation motivators, (2) program expectations and appreciation, (3) program appropriateness, and (4) the peer mentor-mentee dyad. We found that participants were motivated to join the program due to existing caregiver burden and social isolation. Participants and mentors appreciated the program's sense of community and flexible digital format, with participants valuing emotional and informational support. However, challenges in relating to each other's situations due to participant and mentor heterogeneity in the extent of the care recipient's needs were perceived to limit benefit. Peer support was perceived as potentially beneficial in relieving caregiver burden and social isolation, creating a sense of community that provides emotional and informational support. The digital and flexible format was an important facilitator. An important barrier was participant-mentor heterogeneity resulting in reduced perception of homophily. These findings can inform the development of other digital peer support programs to alleviate caregiver burden and isolation and provide emotional relief and informational guidance.

Introduction Several systematic and scoping reviews have focused on the impact of patient and public involvement (PPI) in child health research. The aim of this research was to examine the data sources and analytic approaches used by researchers to evaluate the impact of PPI in child health research. Methods A comprehensive literature search identified published reviews focused on PPI impact in child health research. Titles, s, and full texts were screened to determine eligibility. Individual studies from eligible reviews created the sampling frame, from which 100 individual studies were randomly selected. Information was extracted on primary study characteristics, type of PPI, data sources and analytic approaches used to evaluate PPI impact, and reported PPI impact. Frequency distributions were used to summarise the findings. Results The initial search yielded 5868 citations. After screening, 15 reviews (comprising 406 individual studies, of which 303 were unique) met inclusion criteria. Among the 100 randomly selected individual studies, PPI was reported across all phases of the research process including priority setting (30/100), input on study materials (50/100), and dissemination of study findings (52/100). The method of PPI was most commonly focus groups (29/100) or advisory committees (27/100). Of the 100 studies selected, 67/100 reported impact on the research process, 69/100 reported impact on patients and families, and 32/100 studies reported impact on researchers. Regarding the data sources used to evaluate PPI impact, 69/100 studies reviewed primary study field notes along with researcher observations and reflections, while 31/100 studies conducted independent, specific, focus groups and/or interviews and/or surveys to gather data. Regarding the analytic approaches used to evaluate PPI impact, formal qualitative and/or quantitative analyses of the data occurred in only 25/100 studies. Only 2/100 studies used a formal PPI reporting guideline. Conclusion Only 31/100 studies collected specific, independent data on the impact of PPI in child health research, and only 25/100 studies applied formal analyses. Robust evaluation of PPI impact in child health research is essential for a strong PPI evidence base. Patient or Public Contribution A patient partner (co‐author, FB) was a member of the research team from study inception, and contributed to the development of the study protocol, including refining the research question, input on study design, selection of relevant outcomes, interpretation of findings, writing the manuscript, and developing dissemination plans.

Background Descriptions of the COVID-19 pandemic’s indirect consequences on children are emerging. We aimed to describe the impacts of the pandemic on children with medical complexity (CMC) and their families. Methods A one-time survey of Canadian paediatricians using the Canadian Paediatric Surveillance Program (CPSP) was conducted in Spring 2021. Results A total of 784 paediatricians responded to the survey, with 70% ( n  = 540) providing care to CMC. Sixty-seven (12.4%) reported an adverse health outcome due to a COVID-19 pandemic-related disruption in healthcare delivery. Disruption of the supply of medication and equipment was reported by 11.9% of respondents ( n  = 64). Respondents reported an interruption in family caregiving (47.5%, n  = 252) and homecare delivery (40.8%, n  = 218). Almost 47% of respondents ( n  = 253) observed a benefit to CMC due to COVID-19 related changes in healthcare delivery, including increased availability of virtual care and reduction in respiratory illness. Some (14.4%) reported that CMC were excluded from in-person learning when their peers without medical complexity were not. Conclusion Canadian paediatricians reported that CMC experienced adverse health outcomes during the COVID-19 pandemic, including disruptions to family caregiving and community supports. They also describe benefits related to the pandemic including the expansion of virtual care. These results highlight the need for healthcare, community and education policymakers to collaborate with families to optimize their health.