Severe Respiratory Disease Among Children With and Without Medical Complexity During the COVID-19 Pandemic.

Importance: Severe respiratory disease declined during the COVID-19 pandemic, partially due to decreased circulation of respiratory pathogens. However, the outcomes of children with higher risk have not been described using population-based data. Objective: To compare respiratory-related hospitalizations, intensive care unit (ICU) admissions, and mortality during the pandemic vs prepandemic, among children with medical complexity (CMC) and without medical complexity (non-CMC). Design, Setting, and Participants: This population-based repeated cross-sectional study used Canadian health administrative data of children aged younger than 18 years in community and pediatric hospitals during a pandemic period (April 1, 2020, to February 28, 2022) compared with a 3-year prepandemic period (April 1, 2017, to March 31, 2020). The pandemic period was analyzed separately for year 1 (April 1, 2020, to March 31, 2021) and year 2 (April 1, 2021, to February 28, 2022). Statistical analysis was performed from October 2022 to April 2023. Main Outcomes and Measures: Respiratory-related hospitalizations, ICU admissions, and mortality before and during the pandemic among CMC and non-CMC. Results: A total of 139 078 respiratory hospitalizations (29 461 respiratory hospitalizations for CMC and 109 617 for non-CMC) occurred during the study period. Among CMC, there were fewer respiratory hospitalizations in both 2020 (rate ratio [RR], 0.44 [95% CI, 0.42-0.46]) and 2021 (RR, 0.55 [95% CI, 0.51-0.62]) compared with the prepandemic period. Among non-CMC, there was an even larger relative reduction in respiratory hospitalizations in 2020 (RR, 0.18 [95% CI, 0.17-0.19]) and a similar reduction in 2021 (RR, 0.55 [95% CI, 0.54-0.56]), compared with the prepandemic period. Reductions in ICU admissions for respiratory illness followed a similar pattern for CMC (2020: RR, 0.56 [95% CI, 0.53-0.59]; 2021: RR, 0.66 [95% CI, 0.63-0.70]) and non-CMC (2020: RR, 0.22 [95% CI, 0.20-0.24]; RR, 0.65 [95% CI, 0.61-0.69]). In-hospital mortality for these conditions decreased among CMC in both 2020 (RR, 0.63 [95% CI, 0.51-0.77]) and 2021 (RR, 0.72 [95% CI, 0.59-0.87]). Conclusions and Relevance: This cross-sectional study found a substantial decrease in severe respiratory disease resulting in hospitalizations, ICU admissions, and mortality during the first 2 years of the pandemic compared with the 3 prepandemic years. These findings suggest that future evaluations of the effect of public health interventions aimed at reducing circulating respiratory pathogens during nonpandemic periods of increased respiratory illness may be warranted.

How Did Governments Address the Needs of People With Disabilities During the COVID-19 Pandemic? An Analysis of 14 Countries' Policies Based on the UN Convention on the Rights of Persons With Disabilities.

BACKGROUND: People with disabilities have experienced heightened social risks in the context of the pandemic, resulting in higher rates of infection and mortality. They have also borne elevated burdens associated with public health measures. The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) obliges its 184 state parties to eliminate discrimination and ensure equality and inclusion for persons with disabilities, including protection and safety in situations of emergency. It remains unclear to what extent national COVID-19 policies have aligned with these commitments under the UNCRPD. Our objective in this exploratory study was to assess alignment between the UNCRPD indicators and COVID-19 policies from 14 countries with the goal of informing policy development that is inclusive of persons with disabilities and responsive to rights under the UNCRPD. METHODS: We identified COVID-19 policy documents from 14 purposively selected countries. Country selection considered diversity based on geographic regions and national income levels, with restriction to those countries that had ratified the UNCRPD and had English or French as an official language. We used a computational text mining approach and developed a complex multilevel dictionary or categorization model based on the UNCRPD Bridging the Gap indicators proposed by the Office of the High Commissioner on Human Rights (OHCHR). This dictionary was used to assess the extent to which indicators across the entirety of the UNCRPD were represented in the selected policies. We analyzed frequency of associations with UNCRPD, as well as conducting 'key word in context' analyses to identify themes. RESULTS: We identified 764 COVID-19 national policy documents from the period of January 2020 to June 2021. When analyzed in relation to the Articles of the UNCRPD, the most frequently identified were Articles 11 (risk and humanitarian emergencies), 23 (home and family), 24 (education), and 19 (community living). Six countries produced 27 policies that were specifically focused on disability. Common themes within these documents included continuation of services, intersectionality and equity, and disability considerations in regulations and public health measures. CONCLUSION: Analyzing country policies in light of the UNCRPD offers important insights about how these policies do and do not align with states' commitments. As new policies are developed and existing ones revised, more comprehensive approaches to addressing the rights of persons with disabilities are urgently needed.

What do parents want from healthcare services? Reports of parents' experiences with pediatric service delivery for their children with disabilities.

PURPOSE: Family-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare. This article describes that parents continue to report mixed experiences with healthcare services for their children, as well as their ideas about what they need and want from these services. These findings will inform the development of an up-to-date measure of Family-Centred Service called Measure of Processes of Care (MPOC 2.0). METHODS: A qualitative descriptive study was conducted with parents, using focus groups and open-ended interviews. Data were analyzed using inductive content analysis. RESULTS: Parents want care that is individualized, co-ordinated, easily accessible, and takes into account the entire family dynamic. They want service providers (SPs) to be informed and invested in their child's care, and to provide parents with practical assistance. They also want to be treated with respect, caring and empathy, and to work together with SPs on the care plan. Novel components of care not identified in the original FCS guiding principles include: responsiveness to needs and mental health; effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling. CONCLUSIONS: This article identifies components of healthcare that families find helpful and desirable.Implications for RehabilitationFamily-centred service (FCS) is an established approach for delivering services in children's rehabilitation and healthcare.However, parents continue to experiences aspects of care that are not family-centred.Parents of children with disabilities identified components of care that they want from healthcare services.New components of care that go beyond what was identified in the original measure of FCS (MPOC) include: effective communication (vs information giving); practical support (in addition to emotional and informational support); and availability and scheduling.

Children with Disabilities in Canada during the COVID-19 Pandemic: An Analysis of COVID-19 Policies through a Disability Rights Lens.

Children with disabilities were especially vulnerable during the COVID-19 pandemic, and policies designed to mitigate its effects were limited in addressing their needs. We analyzed Canadian policies related to children with disabilities and their families during the COVID-19 pandemic to identify the extent to which these policies aligned with the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) and responded to their mental health needs by conducting a systematic collection of Canadian provincial/territorial policies produced during the pandemic, building a categorization dictionary based on the UN CRPD, using text mining, and thematic analysis to identify policies' alignment with the UN CRPD and mental health supports. Mental health was addressed as a factor of importance in many policy documents, but specific interventions to promote or treat mental health were scarce. Most public health policies and recommendations are related to educational settings, demonstrating how public health for children with disabilities relies on education and community that may be out of the healthcare system and unavailable during extended periods of the pandemic. Policies often acknowledged the challenges faced by children with disabilities and their families but offered few mitigation strategies with limited considerations for human rights protection.

Co-development of the ENVISAGE-Families programme for parents of children with disabilities: Reflections on a parent-researcher partnership.

INTRODUCTION: In childhood disability research, the involvement of families is essential for optimal outcomes for all participants. ENVISAGE (ENabling VISions And Growing Expectations)-Families is a programme comprising five online workshops for parents of children with neurodevelopmental disorders. The workshops aim to introduce parents to strengths-based perspectives on health and development. The research is based on an integrated Knowledge Translation (iKT) approach, in which knowledge users are involved throughout the research process. This article is co-authored by the ENVISAGE health service researchers (N = 9) and parent partners (N = 3) to describe the process through which we co-developed and implemented the workshops. METHODS: Collaborative auto-ethnography methods, based on a combination of interviews, qualitative surveys, and discussions held to complete the Guidance for Reporting Involvement of Patients and Public-2 tool, were used to describe the co-design process, the benefits gained, and lessons learned. FINDINGS: Parents (n = 118) were involved in developing and implementing the ENVISAGE workshops across the different phases, as partners, collaborators, or participants. Three parents were involved as investigators throughout. We identify seven key ingredients that we believe are necessary for a successful parent-researcher working relationship: (i) consistent communication; (ii) clear roles and expectations; (iii) onboarding and feedback; (iv) flexibility; (v) understanding; (vi) self-reflection; and (vii) funding. CONCLUSION: Patient and family engagement in research is a rapidly growing area of scholarship with new knowledge and tools added every year. As our team embarks on new collaborative studies, we incorporate this knowledge as well as the practical experience we gain from working together.

Informing the development of the Canadian Neurodiversity Platform: What is important to parents of children with neurodevelopmental disabilities?

BACKGROUND: A crowd-sourced Canadian platform that collects information across neurodevelopmental disabilities (NDDs) can (1) facilitate knowledge mobilization; (2) provide epidemiological data that can benefit knowledge, treatment, and advocacy; and (3) inform policy and resource allocation decisions. We obtained input from parents of children with NDDs about relevance and feasibility of questionnaire items as a first step to inform questionnaire development of a stakeholder-driven, national platform for data collection on children with NDDs. METHODS: A parent of a teenager with NDDs was a research partner on the project. Through four focus groups and using a guided discussion consensus process, 16 participants provided feedback on whether questionnaire items from existing instruments related to function and disability were feasible for parents to complete and important to include in the platform. Data were analysed using content analysis. RESULTS: Participants (1) indicated that questions about medical history, general health, body functioning, self-care, access to resources, and outcomes (e.g., quality of life) are important to include in the platform and are feasible for self-completion; (2) provided various suggestions for the questionnaire ranging from additional items to include, using non-medical language, and keeping completion time from 20 to 30 min; (3) identified incentives and knowing the purpose of the platform as strong motivators to platform participation; (4) spoke about the challenges of their caregiver experience including impact of caregiving on themselves and barriers to accessing services; and (5) highlighted the isolation experienced by their children. CONCLUSION: Through the focus groups, parent stakeholders contributed to questionnaire development and shared their caregiver experiences. Obtaining feedback from youths with NDDs and healthcare providers on the questionnaire is a next step to validating findings. Stakeholder engagement is fundamental to developing a platform that will inform research that is relevant to the needs of children with NDDs and their families.

ENabling VISions and Growing Expectations (ENVISAGE): Parent reviewers' perspectives of a co-designed program to support parents raising a child with an early-onset neurodevelopmental disability.

AIMS: This study reports parents' perspectives of, ENVISAGE: ENabling VISions And Growing Expectations. ENVISAGE - co-designed by parents and researchers - is an early intervention program for parents raising children with neurodisability. METHODS AND PROCEDURES: Using an integrated Knowledge Translation approach, this feasibility study explored parents' perspectives of the comprehensibility, acceptability, and usability of ENVISAGE workshops. Participants were Australian and Canadian parents of children with neurodisabilities, ≥12 months post-diagnosis, who independently reviewed ENVISAGE workshops using an online learning platform. Parents completed study-specific 5-point Likert-scaled surveys about individual workshops. Following this, qualitative interviews about their perceptions of ENVISAGE were conducted. Survey data were analysed descriptively, and interviews analysed inductively using interpretive description. OUTCOMES AND RESULTS: Fifteen parents completed surveys, of whom 11 participated in interviews. Workshops were reported to be understandable, relevant, and meaningful to families. ENVISAGE was judged to empower parents through enhancing knowledge and skills to communicate, collaborate and connect with others. Pragmatic recommendations were offered to improve accessibility of ENVISAGE. CONCLUSIONS AND IMPLICATIONS: ENVISAGE workshops address key issues and concerns of parents of children with neurodisability in a way that was perceived as empowering. Involving parents as reviewers enabled refinement of the workshops prior to the pilot study.

Building a culture of engagement at a research centre for childhood disability.

BACKGROUND: Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. METHODS: This study is based on ethnographic research methodology and combines elements of organizational ethnography, interviews, and collaborative auto-ethnography with parent partners, researchers, staff, and trainees. RESULTS: Since the inception of CanChild Centre for Childhood Disability Research at McMaster University in 1989, parents have been involved in research studies. Over time, this involvement evolved from being consulted on research studies to undertaking decision-making roles as partners and most recently as co-principal investigators. A growing infrastructure fosters a community of engagement that goes beyond the individual research study, and often beyond CanChild. This infrastructure consists of training, knowledge mobilization and social networking. In addition, the "softer" building blocks of CanChild's culture of engagement are an openness to learning from others, a commitment to relationship building, and a drive to grow and improve. These values are espoused by the leadership and are instilled in the next generation of researchers to inform both research and clinical work. While some challenges should be acknowledged when researchers and family partners work together on research studies, we identify a number of strategies that we have used in our studies to foster authentic and meaningful family-researcher partnerships. CONCLUSION: Engaging patients and families as partners in research constitutes a culture shift in health research, whereby studies about patients and families are carried out with them. Developing a community of engagement that transcends an individual research study is a step towards creating a culture of research that is truly shaped by the people about whom the research is being done.

More and more patients and family members are getting involved in health research studies as partners. However we do not know much about what happens after the research study ends. This article looks at how parents have been involved in research studies at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada. CanChild researchers, staff, students and parents were asked about their experiences of working together on research studies. One of the researchers then pooled together all of these stories, shared them with everyone to get their feedback, and wrote the initial draft of this article. All the people interviewed were invited to read the article and to add their thoughts and opinions until everyone was satisfied with the final product. Our shared stories show that a lot has changed since CanChild was established in 1989. At first, researchers consulted with parents when they were doing a study. Now, many parents are partners and co-principal investigators on research studies. CanChild has also developed opportunities for parents and researchers to get training in patient-family engagement and to network with each other outside of research studies. Researchers, staff, students and parents talked about what makes research partnerships successful, including: being open to learning from each other; taking the time to get to know each other as people; and always trying to do better. They also shared some of the challenges that come up on research studies and suggested strategies for working through them.

Don't tell me, show me: Reactions from those with lived experience to the 2020 revised IASP definition of pain.

In 2020, the International Association for the Study of Pain (IASP) revised the definition of pain, providing an update to IASP's original definition in place since 1979. The origins of the field of pediatric pain, born in part in the 1980s from the advocacy of Jill Lawson, mother to Jeffrey Lawson who experienced gross inadequacies in pain care as a premature infant, emphasize the critical need to listen to and act with the voice of people living with pain and their families and caregivers. Furthermore, the field of pediatric pain emerged in the mid-1980s marking this revised definition of pain as the first opportunity within which the experience and science of pain in childhood has been considered. This invited commentary offers two lived experience reactions to the revised IASP definition of pain, from the perspective of one's own experience with pain during childhood and as parents and family members. Together, they highlight that the value of a revised definition must be judged on its ability to directly benefit children experiencing pain and their families. Their skeptical hope reflects their lived experience backed by empirical evidence demonstrating continued inequities and inadequacies in preventing and managing pediatric pain. We must mobilize together to ensure change in culture, knowledge, and behavior. With the combined efforts of researchers, healthcare professionals, and policymakers, in partnership with diverse people with lived experience, we can ensure that more effective action is taken to rapidly improve pain for children and their families.

Reconceptualizing the Family to Improve Inclusion in Childhood Disability Research and Practice.

The World Health Organization's International Classification of Functioning, Disability and Health recognizes that environmental factors impact well-being and life participation for children with disabilities. A primary environment in which children grow and learn is the family. The importance of family has long been recognized in family-centered practice and family-centered research. Although family-centered services and research have been critically explored, the concept of family has received less critical attention in rehabilitation literature. The family construct is due for an updated conceptualization with careful consideration of the implications for childhood disability rehabilitation practice and research. Interrogating the family construct asks questions such as: who is included as a part of the family? Which family structures are prioritized and valued? What is the potential harm when some families are ignored or underrepresented in childhood disability practice and research? What implications could a modern rethinking of the concept of family have on the future of childhood rehabilitation practice and research? This perspective article raises these critical questions from the authors' perspectives as parents of children with disabilities, child focused rehabilitation professionals, and researchers that focus on service delivery in children's rehabilitation and family engagement in research. A critical reflection is presented, focused on how the construct of family affects children's rehabilitation practice and research, integrating concepts of equity, inclusion and human rights. Practical suggestions for children's rehabilitation service providers and researchers are provided to aid in inclusive practices, critical reflection, and advocacy.

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability.

BACKGROUND: Efforts to involve parents and families in all aspects of research, from initiating the question through to dissemination and knowledge exchange, are increasing. While social media as a method for health communication has shown numerous benefits, including increasing accessibility, interactions with others, and access to health care information, little work has been published on the use of social media to enhance research partnerships. OBJECTIVE: Our objective was to describe the development and evaluation of a Web-based research advisory community, hosted on Facebook and connecting a diverse group of parents of special needs children with researchers at CanChild Centre for Childhood Disability Research. The goal of this community is to work together and exchange knowledge in order to improve research and the lives of children and their families. METHODS: The Web-based Parents Participating in Research (PPR) advisory community was a secret Facebook group launched in June 2014 and run by 2 parent moderators who worked in consultation with CanChild. We evaluated its success using Facebook statistics of engagement and activity (eg, number of posts, number of comments) between June 2014 and April 2015, and a Web-based survey of members. RESULTS: The PPR community had 96 participants (2 parent moderators, 13 researchers, and 81 family members) as of April 1, 2015. Over 9 months, 432 original posts were made: 155 (35.9%) by moderators, 197 (45.6%) by parents, and 80 (18.5%) by researchers. Posts had a median of 3 likes (range 0-24) and 4 comments (range 0-113). Members, rather than moderators, generated 64% (277/432) of posts. The survey had a 51% response rate (49/96 members), with 40 (82%) being parent members and 9 (18%) being researchers. The initial purpose of the group was to be an advisory to CanChild, and 76% (28/37) of parents and all the researchers (9/9) identified having an impact on childhood disability research as their reason for participating. A total of 58% (23/40) of parents and 56% (5/9) of researchers indicated they felt safe to share sensitive or personal information. While researchers shared evidence-based resources and consulted with families to get guidance on specific issues, there was an unexpected benefit of gaining an understanding of what issues were important to families in their daily lives. Parents felt a sense of belonging to this community where they could share their stories but also wanted more researcher participation and clarity on the purpose of the group. CONCLUSIONS: The PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most.