Family-centred care interventions for children with chronic conditions: A scoping review.

INTRODUCTION: Children with chronic conditions have greater health care needs than the general paediatric population but may not receive care that centres their needs and preferences as identified by their families. Clinicians and researchers are interested in developing interventions to improve family-centred care need information about the characteristics of existing interventions, their development and the domains of family-centred care that they address. We conducted a scoping review that aimed to identify and characterize recent family-centred interventions designed to improve experiences with care for children with chronic conditions. METHODS: We searched Medline, Embase, PsycInfo and Cochrane databases, and grey literature sources for relevant articles or documents published between 1 January 2019 and 11 August 2020 (databases) or 7-20 October 2020 (grey literature). Primary studies with ≥10 participants, clinical practice guidelines and theoretical articles describing family-centred interventions that aimed to improve experiences with care for children with chronic conditions were eligible. Following citation and full-text screening by two reviewers working independently, we charted data covering study characteristics and interventions from eligible reports and synthesized interventions by domains of family-centred care. RESULTS: Our search identified 2882 citations, from which 63 articles describing 61 unique interventions met the eligibility criteria and were included in this review. The most common study designs were quasiexperimental studies (n = 18), randomized controlled trials (n = 11) and qualitative and mixed-methods studies (n = 9 each). The most frequently addressed domains of family-centred care were communication and information provision (n = 45), family involvement in care (n = 37) and access to care (n = 30). CONCLUSION: This review, which identified 61 unique interventions aimed at improving family-centred care for children with chronic conditions across a range of settings, is a concrete resource for researchers, health care providers and administrators interested in improving care for this high-needs population. PATIENT OR PUBLIC CONTRIBUTION: This study was co-developed with three patient partner co-investigators, all of whom are individuals with lived experiences of rare chronic diseases as parents and/or patients and have prior experience in patient engagement in research (I. J., N. P., M. S.). These patient partner co-investigators contributed to this study at all stages, from conceptualization to dissemination.

Photovoice and Instagram as Strategies for Youth Engagement in Disaster Risk Reduction.

Community involvement is essential for an all-of-society approach to disaster risk reduction. This requires innovative consultation methods, particularly with youth and during pandemic restrictions. This article outlines methods used for a Photovoice project where we brought together student co-researchers from multiple levels (high school, undergraduate, and graduate health sciences) to explore the topic of youth engagement in disaster risk reduction. Over a two-year period, our team used Photovoice as an arts-based participatory method to collaborate with members of our EnRiCH Youth Research Team. We adapted the protocol to continue our project during the COVID-19 pandemic and presented our work in a Photovoice exhibition using Instagram. This article was written from the perspectives of high school and university students on the project. Our hybrid Photovoice protocol facilitated participation through the pandemic, including a virtual presentation at an international conference and online consultation with the Canadian Red Cross.

"It's Like Youth are Talking Into a Microphone That is not Plugged in": Engaging Youth in Disaster Risk Reduction Through Photovoice.

Over the last decade, youth have been acknowledged as agents of change in the fight against climate change, and more recently in disaster risk reduction. However, there is a need for improved opportunities for youth to participate and have their voices heard in both contexts. Our Photovoice study explores youth perceptions of the capability of youth to participate in disaster risk reduction and climate change action. We conducted six focus groups from February 2019 to June 2019 with four teenaged youth participants in Ottawa, Canada, hosting two virtual Photovoice exhibitions in 2021. Our results highlight 11 themes across a variety of topics including youth as assets, youth-adult partnerships, political action on consumerism, social media, education, accessibility, and art as knowledge translation. We provide four calls to action, centering youth participation and leadership across all of them, to guide stakeholders in how to improve disaster risk reduction and climate change initiatives by meaningfully including youth as stakeholders.

Sex differences in the presentation, treatment and outcomes of patients with homozygous familial hypercholesterolemia.

BACKGROUND: Homozygous familial hypercholesterolemia (HoFH) is a rare, autosomal semi-dominant lipid metabolism disorder characterized by extremely high low-density lipoprotein cholesterol (LDL-C) levels and premature cardiovascular disease. The objective of this study was to investigate sex-differences in the treatment and outcomes of patients with HoFH. METHODS: We examined clinical characteristics, lipid-lowering therapy (LLT), and cardiovascular events using descriptive statistics of patients in the Canadian HoFH registry. Major adverse cardiovascular events (MACE) were defined as the composite of cardiovascular death, non-fatal myocardial infarction, and stroke. Sex differences between continuous and categorical variables were analyzed using Mann-Whitney U test and Fisher's Exact test, respectively. RESULTS: This study included 48 patients (27 (56%) female). The median age at diagnosis in females was 14.0 (interquartile range (IQR) 9.0-30.0) and in males was 8.0 (IQR 2.0-23.0) (p = 0.07). Baseline clinical characteristics were comparable between both sexes. The median baseline LDL-C was 12.7 mmol/L (10.0-18.3) in females and 15.3 (10.5-20.0) in males (p = 0.51). Follow up LDL-C levels were 7.6 mmol/L (IQR 4.8-11.0) in females and 6.3 (IQR 4.6-7.5) in males (p = 0.1). Most patients were taking 3 or more LLTs, with comparable proportions in both sexes (p = 0.26). Apheresis was similar in both sexes, 14 (51.8%) vs. 10 (47.6%) (p = 0.2). Over a mean of 10 years of follow-up, MACE occurred in 3 females (11.1%) and 4 males (19.1%) (p = 0.2). CONCLUSION: Lipid levels and treatment were similar between sexes. MACE occurred in similar proportions between sexes, indicating that HoFH offsets the inherently lower cardiovascular risk in pre-menopausal females. Further investigation into sex-differences in HoFH in larger sample sizes is warranted.

Insights on the COVID-19 pandemic: Youth engagement through Photovoice.

Youth engagement in disaster risk reduction is a growing area of research, practice and policy. The COVID-19 pandemic highlighted the need for improved opportunities for youth to participate and have their voices heard. Our Photovoice study explores experiences, perceptions, and insights of youth regarding the COVID-19 pandemic, while providing an opportunity for youth to participate in disaster risk reduction and contribute to resilient communities. We conducted nine focus groups from February 2019 to August 2020 with four teenaged youth; we analyzed the data using reflexive thematic analysis and hosted two virtual Photovoice exhibitions. Our results explore youth experiences of public health measures, impacts of the pandemic, pandemic magnification of social inequities, and the power of youth to create change. We provide six calls to action, focusing on a holistic, upstream, all-of-society approach for stakeholders to collaborate with youth in creating change on complex social justice issues to support COVID-19 recovery.

Families' healthcare experiences for children with inherited metabolic diseases: protocol for a mixed methods cohort study.

INTRODUCTION: Children with inherited metabolic diseases (IMDs) often have complex and intensive healthcare needs and their families face challenges in receiving high-quality, family centred health services. Improvement in care requires complex interventions involving multiple components and stakeholders, customised to specific care contexts. This study aims to comprehensively understand the healthcare experiences of children with IMDs and their families across Canada. METHODS AND ANALYSIS: A two-stage explanatory sequential mixed methods design will be used. Stage 1: quantitative data on healthcare networks and encounter experiences will be collected from 100 parent/guardians through a care map, 2 baseline questionnaires and 17 weekly diaries over 5-7 months. Care networks will be analysed using social network analysis. Relationships between demographic or clinical variables and ratings of healthcare experiences across a range of family centred care dimensions will be analysed using generalised linear regression. Other quantitative data related to family experiences and healthcare experiences will be summarised descriptively. Ongoing analysis of quantitative data and purposive, maximum variation sampling will inform sample selection for stage 2: a subset of stage 1 participants will participate in one-on-one videoconference interviews to elaborate on the quantitative data regarding care networks and healthcare experiences. Interview data will be analysed thematically. Qualitative and quantitative data will be merged during analysis to arrive at an enhanced understanding of care experiences. Quantitative and qualitative data will be combined and presented narratively using a weaving approach (jointly on a theme-by-theme basis) and visually in a side-by-side joint display. ETHICS AND DISSEMINATION: The study protocol and procedures were approved by the Children's Hospital of Eastern Ontario's Research Ethics Board, the University of Ottawa Research Ethics Board and the research ethics boards of each participating study centre. Findings will be published in peer-reviewed journals and presented at scientific conferences.

"I believe this team will change how society views youth in disasters": the EnRiCH Youth Research Team: a youth-led community-based disaster risk reduction program in Ottawa, Canada.

SETTING: The Sendai Framework for Disaster Risk Reduction promotes an "all-of-society" approach to disaster risk reduction (DRR). Since 2013, the EnRiCH Research Lab has implemented a community-based, participatory program to promote youth development and engagement in DRR in Ottawa-Gatineau. The EnRiCH Youth Research Team used an existing community education program called the Enrichment Mini-Course Program as a framework to engage youth in DRR. We aim to share the implementation process and lessons learned from this innovative "all-of-society" approach to DRR. INTERVENTION: The EnRiCH Youth Research Team provides high school and university students with a platform to be heard on disaster and climate change issues. Youth are given opportunities to design and lead knowledge dissemination projects intended to educate members of the community about disaster prevention and preparedness. Students have opportunities to connect with academics, governmental and non-governmental organizations, and public health practitioners to share their ideas on youth participation in DRR in Canada. OUTCOMES: To date, this public health intervention has produced DRR training modules that can be used as curriculum support by teachers, a children's book on earthquake preparedness, an educational video about youth participation in DRR, and several conference presentations. Members of the team have become well versed in disaster preparedness strategies. IMPLICATIONS: This program has demonstrated that youth can contribute to DRR through knowledge mobilization, and support public education about disaster preparedness. Offering this opportunity at a grassroots level can support participation by youth by allowing flexibility in design and adaptation to individual environmental and social contexts.

RéSUMé: CONTEXTE: Le Cadre d'action de Sendai pour la réduction des risques de catastrophe promeut une approche « de la société dans son ensemble ¼ en matière de réduction des risques de catastrophe (RRC). Depuis 2013, le laboratoire de recherche EnRiCH a mis en place un programme participatif communautaire visant à promouvoir la participation et épanouissement des jeunes à la RRC dans la région d'Ottawa-Gatineau. L'équipe de recherche Jeunesse EnRiCH a utilisé un programme d'éducation communautaire déjà existant, le programme de mini-cours d'enrichissement, comme cadre pour engager les jeunes dans la RRC et les sensibiliser à ce sujet. Notre objectif est de partager le processus de mise en œuvre et les leçons tirées de cette approche innovante « de la société dans son ensemble ¼ en RRC. INTERVENTION: L'équipe de recherche Jeunesse EnRiCH fournit aux étudiants du secondaire et universitaires une plateforme pour se faire entendre sur les sujets des catastrophes et des changements climatiques. Les jeunes ont la possibilité de concevoir et de diriger des projets de diffusion des connaissances destinés à éduquer les membres de la communauté en matière de prévention et de préparation aux catastrophes. Ils ont la possibilité de rencontrer des universitaires, des organismes gouvernementaux et non-gouvernementaux et des praticiens de la santé publique pour partager leurs idées sur la participation des jeunes à la RRC au Canada. RéSULTATS: À ce jour, cette intervention de santé publique a produit des modules de formation à la RCC pouvant être utilisés comme matériel éducatif par les enseignants, un livre pour enfants sur la préparation aux tremblements de terre, une vidéo éducative sur la participation des jeunes à la RRC, et plusieurs présentations de conférence. Les membres de l'équipe connaissent bien les stratégies de préparation aux catastrophes. IMPLICATIONS: Ce programme a démontré que les jeunes peuvent contribuer à la RRC par la mobilisation des connaissances et soutenir l'éducation du public en matière de préparation aux catastrophes. Offrir cette opportunité au niveau local peut encourager la participation des jeunes en permettant de la flexibilité dans la mise en oeuvre et une adaptation aux contextes environnementaux et sociaux individuels.