Evidence-Informed Recommendations for Community-Based Organizations Developing Physical Activity Information Targeting Families of Children and Youth With Disabilities.

Parents of children and youth with disabilities (CYD) have expressed unique physical activity (PA) information needs. Community-based organizations (CBOs) require assistance to meet these needs. Guided by the Appraisal of Guidelines, Research and Evaluation II, this project established evidence-informed recommendations for developing PA information targeting families of CYD. This process involved a systematic scoping review to inform draft recommendations (k = 23), which were revised via a consensus meeting with researchers, knowledge users from CBOs, and families of CYD. Broader consultation with CBO knowledge users informed the final recommendations (k = 5) that fit within the following categories: (a) language and definitions, (b) program information, (c) benefits of PA, (d) barriers to PA, and (e) PA ideas and self-regulation tools. CBOs are encouraged to consider these recommendations when developing PA information for families of CYD. Future research will focus on the development of knowledge products to disseminate the recommendations to CBOs and support implementation.

Perceptions of Healthy Lifestyles Among Children With Complex Heart Disease and Their Caregivers.

BACKGROUND: Children with complex heart problems may be at higher risk for sedentary lifestyle morbidities than their healthy peers. This project examined perceptions, barriers, and supports that influence healthy active lifestyles among children with complex heart problems and their caregivers, to enable effective health and quality-of-life interventions. METHODS: Inductive thematic analysis was conducted of semi-structured guided discussions from 6 focus groups (young child [n = 2]; older child [n = 4]; parents of young child [n = 4]; parents of older child [n = 4]; pediatric cardiologist [n = 5]; pediatric cardiac nurse [n = 5]) and individual interviews with 7 parents, 5 parent/child dyads, 2 adults with complex heart problems, 6 pediatric cardiologists, 3 pediatric cardiac nurses, 4 pediatric cardiology mental health professionals, and 14 recreation professionals. RESULTS: Four interrelated themes were identified: (i) "It takes a village"-coordinated and collaborative interdisciplinary support; (ii) clear healthy lifestyle communication among children, families, and professionals is critically important; (iii) Ccreating supportive environments by building professional expertise; (iv) inspiring healthy lifestyles in the children's own environments. All groups identified a need to improve knowledge about childhood heart conditions among education and recreation professionals and to encourage effective communication between healthcare professionals and families. Participants indicated that these changes would support families, educators, and recreation professionals in engaging children with heart problems in healthy lifestyles in home, school, and community settings. CONCLUSIONS: Important healthy lifestyle barriers were identified within individuals and in their interactions. There is a profound need to enhance knowledge of childhood heart conditions and improve interactions among key stakeholders-children and families, educators, and recreation and healthcare professionals.

CONTEXTE: Les enfants atteints d'un trouble cardiaque complexe pourraient être exposés à un risque plus élevé d'états morbides associés à la sédentarité que leurs pairs en bonne santé. Notre projet visait à étudier auprès d'enfants atteints d'un trouble cardiaque complexe et de leurs aidants les perceptions, les obstacles et les mesures de soutien qui influent sur l'adoption d'un mode de vie actif sain, afin de mettre en place des interventions efficaces pour améliorer la santé et la qualité de vie de ces patients. MÉTHODOLOGIE: Nous avons mené une analyse thématique inductive comprenant des discussions dirigées semi-structurées auprès de six groupes (jeunes enfants [n = 2]; enfants plus âgés [n = 4]; parents de jeunes enfants [n = 4]; parents d'enfants plus âgés [n = 4]; cardiologues-pédiatres [n = 5]; infirmières en cardiologie pédiatrique [n = 5]) et des entrevues individuelles auprès de 7 parents, 5 dyades parent-enfant, 2 adultes atteints d'un trouble cardiaque complexe, 6 cardiologues-pédiatres, 3 infirmières en cardiologie pédiatrique, 4 professionnels de la santé mentale en cardiologie pédiatrique et 14 professionnels du loisir. RÉSULTATS: Nous avons dégagé quatre thèmes interreliés : i) « il faut tout un village ¼ ­ soutien interdisciplinaire coordonné et axé sur la collaboration; ii) communication claire de ce qu'est un mode de vie sain entre enfants, familles et professionnels (élément d'une importance cruciale); iii) création de milieux favorables par le développement des expertises professionnelles; iv) stimulation de l'adoption d'un mode de vie sain dans les milieux que fréquentent les enfants. Tous les groupes interrogés ont signalé la nécessité d'améliorer les connaissances des professionnels de l'éducation et du loisir quant aux problèmes cardiaques de l'enfance et d'encourager une communication efficace entre les professionnels de la santé et les familles. Les participants ont indiqué que de tels changements aideraient les familles, les enseignants et les professionnels du loisir à donner aux enfants atteints d'un trouble cardiaque la chance d'adopter un mode de vie sain à la maison, à l'école et dans la communauté. CONCLUSIONS: Des obstacles importants à l'adoption d'un mode de vie sain ont été cernés à l'échelle individuelle et sur le plan des interactions. Il existe un besoin profond de rehausser les connaissances en matière de troubles cardiaques de l'enfance et d'améliorer les interactions entre les principaux intervenants ­ les enfants et leurs familles, les enseignants et les professionnels de la santé et du loisir.

Developing patient resources to enable the exchange of healthy lifestyle information between clinicians and families of children with complex heart problems.

BACKGROUND: Healthy active lifestyles are critically important for children with complex heart problems (CHP) that affect heart structure, rhythm or function. They are at increased risk for morbidities such as atherosclerosis, obesity, anxiety and depression. Educating children with CHP and their families about the relevance of healthy lifestyles is an important part of clinical care. DESIGN: This study used a collaborative approach among six patients/family members and 22 health professionals to develop a series of knowledge-to-action tools suitable for counselling children with CHP and their families about their healthy lifestyle needs. METHODS: After development of the knowledge-to-action tools had been completed, one cardiologist and one research assistant implemented one or more of these new resources during each clinic visit as appropriate for each patient. Thirty-nine parents and eight children completed post-clinic interviews to explore their perceptions of the new resources. The nine resources developed included brochures and websites addressing physical activity with a heart condition, body contact restrictions, exercise test results, emotional health, finding community resources, encouragement for asking healthy lifestyle questions and a brief, in-clinic healthy lifestyle assessment. RESULTS: Families found the resources useful and helpful for clarifying their specific concerns. They also provided suggestions to improve the content and delivery of the resources so that they would be suitable for a variety of settings-schools, community and sports. CONCLUSION: Future research is required to evaluate the effectiveness of these resources for raising awareness and knowledge about healthy active lifestyles among children with CHP and the impact of these resources for changing healthy lifestyle behaviours.

Monitoring sol-to-gel transitions via fluorescence lifetime determination using viscosity sensitive fluorescent probes.

The sol-to-gel transition was monitored via the use of time-resolved recording of the fluorescence emission of viscosity-sensitive probes. Two dyes were chosen for the study, water-soluble DASPMI and a hydrophobic BODIPY, and steady-state, time-resolved and time-tagged fluorescence measurements were performed. These techniques, coupled with the probes different solubility, allowed complementary fluorescence lifetime and intensity data to be obtained from the dyes introduced into the matrix-forming mixture to produce sol-gel derived monoliths. Two different precursors were used as examples. A hydrogel was formed from a commercially available gellan gum (Gelrite), and a glass-like monolith was formed using tetraethyl orthosilicate. Changes in fluorescence lifetime could be related to those in the local viscosity sensed by the probe. The combination of this type of probe with time-resolved measurements is extremely useful in monitoring the microscopic changes that occur during the sol-to-gel transition within this important class of materials.