Putting weight-related conversations into practice: Lessons learned from implementing a knowledge translation casebook in a disability context.

BACKGROUND: Due to reported challenges experienced by healthcare providers (HCPs) when having weight-related conversations with children with disabilities and their families, a knowledge translation (KT) casebook was developed, providing key communication principles with supportive resources. Our aim was to explore how the KT casebook could be implemented into a disability context. Study objectives were to develop and integrate needs-based implementation supports to help foster the uptake of the KT casebook communication principles. METHODS: A sample of nurses, physicians, occupational therapists and physical therapists were recruited from a Canadian paediatric rehabilitation hospital. Informed by the Theoretical Domains Framework, group interviews were conducted with participants to understand barriers to having weight-related conversations in their context. Implementation strategies were developed to deliver the KT casebook content that addressed these identified barriers, which included an education workshop, simulations, printed materials, and a huddle and email strategy. Participant experiences with the implementation supports were captured through workshop evaluations, pre-post surveys and qualitative interviews. Post-implementation interviews were analysed using descriptive content analysis. RESULTS: Ten HCPs implemented the KT casebook principles over 6 months. Participants reported that the workshop provided a clear understanding of the KT casebook content. While HCPs appreciated the breadth of the KT casebook, they found the abbreviated printed educational materials more convenient. Strategies developed to address participants' need for a sense of community and opportunities to learn from each other did not achieve their aim. Increased confidence in integrating the KT casebook principles into practice was not demonstrated, due, in part, to having few opportunities to practice. This was partly because of the increase in competing clinical demands at the onset of the COVID-19 pandemic. CONCLUSIONS: Despite positive feedback on the product itself, changes in the organisational and environmental context limited the success of the implementation plan. Monitoring and adapting implementation processes in response to unanticipated changes is critical to the success of implementation efforts.

'Our time is precious': An exploration of parental feeding behaviours for boys with Duchenne muscular dystrophy.

INTRODUCTION: Due to the increased risk of obesity for boys with Duchenne muscular dystrophy (DMD), recent guidelines recommend that dietary intake is carefully managed. Parents play an important role in the development of their child's eating behaviours and patterns. However, despite what is known about the increased risk of obesity for children with DMD, little is known about parental feeding behaviours in this population. The objective of this study was to qualitatively explore the experiences of parents of children with DMD around their child's weight management and understand what influences their feeding behaviours. METHODS: This paper reports a secondary data analysis. Semi-structured, individual interviews were conducted and analysed using qualitative description. RESULTS: Thirteen parents were interviewed for the study. Three themes were developed: (1) parent responses to healthcare provider interactions, (2) mixed emotions contributing to feeding approach and (3) variable parenting feeding styles. Within the third theme, two subthemes arose including (1) control and preoccupation and (2) striking a balance. CONCLUSION: Given the potential impact of higher weights on the progression of DMD, it is important that healthcare providers explore feeding behaviours with families. However, it is essential that healthcare providers consider the impact of these conversations on parents, as well as the broader issues that may place additional pressure on the lives of families.

Severe obesity and global developmental delay in preschool children: Findings from a Canadian Paediatric Surveillance Program study.

Background: The co-presentation of severe obesity (SO) and global developmental delay (GDD) in Canadian preschool children has not been examined. However, SO and GDD may require syndromic diagnoses and unique management considerations. Objectives: To determine (1) minimum incidence; (2) age of onset and risk factors; and (3) health care utilization for co-presenting SO and GDD. Methods: Through the Canadian Paediatric Surveillance Program (CPSP), a monthly form was distributed to participants from February 2018 to January 2020 asking for reports of new cases of SO and GDD among children ≤5 years of age. We performed descriptive statistics for quantitative questions and qualitative content analysis for open-ended questions. Results: Forty-seven cases (64% male; 51% white; mean age: 3.5 ± 1.2 years) were included. Age of first weight concern was 2.5 ± 1.3 years and age of GDD diagnosis was 2.7 ± 1.4 years. Minimum incidence of SO and GDD was 3.3 cases per 100,000 for ≤5 years of age per year. Identified problems included school and/or behavioural problems (n = 17; 36%), snoring (n = 14; 30%), and asthma/recurrent wheeze (n = 10; 21%). Mothers of 32% of cases (n = 15) had obesity and 21% of cases (n = 10) received neonatal intensive care. Microarray was ordered for 57% (n = 27) of children. A variety of clinicians and services were accessed. As reported by CPSP participants, challenges faced by families and health service access were barriers to care. Conclusion: Children with SO and GDD have multiple comorbidities, and require early identification and referral to appropriate services. These cases may also benefit from additional testing to rule out known genetic obesity syndromes.

Parenting styles and dimensions in parents of children with developmental disabilities.

Parenting influences child development. There is limited research, however, related to parenting children who have developmental disabilities. The aims of this study were to: (1) describe the parenting styles and dimensions of parents of children with developmental disabilities and (2) assess differences in parenting styles and dimensions among parents of children with autism spectrum disorder (ASD), Down syndrome (DS), and spina bifida (SB). Secondary data analysis was conducted from a nationwide cross-sectional study of 496 parents of children aged 5-16 years with ASD (n = 180), DS (n = 156), or SB (n = 160). Parent scores indicated high use of the authoritative parenting style and associated parenting dimensions, mid-to-low use of the permissive parenting style, and low use of the authoritarian parenting style and associated dimensions. Variation in parenting styles and dimensions among parents was primarily related to the child's diagnosis and family income. An unanticipated but positive finding was that parents with lower family incomes had significantly higher scores for the authoritative parenting style. Results from this study can inform future research that might inform clinical practice.

Exploring illness identity among children and youth living with cancer: A narrative review.

BACKGROUND: Children and youth with cancer may find it challenging to integrate illness into their pre-existing identity-a phenomenon known as illness identity. In this critical narrative review, we explored illness identity among children and youth with cancer. METHODS: Three academic databases were searched. Twenty-two articles were included in this review and each underwent thematic analysis. RESULTS: Cancer has both positive and negative influences on the identities of children and youth. Illness identity is expressed creatively through various communicative outlets. Further, external processes such as social support may influence cancer identity. A few studies cited cancer as a hindrance to adult identity development. CONCLUSIONS: Cancer has a profound impact on identity formation among children and youth. Many normative assumptions about time, identity, and child and youth development underlie the existing literature. Future researchers may adopt a critical lens to be inclusive of diverse identity experiences among children and youth with cancer.

Are healthcare providers and young people talking about sexuality? A scoping review to characterize conversations and identify barriers.

BACKGROUND: Conversations about sexuality with healthcare providers (HCPs) are critical to youth's positive development, including youth with disabilities or chronic conditions. Yet, little is known about the characteristics of sexuality conversations with youth in healthcare settings. This scoping review examined the nature and extent of sexuality conversations between HCPs and youth (with and without a disability or chronic condition) and aimed to identify barriers to these conversations. METHODS: Scoping review methodology using rapid review principles was employed. INCLUSION CRITERIA: studies published between 2009 and 2019; examined conversations between HCPs and youth aged 21 and below; addressed sexuality; and took place in a healthcare setting. Study characteristics were described and clustered into thematic groups. RESULTS: Of the 5543 identified, 32 articles were included. Articles addressed (i) the content of sexuality conversations, (ii) prevalence of sexuality conversations and (iii) barriers to discussing sexuality. The content of sexuality discussions was largely biologically focused. The prevalence of sexuality discussions varied, with some discrepancy between youth-reported and HCP-reported rates. Seven barriers (three personal and four systemic) were identified. Youth with disabilities or chronic conditions were vastly under-represented in the published literature. CONCLUSIONS: This study highlighted that sexuality is an underexplored topic between HCPs and young people, especially young people with disabilities and/or chronic conditions. Given the importance of sexuality to young people's mental and physical health, research addressing barriers to these discussions and development of evidence-informed resources to support HCPs and youth to engage in conversations about sexuality should be a priority.

Exploring the Shared Meaning of Social Inclusion to Children with and without Disabilities.

AIMS: Perspectives of children with and without disabilities on social inclusion are seldom sought in the childhood disability literature, impeding the ability to provide inclusive experiences for all children. This qualitative study explored meaningful aspects of social inclusion from the perspectives of children with and without disabilities in an inclusive recreation program. METHODS: Drawing on the interpretive paradigm and subjectivity epistemology, this study adopted a generic qualitative methodological approach. Seventeen children with and without disabilities involved in the same inclusive recreation program participated in two semi-structured interviews. These interviews were analyzed using an inductive thematic analysis. RESULTS: Three key themes emerged and were interpreted as dimensions of social inclusion: contextual, intrapersonal, and interpersonal. The contextual dimension included the freedom to choose activities and receiving equal attention from staff. The intrapersonal dimension was characterized by psychological safety and group fellowship. The interpersonal dimension included having positive authentic interactions and giving/receiving help. CONCLUSIONS: These findings may influence future program development and implementation to promote inclusive experiences for all children.

Careful conversations: an educational video to support parents in communicating about weight with their children.

BACKGROUND: Parents may struggle to initiate healthy weight-related conversations with their children. Educational videos may be an effective tool for improving parents' knowledge and self-efficacy on this topic. The aim of this pilot study was to develop an educational video to assist parents in weight-related conversations with their child, and to assess changes in parents' self-efficacy on this topic. METHODS: Video development was based on a scoping review and semi-structured interviews with parents. Respondent demographics and user satisfaction were assessed at pre- and post- video, and 4-6 months later. Self-efficacy scores were compared between parent groups based on weight concerns over time. RESULTS: Fifty-seven parents participated in the video questionnaires, and 40 repeated measures 4-6 months later. Significant improvements in self-efficacy in "raising the issue of weight" and "answering questions or concerns" were found after watching the video (p ≤ 0.002) compared to baseline, and scores 4-6 months post baseline remained slightly elevated, but non-significant. Parents with concerns about their child being overweight had significantly lower perceived self-efficacy scores compared to parents with no concerns about their child's weight (p = 0.031). The video was found to be positively received and of relevance to parents across a number of different domains. CONCLUSION(S): Preliminary findings suggest an educational video about initiating weight-related conversations may be an effective tool for increasing parents' perceived self-efficacy in the short term. Further work is needed to validate findings in a randomized controlled trial, and with diverse parent populations. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03664492 . Registered 10 September 2018 - Retrospectively registered.

Communication tools used in childhood obesity discussions: A scoping review.

BACKGROUND: Paediatric healthcare professionals (HCPs) play an essential role in the prevention and management of childhood obesity; however, many report considerable barriers to having weight-related conversations, including a lack of confidence. One way to address this is to use communication tools, such as charts, pictures and handouts. This scoping review's objective was to identify the extent and nature of available tools in the published literature that aimed to support HCPs in having positive weight-related conversations with children and families. METHODS: CINAHL, Medline and PsycINFO were systematically searched from 2005 to 2019. Articles were selected based on (a) use of an identified communication tool; (b) tool designed for use with children between the ages of 2 and 18 and/or their parents; (c) tool designed to be used in weight-related discussions; and (d) tool designed to be used by HCPs in a formal healthcare setting. RESULTS: Of the 3,596 articles yielded after deduplication, 13 unique communication tools were identified. Tools were grouped according to three themes: (a) help communicate child's weight status; (b) provide a communication framework for HCPs; and (c) actively engage children and/or parents in discussions. Many of the tools were recently developed and had not been evaluated in clinical practice. The clinical utility of each tool was evaluated. CONCLUSION: This study identified 13 communication tools HCPs could use when having weight-related discussions. However, there was a lack of evaluation and clinical utility. Only one tool had high clinical utility, and not all tools would be recommended for use in practice.

Putting positive weight-related conversations into practice: The pilot implementation of a Knowledge Translation Casebook.

BACKGROUND: Healthcare professionals (HCPs) play an important role in discussing weight with children and their parents but report barriers such as lack of training and supports. These barriers are especially prevalent within specialized populations such as children with autism spectrum disorder (ASD). To address this, a Knowledge Translation Casebook on positive weight-related conversations was developed by a research team at a Canadian paediatric hospital. The purpose of the current pre-implementation pilot study was to explore initial acceptability and adoption of the Casebook into clinical settings. METHODS: An interactive, multimodal education workshop was created to provide HCPs with knowledge and training on how to have positive weight-related conversations with children and parents. Two workshops were conducted using the same curriculum but delivered either in-person or online. Participants were drawn from a team of clinicians at a teaching hospital whose care focuses on medication management for clients with ASD and clinicians participating in a distance learning programme on best practice care for clients with ASD. Participants completed a demographic questionnaire, workshop evaluation, and a pre-workshop and post-workshop questionnaire. Descriptive statistics were used to summarize demographic, questionnaire, and survey data. Answers to open-ended questions were analysed using content analysis. RESULTS: Participants agreed that the workshop gave them a clear understanding of the Casebook's content and helped them easily navigate the Casebook. Based on raw scores, self-efficacy in having weight-related conversations seemed to increase from pre-to post-workshop, but reported weight-management clinical practice scores did not change over time. However, the small sample precluded in-depth statistical analysis. CONCLUSIONS: The Casebook was acceptable and appeared to increase self-efficacy about having weight-related conversations with children with ASD and parents. More robust implementation strategies are needed to foster the uptake of best practices in weight-related conversations into clinical practice.

Residential immersive life skills programs for youth with disabilities: a case study of youth developmental trajectories of personal growth and caregiver perspectives.

BACKGROUND: Professional support in pediatric and rehabilitation care environments has been recommended as a means to build youth competence in life skills during their transition to adulthood. Life skills are the essential psychosocial competencies and interpersonal skills needed to manage one's life. Residential immersive life skills (RILS) programs offer youth with physical disabilities enriched learning environments to acquire these skills. This study explored trajectories of personal growth in life skills and positive psychological outcomes among youth participating in a RILS program and related caregiver perspectives. METHOD: Delivered by a multidisciplinary healthcare team, The Independence Program is an intensive summer program housed in a college residence that provides realistic experiences of living away from home for small groups of youth between 17 and 21 years of age who have congenital and/or acquired physical disabilities. Using a longitudinal case study and qualitative descriptive design, four youth and their parents/guardians participated in semi-structured interviews prior to, and then 1 month, and 3 to 4 months after the program. A conventional content analysis yielded chronological narratives for each youth and caregiver dyad of their experiences, perceptions and outcomes over time. These narratives were further summarized using a 'line of development' perspective to describe individual developmental trajectories of personal growth. RESULTS: All four of the youth returned from the program with positive reports about the new life skills acquired and new behaviours they engaged in. These positive reports generally continued post-program, albeit with differing trajectories unique to each youth and varying levels of congruence with their caregivers' readiness to support, accommodate and facilitate these changes. Caregivers differed in their capacity to shift in their parenting role to support consolidation of youth life skill competencies following program participation. CONCLUSIONS: RILS programs can be transformative. Varied youth trajectories identified significant personal growth through enhanced self-determination, self-efficacy and self-advocacy. Congruence in youth and caregiver perceptions of post-program changes was an important transactional factor. Professional support addressing caregiver needs may be beneficial to facilitate developmentally appropriate shifts in parenting roles. This shift is central to a model of shared management whereby adolescents take on greater responsibility for their own care and life choices.

Residential immersive life skills programs for youth with disabilities: Experiences of parents and shifts in parenting approaches.

INTRODUCTION: Residential immersive life skills (RILS) programs are designed for youth with disabilities and facilitate the development of adaptive behaviors for life skills required to navigate adulthood. This study explored parents' experiences of the RILS program journey, shifts in parenting approaches, and the implications of those shifts. METHODS: This study draws on twenty-three qualitative interviews that were conducted with nine parents of youth who attended RILS programs in Ontario, Canada. Three rounds of interviews were conducted at three different time points: Pre-program, 3 months post-program, and 12 months post-program. Data were analyzed using a constructivist grounded theory approach. RESULTS: The interviews captured parents' experiences of the RILS program journey and how their parenting changed as a result. Three overarching themes emerged: (1) Anticipation of RILS programs served as a catalyst for experiencing positive and negative tensions in parenting; (2) Parenting shifted following RILS programs; and (3) Where parenting shifts were limited, challenges for youth arose and reduced youth future growth. CONCLUSION: Parenting approaches can shift as a result of youth attending RILS programs. These shifts can create complex and challenging implications for parents as they seek to further encourage youths' development. This study offers an understanding of the implications of parenting during youths' developmental transition of adolescence to adulthood, and offers recommendations to further support parents in sustaining youth development of life skills during this developmental transition.

Connected for health: Examining the use of a health-related social media platform for children with chronic medical conditions.

BACKGROUND: Children with chronic medical conditions often experience limited opportunities for social experiences due to frequent hospitalizations and medical appointments. Computer technology can provide valuable opportunities for social inclusion through online communities. However, moderation has been shown to be an important component of safe and successful use. This paper explores the potential of a social media platform technology, Upopolis, to promote social connection and health-related management for children with chronic medical conditions, as well as the role of the coordinators who support children's use. METHODS: This study conducted qualitative in-depth, semi-structured telephone interviews with hospital-based child life specialists across Canada who acted as coordinators for Upopolis. Thematic analysis was employed on verbatim interview transcripts. RESULTS: Seven Upopolis coordinators (n = 7 female) from across Canada participated in six telephone interviews. Four themes were identified: First, Upopolis offered opportunities for connection (social and emotional) through receiving and giving support to others in similar situations. Second, Upopolis was considered safe and reliable for younger children (under 12) within the broader social media landscape. Third, Upopolis was a helpful resource for children to learn about medical diagnoses and procedures, as well as for expressing their experiences and reducing isolation. Fourth, participants identified that time, misuse of technology, and technical problems were challenges to the successful coordination of Upopolis. CONCLUSIONS: Children with chronic medical conditions were reported to use Upopolis to develop a greater social community. Specialized websites such as Upopolis have the potential to offer a safe online social networking opportunity where children can discuss what is happening to them, compared with other mainstream social media platforms. Given the increase in technology use in health and high usage of social media among children generally, these data can potentially inform the development and implementation of other specialist health-related online platforms for children with chronic medical conditions.

Fostering positive weight-related conversations between health care professionals, children, and families: Development of a knowledge translation Casebook and evaluation protocol.

BACKGROUND: Health care professionals (HCPs) must communicate with children and families about weight management in a sensitive and nonstigmatizing manner. However, HCPs receive little training in weight-related communication and have requested resources, but these are scarce. This article details the development process of a knowledge translation (KT) Casebook and outlines the proposed protocol for its implementation and evaluation. METHODS: Guided by the knowledge-to-action cycle, a KT Casebook aimed at HCPs integrated findings from a comprehensive scoping review with experiential and contextual evidence gathered through stakeholder workshops to provide guidance to HCPs communicating with children and families around weight-related issues. It was structured around five questions: (a) Who should participate in weight-related discussions? (b) When and how should the topic of weight be broached? (c) What terminology should be used? (d) How can HCPs enhance family engagement in weight-related discussions? (e) What specific communication techniques have been recommended? Checklists, evidence summaries, case studies, sentence starters, simulations, and other resources were clustered under each question. A dissemination strategy was developed using KT best practices and a pilot evaluation protocol designed. RESULTS: The Casebook was launched in November 2017 and has been presented at pediatric rehabilitation and obesity conferences. A communication strategy targeted multidisciplinary experts and organizations with weight management within their scope of practice. These efforts have resulted in 2,497 downloads across five countries to date. CONCLUSIONS: A practical and engaging KT Casebook was created to help foster positive weight-related conversations between HCPs, children, and their families. A pilot implementation study examining the impact of the Casebook on clinical practice will provide critical information for embedding the Casebook in a range of health care settings.

Exploring the Role of Physiotherapists in the Care of Children with Autism Spectrum Disorder.

Aims: Children with autism spectrum disorder (ASD) are less likely to participate in physical activity than their age related peers, and it has been suggested that physiotherapists (PT) could potentially facilitate their participation. Currently, no research has examined PTs' potential role in enhancing physical activity (PA) participation. The purpose of this qualitative study was to examine PTs experiences and perspectives of working with children with ASD, and to explore potential directions for PTs to potentially increase PA. Methods: Ten pediatric PTs in Canada were interviewed, and data were analyzed using thematic analysis. Results: Three themes were identified: the role of PT, perceived lack of expertise, confidence and training, and structural and systemic barriers. The accounts highlight the social and institutional complexity and constraints in PTs potential promotion of PA for children with ASD. Participants supported a primarily consultative role whereby PTs could educate and partner with parents, teachers, and community service providers to enhance gross motor development and individualize PA needs. Conclusions: These findings indicate how PTs might be involved in enhancing PA among children with ASD.

A Scoping Review of Inclusive Out-of-School Time Physical Activity Programs for Children and Youth With Physical Disabilities.

The objective of this study was to comprehensively evaluate inclusive out-of-school time physical activity programs for children/youth with physical disabilities. A search of the published literature was conducted and augmented by international expertise. A quality appraisal was conducted; only studies with quality ratings ≥60% informed our best practice recommendations. Seventeen studies were included using qualitative (n = 9), quantitative (n = 5), or mixed (n = 3) designs. Programs had a diversity of age groups, group sizes, and durations. Most programs were recreational level, involving both genders. Rehabilitation staff were the most common leaders. Outcomes focused on social skills/relationships, physical skill development, and psychological well-being, with overall positive effects shown in these areas. The best practice recommendations are consistent with an abilities-based approach emphasizing common group goals and interests; cooperative activities; mastery-oriented, individualized instruction; and developmentally appropriate, challenging activities. Results indicate that inclusive out-of-school time physical activity programs are important for positive psychosocial and physical skill development of children/youth with physical disabilities.

How and why should we engage parents as co-researchers in health research? A scoping review of current practices.

BACKGROUND: The importance of engaging parents in health research as co-researchers is gaining growing recognition. While a number of benefits of involving parents as co-researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co-researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co-researchers; and (iii) identify gaps in the literature. METHODS: A scoping literature review was conducted using established methodology. Four research databases and one large grey literature database were searched, in addition to hand-searching relevant journals. Articles meeting specific inclusion criteria were retrieved and data extracted. Common characteristics were identified and summarized. RESULTS: Ten articles were included in the review, assessed as having low-to-moderate quality. Parent co-researchers were engaged in the planning, design, data collection, analysis and dissemination aspects of research. Structural enablers included reimbursement and childcare. Benefits of engaging parent co-researchers included enhancing the relevance of research to the target population, maximizing research participation and parent empowerment. Challenges included resource usage, wide-ranging experiences, lack of role clarity and power differences between parent co-researchers and researchers. Evaluation of parent co-researcher engagement was heterogeneous and lacked rigour. CONCLUSIONS: A robust evidence base is currently lacking in how to effectively engage parent co-researchers. However, the review offers some insights into specific components that may form the basis of future research to inform the development of best practice guidelines.

Optimizing life success through residential immersive life skills programs for youth with disabilities: study protocol of a mixed-methods, prospective, comparative cohort study.

BACKGROUND: Young people with disabilities often lag behind their typically developing peers in the achievement of adult roles, which has been attributed to a lack of opportunities to develop critical life skills. Residential Immersive Life Skills (RILS) programs provide situated learning opportunities to develop life skills alongside peers and away from home in real-world settings. Retrospective research suggests that attending RILS programs is a transformative experience that empowers youth, provides parental hope, and increases service provider expertise. However, prospective, comparative research is needed to determine longer term benefits of these programs on youth life trajectories, in addition to exploring the program features and participant experiences that optimize program success. This protocol describes a 5-year, multi-site prospective study examining the effects of RILS programs for youth with disabilities. METHODS: The study involves RILS programs at three sites in Ontario, Canada. Cohorts of treatment and control groups will receive the study protocol over 3 successive years. Thirty English-speaking participants aged 14-21 years with a child-onset disability and the cognitive capacity to engage in goal setting will be recruited every year for 3 years in the following groups: youth attending a RILS program (Group A); a deferred RILS control group of youth (Group B); a control group of youth attending a non-residential life skills program (Group C); and a control group matched on age, diagnoses, and cognitive capacity not receiving any life skills intervention (Group D). All participants will complete measures of self-determination and self-efficacy at four time points. Program opportunities and experiences will also be assessed in-the-moment at the RILS programs. Qualitative interviews pre-program and at 3- and 12-months post-program will be undertaken with a sub-sample of youth and parents to explore their expectations and experiences. DISCUSSION: This study will address key gaps in the literature pertaining to the long-term impact of RILS programs and the role of immersive environments in shaping youth outcomes and experiences. Our research program aims to uncover transferable processes and essential features by which RILS programs have their effects on attitudes, cognitions, and behaviour. TRIAL REGISTRATION: The trial registration number on clinicaltrials.gov is NCT02753452 (retrospectively registered 26 April 2016). Trial sponsor: Holland Bloorview Kids Rehabilitation Hospital.

Seeing is believing? A mixed-methods study exploring the quality and perceived trustworthiness of online information about chronic conditions aimed at children and young people.

The numbers of children and young people with chronic conditions are increasing. While their information needs may vary, providing health care information can have considerable benefits, including better emotional health, less distress during treatments, and greater satisfaction with medical care. The Internet is increasingly being used to communicate health-related information to children about a range of chronic conditions. However, the quality of such websites is underexplored. Thus, the objectives of this study were to evaluate the reliability and quality of online information for children about chronic conditions using a standardized evaluation tool, and to explore children's and young people's perceptions of quality and trustworthiness regarding online health information. The study consisted of two phases. In Phase 1, websites about common pediatric chronic conditions aimed at children and containing treatment or management options were identified and the quality assessment tool DISCERN was completed. Test-retest and interrater reliability were calculated. In Phase 2, two focus groups with laptop computers were conducted with children and young people with a chronic condition to explore their perceptions of trustworthiness of online health information. In Phase 1, 165 websites were identified and 100 met the criteria and were assessed. The mean DISCERN score of all sites was 48.16 out of 75 (SD = 7.97, range 28-71, min 15 to max 75). Quality scores varied widely across the sample. The internal consistency and interrater reliability scores were both lower than previously reported in studies using the DISCERN to assess information for adults. In Phase 2, two focus groups with a total of six participants aged 11-23 years revealed a relative lack of concern about the quality and trustworthiness of online health information. Older participants reported judging the source and authorship of websites, but other participants did not question the source of the information they found online. Although personal websites were perceived to be less reliable than those from well-known medical institutions, they were still valued by many of the participants. Overall, there were relatively few websites about pediatric chronic conditions aimed at children, with variable quality and reliability. However, DISCERN's use with pediatric websites across a broad spectrum of developmental stages is limited. Children and young people demonstrated a need for more guidance around assessing trustworthiness of online information. A more appropriate quality assessment tool is warranted, which could usefully be employed by health care professionals, children, and parents.

Utilizing an Environmental Framework to Explore the Acceptability of a Health Promotion Program for Youth with Disabilities.

This study explored the acceptability of Children and Teens in Charge of their Health (CATCH), a program for children with spina bifida or cerebral palsy to enhance their physical activity and diet. Qualitative interviews were conducted with children (n = 6) and their parents (n = 6) who participated in CATCH. Analysis used an environmental systems framework. Microsystem factors impacting acceptability of the program were: Children's motivations for change, their age, and their physical health. Mesosystem factors were: Use of virtual coaching and the relationship between coach and child. Macrosystem factors (e.g. Covid-19), did not impact acceptability, but affected some goal attainment strategies. CATCH was broadly acceptable to children and parents and shows promise as a health promotion program tailored to children with disabilities. An environmental systems framework can potentially help other health promotion programs enhance their acceptability and success.