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.
Cerebral Palsy , Health Promotion , Spinal Dysraphism , Humans , Health Promotion/methods , Adolescent , Male , Spinal Dysraphism/rehabilitation , Female , Child , Cerebral Palsy/rehabilitation , Exercise , Disabled Children/rehabilitation , COVID-19/prevention & control , Parents/psychology , Patient Acceptance of Health Care , Qualitative Research
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.
Pandemics , Translational Science, Biomedical , Humans , Child , Canada , Communication , Health Personnel
Physicians are unsatisfied with their training in the care of patients with obesity. Physical examination is a key component of care, and modifications to techniques are often necessary for patients with obesity. To determine learning needs, we examined medical students' perceived comfort and competency in conducting physical examinations on patients with obesity. This mixed-methods study of Canadian medical students used a questionnaire and semi-structured focus groups to assess medical students' perceived comfort and competence in examining patients with obesity. Participants included 175 Canadian medical students. A minority of medical students felt comfortable (42%) or competent (14%) examining patients with obesity. Physical exam challenges included modifying exam manoeuvres, interpreting findings and communicating sensitively around weight. Lack of early exposure to patients with obesity, minimal instruction by preceptors and a lack of curricular focus on obesity were felt to be barriers to improving these skills. Students perceived their lack of confidence as negatively impacting their ability to manage patients with obesity and more training in this area was desired to prevent disparities in care. Medical students feel that adequate training on how to perform an obesity-specific physical examination is lacking. Developing curricula and including formal teaching around these key competencies within medical education is essential.
Students, Medical , Humans , Needs Assessment , Clinical Competence , Canada , Obesity/diagnosis , Physical Examination
PURPOSE: 1) To explore how children with spina bifida (SB) and their parents understand bodyweight, health and weight management; and 2) To identify what services and supports children with SB and their families feel are most appropriate to help them manage their health and weight. METHODS: The study used interpretive description within a qualitative design. Participants were children with SB (aged 10-18) attending two Canadian SB clinics and their parents. Data were collected through individual interviews and analyzed using inductive thematic analysis. RESULTS: Five children and five parents participated in the study. Children and parents had a weight-centric approach to health, which was related to the child's mobility. Weight was considered to be under individual control and mostly through diet. Trusting relationships between healthcare providers, children and families were important to discuss weight in a non-judgemental manner. Children should be involved in setting meaningful and achievable weight management goals. CONCLUSION: Greater knowledge of how children with SB and their families understand weight and health offers opportunities for non-judgemental discussions about their needs and wishes. Helping families to place more value on health over weight may reduce feelings of stigma, while allowing children to develop some autonomy over health-related decisions.
Children with spina bifida and their parents do not recognise the complexity of factors contributing to weight regulation.Weight regulation was often seen as the child's responsibility, which could lead to feelings of guilt and shame through internalised weight stigmaHealthcare professionals working with children with spina bifida should explore their perceptions, beliefs, and behaviours related to weight, health and mobility to ensure they are not causing themselves physical and/or psychological harm.
PURPOSE: To examine changes in self-determination associated with youth participation in residential immersive life skills (RILS) programs. METHOD: In this prospective mixed methods study, the Arc's Self-Determination Scale was administered pre- and post-program, and at 3- and 12-month follow-ups, to 27 RILS youth and a comparison group of 11 youth enrolled in a non-residential life skills program. Ten RILS youth were interviewed 3 and 12 months post-program, with content analysis used to explore changes in autonomy, self-realization, and psychological empowerment. RESULTS: RILS youth showed statistically significant increases in autonomy immediately after the program, which were maintained one year later, whereas the comparison group displayed increased autonomy only at 3 months post-program. Qualitatively, RILS youth emphasized changes in behavioral autonomy and psychological empowerment 3 months post-program, whereas at one year there was greater emphasis on changes in self-realization. Using a triangulation protocol, the mixed methods data were interpreted as showing agreement regarding changes in autonomy due to intervention, partial agreement regarding self-realization, and dissonance regarding psychological empowerment. CONCLUSIONS: RILS programs can enhance the autonomy of youth with physical disabilities and contribute to their sense of confidence and understanding of themselves as they move forward in life.
The findings suggest the importance of the immersive, away-from-home component of residential immersive life skills programs in enhancing the autonomy of youth with disabilitiesYouth reported changes in their level of autonomy after attending residential immersive life skills programs, as well as feeling more confident in living on their ownResidential immersive life skills programs can contribute to youth's understanding of themselves as they transition to adulthood.
Background: Children with disabilities are twice as likely to have overweight/obesity than their typically developing peers. Higher weights in these individuals may compound challenges already experienced with their disability, including mobility and activities of daily living. However, children with disabilities often find it challenging accessing weight management care. It is therefore important to understand the experiences and needs of the health care professionals (HCPs) who work in specialized pediatric weight management clinics about providing weight-related care to children with disabilities. Methods: Employing an interpretive description approach, purposeful sampling was used to recruit 17 HCP participants working in pediatric weight management settings in Canada. Qualitative semistructured interviews were conducted online or via telephone. All interview recordings were transcribed and a reflexive thematic analysis approach was used to develop themes from the data. Results: Four themes were developed: (1) infrequent referrals leads to a lack of experience with children with disabilities; (2) adapting group-based clinics can be challenging; (3) perceived lack of disability-specific knowledge causes moral distress; and (4) disability-specific training and greater interdisciplinary collaboration are desired. Conclusions: This work identifies the urgent need for more evidence-based, specialized, weight-related treatment options for children with disabilities, as well as more support for HCPs working in existing programs.
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.
PURPOSE: Rehabilitation research on wellness promotion for children and youth with disabilities is limited and tends to narrowly focus on physical aspects of health. An overarching sense of wellness includes multiple, overlapping dimensions (e.g., physical, social, emotional, occupational). This study's main objectives were to explore what wellness means for young people with disabilities, and what contributes to their sense of wellness. METHODS: A qualitative design involving World Café-style focus groups was used to explore the perspectives of youth with disabilities (14-25 years old, n = 3), parents (n = 6) and healthcare providers (n = 10) on how wellness is understood and addressed at a Canadian children's rehabilitation hospital. Themes were identified through an inductive analysis of focus group transcripts and notes written by participants and research team members. RESULTS: Having a variety of relationships and social connections, meaningful activity opportunities, becoming as independent as possible, and having stable medical health contributed to wellness for young people with disabilities. CONCLUSIONS: Rehabilitation care can promote wellness by co-creating personalized care pathways across multiple wellness dimensions with young people with disabilities and their families, focusing on strengths rather than deficits, and improving access to a variety of activities and communities.IMPLICATIONS FOR REHABILITATIONRehabilitation professionals in children's rehabilitation have unique, ongoing opportunities to promote and support wellness with young people with disabilities and their families.Rehabilitation professionals can embed personalized, strengths-focused wellness pathways across multiple dimensions into the care of children with disabilities.Helping children and families address barriers to meaningful activities and promoting social connections can foster an overarching sense of wellness.
Disabled Persons , Adolescent , Humans , Child , Young Adult , Adult , Canada , Disabled Persons/rehabilitation , Health Promotion , Focus Groups , Emotions
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.
Muscular Dystrophy, Duchenne , Male , Child , Humans , Muscular Dystrophy, Duchenne/psychology , Parents/psychology , Parenting , Obesity , Feeding Behavior
Youth with disabilities often experience limited opportunities to acquire the life skills needed in adulthood. As a result, life skills programs are provided to support life skill development; however, little is known about the active ingredients of these programs, and the sustainability of their effects over time. Accordingly, the aim was to synthesize the findings of a five-year study examining the opportunities, experiences, and outcomes of residential immersive life skills (RILS) programs for youth with disabilities. A multi-method prospective study was conducted involving 38 youth ages 14 to 21 with disabilities (e.g., cerebral palsy, spina bifida) attending one of three RILS programs held over three summers. Program opportunities, youth experiences, and outcomes (self-determination, self-efficacy) were assessed pre- and post-program and 3 and 12 months post-program using standardized questionnaires. Pre-program, 3-month, and 12-month follow-up interviews were held with youth and parents. This research synthesis integrates the findings from nine published articles that used a variety of qualitative, quantitative, and mixed methods approaches. RILS programs provided rich opportunities for youth to experience meaningful social connections, psychological engagement, and choice and control, which were associated with changes over time in multiple domains related to personal growth and preparation for adulthood. Overall, the findings point to the transformative power of RILS programs to propel new life directions for some youth. By creating opportunities for meaningful, challenging, and supportive experiences fulfilling basic needs for relatedness, competency, and autonomy, RILS programs motivate youth to grow and change. More study is needed of program opportunities and capacity-enhancing experiences, as well as longitudinal studies of youth life outcomes. RILS programs have appreciable value in preparing youth for the transition to adult roles and responsibilities.
Cerebral Palsy , Disabled Persons , Adult , Adolescent , Humans , Young Adult , Prospective Studies , Disabled Persons/psychology , Personal Autonomy , Self Efficacy
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.
Autism Spectrum Disorder , Parenting , Child , Cross-Sectional Studies , Developmental Disabilities , Humans , Parent-Child Relations , Parents , Surveys and Questionnaires
PURPOSE: The purpose of this study was to explore how parents support the health behaviours of their child with a disability, and their motivations for registering their child in a health promotion program for children with physical and/or intellectual disabilities. METHODS: Using a descriptive qualitative design, semi-structured face-to-face interviews were conducted with individual parents (n = 8) and one group (n = 3) to explore their experiences of health promotion for their child with a disability. Data were analyzed using thematic analysis to identify themes and patterns to develop an understanding of parental perspectives. RESULTS: Three themes were identified in the analysis of parents' experiences supporting their children in health behaviours and registering them in a disability health promotion program: (1) Parents struggle to meet all of their child's health promotion needs; (2) Parents recognize the social components of healthy behaviours; and (3) Health promotion opportunities tailored for children with disabilities are limited. These themes were not mutually exclusive and had overlapping factors that influenced parental experiences. CONCLUSION: Parents experience many challenges supporting the health behaviours of their children with disabilities. This study reinforces the need for accessible, developmentally appropriate, social health promotion programs for children with disabilities.IMPLICATIONS FOR REHABILITATIONChildren with disabilities frequently demonstrate significantly higher sedentary behaviours, lower rates of physical activity and consumption of high-fat foods than their typically developing peers.Promoting healthy behaviours such as healthy eating and physical activity among children with disabilities and their families is therefore crucial to the child's physical and psychosocial wellbeing.Parents of children with disabilities have sufficient health literacy and knowledge but report a lack of appropriate opportunities and strategies to support their child in developing healthy behaviours.Parents need increased availability and accessibility of socially inclusive programs that promote healthy behaviours for children of all physical and cognitive abilities.
Health Promotion , Parents , Child , Exercise , Family , Humans , Motivation , Parents/psychology , Qualitative Research
PURPOSE: This qualitative study aimed to explore the experiences of parents supporting their child with Autism Spectrum Disorder (ASD) and overweight or obesity (OW/OB), including their weight management support needs. METHODS: Interview transcripts were analysed using inductive thematic analysis. Nine parents (n = 9 mothers) of ten children with ASD (7 males, 3 females) participated in individual semi-structured interviews. RESULTS: The three themes developed were: (1) Our journey to obtain weight management support; (2) I need real-world solutions; and (3) The what, who and how of our weight management needs. Parents reported being proactive in seeking weight management support for their child but were disappointed with the services offered. Resources were not tailored to the child's complex nutrition and behavioural issues or their abilities and functioning. A multidisciplinary approach that integrated both disability and weight management expertise was desired, but not experienced. A range of formal and informal programs were recommended. CONCLUSION: This study provides a call to action for supports that ensure children with ASD and OW/OB receive integrated, individualised support to maximise their health and wellness.Implications for rehabilitationChildren with autism spectrum disorder (ASD) are at high risk of developing overweight or obesity.The weight management support needs of parents of children with ASD and overweight or obesity are not being met.Support must be tailored to the child's needs, which are often complex.Health services that integrate expertise in both disability and weight management are needed for children with ASD and their families.
Autism Spectrum Disorder , Autism Spectrum Disorder/therapy , Child , Female , Health Personnel , Humans , Male , Obesity/therapy , Overweight/therapy , Parents
PURPOSE: Inclusive recreation programs can have individual and community impacts for children with and without disabilities. However, studies that explore the impact of such programs on children's attitudes are mixed. The purpose of this study was to explore the perspectives of children with and without disabilities on the individual impact of an inclusive recreation program. MATERIAL AND METHOD: This study adopted a generic qualitative methodology. Interviews were conducted with participants between the ages of eight and 18 enrolled in the same program and each participant was interviewed twice. Inductive thematic analysis was used to analyze results. RESULTS: 17 participants were recruited for this study, which included nine children without disabilities (CWODs) and eight children with disabilities (CWDs). This study revealed five themes: a) CWODs have limited exposure to people with disabilities; b) CWODs and CWDs' hopes of change; c) CWODs learned how to interact with people with disabilities; d) CWODs reported greater perceived similarity in functional ability and hobbies/interests between themselves and CWDs, and; e) CWODs become more comfortable being around people with disabilities. CONCLUSIONS: This study helps broaden understandings of how inclusive experiences in recreation settings impact children with and without disability.IMPLICATIONS FOR REHABILITATIONChildren without disabilities can develop more positive attitudes toward children with disabilities in affective and cognitive domains after participating in an inclusive recreation program.Incorporating inclusive language into program design and implementation may promote positive attitudes toward diversity in recreation settings.Children without disabilities would benefit from more opportunities to interact with children with disabilities in unstructured, inclusive or integrated recreation settings.
Disabled Children , Recreation , Social Inclusion , Child , Disabled Children/psychology , Humans
PURPOSE: This study explored the meaning of the after-hours social experiences of youth with disabilities in a residential life skills program. After-hours experiences occur outside of formal program hours, primarily in the evenings. METHOD: Five youth with cerebral palsy (three females) participated in an exploratory photo elicitation study while attending one of two residential immersive life skills programs. Following an auto-driven photo elicitation method, youth took photos of their choosing and then were interviewed about photos they elected to share. Interview data were analyzed thematically. RESULTS: Themes illustrated meaningful social experiences and their benefits. Two themes described the after-hours social experiences of most importance to youth: learning about strengths from working together, and having meaningful individual and group conversations. Three themes reflected benefits reported by youth: learning about differences among people, gaining new perspectives and new knowledge about oneself, and developing friendships and a sense of "family." CONCLUSIONS: The findings illuminate the benefits of after-hours social experiences for youth who may have had little opportunity previously to informally interact with other youth with disabilities. The findings highlight the importance of the immersive, group nature of a residential, away-from-home youth transition program, particularly the value added by the after-hours program component.IMPLICATIONS FOR REHABILITATIONThe findings support the value of an over-night residential aspect for life skills programs for youth with disabilities.Residential immersive life skills programs provide opportunities for youth to discuss common experiences and shared challenges, leading to the formation of social bonds.Residential immersive life skills programs provide opportunities for youth to interact with peers in the absence of adults, and to make choices about how to use their personal time.It is important to intentionally design transition programs to provide opportunities for after-hours social experiences, including working together and socializing.
Cerebral Palsy , Disabled Persons , Adolescent , Adult , Female , Humans
Minimal attention has been placed on supporting the mental health needs of youth with disabilities. Due to a dearth of research on best practices in mental health communication with youth with disabilities, the aim of the scoping review was to identify existing peer-reviewed evidence regarding mental health communication for the general youth population in clinical settings. Three electronic databases were searched. Inclusion criteria were: 1) published in English between 2009 and 2019; 2) children and youth and/or their parents/caregivers; 3) addressed communication-based mental health practices; 4) based in pediatric health care settings. Seven articles were included. Promoting autonomy and engagement, building collaboration and trust, and supplementing conversations with alternative communication approaches were identified as important for having mental health conversations. While implications can be drawn, more work is needed for clinicians to have a rigorous evidence base to draw upon when having these conversations with youth with disabilities.
Disabled Persons , Mental Health , Adolescent , Caregivers , Child , Communication , Humans , Parents
PURPOSE: It is important to directly engage children and adolescents with disabilities (CAWD) in health promotion research to ensure their health needs are met. Arts-based research methods may help CAWD better express their ideas; photo-elicitation is one such technique, using self-captured photographs to enhance verbal descriptions of complex concepts. This review 1) summarizes findings from health promotion studies using photo-elicitation with CAWD; 2) explores benefits and challenges of using photo-elicitation; 3) identifies recommended photo-elicitation practices. MATERIALS AND METHODS: A scoping review was conducted using rapid review principles. Four health and social science databases were searched (2009-2019) using terms related to children, adolescents, disability, and photo-elicitation. Articles meeting inclusion criteria were summarized and analyzed thematically. RESULTS: Eight studies met inclusion criteria and explored a range of health promotion topics. Benefits of photo-elicitation included the ability to mediate communication and direct participants' focus. Challenges included difficulty operating a camera and understanding instructions about photograph subject matter. Four recommended practices were identified: 1) brainstorming photograph ideas; 2) photograph-taking training; 3) having CAWD select photographs for discussion; 4) limiting the number of photographs CAWD could capture. CONCLUSIONS: Integrating practices to support CAWD in using photo-elicitation can help researchers more fully understand their health experiences.Implications for RehabilitationThere is a need to directly engage children and adolescents with disabilities to express themselves in health promotion research.The arts-based method of photo-elicitation may help children and adolescents with disabilities convey how they view and experience health.Children and adolescents with disabilities may need supports, including camera training, to participate in photo-elicitation.
Disabled Children , Adolescent , Child , Communication , Health Promotion , Humans
PURPOSE: The quality and length of life for boys with Duchenne muscular dystrophy (DMD) has improved due to medical advancements, but obesity has emerged as and may pose a risk to their physical health. Clinical guidelines recommend attention to weight management, but healthcare professionals (HCPs) find implementing them in clinical care challenging. Little information is available about the perspectives of children with DMD and their families around weight management. This study explored the key priorities of children with DMD, their parents, and HCPs who treat them, around weight management. METHODS: Qualitative, individual, semi-structured interviews were conducted and analyzed using a qualitative descriptive approach. RESULTS: Participants included parents of children with DMD (n = 13), children with DMD (n = 10), and HCPs (n = 14). Theme one: "Competing priorities between healthcare providers, parents, and boys" contained two sub-themes: (i) Body mechanics and function; and (ii) Psychosocial well-being. Theme two: "The realities of living with Duchenne's Muscular Dystrophy," with subthemes: (i) Striving for normality; (ii) The trajectory of DMD; (iii) The labour associated with DMD. CONCLUSION: HCPs, parents, and boys have diverging worldviews around weight management, highlighting the importance of integrating the priorities of families into care, even when not aligned with guideline recommendations.IMPLICATIONS FOR REHABILITATIONHCPs must understand the competing priorities in the lives of children with DMD and their families when discussing weight, weight management, and lifestyle changes.Quality of life and living a "normal" life are prioritized by children and families over the surveillance and time demands of lifestyle routines recommended by clinicians for weight management.Weight management recommendations should be based upon the individual needs and priorities of the family.
Muscular Dystrophy, Duchenne , Quality of Life , Male , Humans , Child , Quality of Life/psychology , Muscular Dystrophy, Duchenne/therapy , Muscular Dystrophy, Duchenne/psychology , Health Personnel , Parents/psychology , Delivery of Health Care
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.
Communication , Sexuality , Adolescent , Delivery of Health Care , Health Personnel , Humans
Health care professionals (HCPs) play a critical role in helping to address weight-related issues with pediatric patients, yet often feel ill-equipped to discuss/manage this complex and sensitive health issue. Using the five As ("Ask, Assess, Advise, Agree, and Assist") of Pediatric Obesity Management, we created a series of educational videos and evaluated the content, quality (acceptability, engagement), and impact of these videos on HCPs' self-efficacy, knowledge, and change in practice when addressing weight-related issues with pediatric patients and their families using questionnaires. HCPs (n = 65) participated in a baseline assessment and 4-6 month follow-up (n = 54). Knowledge and self-efficacy increased post-video for the majority of participants. At follow-up, most HCPs reported a change in their practice attributable to viewing the videos, and their self-efficacy ratings improved over time for the majority of questions asked. Most participants rated aspects of each of the videos highly. Preliminary findings suggest that an evidence-based educational toolkit of videos, based on the 5As framework, may lead to changes in self-reported behaviors among HCPs, and sustained improvements in their self-efficacy in addressing weight-related topics with children and their families. (Clinical Trial Number NCT04126291).
Obesity Management , Pediatric Obesity , Child , Health Personnel , Humans , Pediatric Obesity/prevention & control , Self Efficacy , Surveys and Questionnaires
