"Fat is really a four-letter word": Exploring weight-related communication best practices in children with and without disabilities and their caregivers.

BACKGROUND: Health care professionals play a critical role in preventing and managing childhood obesity, but the American Academy of Pediatrics recently stressed the importance of using sensitive and nonstigmatizing language when discussing weight with children and families. Although barriers to weight-related discussions are well known, there are few evidence-based recommendations around communication best practices. Disability populations in particular have previously been excluded from work in this area. The objectives were to present the findings of a recent scoping review to children with and without disabilities and their caregivers for their reactions; and to explore the experiences and perceptions of the children and their caregivers regarding weight-related communication best practices. METHODS: Focus group and individual interviews were conducted with 7-18-year olds with and without disabilities and their caregivers. The interview guide was created using findings from a recent scoping review of weight-related communication best practices. Inductive thematic analysis was employed. RESULTS: Eighteen children (9 boys; 7 children with disabilities) and 21 caregivers (17 mothers, 1 step-father, 3 other caregivers) participated in 8 focus group and 7 individual interviews. Preferred communication strategies were similar across those with and without disabilities, although caregivers of children with autism spectrum disorder endorsed more concrete approaches. Discussions emphasizing growth and health were preferred over weight and size. Strengths-based, solution-focused approaches for weight conversations were endorsed, although had not been widely experienced. CONCLUSION: Perceptions of weight-related communication were similar across stakeholder groups, regardless of children's disability or weight status. Participants generally agreed with the scoping review recommendations, suggesting that they apply broadly across different settings and populations; however, tailoring them to specific circumstances is critical. Empirical evaluations are still required to examine the influence of weight-related communication on clinically important outcomes, including behaviour change and family engagement in care.

The internet as a source of support for youth with chronic conditions: A qualitative study.

BACKGROUND: Adolescents living with chronic conditions often portray themselves as "healthy" online, yet use the Internet as one of their top sources of health information and social communication. There is a need to develop online support programs specific to adolescents with chronic conditions in order to provide a private space to discuss concerns. This paper endeavors to increase our understanding of the online support needs and wants of these adolescents and their interest in and preferences for an online support program. METHODS: A qualitative descriptive study using semistructured interviews was completed. Stratified purposive sampling was utilized to ensure a representative sample based on age and diagnosis. English speaking adolescents (aged 12-18 years) diagnosed with a chronic condition were recruited from clinic and inpatient areas across 3 paediatric hospitals in Canada. RESULTS: Thirty-three participants aged 15.3 ± 1.8 years (64% female) completed the study. The main topics identified were (a) the purpose of current online activity, (b) the benefits and challenges of existing online supports, and (c) a description of ideal online resources. The purpose of online activity was social networking, information, online gaming, and social support. When accessing health information online, participants prioritized websites that were easy to access and understand despite the trustworthiness of the site. The reported benefits and challenges varied across participants with many areas perceived as both a benefit and a challenge. The majority of participants were interested in participating in an online support program that included both accurate disease-related information and a community of other adolescents to provide social support. CONCLUSIONS: Adolescents with chronic conditions are interested in online support that encompasses health information and social support that is flexible and easy to navigate. Findings can be used to develop or adapt existing online support programs for adolescents with chronic conditions to help increase engagement and utilization.

Parents' early healthcare transition experiences with preterm and acutely ill infants: a scoping review.

BACKGROUND: Parents undergo multiple transitions following the birth of an ill infant: their infant's illness-health trajectory, neonatal intensive care unit hospitalization and transfers from one healthcare setting to another, while also transitioning to parenthood. The objective of this review was to map and synthesize evidence on the experiences and needs of parents of preterm or ill infants as they transition within and between healthcare settings following birth. METHODS: The scoping review followed Arskey and O'Malley's () framework, enhanced by Levac et al. (). Relevant studies were identified through a comprehensive search strategy of scientific and grey literature databases, online networks, Web of Science and citation lists of relevant articles. Inclusion criteria encompassed a focus on infants undergoing a healthcare transition, and the experiences and needs of parents during transition. Studies were appraised for design quality, and data relevant to parent experiences were extracted and underwent thematic analysis. RESULTS: A total of 7773 records were retrieved, 90 full texts reviewed and 11 articles synthesized that represented a total sample of 435 parents of preterm or ill infants. Parents reported on their experiences in response to their infant's transition within and between hospitals and across levels of neonatal intensive care unit, intermediate and community hospital care. Ten studies used qualitative research methods, while one employed quantitative survey methods. Four key themes were identified: that of parent distress throughout transition, parenting at a distance, sources of stress and sources of support. Parents' stress resulted from not being informed or involved in the transition decision, inadequate communication and perceived differences in cultures of care across healthcare settings. CONCLUSIONS: Opportunities to improve parents' early transition experiences include enhanced engagement, communication, information-sharing and shared decision-making between health care providers and parents. Future areas of research should focus on early transition interventions to advance parent capacity, confidence and closeness as the primary nurturer.

Communicating with children and families about obesity and weight-related topics: a scoping review of best practices.

BACKGROUND: Healthcare professionals have called for direction on how best to communicate about weight-related topics with children and families. Established scoping review methodology was used to answer the question: 'How can healthcare professionals best communicate with children and their families about obesity and weight-related topics?' METHODS: We searched four scientific databases, two grey literature repositories and 14 key journals (2005-2016). Inclusion criteria were (i) children up to and including 18 years of age and/or their parents; (ii) communication about healthy weight, overweight, obesity or healthy/active living; and (iii) healthcare setting. RESULTS: Thirty-two articles were included. Evidence-based best practices were largely absent from the literature, although the following guiding principles were identified: (i) include all stakeholders in discussions; (ii) raise the topic of weight and health early and regularly; (iii) use strengths-based language emphasizing health over weight; (iv) use collaborative goal-setting to engage children and parents and (v) augment discussions with appropriate tools and resources. Guidance on how to implement these principles and how to negotiate relevant contextual factors (e.g. age, culture and disability) is still needed. CONCLUSION: Despite agreement on a number of guiding principles, evidence-based weight-related communication best practices are lacking. Rigorous, empirical evaluations of communication approaches are urgently required, especially those that include children's perspectives.

Implementation of an inter-agency transition model for youth with spina bifida.

BACKGROUND: To address gaps in transfer of care and transition support, a paediatric hospital and adult community health care centre partnered to implement an inter-agency transition model for youth with spina bifida. Our objective was to understand the enablers and challenges experienced in the implementation of the model. METHODS: Using a descriptive, qualitative design, we conducted semi-structured interviews, in-person or over the phone, with 12 clinicians and nine key informants involved in implementing the spina bifida transition model. We recruited all 21 participants from an urban area of Ontario, Canada. RESULTS: Clinicians and key informants experienced several enablers and challenges in implementing the spina bifida transition model. Enablers included dedicated leadership, advocacy, funding, inter-agency partnerships, cross-appointed staff and gaps in co-ordinated care to connect youth to adult services. Challenges included gaps in the availability of adult specialty services, limited geographical catchment of adult services, limited engagement of front-line staff, gaps in communication and role clarity. CONCLUSIONS: Although the transition model has realized some initial successes, there are still many challenges to overcome in transferring youth with spina bifida to adult health care and transitioning to adulthood.

A qualitative exploration of the experiences of children with spina bifida and their parents around incontinence and social participation.

BACKGROUND: Urinary incontinence is frequently experienced by children with spina bifida, putting them at increased risk for low self-esteem and impacting upon participation in home, school and leisure activities. However, little is known about children's experiences of these continence issues. OBJECTIVE: This study explored the experiences of children and young people with spina bifida around continence issues, social participation and peer relationships, in order to identify potential areas of support healthcare professionals can provide. METHODS: Children and youth aged 6-18 years with diagnoses of spina bifida and neurogenic bladder and their parents were invited to participate in semi-structured interviews. Descriptive thematic analysis was employed. RESULTS: Eleven children (with a range of mobility levels, types of spina bifida and degrees of bladder control) and their parents participated in the study. Three broad themes were identified, which encompassed the following: (1) normal versus different; (2) independence, ownership and the road to continence; and (3) peer relationships and acceptance. DISCUSSION: The experiences discussed by the children and parents in this study ranged from minimal impact of incontinence on their day-to-day living to significant social isolation and rejection. The stigma of incontinence was apparent in all interviews. Children and youth who were able to control their bladder with minimal accidents had greater independence and more opportunities for social participation. Healthcare professionals need to take into account that parents and their children may differ in attitudes and desires about the management of incontinence.

'It is life threatening but I don't mind'. A qualitative study using photo elicitation interviews to explore adolescents' experiences of renal replacement therapies.

BACKGROUND: Renal replacement therapy (RRT) transforms the life prospects of young people with established renal failure. However, these treatments can have significant physiological and psychological implications for adolescents as they prepare to transition into adulthood. Health policies increasingly emphasize children and youth's active participation and consultation as users of health services, yet studies infrequently seek their experiences directly. METHODS: Adolescents receiving RRT in a large UK teaching hospital took photographs illustrating the impact of their condition and treatment on their lives. Qualitative photo elicitation interviews were conducted to explore the significance of the images and the young person's experiences. Interviews were analysed using descriptive thematic analysis. RESULTS: Ten young people aged 13-17 years participated. Themes identified were: (1) understanding and acceptance of treatment; (2) living in a non-functioning body; (3) impact upon daily life; (4) sources of support. Young people found treatments challenging and experienced significant impact on relationships and daily routines. Yet, health was prioritized over body image and participants demonstrated great emotional resilience. Young people valued support from family and friends, although were wary of disclosing their condition in case it resulted in being highlighted as different. Young people reported hospital staff as being caring and professional, but their biggest virtue appeared to be their willingness to treat the young people as 'normal'. CONCLUSIONS: Young people engaged readily with the research, and frankly described the impact of RRT on their everyday lives. Service providers must ensure that adolescents' developmental needs are met as traditional tasks of adolescence may lose priority. However, it is also clear that young people's ability to cope with treatments should not be underestimated.

Strategies for improving disability awareness and social inclusion of children and young people with cerebral palsy.

BACKGROUND: Children and youth with disabilities are at a higher risk of being socially excluded or bullied while at school compared with their typically developing peers. This study explored disabled children's suggestions for improving social inclusion. METHODS: Fifteen children with cerebral palsy were interviewed or took part in a group discussion about social inclusion and bullying. All interviews and focus groups were audio-recorded and transcribed verbatim. RESULTS: The children and youth described several strategies to help improve social inclusion at school including: (1) disclosure of condition and creating awareness of disability; (2) awareness of bullying; (3) developing a peer support network and building self-confidence; and (4) suggestions on what teachers can do. CONCLUSIONS: It is recommended that children's suggestions be considered within the classroom context to enhance the social inclusion and participation of children with disabilities.

A qualitative study to explore undergraduate medical students' attitudes towards communication skills learning.

This qualitative study explores medical students' attitudes towards communication skills learning. Thirty-two medical students, including representatives from each year of the medical degree, participated in five focus-group discussions. Theme analysis of each transcript by two independent analysts produced two attitude-related themes: positive attitudes towards communication skills and negative attitudes towards learning communication skills. Students held both positive and negative attitudes towards different aspects of communication skills learning. Students' negative attitudes were related to communication skills being a subjective social science, which was viewed as 'non-academic' and 'common sense'. Students with negative attitudes towards communication skills learning were thought to be good communicators. Some reported being socialized into developing the negative attitudes held by older students and qualified doctors. The timing of communication skills learning was also thought to be important in determining attitudes. The findings within each of these themes and their educational implications are discussed in this paper.