Parent Focus Groups Research Articles

“Have We Done Enough?” A Cross-condition Exploration of the Experiences of Parents Caring for A Child with an Appearance-affecting Condition or Injury

ABSTRACT Children and young people (CYP) with appearance-affecting conditions/injuries report common pervasive psychosocial difficulties, regardless of cause, nature or extent of their visible differences. Parents or carers can also experience psychosocial difficulties and challenges specific to having CYP with a visible difference. Current literature is confined to exploring condition-specific concerns of parents, typically in more prevalent appearance-affecting conditions/injuries, whilst the experiences of parents of CYP with other visible differences are unknown. Thirty-one interviews (parents n = 20, health and support professionals n = 11) and 4 parent focus groups (n = 25) were conducted. Three overarching themes were constructed: “Appearance does(n’t) matter” describes the impact of having a child with a socially undesirable appearance; “Being ‘battle’ ready” reflects parents’ desire to arm their child with resources to manage challenges, whilst “Walking the tightrope” reflects parents’ lack of clarity about how best to approach this. Findings highlight shared and common cross-condition psychosocial difficulties among parents and carers.

Paradigms lost and gained: Stakeholder experiences of crisis distance learning during the Covid-19 pandemic

The physical distancing requirements designed to slow the contagion of COVID-19 instigated sweeping changes to the education sector. School closures in 193 countries brought significant disruption to education and to the lives of children, parents, and teachers. This study explored the experiences of school stakeholders during this period of crisis distance learning (DL). The perspectives of participants in six discrete focus groups of pupils, parents, and teachers at a private school in Dubai, United Arab Emirates, were subject to thematic analysis. Researchers identified three key themes, including ‘a need for stakeholder support’, ‘curriculum delivery implications’, and ‘educational outcomes of crisis distance learning’. Conclusions and recommendations will be of interest to researchers, teachers, school leaders, and teacher education providers.

Interactions with Home and Health Environments Discourage Physical Activity: Reports from Children with Complex Congenital Heart Disease and Their Parents.

Children with complex congenital heart disease are less active than recommended for optimal health, with social and physical environments important determinants. The purpose of this study was to examine the physical activity perceptions of children with complex congenital heart disease and their parents to identify social and physical environment intervention targets. A semi-structured discussion guide elicited physical activity perceptions from children (26 boys, 19 girls, 6.0–12.4 years) with complex congenital heart disease (single ventricle n = 42) and their parents during three child and three parent focus groups and 41 interviews. Interviews and focus groups were audio-recorded and transcribed verbatim for inductive thematic analysis. Children and parents identified home, peer and health environments as impacting on their children’s physical activity participation. Peer environments, such as school or daycare, were supportive by providing physical activity facilities and enabling fun with peers and time outdoors. At home, parent and sibling interactions both encouraged and discouraged physical activity. The children’s unique health environment fostered physical activity uncertainty, discouraging activity despite minimal or no physician recommendations to restrict physical activity. Children with complex congenital heart disease and their parents recognize the importance of physical activity and fun with friends. Physical activity uncertainty contributes to their inactive lifestyles despite minimal restrictions from health professionals. Positive clinical encouragement and health environment interventions that better support physical activity are required.

Barriers and facilitators of household provision of dairy and plant-based dairy alternatives in families with preschool-age children.

This study aimed to explore barriers and facilitators of the provision of dairy and plant-based dairy alternatives (PBDA) by parents of preschool-age children, a previously unexplored area of research. Five focus groups of parents were conducted and audio-recorded. Verbatim transcripts were analysed using thematic analysis. University of Guelph, in Guelph, ON, Canada in 2019. Thirty-two (n 19 mothers, 13 fathers) parents of preschool-age children. Most (59 %) were university or college educated. Facilitators common to both dairy and PBDA provision included perceived nutritional benefits, such as dairy's Ca, protein and fat content, and PBDA's protein content, and the perception that PBDA adds variety to the diet. Facilitators unique to dairy v. PBDA provision included the taste of, familiarity with, and greater variety and accessibility of dairy products, specifically child-friendly products. A facilitator unique to PBDA v. dairy provision was ethical concerns regarding dairy farming practices. Barriers common to both dairy and PBDA provision included perceived cost, concerns regarding the environmental impact of production, and high sugar content. Barriers specific to dairy included use of antibiotics and hormones in dairy production. A barrier specific to PBDA was the use of pesticides. Behaviour change messages targeting parents of preschoolers can emphasise the nutrition non-equivalence of dairy and some PBDA and can educate parents on sources of affordable, unsweetened dairy and PBDA.

Exploring Stakeholder and Parent Perspectives of a County Response to Adolescent Vaping and E-Cigarette Use

In the United States, regular cigarette use has steadily declined over the years; however, it has been met with an increase in vaping and e-cigarette use. In Tampa, Florida, this trend has been found especially prevalent among school-aged youth. To combat issues of substance use among youth and prevent criminalization for nonviolent crimes, school-age youth cited for use and possession of tobacco products in Hillsborough County were mandated to attend the Youth Tobacco Awareness Course (YTAC). The aim of this study was to investigate YTAC for its perceived effectiveness and usefulness in mitigating adolescent e-cigarette use. Classroom observations, parent focus groups, and program stakeholder interviews were conducted to comprehensively evaluate this program. Findings from this evaluation led to a deeper understanding of the barriers and facilitators to an effective course, the needs and perceptions of program stakeholders, as well as recommendations for improved future interventions.

Becoming connected learners through personalized learning

Drawing from different orientations, personalized, learner-centered environments and connected learning are two frameworks that work well together to renew classrooms and schools to focus on the needs and interests of the learner and make connections between experience, content standards, disciplines, and the community. This case study describes one American Midwestern middle school’s implementation of a personalized, learner-centered approach in one of its five 8th grade houses (groups). A connected learning framework is applied to data from student, parent, and teacher focus groups to demonstrate how personalized learning environments can support the development of connected learners who are active participants in their own learning that is drawn from their own interests and extends beyond the classroom. We applied the connected learning framework to demonstrate how personalized learning environments can support the development of connected learners who are active participants in their own learning that is drawn from their own interests and extends beyond the classroom.

Testing the feasibility of a sustainable preschool obesity prevention approach: a mixed-methods service evaluation of a volunteer-led HENRY programme

BackgroundOver the last 10 years HENRY has been working to reduce and prevent child obesity by training health and early years professionals to deliver its evidence-based programme to parents. The aim and unique contribution of this study was to evaluate whether training volunteers to deliver this programme on a one-to-one basis was feasible.MethodsMixed-methods service evaluation with parent-reported pre- and post-programme outcomes and focus groups conducted with parents and volunteer facilitators. The programme consisted of 8 one-to-one sessions delivered weekly by volunteers (n = 18) to build food and activity-related knowledge, skills, and understanding, and improve parenting efficacy, and parent and child eating and physical activity. Programmes took place at parent’s (n = 69) home or local community venues in four London boroughs, United Kingdom. Parent-reported parenting efficacy, emotional wellbeing, eating, and physical activity data were captured, alongside parent ratings of the programme and volunteer ratings of the training. Parent and volunteer focus groups explored involvement, expectations, and experiences of the programme, training and delivery, feedback, and impact.ResultsParents were mostly female, had varied ethnic backgrounds, and were often not working but well educated. There were statistically significant improvements of a medium-to-large size in parent and child emotional wellbeing, parenting efficacy, fruit and vegetable consumption, family eating and food purchasing behaviours. Parent ratings of the programme were positive and qualitative data highlighted the holistic nature of the programme, which focused on more than just food, and the relationships with volunteers as key facets. Volunteers were also mostly female, had varied ethnic backgrounds, and were often well educated, but more likely to be employed than parents. Volunteers rated the training and delivery as useful in enabling them to deliver the programme confidently and for their own wellbeing. Despite finding some sessions challenging emotionally, volunteers reported positive family lifestyle improvements by parents and children and that the experience would be useful for future employment.ConclusionsIt is feasible to recruit and train volunteers to deliver a structured preschool obesity prevention programme, which parents considered acceptable and enjoyable, with preliminary reports of parent and child benefits.

Predicting Parent Reactions at Diagnostic Disclosure Sessions for Autism.

Receiving a diagnosis of autism for their child can be a pivotal moment for parents, yet there is little research about how providers can predict parent reactions and adjust their feedback. We investigated factors related to parent reactions during the disclosure session using interviews with providers (n = 6), a parent focus group (n = 10), and a mixed-methods survey of parents (n = 189) of recently diagnosed children. Parents' prior knowledge of autism and anxiety about diagnosis predicted emotional reactions and readiness for next steps. Families anxious about receiving a diagnosis are most in need of information but may leave the session feeling lost and unprepared. Providers can promote positive emotional reactions for parents and prevent confusion by increasing their own positivity, warmth, respect, clarity, and confidence.

What is the nature of peer interactions in children with language disorders? A qualitative study of parent and practitioner views.

Children with Language Disorders (LDs) can exhibit increased levels of social withdrawal, aggression and problems managing social conflicts. The reasons underlying this pattern of social interaction profiles remain unclear. This qualitative study aimed to document the nature of social interactions between children with LDs and their peers, and to evaluate explanations for their social behaviour, as understood by parents and practitioners. This study focused on children with LDs who spend school hours with other children with LDs. Three parent focus groups (n = 8) and three practitioner focus groups (n = 10) were conducted with parents of children aged 4-12 attending specialist language schools and practitioners working at these schools. This was a mixed clinical sample. All children of participating parents had LD as their primary area of need, which was the reason they required specialist schooling. Focus groups were conducted across two specialist schools in the UK between March and June 2018. An inductive reflective thematic analysis of the data identified three themes; social knowledge, coping strategies, and emotional competence. Parents and school staff reported that children with LDs experience difficulties managing peer interactions due to a combination of challenges including difficulties with understanding and regulating emotions, and difficulties understanding social situations. Some of the children with LDs were described as having developed strategies to cope with their challenges, for example imposing structure on their social interactions to manage uncertainty, which has implications for their social interactions with peers. Children with LDs have difficulties understanding emotions, difficulties understanding their peer's intentions and difficulties resolving conflict situations independently according to their parents and practitioners working with these children. Participants proposed a novel explanation that social withdrawal may be used adaptively by children with LDs to process information. This study demonstrates the complexity of the relationship between Language Disorders and peer interaction profiles.Implications: Suggestions are offered regarding future research directions, such as investigating the specific contribution language skills make to children's emotion understanding, to better understand the reasons for peer interaction difficulties in children with Language Disorders.

Parents' Experience with the CO-OP Approach: A Consolidation of Three Qualitative Investigations.

In the cognitive orientation to daily occupational performance (CO-OP) approach, parent involvement is critical for transferring skills from therapeutic settings to everyday contexts. This study aimed to gain insight into the experience of parents whose children with developmental coordination disorder participated in CO-OP intervention. This consolidation of three small qualitative studies investigating parents' experience involved an inductive qualitative content analysis of 10 parent interviews and 1 parent focus group. Four overarching themes emerged as depicting parents' experience. Although parents recognized the improvements their children made with the intervention, they also expressed several challenges, such as incorporating CO-OP tasks into daily routines, shifting of parent-child relationship and feeling self-efficacious with the approach. This study highlights that parent observation of intervention sessions is not enough to support parents applying CO-OP at home. Research is needed to understand how to best engage parents in the CO-OP approach.

Enhancing College and Career Readiness Programs for Underserved Adolescents

Supporting college and career readiness among youth who encounter significant academic and life challenges requires innovative strategies to help them envision their futures, leverage their strengths and develop dispositions that promote positive trajectories. For youth development professionals who develop and implement novel programmatic approaches to support the college and career readiness of underserved youth, it is critical to acquire a deeper evidence-based understanding of factors shaping positive career and college pathways as well as to incorporate stakeholder viewpoints in their program design and delivery. In this article, we share key insights from our program development process that can inform the work of program developers, educators and youth services providers who seek to build and enhance career and college readiness programs aimed at underserved youth. We summarize 4 key insights from a narrative review of literature on college and career readiness as well as findings from a set of stakeholders (student, parent and educator) focus groups. We offer our ideas for incorporating these insights alongside stakeholder input into the development and design of college and career readiness activities and programming.

Web-Based Training for School-Based Mentors of Military-Connected Youth: A Multi-Phase Development Study.

This paper describes a multi-phase effort to develop a web-based training for adults serving as mentors in school-based programs for youth with a parent in the military. In Phase 1, we conducted focus groups with military parents to: gauge their receptivity to this type of supportive intervention, identify program features that would make the option of mentoring for their children more or less appealing, and identify specific training needs for adult volunteers preparing for the role of mentor to youth in this population. In Phase 2, we used an iterative process to develop the training protocol, including cycling through multiple drafts, creating a web-based platform, reviewing and incorporating feedback from various stakeholders, and then pilot testing the training with two groups of mentor volunteers as part of a school-based mentoring program for military-connected students. We report on what we learned from the military parent focus groups, including parent skepticism about the need for such a program, concerns about potential stigma, and the need for mentors to have some understanding of military culture. We describe how we used that information to develop a practical and accessible training module for volunteer mentors, especially those without a military background, who could be matched with military-connected youth.

Applying Best Practices from Health Communication to Support a University’s Response to COVID-19

ABSTRACT Higher education institutions face profound communication challenges managing risks for university communities during the ongoing pandemic. This commentary shares 1) findings from our study involving analysis of 17 focus groups of students, faculty, staff, and parents of students to explore effective COVID-19 messages about campus safety, and 2) insights into the process of integrating the expertise of a university health communication center into campus-wide responses to COVID-19. Key focus group takeaways highlight the importance of communicating empathetically, acknowledging those who are made vulnerable through their work on campus, and that promises to return to normal would be perceived as unrealistic. Bringing the evidence base of health communication to the typical work of professional communicators on campus allowed us to create a communication toolkit for consistent messaging, and in turn, learn about the vital role health communication scholars can play in university crisis messaging.

Hearing Loss-Related Issues Affecting Quality of Life in Preschool Children.

The impact of hearing loss (HL) on quality of life (QOL) in young children has not been examined systematically. The objective of this study was to examine patient, parent, and professional perspectives on experiences and situations that affect the QOL in young children with HL and to identify themes that emerged from coded data to develop a parent-proxy QOL measure for young children with HL. Qualitative study with 6 focus groups followed by semistructured interviews with other parents and professionals as stakeholder checks. Academic medical center and local schools for the deaf. Audiology department clinic lists were used to identify eligible participants, who included 5- to 7-year-old children with permanent HL and parents of 2- to 7-year-old children with permanent HL. A sample of 6 children and 12 parents participated in focus groups. An audiology department and multiple schools for the deaf in the area were contacted to recruit for professional participants, resulting in a sample of 10 professionals who participated in focus groups. Focus groups and interviews were audiotaped and transcribed verbatim. Inductive thematic analysis of focus group transcripts identified key concepts and emerging themes of how HL affects young children. Six themes emerged from the data: behavior, feelings, environments, social/activities, family, and hearing equipment. Child, parent, and professional focus group themes overlapped well, and data saturation was reached. These qualitative data provided insight into HL-related issues affecting young children's QOL and were used to create items for a new parent-proxy QOL questionnaire.

Effects of a University–School Partnered After-School Music Program on Developmental Health, Social, and Educational Outcomes

Objective: Little is known about which aspects of after-school programs bolster the developmental milestones required for children to thrive intellectually, socially, and academically. To help close this gap, we examined the effects of an El Sistema-inspired (ESI) after-school music education program to identify the intervention’s social, educational, and developmental health outcomes. Method: The ESI after-school program was provided to 93 fifth-grade students in a racially and ethnically diverse, low-income elementary school in Ann Arbor, MI, over 4 years. We assessed program effects with a mixed-methods design that included preprogram and postprogram participant surveys, interviews with music instructors and the school principal, and parent and participant focus groups. Results: From pretest to posttest, we found significant changes in students’ perception of their music-making ability and in their connection to other students. Participants also noted an enhanced sense of school pride and broader community recognition. Conclusions: Findings suggest that providing after-school music education in racially and ethnically diverse low-income communities may be an effective strategy for enhancing personal agency, strengthening school connections, and fostering school pride in children.

Taking the bus? Barriers and facilitators for adolescent use of public buses to school

Transport to school can contribute significantly to adolescents’ physical activity but in New Zealand – as in many other countries around the world – many adolescents are driven to school. Public transport offers an opportunity to integrate incidental active transport into school commutes. In this paper, we bring together multiple sources of data into a multi-method study to elucidate the barriers to and facilitators of public transport use by adolescents for school travel in Dunedin, New Zealand, a city with low rates of public transport use. The data include a public bus survey from Otago School Students Lifestyle Survey (OSSLS, 1391 adolescents); the Built Environment Active Transport to School (BEATS) Study parental survey (350 parents), focus groups (54 adolescents, 25 parents, 12 teachers) and semi-structured interviews (12 principals); interviews with three policy-makers from local/regional/national agencies; and analysis of 10 relevant local/regional/national strategies/transport plans. The findings show how distance to school, cost, parental trip chaining, built environment features, the weather, convenience, and safety perceptions are major barriers to using public transport to school. Moreover, current transport planning documents do not favour public health. A number of recommendations that could increase public transport use are made including: raising parking prices to discourage parents driving and trip-chaining; improving bus infrastructure and services; providing subsidies; and changing perceptions of public transport use and users. These actions, however, require collaboration between government authorities across the local, regional and national scale.

Reproductive health needs of adolescent and young adult women with pediatric rheumatic diseases

BackgroundThe purpose of this study was to identify reproductive health knowledge gaps and topics that concern adolescent and young adult (AYA) women with pediatric rheumatic diseases and their parents.MethodsData collection occurred in two cohorts. In the first cohort, young women (15–20 years old) with pediatric-onset rheumatic conditions and their parents were recruited from a single, academic pediatric rheumatology center. In the second cohort, young women (18–25 years old) with pediatric-onset rheumatic conditions were recruited from a national conference for families with pediatric rheumatic diseases. This resulted in 20 adolescents and young adults (18.3 ± 2.4 years old), and 7 parent focus group participants. Focus group leaders facilitated discussions centered on reproductive health topics that participants identified as important, their sources of knowledge, and preferences for patient education and ongoing follow-up. Data were summarized independently by 4 researchers to reduce potential bias and subsequently analyzed using rapid qualitative analysis.ResultsAll participants, regardless of diagnosis, medication, current sexual activity, or current intention to have children, expressed concern about the effect of their rheumatic condition and medications on fertility, risks to mother and child during and after pregnancy, and obtaining safe and effective contraception. Additionally, some participants discussed the burden of disease and its potential impact on motherhood. Finally, participants raised concern around the effect of disease and medication on routine reproductive health care, such as menstrual cycles, feminine self-care, and preventive exams. Three themes emerged: 1) participants had been advised to avoid unplanned pregnancy, however reported receiving inadequate explanation to support this instruction, 2) participants conceptualized reproductive health as tied to rheumatic disease management and thus suggested ways to include family members in discussion, and 3) rheumatology practitioners were not considered a resource of reproductive health information.ConclusionsYoung women and their parents reported dissatisfaction with the availability, quantity, and quality of reproductive health information they received, particularly when related to their pediatric-onset rheumatic disease. These findings provide an initial step in understanding the patient perspective of reproductive health in rheumatology, and how to address these concerns in the care of young women with rheumatic diseases.

159-LB: Early Introduction of Continuous Glucose Monitoring Is Well Accepted by Youth and Parents

Early introduction of continuous glucose monitoring (CGM) may be one strategy to improve glucose control in youth with type 1 diabetes. We aimed to evaluate perceptions of CGM initiated <1 month after diagnosis using validated surveys and focus groups. We conducted surveys of parents and youth before the start of CGM and conducted parent focus groups after at least three months of CGM use to evaluate perceptions of early CGM initiation. Parents completed a 21-item Diabetes Distress Scale (DDS) parent. Youth aged ≥11 years completed the DDS-2, diabetes technology attitudes (DTA), PROMIS Global Health (PGH), and CGM benefits (BenCGM) and burdens (BurCGM) surveys. Before starting CGM, parents (n=7, 2 male, age 45.63.4 years, 4 non-Hispanic white) and youth (n=16; 8 male; age 15.3±2.0 years, diabetes duration 11.5±6.9 days, 6 non-Hispanic white) reported low levels of diabetes distress (DDS parent 0.7±0.5, DDS-2 1.7±0.8). Youth reported good global health (PGH 25.6±3.4), few barriers to CGM use (BurCGM 1.9±0.7), positive attitudes towards CGM (BenCGM 3.8±1.3) and diabetes technology (DTA 18.5±2.2). In focus groups, 9 parents (1 male, child’s age 11.7±4.4 years, child’s diabetes duration 11.3±5.1 months) reported overwhelmingly positive attitudes toward CGM technology generally and with starting their child on CGM soon after diagnosis. Parents differed in their preferences on the optimal number of days after diagnosis to start CGM, with some advocating starting immediately and others preferring a week to adjust to the diagnosis and learn basic diabetes management. Parents wanted additional support for the first sensor change at home as well as the timing and method of follow up education. Finally, the majority endorsed decreased stress and worry as a result of using CGM, particularly overnight. These data provide initial evidence that parents and youth newly diagnosed with type 1 diabetes demonstrate a readiness to start CGM shortly after diagnosis and perceive a sustained benefit from the use of CGM. Disclosure A. Addala: None. S. Hanes: None. D. Zaharieva: Speaker’s Bureau; Self; Ascensia Diabetes Care, Insulet Corporation, Medtronic. C. New: None. P. Prahalad: None. D.M. Maahs: Advisory Panel; Self; Eli Lilly and Company, Insulet Corporation, Medtronic, Novo Nordisk A/S. Consultant; Self; Abbott, Sanofi. Research Support; Self; Bigfoot Biomedical, Dexcom, Inc., Roche Diabetes Care, Tandem Diabetes Care. K.K. Hood: Research Support; Self; Dexcom, Inc. Speaker’s Bureau; Self; LifeScan, Inc., MedIQ. M.L. Tanenbaum: None.

From stigma to acceptance: Intellectual and developmental disabilities in Central China.

Children with intellectual and developmental disabilities have historically been at high risk for social exclusion and other vulnerabilities. The Western world has shifted away from institutionally-based services and toward community-based services that allow for greater social inclusion as well as for meeting individual developmental needs, and China is beginning the process of exploring how to make this shift. In 2014 and 2015, a situation analysis examining the lived experiences of parents of children with disabilities in Zhengzhou, Henan, China, was undertaken. Perceptions of strengths, needs, opportunities, and barriers experienced by parents of children in intact families (i.e. families where children with disabilities remain in their birth families) were explored by means of parent interviews and focus groups. Families identify experiences of stigma and acceptance related to traditional and alternative social constructions of intellectual and developmental disabilities, and how they use social networks and information-sharing to help develop community-based services.

Development of a validated short-form of the Childhood Atopic Dermatitis Impact Scale, the CADIS-SF15.

The Childhood Atopic Dermatitis Impact Scale (CADIS) with 45 items may be burdensome to complete. We therefore aimed to develop a CADIS short-form. Parents of 300 children completed the prototype CADIS. Exploratory factor analysis was conducted on the 45-item CADIS version. The most representative items were chosen. Confirmatory factor analysis was used to confirm the a priori factor structure. Content validity was assessed in a focus group of patients, parents, clinicians, methodologists and industry delegates. Internal consistency, 48-h test-retest reliability, construct validity and responsiveness of the newly developed short-form were assessed. A total of 270 families provided data at baseline, 34 after 48h and 228 after 4weeks. Fourteen items of three different factors fulfilled the proposed eligibility criteria and were included in the draft short-form. After the content validity rating, one item relating to the child's sleep was added to further improve content validity. The confirmatory factor analyses showed good model fit, and a 15-item short-form was initiated, the CADIS-SF15. The total scale and the three domains showed good internal consistency and test-retest reliability. The correlation between SCORAD and other subjective measures was consistent with our hypotheses. Differences in scores between mild, moderate and severe AD patients were significant, and the CADIS-SF15 was able to detect changes in 'improving' patients over time. The CADIS-SF15 with 15 items in three domains is an internally consistent, reliable, valid, responsive and brief measure of QoL in children affected with AD and their parents. Further evaluation of clinical applicability is required.