Kelly T Cosgrove, Caitlin Middleton, Talia G Thompson, Brian Be, Lindsey DeVries
{"title":"\"It's Really Complicated\": Engaging Key Stakeholders to Inform a Novel Parent-led Sexual Health Education Program for Autistic Youth.","authors":"Kelly T Cosgrove, Caitlin Middleton, Talia G Thompson, Brian Be, Lindsey DeVries","doi":"10.1007/s10803-024-06620-y","DOIUrl":null,"url":null,"abstract":"<p><p>Autistic adolescents frequently encounter difficulties in managing changes associated with puberty, sexuality, and relationships, and parents may be a useful source of sexual and reproductive health education (SRE) for this population. Despite this, few evidence-based programs exist to support parents in this role. Thus, there is a need for the development of such programs, particularly those incorporating the lived experiences of key stakeholders. The present qualitative investigation aimed to determine the SRE needs of autistic youth and to inform a novel, parent-led SRE program. Data were collected through semi-structured interviews conducted with two rounds of focus groups with two stakeholder groups: parents of autistic children (N = 4) and adult autistic self-advocates (N = 4). Focus groups were recorded and transcribed verbatim. The research team conducted rapid qualitative analysis on all four transcripts, and major findings were summarized and triangulated across groups. Four overarching themes were identified: \"Empower parents as educators,\" \"Individualize supports and education,\" \"Consider cultural and intersecting identities,\" and \"Prioritize safety.\" Parents can serve a primary role in providing SRE to autistic youth and would likely benefit from participating in a tailored program that prioritizes safety and considers the influence of culture and other aspects of identity on content delivery. Future research on the implementation of such a program is needed.</p>","PeriodicalId":15148,"journal":{"name":"Journal of Autism and Developmental Disorders","volume":null,"pages":null},"PeriodicalIF":3.2000,"publicationDate":"2024-11-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Autism and Developmental Disorders","FirstCategoryId":"102","ListUrlMain":"https://doi.org/10.1007/s10803-024-06620-y","RegionNum":2,"RegionCategory":"心理学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"PSYCHOLOGY, DEVELOPMENTAL","Score":null,"Total":0}
引用次数: 0
Abstract
Autistic adolescents frequently encounter difficulties in managing changes associated with puberty, sexuality, and relationships, and parents may be a useful source of sexual and reproductive health education (SRE) for this population. Despite this, few evidence-based programs exist to support parents in this role. Thus, there is a need for the development of such programs, particularly those incorporating the lived experiences of key stakeholders. The present qualitative investigation aimed to determine the SRE needs of autistic youth and to inform a novel, parent-led SRE program. Data were collected through semi-structured interviews conducted with two rounds of focus groups with two stakeholder groups: parents of autistic children (N = 4) and adult autistic self-advocates (N = 4). Focus groups were recorded and transcribed verbatim. The research team conducted rapid qualitative analysis on all four transcripts, and major findings were summarized and triangulated across groups. Four overarching themes were identified: "Empower parents as educators," "Individualize supports and education," "Consider cultural and intersecting identities," and "Prioritize safety." Parents can serve a primary role in providing SRE to autistic youth and would likely benefit from participating in a tailored program that prioritizes safety and considers the influence of culture and other aspects of identity on content delivery. Future research on the implementation of such a program is needed.
期刊介绍:
The Journal of Autism and Developmental Disorders seeks to advance theoretical and applied research as well as examine and evaluate clinical diagnoses and treatments for autism and related disabilities. JADD encourages research submissions on the causes of ASDs and related disorders, including genetic, immunological, and environmental factors; diagnosis and assessment tools (e.g., for early detection as well as behavioral and communications characteristics); and prevention and treatment options. Sample topics include: Social responsiveness in young children with autism Advances in diagnosing and reporting autism Omega-3 fatty acids to treat autism symptoms Parental and child adherence to behavioral and medical treatments for autism Increasing independent task completion by students with autism spectrum disorder Does laughter differ in children with autism? Predicting ASD diagnosis and social impairment in younger siblings of children with autism The effects of psychotropic and nonpsychotropic medication with adolescents and adults with ASD Increasing independence for individuals with ASDs Group interventions to promote social skills in school-aged children with ASDs Standard diagnostic measures for ASDs Substance abuse in adults with autism Differentiating between ADHD and autism symptoms Social competence and social skills training and interventions for children with ASDs Therapeutic horseback riding and social functioning in children with autism Authors and readers of the Journal of Autism and Developmental Disorders include sch olars, researchers, professionals, policy makers, and graduate students from a broad range of cross-disciplines, including developmental, clinical child, and school psychology; pediatrics; psychiatry; education; social work and counseling; speech, communication, and physical therapy; medicine and neuroscience; and public health.