Cosgrove Kelly T, Middleton Caitlin, Thompson Talia G, Be Brian, DeVries Lindsey
Department of Pediatrics-Developmental Pediatrics, Children's Hospital Colorado, 13123 East 16th Avenue, Box 140, Aurora, CO, 80045, USA.
University of Colorado School of Medicine, Aurora, CO, 80045, USA.
J Autism Dev Disord. 2024 Nov 2. doi: 10.1007/s10803-024-06620-y.
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.
患有自闭症的青少年在应对与青春期、性取向和人际关系相关的变化时常常遇到困难，而父母可能是为这一群体提供性健康和生殖健康教育（SRE）的有益资源。尽管如此，几乎没有基于证据的项目来支持父母发挥这一作用。因此，需要开发这样的项目，特别是那些纳入关键利益相关者亲身经历的项目。本次定性调查旨在确定自闭症青少年的性健康和生殖健康教育需求，并为一个由父母主导的新型性健康和生殖健康教育项目提供信息。通过两轮焦点小组访谈收集数据，涉及两个利益相关者群体：自闭症儿童的父母（N = 4）和成年自闭症自我倡导者（N = 4）。焦点小组访谈进行了录音，并逐字转录。研究团队对所有四份文字记录进行了快速定性分析，并对主要发现进行了总结，并在各群体间进行了三角验证。确定了四个总体主题：“赋予父母教育者的权力”、“提供个性化支持和教育”、“考虑文化和交叉身份”以及“将安全放在首位”。父母在为自闭症青少年提供性健康和生殖健康教育方面可以发挥主要作用，并且参与一个将安全放在首位、考虑文化和身份认同的其他方面对内容传递影响的量身定制项目可能会有所受益。需要对实施这样一个项目进行未来研究。
