Development and Evaluation of "Period Kits" for Adolescents with Intellectual and Developmental Disabilities: An Embedded Mixed Methods Study.

IF 1.7 4区 医学 Q3 OBSTETRICS & GYNECOLOGY Journal of pediatric and adolescent gynecology Pub Date : 2025-02-01 Epub Date: 2024-09-14 DOI:10.1016/j.jpag.2024.09.004
Sophia Boxerman, Brittany Flores, Xihan Yang, Elena M Masters, Eileen T Crehan, Amanda V French
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Abstract

Background: Patients with intellectual and developmental disabilities (IDD) experience greater unmet medical service needs and decreased care satisfaction compared to those without these diagnoses. There are no evidence-based resources widely available to prepare children with IDD for menarche.

Methods: This IRB approved embedded mixed methods study investigated the efficacy of "period kits" for patients with IDD to ease anxiety and improve preparedness for menarche. Custom kits included a colorful pouch, an original social story, a resource list, and common period management items. Nine family pairs (child/adult) were enrolled. Surveys performed before and after kit exploration queried participants' understanding of menarche, and feedback about the kit itself. Data were analyzed using thematic analysis.

Results: Surveys of the children showed limited knowledge about periods at baseline. Additional themes prior to provision of the "period kit" included limited knowledge, negative perceptions and emotional responses about menstruation and puberty and hesitancy approaching period conversations. After kit exposure, there was an improvement in period related knowledge and promotion of interhousehold discussion with continued room for conversation.

Conclusions: Many kids with IDD have limited baseline knowledge about menstruation. Custom "period kits" may be helpful in stimulating conversation within families and promoting increased knowledge about menses to children and families. Limitations of this study are small size and qualitative nature, potentially limiting generalizability and external data validity.

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为智力和发育障碍青少年开发和评估 "生理期工具包":嵌入式混合方法研究。
背景:与没有这些诊断的患者相比,智力和发育障碍(IDD)患者的医疗服务需求未得到满足的程度更高,护理满意度也更低。目前还没有以证据为基础的资源可广泛用于帮助智力发育障碍儿童为月经初潮做好准备:本研究是一项经 IRB 批准的嵌入式混合方法研究,旨在调查为 IDD 患者提供的 "月经包 "在缓解焦虑和改善月经准备方面的效果。定制的月经包包括一个彩色小袋、一个原创的社会故事、一份资源清单以及常用的月经管理物品。九对家庭(儿童/成人)参加了活动。在探索工具包前后进行的调查询问了参与者对初潮的理解以及对工具包本身的反馈。采用主题分析法对数据进行了分析:结果:对儿童的调查显示,他们对月经的基本认识有限。在提供 "经期套装 "之前,其他主题包括对月经和青春期的有限了解、负面看法和情绪反应,以及对经期对话的犹豫不决。在接触 "经期工具包 "后,他们对经期的相关知识有了进一步了解,并促进了家庭间的讨论,为谈话提供了持续的空间:结论:许多智障儿童对月经的基本认识有限。结论:许多智障儿童对月经的基本认识有限,定制的 "月经套装 "可能有助于激发家庭内部的讨论,促进儿童和家庭增加对月经的了解。本研究的局限性在于规模小和定性性质,这可能会限制研究的普遍性和外部数据的有效性。
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来源期刊
CiteScore
3.90
自引率
11.10%
发文量
251
审稿时长
57 days
期刊介绍: Journal of Pediatric and Adolescent Gynecology includes all aspects of clinical and basic science research in pediatric and adolescent gynecology. The Journal draws on expertise from a variety of disciplines including pediatrics, obstetrics and gynecology, reproduction and gynecology, reproductive and pediatric endocrinology, genetics, and molecular biology. The Journal of Pediatric and Adolescent Gynecology features original studies, review articles, book and literature reviews, letters to the editor, and communications in brief. It is an essential resource for the libraries of OB/GYN specialists, as well as pediatricians and primary care physicians.
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