TY - JOUR AU - Oser, Tamara K AU - Oser, Sean M AU - Parascando, Jessica A AU - Grisolano, Lee Ann AU - Krishna, Kanthi Bangalore AU - Hale, Daniel E AU - Litchman, Michelle AU - Majidi, Shideh AU - Haidet, Paul PY - 2020 DA - 20/6/3 TI -养育1型糖尿病和自闭症谱系障碍儿童的挑战和成功:混合方法研究JO - J医学互联网Res SP - e17184 VL - 22 IS - 6kw - 1型糖尿病KW -自闭症谱系障碍KW -儿童KW -博客KW -社交媒体KW -定性研究AB -背景:1型糖尿病(T1D)的自我管理需要T1D患者及其护理人员做出许多决定和行动，并提出许多日常挑战。对于那些患有T1D和自闭症谱系障碍(ASD)等发育障碍的人来说，会出现更复杂的挑战，尽管这些挑战在很大程度上尚未得到研究。目的:本研究旨在更好地了解抚养患有T1D和ASD的儿童的障碍和促进因素。对网络内容(第一阶段)和电话访谈(第二阶段)进行了二次分析，以进一步扩大对这些家庭所面临的挑战和成功的现有知识。方法:第一阶段涉及对同时患有T1D和ASD儿童的看护者公开的在线论坛和博客文章进行定性分析。第一阶段的主题被用来创建一个访谈指南，以便通过访谈进行进一步的深入探索。在第二阶段，从宾夕法尼亚州立大学健康内分泌科诊所招募了同时患有T1D和ASD儿童的护理人员，并通过网络从社交媒体帖子到以T1D为重点的团体和网站。感兴趣的受访者被引导到一个安全的基于网络的资格评估。收集了与T1D和ASD诊断、联系信息和人口统计学相关的信息。 On the basis of survey responses, participants were selected for a follow-up telephone interview and were asked to complete the adaptive behavior assessment system, third edition parent form to assess autism severity and upload a copy of their child’s most recent hemoglobin A1c (HbA1c) result. Interviews were transcribed, imported into NVivo qualitative data management software, and analyzed to determine common themes related to barriers and facilitators of raising a child with both ASD and T1D. Results: For phase 1, 398 forum posts and blog posts between 2009 and 2016 were analyzed. Common themes related to a lack of understanding by the separate ASD and T1D caregiver communities, advice on coping techniques, rules and routines, and descriptions of the health care experience. For phase 2, 12 eligible respondents were interviewed. For interviewees, the average age of the child at diagnosis with T1D and ASD was 7.92 years and 5.55 years, respectively. Average self-reported and documented HbA1c levels for children with T1D and ASD were 8.6% (70 mmol/mol) and 8.7% (72 mmol/mol), respectively. Common themes from the interviews related to increased emotional burden, frustration surrounding the amount of information they are expected to learn, and challenges in the school setting. Conclusions: Caregivers of children with both T1D and ASD face unique challenges, distinct from those faced by caregivers of individuals who have either disorder alone. Understanding these challenges may help health care providers in caring for this unique population. Referral to the diabetes online community may be a potential resource to supplement the care received by the medical community. SN - 1438-8871 UR - //www.mybigtv.com/2020/6/e17184 UR - https://doi.org/10.2196/17184 UR - http://www.ncbi.nlm.nih.gov/pubmed/32217508 DO - 10.2196/17184 ID - info:doi/10.2196/17184 ER -