养育1型糖尿病幼儿的起起落落：一项众包研究。
The Ups and Downs of Parenting Young Children With Type 1 Diabetes: A Crowdsourcing Study.
作者信息
Pierce Jessica S, Aroian Karen, Caldwell Cindy, Ross Judith L, Lee Joyce M, Schifano Elizabeth, Novotny Rebecca, Tamayo Anthony, Wysocki Tim
机构信息
Nemours Children's Health System, Jacksonville, FL.
University of Central Florida.
出版信息
J Pediatr Psychol. 2017 Sep 1;42(8):846-860. doi: 10.1093/jpepsy/jsx056.
Abstract
OBJECTIVES
Parenting young children with type 1 diabetes (YC-T1D) entails pervasive challenges; parental coping may influence child and parent outcomes. This study used a qualitative descriptive design to describe these challenges comprehensively to inform the user-centered design of an Internet coping resource for parents.
METHODS
A "Parent Crowd" of 153 parents of children with T1D onset at ≤ 5 years old submitted textual responses online to open-ended questions about parenting YC-T1D. Systematic coding organized responses into domains, themes, and examples. A supplemental focus group of racial/ethnic minority parents enhanced the sample's diversity and validated findings from the Parent Crowd.
RESULTS
Similar domains and themes emerged from responses of crowdsourcing and focus group participants. In each domain, parenting YC-T1D was challenging, but there was also substantial evidence of positive coping strategies and adaptability.
CONCLUSIONS
The study yielded rich data to inform user-centered design of an Internet resource for parents of YC-T1D.
摘要
目的
养育患有1型糖尿病的幼儿（YC-T1D）面临诸多普遍挑战；父母的应对方式可能会影响孩子和父母的结局。本研究采用定性描述性设计，全面描述这些挑战，为以用户为中心设计面向父母的互联网应对资源提供参考。
方法
153名孩子在5岁及以下时被诊断为1型糖尿病的家长组成了一个“家长群体”，他们在线提交了关于养育YC-T1D孩子的开放式问题的文字回答。系统编码将回答整理成领域、主题和示例。一个由少数族裔家长组成的补充焦点小组增加了样本的多样性，并验证了“家长群体”的研究结果。
结果
众包和焦点小组参与者的回答中出现了相似的领域和主题。在每个领域，养育YC-T1D都具有挑战性，但也有大量积极应对策略和适应能力的证据。
结论
该研究产生了丰富的数据，可为以用户为中心设计面向YC-T1D患儿家长的互联网资源提供参考。
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