A Crowdsourced Social Media Portal for Parents of Very Young Children with Type 1 Diabetes

为 1 型糖尿病幼儿家长提供的众包社交媒体门户

基本信息

批准号：
9034759
负责人：
Jessica Sima Pierce
金额：
$ 158.97万
依托单位：
NEMOURS CHILDREN'S CLINIC
依托单位国家：
美国
项目类别：
财政年份：
2015
资助国家：
美国
起止时间：
2015-09-20 至 2020-03-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9034759
关键词：
6 year old Address Affect Affective Age American Anxiety Area Behavioral Caring Categories Child Child Rearing Childhood Clinical Cognitive Collaborations Communities Controlled Clinical Trials Crowding Data Delaware Development Diabetes Mellitus Dietitian Distress Effectiveness Electronics Elements Emotional Endocrinologist Environment Evaluation Family Feedback Florida Future Grant Health Personnel Health Professional Health behavior Healthcare Hyperglycemia Hypoglycemia Incidence Insulin-Dependent Diabetes Mellitus Internet Intervention Knowledge Mental Depression Mental Health Metabolic Methods Outcome Parents Pathway interactions Patterns of Care Physiological Population Positioning Attribute Problem Solving Problem behavior Psychologist Public Health Quality of life Randomized Controlled Trials Recruitment Activity Research Research Infrastructure Resources Sleep Social Workers Social support Solutions Source Stress Structure Technical Expertise Testing Time To specify Work age group base care burden control trial coping design design and construction diabetes management diabetes mellitus nursing experience flexibility glycemic control improved innovation meetings member physical conditioning psychologic psychological outcomes public health relevance response social user centered design

项目摘要

DESCRIPTION (provided by applicant): The incidence of type 1 diabetes (T1D) is increasing faster in children < age 6 than other groups. T1D care for very young children (YC-T1D) is very challenging due to their special behavioral, emotional, cognitive and physiological features. Also, it is difficult to minimize both hypo- and hyperglycemic exposure, yet both may affect cognitive sequelae. Parents of YC-T1D struggle to implement optimal T1D care, creating distress that takes a psychological toll on them. Parenting stress, anxiety, depression, and sleep deficiency have been associated with poorer T1D outcomes in this population. Since a trajectory of maladaptive coping with T1D may persist, it is critical to validate interventions that assist YC T1D parents in managing common T1D-related behavioral problems, resolving daily T1D hassles, cultivating healthy coping with T1D distress, and recruiting effective social supports. No rigorous trials of pertinent interventions have been done. Adequate social support enhances both psychological and physical health, but there are barriers to helping YC-T1D parents develop social support networks that offer timely, pertinent and helpful social supports. One possible mechanism for achieving this is through a carefully designed and constructed social media portal developed by and for YC-T1D parents with input from health care providers and application developers. We plan to accomplish this by drawing on "crowdsourcing" expertise provided by our partner, Appirio, Inc. Crowdsourcing is a flexible online activity that has been applied to diverse problems in many fields, including public health, that includes four elements: 1.) An organization that has a task it needs to be performed, (e.g., development of a social media resource by and for parents of YC-T1D); 2.) A community, "the crowd", that agrees to perform the necessary tasks voluntarily (here parents of YC-T1D, T1D clinicians, and application developers); 3.) An online environment that facilitates this work by enabling collaboration between the crowd and the organization, (the infrastructure proposed here); and 4.) Mutual benefit for the organization and crowd members (better T1D outcomes for children and better quality of life for children and parents). We propose parent-driven design of a social media portal that will provide YC-T1D parents with timely, responsible, safe and effective support regarding parental management of common behavioral and affective barriers to effective T1D care in YC-T1D. We will then conduct a preliminary trial (completely in cyberspace) to yield data supporting a future multisite controlled trial of the effectiveness of ths social media resource.

描述（由适用提供）：<6岁儿童的1型糖尿病（T1D）的事件比其他组的增加速度快。 T1D护理非常小的孩子（YC-T1D）由于其特殊的行为，情感，认知和身体特征而受到挑战。同样，很难最大程度地减少低血糖暴露，但两者都可能影响认知后遗症。 YC-T1D的父母努力实施最佳的T1D护理，从而造成心理伤害。育儿压力，焦虑，抑郁和睡眠不足与该人群的T1D结局较差有关。由于与T1D的不良适应应对轨迹可能会持续存在，因此验证有助于YC的干预措施至关重要 T1D父母在处理常见的T1D相关行为问题，解决每日T1D麻烦，以T1D困扰培养健康的应对以及招募有效的社会支持。不已经对相关干预进行了严格的试验。充分的社会支持增强了心理和身体健康，但是有帮助YC-T1D父母开发社会支持网络的障碍，这些网络提供及时，相关和有用的社会支持。实现此目的的一种可能机制是通过由YC-T1D父母开发的精心设计和构建的社交媒体门户网站，并通过医疗保健提供者和应用程序开发人员的意见。我们计划通过利用我们的合作伙伴Appirio，Inc。提供的“众包”专业知识来实现这一目标。众包是一项灵活的在线活动，已应用于包括公共卫生在内的许多领域的潜水员问题，其中包括四个元素：1。）具有必须执行的一项任务的组织（例如，（例如，为YC-T1D的父母）的社交媒体资源的发展）； 2.）一个同意自愿执行必要任务的社区（YC-T1D，T1D临床医生和应用程序开发人员的父母）； 3.）在线环境通过实现人群与组织之间的合作来促进这项工作（此处提出的基础设施）； 4.）对组织和人群成员的互惠互利（儿童的T1D结果更好，儿童和父母的生活质量更好）。我们提出了社交媒体门户网站的父母驱动的设计，该门户将为YC-T1D父母提供及时，负责，安全和有效的支持，以在YC-T1D中有效T1D护理的共同行为和情感障碍的父母管理。然后，我们将进行初步试验（完全在网络空间中），以获得支持THS社交媒体资源有效性的未来多站点对照试验的数据。

项目成果

期刊论文数量（5）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Development and Evaluation of the Pediatric Diabetes Routine Questionnaire for Parents of Young Children with Type 1 Diabetes.

针对 1 型糖尿病幼儿家长的儿科糖尿病常规问卷的开发和评估。

DOI：
10.1007/s10880-022-09888-3
发表时间：
2023
期刊：
Journal of clinical psychology in medical settings
影响因子：
2.2
作者：
Wilcocks,ChelseaP;Enlow,Paul;Wasserman,Rachel;Wysocki,Tim;Lee,Joyce;Aroian,Karen;Pierce,JessicaS
通讯作者：
Pierce,JessicaS

Benefit finding among parents of young children with type 1 diabetes.

1 型糖尿病幼儿父母的获益发现。

DOI：
10.1111/pedi.12860
发表时间：
2019
期刊：
Pediatric diabetes
影响因子：
3.4
作者：
Pierce,JessicaS;Wasserman,Rachel;Enlow,Paul;Aroian,Karen;Lee,Joyce;Wysocki,Tim
通讯作者：
Wysocki,Tim

A Web-Based Coping Intervention by and for Parents of Very Young Children With Type 1 Diabetes: User-Centered Design.