Exploring Young Children Giving Personal Assistance Services to Disabled Parents

描述（由申请人提供）：美国儿童，代表儿童福祉的7个相互关联领域的年度联邦指标纲要，表明很大比例的美国儿童在他们的生活中面临着重大挑战。值得注意的是，在这些无数的统计数据中，没有关于18岁以下的孩子为残疾父母提供个人援助服务的频率的信息。美国统计数据中的这一遗漏与英国和澳大利亚对所谓“年轻看护人”的大量研究和社会政策兴趣形成鲜明对比。这一目的是提供探索性的证据，关于儿童作为照顾者的个人经历。出于我们的目的，我们将儿童定义为17岁或以下的个体，认识到定义儿童的年龄上限因环境而异。我们将“看护”定义为提供日常生活活动（adl）或工具性adl的帮助，如美国人口普查所定义的那样。我们将身体残疾定义为由于疾病、失调、损伤或先天性疾病引起的功能损伤而导致的adl或iadl执行困难。该项目的两个具体目标是：1。通过采访多达20名儿童时期与至少一位身体残疾的父母生活在一起的成年人，并分析他们关于这些经历的社交媒体帖子，对向身体残疾的父母提供个人援助服务（PAS）的经历产生假设；和2。通过分析，描述多达30名父母有身体残疾的青少年儿童（13-17岁）的父母PAS经历：青少年参与者使用类似智能手机的视频制作和编辑技术准备的记录他们生活的视频日记；关于这些经历的社交媒体帖子；这是两个焦点小组的结果，一个是13-14岁的孩子，另一个是15-17岁的孩子，这两个小组的发展阶段不同。与其他定性研究一样，我们的参与者将代表一个有目的的样本；然而，我们应确保纳入足够数量的低收入参与者，以认识到经济资源对于获得正式（付费）护理人员和其他住宿（例如，家庭环境改造，辅助技术）的重要性。我们将招募参与者，直到主题饱和为止。这个项目代表了一项初步努力，旨在深入了解为一个或多个身体残疾的父母提供PAS的儿童的经历和观点。研究结果将为未被认可的美国儿童和他们的残疾父母——历史上被污名化和弱势群体的成员——提供具有重大个人意义的新信息。

DESCRIPTION (provided by applicant): America's Children, an annual federal compendium of indicators representing 7 interrelated domains of child well-being, indicates that large percentages of U.S. children confront substantial challenges in their lives. Notably missing from these myriad statistics is information about how often children under age 18 provide personal assistance services to a parent with a disability. This omission in U.S. statistics contrasts sharply with the considerable research and social policy interest in so-called "young caregivers" in the United Kingdom and Australia, in particular. This aims to provide exploratory evidence about the personal experiences of children as caregivers. For our purposes, we define children as individuals age 17 or younger, recognizing that the upper age limit defining childhood varies by context. We define "caregiving" as providing assistance with activities of daily living (ADLs) or instrumental ADLs, as defined by the U.S. Census. We define physical disabilities as difficulties performing ADLs or IADLs because of functional impairment(s) caused by a disease, disorder, injury, or congenital condition. The project's two specific aims are to: 1. Generate hypotheses about the experiences of giving personal assistance services (PAS) to parents with physical disabilities by interviewing up to 20 adults who, as children, lived with at least one parent who had a physical disability and analyzing their social media posts about these experiences; and 2. Describe parental PAS experiences of a purposive sample of up to 30 adolescent children (ages 13-17 years old) of parents with a physical disability through analyzing: video diaries documenting their lives prepared by the adolescent participants using smart phone-like video production and editing technology; social media posts about these experiences; and results from two focus groups, one involving 13-14 year olds and the other 15-17 year olds, recognizing the differing developmental stages of these two groups. As with other qualitative studies, our participants will represent a purposive sample; however, we shall ensure we involve adequate numbers of low-income participants in recognition of the critical importance of financial resources for access to formal (paid) caregivers and other accommodations (e.g., home environmental modifications, assistive technologies). We shall enroll participants until we reach thematic saturation. This project represents an initial effort o provide insight into the experiences and perspectives of children who provide PAS to one or more parent with a physical disability. The results would provide new information with great personal importance to an under-recognized group of American children and their disabled parents - members of a historically stigmatized and disadvantaged population.