Exploring Young Children Giving Personal Assistance Services to Disabled Parents

描述(由申请者提供)：《美国儿童》是一份年度联邦指标汇编，代表了儿童福祉的7个相互关联的领域，表明很大比例的美国儿童在生活中面临着巨大的挑战。值得注意的是，在这些无数的统计数据中，没有关于18岁以下的儿童向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种遗漏与英国和澳大利亚对所谓的“年轻照顾者”的相当大的研究和社会政策兴趣形成鲜明对比。这旨在为儿童作为照顾者的个人经历提供探索性证据。就我们的目的而言，我们将儿童定义为17岁或17岁以下的个人，认识到定义儿童的年龄上限因环境而异。我们将“照顾”定义为根据美国人口普查的定义，在日常生活活动(ADL)或工具性ADL方面提供帮助。我们将肢体残疾定义为由于疾病、障碍、伤害或先天条件导致的功能障碍(S)而导致的执行ADL或IADL的困难。该项目的两个具体目标是：1.通过采访多达20名小时候与至少一位肢体残疾父母一起生活的成年人，并分析他们在社交媒体上发布的关于这些经历的帖子，来生成关于向肢体残疾父母提供个人援助服务(PAS)的体验的假设；2.通过分析描述多达30名身体残疾父母的青少年儿童(年龄在13-17岁)的有目的样本的父母PAS经历：由青少年参与者使用智能手机般的视频制作和编辑技术制作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；来自两个焦点小组的结果，一个涉及13-14岁的青少年，另一个涉及15-17岁的青少年，承认这两个群体的不同发展阶段。与其他定性研究一样，我们的参与者将代表有目的的样本；然而，我们将确保有足够数量的低收入参与者参与，以认识到财政资源对于获得正式(付费)照顾者和其他住宿(例如，家庭环境改造、辅助技术)的关键重要性。我们将招收参与者，直到我们达到主题饱和。这个项目是一项初步努力，旨在深入了解向一位或多位身体残疾的父母提供PAS的儿童的经历和观点。这一结果将为被低估的美国儿童及其残疾父母提供具有重大个人重要性的新信息--他们是历史上被污蔑和处于不利地位的人群的成员。

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.