Exploring Young Children Giving Personal Assistance Services to Disabled Parents

探索幼儿为残疾父母提供个人协助服务

• 批准号: 8510022
• 负责人: LISA I. IEZZONI
• 金额: $ 21.75万
• 依托单位: MASSACHUSETTS GENERAL HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-05-20 至 2015-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8510022
• 关键词: 14 year old; 17 year old; 18 year old; 6 year old; Activities of Daily Living; Adolescent; Adult; Age; Alcohol dependence; American; Americas; Australia; Behavior; Caregivers; Caring; Censuses; Child; Childhood; Data; Development; Devices; Disabled Persons; Disadvantaged; Disease; Economics; England; Enrollment; Ensure; Ethnic Origin; Face; Family; Film; Focus Groups; Future; Goals; Grant; Growth; Health education; Healthcare; Hispanics; Home environment; Household; Income; Individual; Injury; Interview; Language; Learning; Life; Low income; Medicaid; Mentally Ill Persons; Mirage; Modification; Parents; Participant; Patients; Perception; Personal Satisfaction; Persons; Pharmaceutical Preparations; Physical environment; Policies; Population; Poverty; Production; Published Comment; Race; Relative (related person); Research; Research Project Grants; Resources; Risk; Rosa; Safety; Sampling; Scotland; Self-Help Devices; Services; Siblings; Site; Social Environment; Social Policies; Specific qualifier value; Staging; Stereotyping; Technology; Telephone; Time; United Kingdom; Wales; Work; career; caregiving; diaries; disability; experience; functional disability; grandparent; insight; instrumental activity of daily living; interest; member; pediatrician; public health relevance; social; statistics

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.

描述（由申请人提供）：美国的儿童，每年联邦汇编的指标代表7个相互关联的领域的儿童福祉，表明很大比例的美国儿童面临着巨大的挑战，在他们的生活。值得注意的是，这些无数的统计数据中缺少关于18岁以下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一遗漏与英国和澳大利亚对所谓的“年轻照顾者”的大量研究和社会政策兴趣形成鲜明对比。 其目的是提供探索性证据，说明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岁或以下的个人，认识到定义儿童的年龄上限因情况而异。我们将“辅助”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。我们将身体残疾定义为由于疾病、障碍、损伤或先天性疾病引起的功能障碍而难以进行ADL或IADL。该项目的两个具体目标是：1。通过采访多达20名成年人，他们在儿童时期与至少一名身体残疾的父母生活在一起，并分析他们关于这些经历的社交媒体帖子，来生成关于为身体残疾的父母提供个人援助服务（PAS）的经验的假设; 2.描述父母PAS经验的一个有目的的样本多达30个青少年儿童（13-17岁）身体残疾的父母，通过分析：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;结果来自两个重点小组，一个涉及13-14奥尔兹，另一个涉及15-17奥尔兹，认识到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一个有目的的样本;但是，我们应确保我们涉及足够数量的低收入参与者，以认识到获得正式（付费）护理人员和其他住宿（例如，家庭环境改造、辅助技术）。我们将招募参与者，直到我们达到主题饱和。 这个项目代表了一个初步的努力o提供洞察力的经验和观点的儿童谁提供PAS一个或多个父母有身体残疾。研究结果将为一个未被充分认识的美国儿童群体及其残疾父母提供具有重要个人意义的新信息--他们是历史上被污名化和处于不利地位的人口的成员。