Iezzoni Lisa I, Wint Amy J, Kuhlthau Karen A, Boudreau Alexy Arauz
Mongan Institute for Health Policy, Massachusetts General Hospital, USA; Department of Medicine, Harvard Medical School, USA.
Mongan Institute for Health Policy, Massachusetts General Hospital, USA.
Disabil Health J. 2016 Apr;9(2):208-17. doi: 10.1016/j.dhjo.2015.10.009. Epub 2015 Dec 1.
Caregiving roles of children <18 years of age living with parents with health conditions or disability have been studied extensively abroad, but little U.S. research has examined the caregiving activities and perceptions of children with parents with significant physical disability.
To examine children's caregiving activities for their disabled parent, childhood perceptions of these activities, and adult views of this caregiving.
We conducted 1-h, semi-structured, open-ended interviews with 20 persons age ≥21 years who as children (age < 18 years) had a parent with significant mobility disability. We used conventional content analysis to identify themes.
Interviewees' mean (standard deviation) age was 36.7 (13.8) years; 4 were male. As children, most interviewees assisted their disabled parent with activities of daily living (ADLs) and instrumental ADLs; some children provided more medical supports. Several parents, especially of older interviewees, did not seek their children's care. Interviewees reported both positive and negative childhood attitudes about caregiving. Roughly half recalled as children feeling proud, special, or otherwise positively toward caregiving activities, while about one-third viewed caregiving as just part of their daily reality (i.e., simply needing to be done). Approximately half remembered also feeling resentful, primarily from time demands, insufficient appreciation, and being different from their peers. Interviewees reported gender and cultural factors affecting their caregiving roles and perceptions.
Children can provide significant care to parents with physical disability. Understanding better their roles and perceptions could suggest ways to improve these experiences for both child and parent.
国外对与患有健康问题或残疾的父母同住的18岁以下儿童的照料角色进行了广泛研究，但美国很少有研究考察患有严重身体残疾的父母的儿童的照料活动和看法。
研究儿童对残疾父母的照料活动、儿童对这些活动的看法以及成年人对这种照料的看法。
我们对20名年龄≥21岁的人进行了1小时的半结构化开放式访谈，这些人在儿童时期（年龄<18岁）有一位患有严重行动障碍的父母。我们使用传统内容分析法来确定主题。
受访者的平均（标准差）年龄为36.7（13.8）岁；4人为男性。在儿童时期，大多数受访者协助残疾父母进行日常生活活动（ADL）和工具性日常生活活动；一些儿童提供了更多医疗支持。几位父母，尤其是年龄较大的受访者的父母，没有寻求子女的照料。受访者报告了对照料的积极和消极的童年态度。大约一半的人回忆起小时候对照料活动感到自豪、特别或以其他积极的态度，而大约三分之一的人认为照料只是他们日常生活的一部分（即只是需要去做）。大约一半的人还记得也感到怨恨，主要是因为时间要求、感激不足以及与同龄人不同。受访者报告了性别和文化因素影响他们的照料角色和看法。
儿童可以为身体残疾的父母提供重要照料。更好地了解他们的角色和看法可能会提出改善儿童和父母双方这些经历的方法。
