Goodley Dan, Tregaskis Claire
Centre of Applied Disability Studies, University of Sheffield School of Education, United Kingdom.
Qual Health Res. 2006 May;16(5):630-46. doi: 10.1177/1049732305285840.
Much previous British research on disability and its effects on family life has seen impairment as a personal or family tragedy. In this article, the authors describe current English research that is asking families about their experiences of professional health and social care support since the birth of their disabled child. Interviews with the families uncovered a range of themes that challenged the personal tragedy approach. Far from being passive recipients of care, these are ordinary families seeking appropriate information from professionals to support them in their ordinary parenting role. For them, the professionalized care service should be based on negotiated relationships of equality that give respect to parental perspectives on what is right for their child. The authors conclude that these data are useful in describing ongoing barriers to enabling care provision and in offering a positive view of disabled family life.
此前英国许多关于残疾及其对家庭生活影响的研究都将损伤视为个人或家庭的悲剧。在本文中,作者描述了当前英国的一项研究,该研究询问家庭自其残疾孩子出生以来获得专业健康和社会护理支持的经历。对这些家庭的访谈揭示了一系列挑战个人悲剧模式的主题。这些家庭远非被动的护理接受者,而是普通家庭,他们从专业人员那里寻求适当的信息,以支持他们履行普通的育儿职责。对他们来说,专业化的护理服务应基于平等的协商关系,尊重父母对于孩子所需的看法。作者得出结论,这些数据有助于描述在提供护理方面持续存在的障碍,并对残疾家庭生活给出积极的看法。