Jokinen N S, Brown R I
Community Rehabilitation and Disability Studies Program, University of Calgary, Calgary, AB, Canada.
J Intellect Disabil Res. 2005 Oct;49(Pt 10):789-93. doi: 10.1111/j.1365-2788.2005.00753.x.
Family quality of life is a relatively new field of study. Research has primarily concentrated on families of children and young adults with intellectual disability (ID).
This project explored the concept of family quality of life from the perspective of older parents who had adult children with ID aged 40+. Focus groups, individual interviews and surveys investigated family issues related to maintaining or enhancing family quality of life.
Parents reported positive aspects of lifelong caregiving and quality of family life. There were concerns for the health of all family members, the social lives of their adult child, long-term living arrangements and the role of siblings.
Current family and service issues that need to be addressed are related to funding and finances, staffing, and the need to adapt to age-related needs.
家庭生活质量是一个相对较新的研究领域。研究主要集中在智障儿童和青少年的家庭。
本项目从40岁以上成年子女患有智障的老年父母的角度探讨家庭生活质量的概念。焦点小组、个人访谈和调查研究了与维持或提高家庭生活质量相关的家庭问题。
父母报告了终身照料和家庭生活质量的积极方面。他们担心所有家庭成员的健康、成年子女的社交生活、长期生活安排以及兄弟姐妹的角色。
当前需要解决的家庭和服务问题与资金和财务、人员配备以及适应与年龄相关的需求有关。