School of Psychology, The University of Adelaide, Adelaide, South Australia, Australia.
J Intellect Disabil Res. 2012 Jan;56(1):71-86. doi: 10.1111/j.1365-2788.2011.01462.x. Epub 2011 Aug 30.
Family quality of life (FQOL) is a recent concept in intellectual/developmental disability research. Outcomes for the family are important to the provision of services because families, rather than institutions, are increasingly considered the primary support unit. This article presents Australian findings using the international Family Quality of Life Survey: Main Caregivers of People with Intellectual or Developmental Disabilities (FQOLS-2006).
Forty-two South Australian main caregivers of people with an intellectual/developmental disability were interviewed using the FQOLS-2006. The FQOL domains assessed were Health of the Family, Financial Well-being, Family Relationships, Support from Other People, Support from Disability-Related Services, Influence of Values, Careers, Leisure and Recreation, and Community Interaction. Domains were measured in terms of Importance, Opportunities, Attainment, Initiative, Stability and Satisfaction. The FQOLS-2006 asked about the family's practical and emotional Support from Other People together, whereas the current study separated the constructs of practical and emotional support. Questions pertaining to FQOL in the past were also added, in order to gain a broader picture of present FQOL.
Results indicated that families considered all the FQOL domains to be important. However, Health, Family Relationships and Financial Well-being were regarded as slightly more important than Practical and Emotional Support from Others. The attainment of Family Relationships, Health, Values, and Leisure and Recreation were rated as quite a bit, but Practical Support from Other People was only rated as a little. Families were generally satisfied with all FQOL domains, but they were satisfied with their Family Relationships and they were neither satisfied or dissatisfied with their Financial Well-being. Results also indicated that there was a need to distinguish between the provision of practical and emotional support from others, because the attainment of emotional support was rated at a slightly higher level than practical support.
The FQOLS-2006 provided a comprehensive measure of FQOL, which, with some additional modifications, could be used to better inform service provisions and ultimately enhance the quality of life of people with intellectual/developmental disabilities and their families.
家庭生活质量（FQOL）是智力/发育障碍研究中的一个新概念。家庭的结果对服务的提供很重要，因为家庭而不是机构，越来越被认为是主要的支持单位。本文介绍了使用国际家庭生活质量调查：智力/发育障碍者主要照顾者的澳大利亚发现（FQOLS-2006）。
采用国际家庭生活质量调查：智力/发育障碍者主要照顾者（FQOLS-2006）对 42 名南澳大利亚智力/发育障碍者的主要照顾者进行访谈。评估的 FQOL 领域包括家庭健康、经济福利、家庭关系、他人支持、残疾相关服务支持、价值观影响、职业、休闲娱乐和社区互动。领域是根据重要性、机会、实现、主动性、稳定性和满意度来衡量的。FQOLS-2006 询问了家庭在过去和现在获得他人的实际和情感支持，而目前的研究则将实际和情感支持这两个概念分开。还增加了有关过去 FQOL 的问题，以便更全面地了解现在的 FQOL。
结果表明，家庭认为所有的 FQOL 领域都很重要。然而，健康、家庭关系和经济福利被认为比他人的实际和情感支持稍微重要一些。家庭关系、健康、价值观和休闲娱乐的实现程度被评为相当高，但他人的实际支持仅被评为略高。家庭对所有 FQOL 领域都比较满意，但对家庭关系比较满意，对经济福利既不满意也不满意。结果还表明，需要区分他人提供的实际支持和情感支持，因为情感支持的实现程度略高于实际支持。
FQOLS-2006 提供了一个全面的 FQOL 衡量标准，经过一些额外的修改，可以更好地为服务提供提供信息，最终提高智力/发育障碍者及其家庭的生活质量。
