Research in the field of disability should include the voice of individuals with intellectual disabilities (ID), since these individuals are considered to be the experts on their own experiences. Quality of life (QoL) is a worldwide concept that has been studied in many areas, including ID. Since about the year 2000, researchers have studied QoL of families in many countries around the world, but this body of research has mostly reflected the views of the main caregiver of the person with ID. The major purpose of this study was to give voice to persons with ID, and to explore their perspectives about their FQoL. Four focus groups were conducted with 17 men and women with ID (mild and moderate), aged between 16 and 53 years old. Full transcriptions of the focus group discussions were analyzed with the NVivo 10 software. The findings showed that persons with ID identify family relationships as the most important dimension for FQoL and that some differences between younger and older participants existed. Ethical and practical challenges, as well as the implications for research and intervention are discussed. The inclusion of individuals with ID as informants in research is a way to value their point of view, empower them, and recognize the knowledge that they are able to bring to research.

The relationships between siblings are the most long-lasting in families. When one of the siblings is a person with intellectual disabilities (ID), this relationship assumes an even more important role since this brother/sister will most likely become the disabled individual’s main caregiver. This pilot study had two aims: to explore the experience as an adolescent or adult sibling of a person with ID and to understand the perceptions of these siblings about quality of life as a sibling and about family quality of life. In-depth interviews were conducted with six siblings. The results showed that the experience of a sibling is positive and the acceptance process is of extreme importance. The domains which, from the sibling perspective, contribute to family quality of life are as follows: Family relationships, Acceptance, Health, Influence of values, Financial well-being, Support from others, and Leisure activities. The implications of these findings for intervention are pointed out.

RESUMO -A qualidade de vida familiar (QdVF) em famílias de pessoas com deficiência intelectual (DI) tem interessado investigadores, sugerindo potencialidades em termos de avaliação e intervenção. O presente artigo realizou uma revisão sistemática dos estudos empíricos que analisam a QdVF em famílias de pessoas com DI. Efetuou-se uma pesquisa bibliográfica num portal de bases de dados e recorreu-se a critérios de inclusão previamente definidos. Do total de 32 estudos selecionados, 15 recorreram ao instrumento FQOLS-2006, focando-se na análise das dimensões e domínios da mesma; 11 ao Beach Center FQOL Survey, relacionando o constructo com diversas variáveis; e seis a outras formas de avaliação, essencialmente qualitativas. Assim, a QdVFABSTRACT -Family quality of life (FQoL) for families with members who have an intellectual disability (ID) has recently captured the interest of researchers and demonstrated potential for evaluation and intervention. This paper intends to revise systematically empirical studies that analyze FQoL in families with members having ID. A bibliographic search was carried out in a database and previously defined inclusion criteria were used. From a total of 32 studies, 15 used the FQOLS-2006 that focused on the analysis of their dimensions and domains, 11 the Beach Center FQOL Survey that related the construct to other individual and family variables and six other methods to evaluate FQoL. Thus, FQoL is relevant to understand and intervene with families of persons with ID.

This commentary is on the original article by Williams et al. on pages 89–96 of this issue.

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