Families with a person with intellectual disabilities: stress and impact

Purpose of review This paper reviews research published since March 2002 that has addressed the situation of families with a person with intellectual disabilities. Such research is organized into research concerning families with a child with intellectual disabilities and families with an adult with intellectual disabilities, including parents with intellectual disabilities. Trends in family research, including greater methodological diversity and an expanding conception of the family, are highlighted. Recent findings Parents of children with intellectual disabilities report relatively high levels of distress, with a wide range of child, parent, family and service support factors implicated in parental distress. However, many parents also report positive perceptions of their child with intellectual disabilities. Research with parents who themselves have intellectual disabilities report very high levels of maternal distress, associated with a lack of social support. Methodologically, most studies are quantitative cross-sectional surveys using correlational analyses, with little consistency in measures or constructs across studies. However, increasing methodological diversity in family research is apparent. Summary Research concerning families with people with intellectual disabilities is gradually becoming more methodologically diverse and theoretically sophisticated, although more cooperation between research groups is required. Family research is also changing to reflect the changing status of people with intellectual disabilities in society, with expanding conceptions of family systems and increasing attempts to elicit the views of people with intellectual disabilities on their perceptions of these family systems.