PS47 Family members and partners of people with autism experience a major impact on their quality of life as measured by the Family Reported Outcome Measure

Abstract

A person’s autism has a huge psychosocial impact on families, yet this impact is often ignored or neglected. Measuring this impact is critical to planning and providing appropriate support services to impacted families. This study aims to measure the impact of a person’s autism on the quality of life (QoL) of their family members using the generic and extensively validated Family Reported Outcome Measure (FROM-16). A UK cross-sectional online study recruited family members and partners of people with autism through the Autism Research Centre and Healthwise Wales. The family members and partners of people with autism completed FROM-16. The data analysis included descriptive and other statistics, including nonparametric Mann–Whitney U-tests and Kruskal–Wallis tests for group comparisons. Multiple linear regression was used to investigate relationships between dependent and independent variables. FROM-16 descriptive score banding was use to describe the severity of the impact of a person’s autism on family members and partners. In total 129 family members or partners of people with autism completed the FROM-16. The family members or partners had a mean age of 51.2 years (SD 12.8) and 100 (77.5%) were female. The people with autism has a mean age of 28.1 years (SD 17.3) and 48 (37.2%) were female. The FROM-16 mean total score was 18.5 (SD 8.6), indicating ‘a very large effect’ on the QoL of family members, with being female and being a parent both significant predictors of impact. ‘Feeling worried’ had the highest mean score of 1.55 (out of 2), followed by ‘feeling frustrated’ (mean 1.45 out of 2), ‘family activities’ (mean = 1.40, SD = 0.7) and ‘difficulty caring’ (mean = 1.31, SD = 0.7). The majority (60.5%) had a mean FROM-16 score ≥ 17, indicating ‘a very large effect’ to ‘extremely large effect’ on the QoL of these family members. The QoL of family members and partners of people with autism is impacted profoundly, highlighting the need for strong family-­centred support, equipping families with skills to help their family members with autism live fuller lives. Using the FROM-16 routinely can help identify and address the needs of these family members.