| Sumario: | During the last decades several social changes have occurred. These changes have involved an appreciation for the importance of families of individuals with autism spectrum disorder (ASD), along with the need to frame from a more comprehensive approach the understanding of the experiences and adaptation of these families. As a result, the construct of family quality of life has emerged as a salient one for the families of individuals with ASD, along with a rising interest in its conceptualization, measurement and identification of related and predictive factors. Families of individuals with ASD face additional demands and challenges. These additional demands often result in high stress levels and adjustment difficulties in the different family members. When approaching the study of the impact on families of having a member with ASD, traditionally the mothers’ perception has been predominant, leaving out the views and experiences of other relevant family members, such as fathers and siblings. Considering that our context is characterized by familism as a cultural value, to take into account the grandparents’ perception is particularly relevant. This doctoral dissertation has the following aims: 1) to analyze siblings’ perceived impact of having a brother/sister with ASD; 2) to analyze grandparents’ perceived impact of having a grandchild with ASD; and 3) to analyze the influence of the individual characteristics of the person with ASD, the characteristics of parents and social support In family quality of life. To accomplish these objectives, we developed three studies with a total sample of 153 members of 87 families of individuals with ASD, from five provinces of the Andalusia region. The first and second studies met the first and second objective respectively, using a qualitative methodology, based on interviews. A thematic analysis was used for both studies, along with a content analysis in the grandparents’ study. To meet the third objective referred to the factors related with family quality of life, we employed a quantitative methodology approach using a battery of questionnaires. Descriptive and structural equation modeling analyses were performed. Results from the studies point towards the heterogeneity and complexity of the perceived impact by different family members, both at an individual and family level. Moreover, results indicate that there are similarities in the experiences of each member of the family, such as the perception of personal growth and missing a more normative relationship with the person with ASD. However, there are also aspects of the perception of impact that are idiosyncratic to each family member, highlighting then the importance of hearing the voices of the different family members. In addition, the results reinforce the systemic conceptualization of relationships among the family members, bringing to light the interconnectedness of the relationships between the family members. Finally, the results indicate that there are several factors that influence the perception of impact of all members of the family, such as the characteristics of the person with ASD, social support and cultural aspects. In conclusion, taking into account the heterogeneity and complexity of impact perceived by different family members, this doctoral thesis allows us to conclude that it is important to include them in the interventions targeting the person with ASD, as well as incorporate different intervention modalities and formats in the services. This could be a way to adjust and adapt to the different needs and adaptation process of each person and family. Finally, it is important to adopt a systemic perspective in the study and intervention with these families.
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