Living with a sibling diagnosed with fetal alcohol spectrum disorder

Abstract

The following document is a two-paper manuscript-based thesis investigating the experiences of siblings of individuals with Fetal Alcohol Spectrum Disorder (FASD). According to the sibling literature, individuals are impacted by living with a brother or sister with a disability, but, much of the research has focused on siblings of individuals with Autism, Down Syndrome, or developmental disability in general. Thus, the purpose of this exploratory study was to examine both the positive and negative experiences associated with having a sibling diagnosed with FASD, along with what strategies these siblings are using to help them adapt. The first paper, which focused on the benefits and challenges when having a sibling diagnosed with FASD, used a mixed methods approach. The qualitative data consisted of semi-structured interviews, which were analyzed using Interpretative phenomenological analysis (IPA), and the quantitative data comprised the Sibling Inventory of Behaviour Scale (SIB) and the Daily Hassles and Uplifts Scale (DHUS), which were analyzed using descriptive statistical analysis. Siblings described feeling a number of emotions associated with their experience such as frustration, fear/worry, resentment, happiness, and personal growth. The second paper examined both coping behaviours and resources used by siblings to help facilitate adaptation. This qualitative study employed Thematic Analysis (TA) to analyze the semi-structured interview. Results indicated that siblings employ coping behaviours such as active and emotional avoidance, and access both informal and formal resources; however, understanding the complexities of FASD is important in perception of helpfulness of these resources. Implications for clinical interventions are discussed.