"It's a learning curve throughout your entire life": Experiences and impact of FASD in adolescence explored in online photovoice research

Abstract

Background: Research into the lived experience and disability of Fetal Alcohol Spectrum Disorder (FASD) is sparse in adolescence, despite its relevance to supports and life outcomes.

Aims: The study explored adolescents' lived experiences of FASD and access to support across home, school, and community.

Methods and procedures: An online photovoice study was undertaken with eight young people (age 12-19, in education), integrating an Interpretative Phenomenological Analysis (IPA) approach. The research process comprised two individual interviews, group training, individual photo-taking, and group sessions for photo analysis/ dissemination.

Outcomes and results: Participant-led analysis of their photos identified how activities at home and in the community had functions of relaxation, sensory gratification, and enabled concentration. Researcher-led analysis found that young people identified with the disability of FASD through experiences at home and school. While they acknowledged the value of support and relationships, education was not always an inclusive experience.

Conclusions and implications: Participatory online research allowed insight into the impact of FASD as a disability and underlines a consistent need for support in adolescence and the transition into adulthood. Young people with FASD require explicit support to develop their advocacy skills to improve educational outcomes.

Keywords: Disability; FASD; IPA; Lived experience; Photovoice; Self-advocacy.