Lived Experiences of Adolescents with Fetal Alcohol Spectrum Disorder

Skorka K, Copley J, McBryde C, Meredith PJ, Reid N. Lived experiences of adolescents with fetal alcohol spectrum disorder. Dev Med Child Neurol. 2022 May 30. doi: 10.1111/dmcn.15290. Epub ahead of print. PMID: 35637620.


Aim: To explore the lived experiences of adolescents with fetal alcohol spectrum disorder (FASD) to understand: the ways in which their challenges influence daily functioning; and the personal assets and external resources that facilitate participation.

Method: Semi-structured interviews were conducted with four adolescents (one identified as non-binary, one male, and two female) with FASD aged 13 to 15 years. A photo elicitation approach facilitated participation, whereby adolescents first took photographs of their daily activities and environments. Photographs were subsequently used to generate discussion during the interviews. Data analysis involved using interpretative phenomenological analysis to generate themes.

Results: Two superordinate themes and three subthemes relating to participants’ lived experiences emerged from the interviews: (1) ‘anxiety challenges participation’ (subthemes [i] ‘need for external support’; [ii] ‘the power of positive relationships’; and [iii] ‘talents and interests facilitate participation’) and (2) ‘importance of a unique identity’.

Interpretation: Findings illustrated the barriers adolescents experienced regarding their daily functioning and independence. Additionally, incorporating strengths into daily activities appeared to reduce anxiety and improve participation, and adolescents desired for their unique characteristics to be recognized and appreciated. To support adolescents with FASD, service providers should consider incorporating strengths-based approaches and an explicit focus on facilitating the development of positive self-identities.

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