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. 2022 Dec;64(12):1547-1555.
doi: 10.1111/dmcn.15290. Epub 2022 May 30.

Lived experiences of adolescents with fetal alcohol spectrum disorder

Kelly Skorka  1 , Jodie Copley  1 , Catherine McBryde  1 , Pamela J Meredith  1   2 , Natasha Reid  3
Affiliations

Lived experiences of adolescents with fetal alcohol spectrum disorder

Kelly Skorka et al. Dev Med Child Neurol. 2022 Dec.

Abstract

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.

What this paper adds: Anxiety often prevented adolescents' independent participation in social activities, requiring caregiver assistance. Strengths (e.g. talents, positive relationships) facilitated adolescents' participation and reduced their anxiety. Clinicians and researchers should consider strengths-based approaches to interventions targeting participation. Interventions for adolescents with fetal alcohol spectrum disorder could focus on developing a positive self-identity.

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Figures

Figure 1
Figure 1
This photograph of an adolescent's artwork reflects their views about the importance of not making judgements based on appearance alone
Figure 2
Figure 2
This photograph depicts part of the adolescent's daily routine of reading with their mother before bed
Figure 3
Figure 3
This is a photograph of the adolescent's dining table being set for a family dinner
Figure 4
Figure 4
Relationships between themes
See this image and copyright information in PMC

Comment in

References

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