Lived experiences of adolescents with fetal alcohol spectrum disorder.

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.

Experiences of Children with Fetal Alcohol Spectrum Disorder and Their Families: A Critical Review.

Evidence suggests that children with fetal alcohol spectrum disorder (FASD) experience challenges across many areas of their daily lives and often require interprofessional supports. Recent studies have emphasized the need for an integrated system of care for children with FASD, incorporating medical, allied health, and education services, to facilitate open communication and support for the complex needs that many children experience. To develop such a system of care, it is important to first understand the impact of FASD on children's functioning during daily activities in different environmental contexts. A critical review of existing research was conducted using a critical interpretive synthesis approach. Results revealed that while many studies discussed impacts at the body functions and structures level of children with FASD, they often did not consider the activity, participation, and environmental factors also contributing to the daily functioning of this population. Several studies discussed caregiver experiences and challenges raising a child with FASD; however, no studies investigated the lived experiences relating to impacts across activities and environments from children's perspectives. In addition, the focus on deficits overshadowed investigation into the strengths of children with FASD, leaving a gap in the picture of their daily lives. Further research is required to determine the strengths that children with FASD demonstrate and the challenges impacting their daily functioning within different environmental contexts. Insights gleaned from such research would support intervention practices to become more holistic and interprofessional.

Comparative content review of children's participation measures using the International Classification of Functioning, Disability and Health-Children and Youth.

OBJECTIVE: To evaluate to what extent instruments that intend to measure children's participation actually do so, and to what extent their items can be classified according to the International Classification of Functioning, Disability and Health-Children and Youth (ICF-CY). DATA SOURCES: A systematic search was conducted in MEDLINE, CINAHL, PsycINFO, ERIC, and EMBASE and was limited to the period between January 2000 and May 2011. The search terms of participation, outcome measure, and children were used to identify potential children's participation measures. DATA SELECTION: Instruments were included if they (1) evaluated children's participation based on assessment purpose; (2) were suitable for use with children aged 2 to 12 years; (3) were generic assessments that could be used with a range of disabilities; and (4) involved self-report, proxy report, or interview administrations. DATA EXTRACTION: Instruments were obtained from identified full-text articles and were evaluated for inclusion through group discussion. Two researchers further independently reviewed each included instrument to determine which of the items measured participation based on a contemporary definition. These items were also classified using the ICF-CY linking rules to reflect each instrument's content coverage. DATA SYNTHESIS: Sixteen instruments were identified with 11 found to have more than half of their items measuring participation, but only the School Function Assessment-Participation section comprised 100% participation items. The participation items in each instrument captured between 3 and 9 ICF-CY Activities and Participation domains. Only the Child and Adolescent Scale of Participation and the Participation and Environment Measure for Children and Youth covered all domains. Among the ICF-CY Activities and Participation domains, the interpersonal interactions and relationships domain was addressed the least. CONCLUSIONS: This review revealed differences in the inclusion of participation items in existing children's participation measures and their classification according to the ICF-CY. These differences need to be considered when selecting an instrument.