Caregivers of Youth with a Fetal Alcohol Spectrum Disorder: Hopes for Them as Adults

Abstract

Caregivers of youth with a fetal alcohol spectrum disorder participated in telephone interviews about their hopes for their youths as adults. Interviews with 16 birth, adoptive, and foster parents, as well as with aunts and grandparents of children over the age of 10 years, were conducted. A total of 54 unique responses were made to the question “What do you want for your child as an adult?”. Participants independently grouped all responses into themes. The groupings were analyzed using multidimensional scaling and cluster analysis using the concept system and resulted in four concepts. The concepts included the following: (a) education and employment, (b) positive relationships, (c) community integration, and (d) support services. The main differences between the participants’ experiences and the literature centered on different emphases on feelings relative to skills and on strengths relative to deficits.

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Acknowledgments

The authors would like to acknowledge the financial support of this research through a grant from the Social Sciences and Humanities Research Council of Canada. We would also like to thank the FASD ELMO group for their assistance and the participants for their contributions to this study.

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Contributions

JB: designed and executed study, assisted with data analysis, and drafted the manuscript. AK: managed data collection, assisted with literature review, collaborated on final drafting of manuscript. EN: assisted with data analysis and interpretation of results of multidimensional scaling and cluster analysis, and performed final editing of manuscript. KC: assisted with data collection. AS: assisted with data collection.

Corresponding author

Correspondence to Jason Brown.

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Funding

This study was funded by a grant from the Social Sciences and Humanities Research Council of Canada.

Ethical Approval

All procedures performed in the study were in accordance with the ethics protocol approved by the Non-Medical Ethics Board at the University of Western Ontario.

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Brown, J., Kapasi, A., Nowicki, E. et al. Caregivers of Youth with a Fetal Alcohol Spectrum Disorder: Hopes for Them as Adults. Adv Neurodev Disord 1, 230–239 (2017). https://doi.org/10.1007/s41252-017-0030-8

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Keywords

  • Alcohol
  • Fetal alcohol syndrome
  • Birth defects