Fetal Alcohol Spectrum Disorder service delivery: Exploring current systems of care from the caregivers’ perspective

Lori Jane Walls, Jacqueline Pei

Abstract


Walls, L., & Pei, J. (2013). Fetal Alcohol Spectrum Disorder service delivery: Exploring current systems of care from the caregivers’ perspective. The International Journal Of Alcohol And Drug Research, 2(3), 87-92. doi:10.7895/ijadr.v2i3.75 (http://dx.doi.org/10.7895/ijadr.v2i3.75)

Aims: The goals of this study were to: (1) gain improved understanding of the needs of caregivers caring for individuals with FASD; (2) gain improved understanding of the experiences of these caregivers as they attempt to access and implement supports in daily functioning; and (3) gain improved understanding of caregivers’ perceptions of strengths and challenges in systems of care for individuals with FASD.

Design: Information for this study was gathered using a phenomenological in-depth interviewing method, allowing the researchers to explore existing services, policies, and local knowledge from the perspective of the caregivers who were accessing services. 

Participants: A total of eight participants (N = 8) met the criteria for participation.  Six of the participants in the study were adoptive parents and two were foster parents.  Of the eight participants, seven were female and one was male.  Three of the study participants resided in rural locations and five in urban centers. 

Findings: Results indicated that caregivers pass through four stages of caregiving, with each stage having a distinct primary need and requiring supports and services that best address that need.  Three additional themes related to service delivery also emerged: caregiver considerations, program factors, and building on strengths. 

Conclusions: Study results emphasize the need for further research exploring the concept that caregivers experience specific caregiving stages, and that programming factors should align with caregivers’ needs in each of these stages.  Participants’ narratives also suggest that the results of this study may be relevant beyond its regional specificity and limited sample size, and may in fact reflect the experiences of caregivers across jurisdictions.

Keywords


Fetal Alcohol Spectrum Disorder, FASD, caregiver, supports, services

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DOI: http://dx.doi.org/10.7895/ijadr.v2i3.75

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