Master of Social Work (MSW)
Lyle S. Hallman Faculty of Social Work
Caregivers of children with Fetal Alcohol Spectrum Disorder (FASD) are an extremely valuable resource, and supporting a stable and nurturing home environment may be the most achievable intervention to improve the child’s prognosis. Very little research has been done to explore effective interventions that focus on the FASD caregiver, rather than the child, for the purposes of preventing caregiver burnout and placement breakdown. The central purpose of this study is to explore non-biological parent caregivers’ experiences of FASD caregiver support groups in order to capture a better understanding of the value of this resource as one part of a continuum of care for families affected by prenatal alcohol exposure. In addition, useful data is gathered and presented concerning participants’ overall experiences as an FASD caregiver, adaptive attitudes that appear to promote wellness among caregivers, and participants’ views concerning needed resources in addition to support groups.
To accomplish this goal, semi-structured interviews were completed with seven non-biological parent FASD caregivers who were attending a variety of different FASD support groups. Qualitative analysis was employed to identify important themes and draw conclusions. This study revealed that support groups are generally beneficial to non-biological caregivers, although not always in the ways anticipated prior to group attendance. Support groups were particularly helpful in their ability to reduce caregiver isolation by offering a non-judgmental forum where caregivers meet with peers who become invested in seeing their families succeed, where there struggles and emotions are normalized, and where they receive mentorship, education, advocacy, practical tools, and support in reframing problem behaviours as symptoms of their child’s disability. Certain elements of group structure were associated with more positive evaluations of support group usefulness, including monthly meetings led by a skilled group leader who was also a fellow FASD caregiver, having the group divided according to ages of the children, and having a consistent structure and routine that ensured that all caregivers’ needs could be attended to at each meeting. Participants saw online forums for support among group members in between meetings as a valuable tool and found one-to-one mentorship outside of the group during crisis points to be particularly helpful.
Although participants spoke very positively about the beneficial impact of the support groups, overall, they also talked about some of the potential negative impacts of groups. This included hearing horror stories that created fear for their own futures, and a variety of issues related to unhealthy group process and leadership issues. Although the intent of this study is not to establish a “gold standard” for caregiver support groups, it provides a helpful framework for group leaders to assess areas for growth and change in their support groups and to highlight the potentially hurtful or damaging aspects of group participation.
Porty, Sharon, "Non-Biological Caregivers’ Experiences of Fetal Alcohol Spectrum Disorder (FASD) Support Groups" (2009). Theses and Dissertations (Comprehensive). 919.