Background:

Caregivers of individuals with FASD often experience a number of significant challenges in their daily lives. Some researchers have suggested that the stress experienced by caregivers of individuals with FASD is different, and more stressful, from that of other developmental disabilities, like autism spectrum disorder and down syndrome.

Factors such as educational supports, relief for caregivers, respect and assistance from professionals, information, and personal support networks are integral to achieving successful outcomes for individuals with FASD, but caregivers often report not having access to the supports and services needed to successfully care for their child. It is critical to not only care for the individual with FASD, but to also care for the caregivers raising and supporting individuals with FASD.

The authors of this report explored the current body of literature that investigates the experiences of caregivers in supporting individuals with FASD. Although the research team explores FASD from a UK lens, they acknowledge that approximately 50% of the studies analyzed in this research are from Canada.

Main Findings

The authors of this study identified four major themes regarding caregivers’ experiences in supporting individuals with FASD:

 Living and coping with FASD

Caregivers identified that caring for an individual with FASD can have a negative effect on their well-being, as well as the family relationships and dynamics. The stress caregivers experience could be a result of a number of factors, including limited professional supports, lack of knowledge or training regarding an FASD diagnosis, and managing comorbid disabilities and conditions. Caregivers use a number of parenting strategies in order to adapt to their family circumstances, manage their caregiver stress, and improve outcomes for their children. The future was a common area of focus for caregivers, as they expressed concern about, or hope for, what comes next for their children. 

Stigma and blame

Experiences of stigma and feelings of guilt and blame were prevalent. Caregivers of individuals with FASD feel isolated and judged by the public, feel guilt for drinking during pregnancy, feel shame for being unable to meet the complex needs of their children, and perceive judgement from professionals and community members in regard to their child’s behaviour.

Diagnosis

A formal diagnosis can help caregivers and individuals with FASD better understand their unique needs and challenges and can help caregivers access specialized supports they may not have previously had access to. However, caregivers found that getting a diagnosis for their child was extremely difficult as a result of lack of awareness, training, or understanding amongst health care professionals. Caregivers, as a result, felt that they had unrealistic expectations for their children because they were not provided with a good understanding of FASD.

Support

The theme of support was common, related to caregivers receiving formal and informal supports that were needed to assist them in caring for an individual with FASD. Formal supports often included referrals to services, medications, counselling for caregivers and caregiver support groups. Informal supports involved physical assistance and emotional support from spouses and family members. Caregivers believe that effective supports can improve outcomes for families, help children with FASD transition to adulthood, and help individuals with FASD achieve some level of independence. However, the researchers identified that a lack of understanding of FASD in the health care and social services community significantly impacted the supports caregivers had access to.

Recommendations

• Improve training and guidance and increase understanding of prenatal alcohol exposure and FASD among health care professionals and related health and social service providers;
• Training on FASD prevention, diagnosis, and support should be integrated into postsecondary studies and should be provided as part of professional development; and
• Worldwide, FASD diagnostic guidelines should follow the Canadian guidelines as a model and incorporate guidelines that diagnose the full range of fetal alcohol spectrum disorders. These guidelines should be made available to all health care practitioners and emphasize the need for testing to exclude other disorders.

Take home message

Caregivers and families experience numerous and significant impacts in relation to understanding FASD, obtaining an FASD diagnosis, and managing and supporting individuals with FASD through their lifetime. A lack of understanding by health care and social service providers was considered a key barrier to accessing effective resources and supports. Improved training, resources, and FASD diagnostic guidelines for health care practitioners is essential for improving outcomes for individuals, caregivers, and families.

 Authors: Nikolina Angelova, Juliet Brown, Naomi Fearns, Sarah Harley, Moray Nairn

Organization: Healthcare Improvement Scotland

Date: January 2019

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