Caregiver needs and stress in caring for individuals with fetal alcohol spectrum disorder

Susan A Bobbitt; Lauren A Baugh; Gail H Andrew; Jocelynn L Cook; Courtney R Green; Jacqueline R Pei; Carmen R Rasmussen

doi:10.1016/j.ridd.2016.03.002

Caregiver needs and stress in caring for individuals with fetal alcohol spectrum disorder

Res Dev Disabil. 2016 Aug:55:100-13. doi: 10.1016/j.ridd.2016.03.002. Epub 2016 Apr 6.

Authors

Susan A Bobbitt¹, Lauren A Baugh², Gail H Andrew³, Jocelynn L Cook⁴, Courtney R Green⁵, Jacqueline R Pei⁶, Carmen R Rasmussen²

Affiliations

¹ Department of Pediatrics, University of Saskatchewan, Alvin Buckwold Child Development Program, Canada. Electronic address: sab281@mail.usask.ca.
² Department of Pediatrics, University of Alberta, Canada.
³ Department of Pediatrics, University of Alberta, Glenrose Rehabilitation Hospital, Canada.
⁴ University of Ottawa, Society of Obstetricians and Gynaecologists of Canada, Canada.
⁵ Society of Obstetricians and Gynaecologists of Canada, Canada FASD Research Network, Canada.
⁶ Department of Educational Psychology, University of Alberta, Canada.

PMID: 27058320
DOI: 10.1016/j.ridd.2016.03.002

Abstract

Objective: Individuals with FASD experience neurodevelopmental impairments and adverse outcomes, which can result in stress on the caregiver. However, there is little research on the needs of caregivers supporting individuals with FASD and whether they are associated with caregiver stress.

Method: 125 caregivers of individuals with FASD completed a survey with questions adapted from the Family Caregiver Survey and the Perceived Stress Scale.

Results: Caregivers reported a range of needs and concerns, and high levels of stress. In many areas of caregiver well-being concerns tended to be higher among caregivers with adolescents and adults compared to those with children. Foster parents reported fewer well-being concerns than biological/kinship and adoptive parents. Caregivers who cared for the individuals for longer periods of time reported the most well-being concerns and lowest satisfaction with supports. Caregivers with the lowest income reported higher levels of stress than those with higher incomes. Higher reported stress was highly correlated with more needs/concerns.

Conclusions: Caregivers of individuals with FASD have multiple areas of need and concern, and experience high levels of stress. Reducing demands on caregivers and providing resources may help reduce caregiver needs and stress, particularly for those caring for adolescents and adults, and those with lower incomes.

Keywords: Caregiver; FASD; Fetal alcohol spectrum disorder; Needs; Stress.

MeSH terms

Adolescent
Adoption*
Alberta
Caregivers / psychology*
Caregivers / statistics & numerical data
Child
Child, Preschool
Female
Fetal Alcohol Spectrum Disorders*
Foster Home Care*
Health Services Needs and Demand*
Humans
Income / statistics & numerical data
Infant
Infant, Newborn
Male
Parents / psychology*
Stress, Psychological / epidemiology
Stress, Psychological / psychology*
Surveys and Questionnaires
Young Adult