Caregiver needs and stress in caring for individuals with fetal alcohol spectrum disorder |
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| Affiliation: | 1. Department of Pediatrics, University of Saskatchewan, Alvin Buckwold Child Development Program, Canada;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;1. Illinois Institute of Technology, Department of Psychology, TN 1C91, 10 West 35th Street Chicago, IL 60616, United States;2. National Organization on Fetal Alcohol Syndrome (NOFAS), 1200 Eton Court, NW, Third Floor, Washington, D.C. 20007, United States;3. University of California San Diego, Department of Pediatrics, 7910 Frost St, La Jolla, CA 92093, United States;1. Department of Educational Psychology, University of Alberta, 6-102 Education North, University of Alberta, Edmonton, AB T6G 2G5, Canada;2. Department of Pediatrics, University of Alberta, Edmonton Clinic Health Academy, 11405-87 Avenue, 3rd Floor, Edmonton, AB T6G 1C9, Canada;3. Glenrose Rehabilitation Hospital, 10230 111 Avenue Northwest, Edmonton, AB T5G 0B7, Canada;1. Discipline of Paediatrics and Child Health, Sydney Medical School, University of Sydney, Australia;2. Telethon Kids Institute, The University of Western Australia, Perth, Australia;3. The University of Washington School of Medicine, Seattle, Washington, USA;4. Seattle Children''s Research Institute, Seattle, Washington, USA;5. Nindilingarri Cultural Health Services, Fitzroy Crossing, Australia;6. Marninwarntikura Women''s Resource Centre, Fitzroy Crossing, Australia;7. University of Notre Dame, Broome, Australia;8. The George Institute for Global Health, Sydney Medical School, University of Sydney, Australia;9. School of Public Health, Curtin University, Perth, Australia;10. Derby Allied Health Service, Western Australian Country Health Services, Derby, Australia;11. Department of Education and Early Childhood Development, Government of Victoria, Australia;1. National Institute for Health Innovation, School of Population Health, The University of Auckland, New Zealand;2. Social and Community Health, School of Population Health, The University of Auckland, New Zealand |
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| Abstract: | ObjectiveIndividuals 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.Method125 caregivers of individuals with FASD completed a survey with questions adapted from the Family Caregiver Survey and the Perceived Stress Scale.ResultsCaregivers 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.ConclusionsCaregivers 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. |
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| Keywords: | Fetal alcohol spectrum disorder FASD Caregiver Needs Stress |
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