Abstract
Parents of individuals with autism spectrum disorders (ASD) often experience stressors associated with caring for their child. These stressors can cause considerable distress for families, which at times can develop into full blown crisis, and it is important that professionals be able to quickly identify when families are approaching or are in crisis to respond appropriately. The current study presents an initial attempt at measuring the subjective experience of crisis in 164 caregivers of people with ASD through a single item instrument, the Brief Family Distress Scale. The BFDS was negatively correlated with helpful coping mechanisms (family hardiness, and parent empowerment), and positive adjustment (caregiver quality of life and positive parenting experiences), and positively correlated with known stressors (severity of aggressive behavior, negative life events) and problematic coping and outcomes (caregiver burden, worry, mental health problems). As expected, caregivers at Marked levels of distress (approaching or in crisis) were significantly different from caregivers at lower levels of distress in nearly all of the dependent variables. Having a quick way of measuring where families are in terms of distress and crisis can be helpful for researchers and clinicians alike.
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Acknowledgment
Portions of this paper were presented at a symposium at the National Association for the Dually Diagnosed International Congress in Toronto, Canada, April 2010. We thank the families who participated. This study was supported by a New Investigator Fellowship from the Ontario Mental Health Foundation to the first author.
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Appendix A
Appendix A
Brief Family Distress Scale
Please circle where you and your family currently are right now, in terms of crisis, by picking one of the following statements
1 Everything is fine, my family and I are not in crisis at all |
2 Everything is fine, but sometimes we have our difficulties |
3 Things are sometimes stressful, but we can deal with problems if they arise |
4 Things are often stressful, but we are managing to deal with problems when they arise |
5 Things are very stressful, but we are getting by with a lot of effort |
6 We have to work extremely hard every moment of every day to avoid having a crisis |
7 We won’t be able to handle things soon. If one more thing goes wrong - we will be in crisis |
8 We are currently in crisis, but are dealing with it ourselves |
9 We are currently in crisis, and have asked for help from crisis services (Emergency room, hospital, community crisis supports) |
10 We are currently in crisis, and it could not get any worse |
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Weiss, J.A., Lunsky, Y. The Brief Family Distress Scale: A Measure of Crisis in Caregivers of Individuals with Autism Spectrum Disorders. J Child Fam Stud 20, 521–528 (2011). https://doi.org/10.1007/s10826-010-9419-y
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DOI: https://doi.org/10.1007/s10826-010-9419-y