Perceived quality of life among caregivers of children with a childhood-onset dystrophinopathy: a double ABCX model of caregiver stressors and perceived resources
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Author
Frishman, NataliaConway, Kristin Caspers
Andrews, Jennifer

Oleson, Jacob
Mathews, Katherine
Ciafaloni, Emma
Oleszek, Joyce
Lamb, Molly
Matthews, Dennis
Paramsothy, Pangaja
McKirgan, Lowell
Romitti, Paul
Affiliation
Univ Arizona, Dept PediatIssue Date
2017-02-10Keywords
Becker muscular dystrophyCaregivers
Duchenne muscular dystrophy
Dystrophinopathy
Muscular dystrophies
Quality of life
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BIOMED CENTRAL LTDCitation
Perceived quality of life among caregivers of children with a childhood-onset dystrophinopathy: a double ABCX model of caregiver stressors and perceived resources 2017, 15 (1) Health and Quality of Life OutcomesRights
© The Author(s). 2017 This article is distributed under the terms of the Creative Commons Attribution 4.0 International License.Collection Information
This item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at repository@u.library.arizona.edu.Abstract
Background: Duchenne and Becker muscular dystrophies, collectively referred to as dystrophinopathies, are recessive X-linked disorders characterized by progressive muscle weakness and ultimately cardiac and respiratory failure. Immediate family members are often primary caregivers of individuals with a dystrophinopathy. Methods: We explored the impact of this role by inviting primary caregivers (n = 209) of males diagnosed with childhood-onset dystrophinopathy who were identified by the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) to complete a mailed questionnaire measuring perceived social support and stress, spirituality, and family quality of life (FQoL). Bivariate and multivariate analyses examined associations between study variables using the Double ABCX model as an analytic framework. Results: Higher stressor pile-up was associated with lower perceived social support (r = -0.29, p <.001), availability of supportive family (r = -0.30, p <.001) or non-family (r = -0.19, p <.01) relationships, and higher perceived stress (r = 0.33, p <.001); but not with spirituality (r = -0.14, p > 0.05). FQoL was positively associated with all support measures (correlations ranged from: 0.25 to 0.58, p-values 0.01-0.001) and negatively associated with perceived stress and control (r = -0.49, p <.001). The association between stressor pile-up and FQoL was completely mediated through global perceived social support, supportive family relationships, and perceived stress and control; supportive non-family relationships did not remain statistically significant after controlling for other mediators. Conclusions: Findings suggest caregiver adaptation to a dystrophinopathy diagnosis can be optimized by increased perceived control, supporting family resources, and creation of a healthy family identity. Our findings will help identify areas for family intervention and guide clinicians in identifying resources that minimize stress and maximize family adaptation.ISSN
1477-7525PubMed ID
28187773Version
Final published versionSponsors
CDC [5U01DD000831, 5U01DD000187, 5U01DD000189, 5U01DD000191, 5U01DD000190]Additional Links
http://hqlo.biomedcentral.com/articles/10.1186/s12955-017-0612-1ae974a485f413a2113503eed53cd6c53
10.1186/s12955-017-0612-1
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Except where otherwise noted, this item's license is described as © The Author(s). 2017 This article is distributed under the terms of the Creative Commons Attribution 4.0 International License.
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