Double ABCX Model Of Caregiver Stressors And Perceived Resources
Caregiver adaptation to a dystrophinopathy diagnosis can be optimized by increased control, supporting resources, and creation of a healthy family identity.
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Research article overview in layman's terms.
Caregivers of people with Duchenne and Becker muscular dystrophies (also known as dystrophinopathies) may experience a lot of stress related to taking care of their loved one. To understand the impact of this role, researchers studied families with a person diagnosed with childhood-onset dystrophinopathy.
They looked at the family's quality of life, the amount of stress the caregivers experienced, and their perceived social resources (like family, friends and spiritual support). They found that higher levels of stress were associated with lower perceived social support and quality of life, but that this could be improved by increasing perceived control and supportive family resources.
These findings can help caregivers and clinicians identify resources that can help minimize stress and provide a better quality of life for families affected by muscular dystrophies.
Perceived quality of life among caregivers of children with a childhood-onset dystrophinopathy: a double ABCX model of caregiver stressors and perceived resources
Abstract
Caregiver Stressors And Perceived Resources
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, p0.05). FQoL was positively associated with all support measures (correlations ranged from: 0.25 to 0.58, p-values 0.010.001) 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.
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