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The effect of caregiving on women in families with Duchenne/Becker muscular dystrophy
- Authors:
- KENNESON Aileen, BOBO Janet Kay
- Journal article citation:
- Health and Social Care in the Community, 18(5), September 2010, pp.520-528.
- Publisher:
- Wiley
This study assessed the psychosocial health among female caregivers in families with Duchenne/Becker muscular dystrophy (DBMD). A survey of women among families with DBMD in the US collected data related to the care recipient, perception of caregiving demands, personal factors, and socio-ecologic factors. Life satisfaction, stress, and distress were assessed as outcomes. Participants included 1,238 carers. Findings showed that, while caregivers were more likely to be married or cohabitating than women in the general US population, and a high level of resiliency was reported by 89.3% of caregivers, the rate of psychological distress was significantly higher among caregivers. Forty six percent reported high levels of stress, and only 61.7% reported that they were satisfied with their life. The post-ambulatory phase of DBMD was associated with decreased social support. Life satisfaction was dependent on high social support, high resiliency, high income, and form of DBMD. Distress and high stress were predicted by low resiliency, low social support, and low income. The authors concluded that interventions focused on resiliency and social support was likely to improve the quality of life of caregivers.