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The effect of caregiving on women in families with Duchenne/Becker muscular dystrophy.
Kenneson, Aileen; Bobo, Janet Kay.
Afiliação
  • Kenneson A; McKing Consulting Corporation, Atlanta, GA, USA.
Health Soc Care Community ; 18(5): 520-8, 2010 Sep.
Article em En | MEDLINE | ID: mdl-20561071
ABSTRACT
Duchenne/Becker muscular dystrophy (DBMD) is a disorder of progressive muscle weakness that causes an increasing need for assistance with activities of daily living. Our objective was to assess the psychosocial health and contributing factors among female caregivers in families with DBMD. We conducted a survey of adult women among families with DBMD in the United States (US) from June 2006 through January 2007, collecting 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. Existing validated instruments were used when available. We received responses from 1238 women who were caring for someone with DBMD, 24.2% of whom were caring for two or more people with DBMD. Caregivers were more likely to be married/cohabitating than women in the general US population, and a high level of resiliency was reported by 89.3% of caregivers. However, the rate of serious psychological distress was significantly higher among caregivers than among the general population. Likewise, 46.4% reported a high level of stress, and only 61.7% reported that they were satisfied with their life. A high level of caregiving demands based on the Zarit Burden Interview (ZBI) was reported by 50.4% of caregivers. The post-ambulatory phase of DBMD was associated with decreased social support and increased ZBI scores. In multivariate logistic regression modelling, 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. Employment outside of the home was also a predictor of high stress. Interventions focused on resiliency and social support are likely to improve the quality of life of DBMD caregivers, and perhaps caregivers of children with other disabilities or special health care needs as well.
Assuntos

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Apoio Social / Saúde da Mulher / Cuidadores / Distrofia Muscular de Duchenne / Relações Familiares Tipo de estudo: Prognostic_studies / Qualitative_research Limite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Middle aged País/Região como assunto: America do norte Idioma: En Ano de publicação: 2010 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Apoio Social / Saúde da Mulher / Cuidadores / Distrofia Muscular de Duchenne / Relações Familiares Tipo de estudo: Prognostic_studies / Qualitative_research Limite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Middle aged País/Região como assunto: America do norte Idioma: En Ano de publicação: 2010 Tipo de documento: Article