The lived experience of caring: The voices of mothers of children with disabilities in Cardenas,Cuba.
详细信息   
  • 作者:Tupe ; Debra A.
  • 学历:Doctor
  • 年:2010
  • 导师:Condran, Gretchen,eadvisorKidd, Dustinecommittee memberGitlin, Lauraecommittee memberMitchell, Davidecommittee member
  • 毕业院校:Temple University
  • Department:Sociology
  • ISBN:9781124052809
  • CBH:3408769
  • Country:USA
  • 语种:English
  • FileSize:14309494
  • Pages:315
文摘
Cubas community-based health care system is both internationally renowned and the signature of the Cuban revolution. Since the time of Cubas catastrophic economic crisis known as the Special Period in Time of Peace, the health care system has been closely linked to the states political legitimacy and the nations economic development. The Special Period also led to the states self evaluation of institutional practices in health and social sectors. Lack of disability services and resources to meet the needs of individuals with disabilities and their families was a key finding of the states assessment. The intent of this study is to present how, during Cubas Post Special Period, structure and culture come together to help in understanding the subjective experiences of women who care for their children with disabilities in a specific context, the community of Cardenas, Cuba. The experiences of women who mother their children with disabilities were examined through survey, semi-structured interactive interviews and observation of mother--professional interactions in the rehabilitation gym of El Centro de Rehabilitacion y Neurodesarrollo, the site where this study was conducted. This study shows that structural and cultural conceptions of disability, gender, and the authority of health professionals are reflected in how mothers understand their childrens conditions, enact their roles as mothers, and navigate institutional arrangements. The dominance of Cubas health care within the society strongly influences the construction of disability as strictly a medical phenomenon. The continuation of significant structural economic constraints clearly has an impact on the methods mothers use to gain resources for their children and access services. Cultural expectations that mothers with children with disabilities embody traditional "good mother" archetype contradict the states legislated position of gender equality. This study reveals group differences in how mothers accept or reject the dominant discourse surrounding disability by examining how they explain their childrens conditions, the visions they hold for their children and their role in promoting their childrens progress. Within group differences are explained by individual location in the social structure and class. The three different approaches that mothers take on in the care of their children are described as provincial, community or cosmopolitan. These categories are distinguished by the mothers educational level, geographical location and their access to material and informational resources. We can conclude that Cubas economic crisis and a recovery plan that included capitalist initiatives played a role in augmenting economic stratification, resulting in a new but somewhat hidden class structure within this socialist nation. Thus the everyday lived experience of mothers who care for their children with disability in Cuba is influenced by the societys structural and cultural arrangements.

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