Title

Complex care: Perspectives from mothers of children with medical needs

Date of Award

2009

Degree Type

Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Cultural Foundations of Education

Advisor(s)

Steven Taylor

Keywords

Complex care, Mothers, Medically fragile, Care, Complex medical needs, Disability studies, Caregiving

Subject Categories

Disability and Equity in Education | Education | Family, Life Course, and Society | Medicine and Health | Sociology

Abstract

Children with complex medical needs, who are dependent on advanced technologies, require skilled nursing, or need monitoring for survival, are often labeled "medically fragile." Research on this population has focused on care burdens of mothers of children with complex needs, with less attention given to women's creative, imaginative and pioneering experience. This qualitative study, using grounded theory methodology, was conducted to explore the experiences of care from mothers' perspectives as they work to meet their children's needs at home, with service providers, and in the community. The findings examine women's experiences of care work in meeting daily needs in the home setting. A second set of findings explores women's care work with health care professionals, human service agencies and educators. A third set of findings details the role imagination plays in women's care work and advocacy. The study uses a feminist disability studies perspective to examine the implications of care work experiences of mothers for informing policy and practices to better meet long-term needs of children with complex medical needs in inclusive, caring communities.

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