Living for two: Family caregivers' stories of life with adults who have intellectual disabilities.

Format:

Book

Thesis/Dissertation

Author/Creator:

Morgan, Sherry Elizabeth.

Contributor:

0175.

Barg, Fran, advisor.

University of Pennsylvania.

Language:

English

Subjects (All):

Families--Research.

Families.

Sociology--Research.

Sociology.

Gerontology.

Ethnology.

0326.

0351.

0628.

Penn dissertations--Anthropology.

Anthropology--Penn dissertations.

Local Subjects:

Penn dissertations--Anthropology.

Anthropology--Penn dissertations.

0326.

0351.

0628.

Physical Description:

204 pages

Contained In:

Dissertation Abstracts International 72-05A.

System Details:

Mode of access: World Wide Web.

text file

Summary:

The chief aim of this study was to discover issues of concern to older family caregivers of adults with intellectual disabilities, particularly issues arising from the lives of their affected relatives. Story collection and immersion in the social circles of seventeen family caregivers were the methods used. Caregivers who participated were parents or siblings who ranged in age from 56-82; the group included four married couples, one single man, one married woman, and seven women who are single, widowed, or divorced.

Several important issues emerged. The first is how parents and siblings developed identities as long-term caregivers. The birth or diagnosis of an affected child positioned parents to resist the ideology of "normalcy" so that they could develop a relationship with their child as they began to identify themselves as special parents. This enabled them to continue caregiving well beyond the events that usually herald a reduction in hands-on parenting of unaffected children. For siblings, social expectations and cultural traditions worked together with special turning points within the family to shape their identities in ways that assured that they would assume caregiver responsibilities as adults.

The stories also revealed tensions between the knowledge of highly experienced caregivers who are frustrated with services and the authoritative voice of policymakers at the state or regional levels that mandate those services. This tension was most obvious in the stories of caregivers who reported unsafe situations at service sites or difficulties with service provision. As caregivers became aware of the powerful local effects of policies set by large social and governmental institutions they creatively and subversively drew upon their personal, social, and cultural assets to advocate for needed changes that would benefit their relatives. Their expertise as caregivers and advocates would make them valuable mentors to naive or isolated caregivers and effective educators to policymakers and service providers who need to understand how individual and family situations are affected by policies that result in unreliable or unsafe services.

Notes:

Thesis (Ph.D. in Anthropology) -- University of Pennsylvania, 2010.

Source: Dissertation Abstracts International, Volume: 72-05, Section: A, page: 1695.

Adviser: Frances K. Barg.

Local Notes:

School code: 0175.

ISBN:

9781124515731

Access Restriction:

Restricted for use by site license.