Becoming long -term caregivers: A qualitative study of meaning-making and transformation in families of persons with mental retardation or other developmental disabilities

Beatrice Rose Guilbault, University of Rhode Island

Abstract

This is a study of the process by which families make meaningful and adapt to mental retardation or other developmental disability in a family member. Learning that a child has disabilities which will require long-term caregiving is a disorganizing event which precipitates a shift in a family's self-defining paradigm, a reframing of what it means for this group of people to call themselves “family.” In order to become long-term caregivers, family members must first make meaningful the event which will transform their lives. Next, they must revise their definition of family so that it includes long-term caregiving. ^ Seventeen families contributed to this study by participating in 27 formal interviews. An additional 40 persons were present at one or more of 15 participant observation sessions at a family-run day and recreational program for adults who have mental retardation. Data were collected by means of audio tape recordings and field notes, and transcribed, reduced, and analyzed using a variant of the grounded theory method of qualitative analysis. ^ When the participants in this study first learned that a family member has disabilities which will be life-long and which will require long-term caregiving, they began their transformation. Whether they received the diagnosis immediately after the child's birth, or whether the child's appearance, behaviors, or developmental delays led to a sometimes-long search for answers, when the diagnosis came, family members reacted negatively. However, they struggled through their pain to a gradual realization that, unwelcome as were the disability and the changes it brought to their family, there was nothing they could do to alter them. They recognized that if they were to have a happy life, they could not continue to see this event negatively. They must reinterpret the disability and their role as caregivers in a more positive and acceptable light. They must redefine themselves as long-term family caregivers. ^

Subject Area

Psychology, Social|Psychology, Clinical|Sociology, Individual and Family Studies

Recommended Citation

Beatrice Rose Guilbault, "Becoming long -term caregivers: A qualitative study of meaning-making and transformation in families of persons with mental retardation or other developmental disabilities" (2000). Dissertations and Master's Theses (Campus Access). Paper AAI3006463.
http://digitalcommons.uri.edu/dissertations/AAI3006463

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