Title

Lived Experiences of Perpetual Parents of Adults with Intellectual Disabilities

Presenter Information

Susan C. Merrill

Start Time

24-10-2008 10:10 AM

End Time

24-10-2008 10:40 AM

Abstract

There is a growing phenomenon of adults, who in middle- and old age find themselves continuing to provide the primary care for their children with intellectual disabilities. These parents, labeled “perpetual parents,” face their own aging while living with, and providing significant daily support to, their adult children. The research literature about perpetual parenting has explored outcomes for these families in terms of utilization of community resources, future planning, and perceptions of stress and burden. These important data contribute to awareness by service providers that perpetual parents tend to avoid community-based services and future planning and that their scores on measures of stress and burden are higher than those of their non-perpetually-parenting peers. However, practitioners and researchers know little about the lived experiences of perpetual parents as they move into old age. The purpose of this study, which is a doctoral dissertation, is to explore the lived experiences of perpetual parents, focusing on how they have structured and adapted daily routines over time and the meaning they attribute to their lifelong care giving role. The emphasis of this phenomenological study is on parents as individuals within a complex network of relationships and environments that change and evolve over the life course. The results of this study will add the parental perspective and voice to larger conversations about the issues that surround perpetual parenting and about aging with intellectual disabilities. The author constructed data for this study from three ninety-minute interviews with each of five participants. The author will present themes that emerged from analysis of participant interviews. The author hopes to generate discussion that will clarify and expand her thinking about the data in the final stages of writing her dissertation. Additionally, the author will describe the research approach guiding the study, Interpretative Phenomenological Analysis, and its relevance to occupational science and occupational therapy research.

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Oct 24th, 10:10 AM Oct 24th, 10:40 AM

Lived Experiences of Perpetual Parents of Adults with Intellectual Disabilities

There is a growing phenomenon of adults, who in middle- and old age find themselves continuing to provide the primary care for their children with intellectual disabilities. These parents, labeled “perpetual parents,” face their own aging while living with, and providing significant daily support to, their adult children. The research literature about perpetual parenting has explored outcomes for these families in terms of utilization of community resources, future planning, and perceptions of stress and burden. These important data contribute to awareness by service providers that perpetual parents tend to avoid community-based services and future planning and that their scores on measures of stress and burden are higher than those of their non-perpetually-parenting peers. However, practitioners and researchers know little about the lived experiences of perpetual parents as they move into old age. The purpose of this study, which is a doctoral dissertation, is to explore the lived experiences of perpetual parents, focusing on how they have structured and adapted daily routines over time and the meaning they attribute to their lifelong care giving role. The emphasis of this phenomenological study is on parents as individuals within a complex network of relationships and environments that change and evolve over the life course. The results of this study will add the parental perspective and voice to larger conversations about the issues that surround perpetual parenting and about aging with intellectual disabilities. The author constructed data for this study from three ninety-minute interviews with each of five participants. The author will present themes that emerged from analysis of participant interviews. The author hopes to generate discussion that will clarify and expand her thinking about the data in the final stages of writing her dissertation. Additionally, the author will describe the research approach guiding the study, Interpretative Phenomenological Analysis, and its relevance to occupational science and occupational therapy research.