It is what it is...Enduring the never-ending: The lived experiences of parenting adult children with developmental/intellectual disabilities
Siri Gurunam Kaur Khalsa, PhD has a 37-year history of clinical nursing practice and a 12-year history in academia in rural New Mexico.
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The parental home is the predominant place of residence for adults with developmental disabilities/ intellectual disabilities (DD/ID) (Heller et al., 2007). More than 75% of the adult population with DD/ID, living in the US, continue to have their basic needs provided by parents (Williamson & Perkins, 2014). This is based on the estimated statistic of 1.0 to 1.58% of the entire U.S. adult population has a developmental disability (Anderson et al., 2019; Fox et al., 2015). About 2.9 million adults with DD/ID live with a parent 55 years (Byun et al, 2006), with more than 25% of these parents older than 60-years (Braddock et al., 2013). The predominance of aging parents as the source of long-term care seems to be the result of such factors as lack of appropriate housing, services, and supports, as well as discrimination in general (AAIDD, 2013). The study specific aims: 1. Describe the common meanings and shared practices of parenting an adult with DD/ID. 2. Understanding the challenges parents face in their current lives and the resources they use to meet those challenges. 3. Elucidate the practical advice they have for others who want to be supportive of the efforts of parenting an adult with DD/ID. The methodological approach is a Heideggerian hermeneutic approach using deWitt and Ploeg’s (2006) framework for rigor. Data was collected through interviews of 22 New Mexican parents caring for adult children with developmental/intellectual disabilities using semi-structured, open-ended questions and a demographic survey. The inclusion criteria included English-speaking birth parents living in the Southwest who parent an adult with DD/ID over the age of 18 years, who stills lives at home. Three overarching relational themes, a) parenting as unrelenting vigilance, b) parenting as enduring challenges, and c) parenting as a bridge between adult children with DD/ID and others, and the constitutive pattern, it is what it is… enduring the never-ending, provide a window into these parents’ lives. Because little is known about parenting adult children with DD/ID in New Mexico nationally, this research study revealed common meanings and shared practices of parenting adults with DD/ID which informs state and federal policy.
This dissertation has also been disseminated through the ProQuest Dissertations and Theses database. Dissertation/thesis number: 30417304; ProQuest document ID: 2835799518. The author still retains copyright.
This item has not gone through this repository's peer-review process, but has been accepted by the indicated university or college in partial fulfillment of the requirements for the specified degree.
|Review Type||None: Degree-based Submission|
|Research Approach||Qualitative Research|
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