Date of Award

8-2010

Level of Access

Campus-Only Dissertation

Degree Name

Doctor of Philosophy (PhD)

Department

Counselor Education

Advisor

Dorothy Breen

Second Committee Member

Phyllis Brazee

Third Committee Member

Nellie Cyr

Abstract

The purpose of this study was to understand the conditions necessary to gain research access to parents of children with anorexia. In this study, I also examined and explored avenues parents have for sharing their story and their experiences of parenting a child with anorexia as well as whether gatekeepers have a role in connecting parents and researchers together. For the purposes of this study, gatekeeper is a collective term used to signify persons who identified themselves as medical doctors, counselors, social workers, educators, psychologists, psychiatrists, etc. Cresswell's (in Thomas, 2006) model of inductive analysis for analyzing qualitative data was used to examine interview responses from participants. The findings illuminated two prominent themes: factors that affect story telling and the differing expectations of parents and gatekeepers. In this study, I found that families have a strong desire to tell their story regarding parenting a child with anorexia. Families want to make a difference in the lives of other parents whose children are diagnosed with anorexia but they also want additional research in the field of eating disorders to address the parental experience. The second finding that emerged related to how gatekeepers and parents saw the role of a gatekeeper in mediating access for parents of children with anorexia. While parents and gatekeepers agree that saving the life of the child with anorexia is the most important role of treatment providers, they do disagree on their roles and responsibilities regarding informing parents about research opportunities as ways for parents to tell their stories. Most researchers felt that participating in research was not on the minds of parents at all, yet parents are reporting that they do indeed want to participate, but simply are not being asked. So while parents and gatekeepers share similar views regarding the urgent need for high quality treatment for the identified child, they disagree on their role of connecting parents and researchers together. Recommendations include finding a better balance between the privacy of patient information and the isolation felt in another family navigating the experiences of parenting a sick child. Additionally, providing more support groups for families to connect with one another and share the burden of parenting a child with anorexia would be helpful for parents. And finally, Gatekeepers and researchers must develop protocols for inviting and encouraging the parental participation in research, which ultimately is aimed at improving the process for parents as well as advancing the field of eating disorders in general.

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