ACQUIRING RESEARCH ACCESS: PERSPECTIVES FROM GATEKEEPERS AND PARENTS OF CHILDREN WITH ANOREXIA NERVOSA

Acquiring Research Access:

Perspectives from Gatekeepers and

Parents of Children with Anorexia Nervosa

By Tamara J. Hunt

Thesis Advisor: Dr. Dorothy Breen

An Abstract of the Thesis Presented

in Partial Fulfillment of the Requirements for the

Degree of Doctor of Philosophy

(Counselor Education)

August 2010

            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.

            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. 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.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.