Date of Award

12-2011

Degree Type

Dissertation

Degree Name

Doctor of Philosophy

Major

Nursing

Major Professor

Susan Speraw

Committee Members

Nan Gaylord, Marsha Spence, Tami Wyatt

Abstract

School-age children with Cystic Fibrosis (CF) possess valuable knowledge about themselves. They have experience and ability to offer insight about living with CF. Previous studies, exploring the perceptions of CF children, give little attention to eliciting and listening to their voices. Also, traditional data collection methods limit children from participating in research. The purpose of this study was to explore and describe how school-age children with CF see themselves in the world they live.

The study utilized qualitative description methodology. Symbolic Interactionism served as the researcher’s philosophical lens. It is a perspective that seeks to understand the social world of others, as they perceive it. Photo elicitation was used as the primary data collection method. Each participant was asked to take photographs about “What it is like to be you”. Photographs were then used to stimulate and guide an audio-recorded interview and make a photo book for the child to keep. Data were analyzed using Boyatzis method of inductive thematic content analysis. Sixteen children with CF between the ages of 8 to 11 were purposively recruited from the Southeastern United States. Data saturation was achieved after 13 interviews. Rigor was maintained by a variety of ways including bracketing, peer evaluation, and member checking.

Five themes emerged from the data Me Being Me, My Medicine and Treatments, My Family, My Friends and Other Key Relationships, and My World. Findings revealed that life does not revolve around CF, but instead centers on “me being me” and living a normal life. Additionally, photo elicitation empowered participants to be authors of their own stories, and promoted communication between them and the researcher.

In knowing the reality of children, nurses and other multidisciplinary CF team members are better equipped to design and plan interventions that are meaningful, beneficial, and satisfying to the child and his or her parent. The results of this study demonstrate children can be active participants in research and provides opportunities to transform nursing care by developing and evaluating strategies for the delivery of care to children with CF.

Recommendations for future research include expanding this study to other CF centers and including the perceptions of parents, nurses, and other CF health care providers. Additionally, because perceptions a person holds about them selves and the world change overtime, a follow-up study when participants reach adolescence and adulthood is suggested.

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