1. Beal, Judy A. DNSc, PNP, RN
  2. Freda, Margaret Comerford EdD, RN, CHES, FAAN

Article Content

Carpenter, D. R., & Narsavage, G. L. (2004).Journal of Pediatric Nursing,19 (1), 25-32.


I'm always interested in reading qualitative studies, for the descriptions about the experiences of the subjects teach me a great deal. Qualitative research is meant to help us understand concepts that are not easily measured. After all, not everything can be reduced to numbers, as we all know. The study by Carpenter & Narsavage used phenomenology, the method of qualitative research that tries to discover the "lived experience" of an event. This study assessed what families feel just after the diagnosis of cystic fibrosis (CF) in a child, clearly a life-changing event for any family. Results from the focus groups and written narratives of the families involved in this study revealed three essential themes: 1. Falling Apart; 2. Pulling Together; and 3. Moving Beyond. Families described The Devastation of the Diagnosis, An All Encompassing Sense of Fear and Isolation, and An Overwhelming Sense of Guilt and Powerlessness when the diagnosis was made. Knowing that families made statements such as "...every single day you face the fact that this is not going to change..." can help us to understand how much support these families need. During the stage of Pulling Together, families felt they needed Perpetual Vigilance, and needed to develop Lifestyle Adaptations that Bring a Sense of Normalcy. They needed to find ways to fold CF into their family lives, and ways to keep their children as healthy as possible. The third theme, Moving Beyond, represented the time the families had to develop the Optimal Unfolding of a New Kind of Consciousness. They had to learn to move beyond the fear, and learn positive coping skills. This study is important for nurses to read, for it will make it easier for us to listen attentively to parents in this situation, and to empathize with their experiences. I'm in favor of all research that helps us to practice nursing in a more informed manner. Nurses who deal with families in the childbearing years should read this study in its entirety.


Comment by Margaret Comerford Freda