Parents' Perception of Health-Related Quality of Life (HRQOL) and Hope for Their Child Living with Plagiocephaly: A Case Series

Abstract

Purpose: To examine Positional Plagiocephaly and its relationship to the parents’ perception of the quality of life (QOL) and hope for the future of their child. Study Design and Methods: For the purpose of this honors thesis, a descriptive case series with parent interviews of their experience with infants and toddlers with Positional Plagiocephaly was conducted. In addition, themes from parental postings from a web-based social network for parents of children treated for Positional Plagiocephaly were constructed. Results: A convenience sample of three cases with six parents and themes from the social network were obtained. Two of the case studies were family members and the third case study was a friend of a colleague. Posts made by parents from three pages on a social network were obtained. Consent was obtained prior to the start of the interviews. This project was accepted by the Institutional Review Board (IRB) at Salem State University. The student researcher also completed the Collaborative Institutional Training Initiative (human subject training). This research demonstrated that larger case series are needed to look at the long term effects of this diagnosis. Both qualitative and quantitative studies on the nurse’s role, health- related quality of life (HRQOL), and hope measures need to be conducted. This research may also help nurses and other medical personnel address issues that parents who have a child with Positional Plagiocephaly are concerned about.