Knowledge Bank

Purpose and Background: The complexity and severity of complex congenital heart disease (CCHD) not only impacts the infant, but also the parents of that infant as they navigate the health care system and cope with having a critically ill child. The purpose of this study was to describe the experience of parents of children with CCHD with their child's healthcare professionals through their child's first year of life. Method: This study used existing data from 72 interviews collected from 22 pairs of parents three to four times throughout their child's first year of life. Content analysis was used to code parent statements that specifically related to their experience with members of the healthcare team. As data collection progressed, specific themes emerged, and data corresponding with each theme were categorized within it. Patterns of themes across the year were quantified using pie charts. 25% of the interviews were coded for reliability by another trained coder. Results: Six themes were identified: Rapport, Attentiveness to Child's Care, Respect for Parent's Opinion and Knowledge of Their Child, Effective Communication: Perceived Transparency, Effective Communication: Receptiveness to Parent's Concerns, and Effective Communication Perceived Empathy. Parents' perceptions of their experiences with healthcare professionals were positive and productive when they felt listened to, understood, and treated as active participants in decision making. The most negatively perceived experiences arose when parents felt as if their child's physical well-being was not adequately tended to and when they felt as if health care professionals were not being completely honest with them. Parents also valued the development of a positive working relationship with their child's clinician. This rapport led parents to report that they felt comfortable with their child in the clinician's care. Patterns in data were also analyzed longitudinally, and the most common trend in the valence of the themes was to have either a positive experience or negative experience in the first month of the child's life, and no reported experiences with those specific themes in subsequent months. Conclusions: Findings revealed that parents of infants with CCHD value straightforward, honest communication, respect, and empathy in their relationships with health care professionals. Additional research is needed with a more representative sample in order to be able to develop and test specific interventions and communication strategies appropriate for parents of children with CCHD. Bedside nurses can begin to integrate this knowledge into their individual practice.