Exploring Parent Experiences with Early Palliative Care Practices in the Neonatal Intensive Care Unit

Abstract

The anxiety and uncertain outcome of an admission of a seriously ill infant to the neonatal intensive care unit (NICU) can cause great stress for parents. This stress can lead to decreased quality of life and poor mental health outcomes including anxiety, depression, and posttraumatic stress disorder (PTSD), which NICU parents suffer from at higher rates than parents of well infants. Palliative care (PC) is an approach to care that aims to maintain the quality of life for a person and their loved ones by emphasizing value-based decision-making, management of distressing symptoms, and family-centered care. Early implementation of PC emphasizes shared decision-making, care planning, and support for coping with distress. Evidence from pediatric, adult, and perinatal literature supports the use of early PC, but barriers to implementation exist, and NICU PC literature focuses exclusively on end-of-life. Evidence is needed about these three early PC practices from NICU parents in order to develop a parent-centered program of early PC. The purpose of this study was to explore parent experiences with shared decision-making, care planning, and coping with distress during their child’s NICU admission. Qualitative descriptive methodology was used, and strategies of reflexive journaling, peer debriefing, and data audits were used to enhance trustworthiness. Participants were recruited online through email and social media sites of a parent organization. Sixteen individuals participated in semi-structured interviews using videoconferencing technology. Participants also completed an online survey to supply demographic information and describe relevant characteristics of their infants to contextualize the qualitative data and describe the sample. Qualitative data was analyzed with a conventional content analysis approach by coding important phrases and abstracting these to overarching themes. Parents’ descriptions of shared decision-making contained three key aspects of their experience: gathering information to make a decision, the emotional impact of the decision, and influences on their decision-making. In experiences with care planning parents described learning to advocate, having a spectator versus participant role, and experiencing care planning as communication. The key themes expressed regarding parental coping were exposure to trauma, survival mode, and a changing support network. These findings provide practicing clinicians with key areas for improvement: providing more support and collaboration in decision-making, true engagement of parents in care planning, and supporting peer support and interaction in the NICU environment. Implications for research include exploring parent experiences with early PC practices with a more ethnically and culturally diverse sample. Researchers may also further this research by developing and evaluating programs of PC emphasizing early intervention not limited to infants with a terminal diagnosis. Parents’ use of social media should be studied further due to its emerging use as a tool for peer connection and support in the NICU. Limitations of this study include a lack of diversity in sample race or ethnicity and marital status. This study provides a beginning foundation for the work of implementing early PC in the NICU from a parent-centered perspective, emphasizing communication and the building of relationships between parents and clinicians, and parents and researchers to achieve this goal.