Understanding the Family Context: A Qualitative Descriptive Study of Parent and NICU Clinician Experiences and Perspectives

Abstract

Enabling individualized decision-making for patients requires an understanding of the family context (FC) by healthcare providers. The FC is everything that makes the family unique, from their names, preferred pronouns, family structure, cultural or religious beliefs, and family values. While there is an array of approaches for individual clinicians to incorporate the FC into practice, there is a paucity of literature guiding the process of collecting and integrating the FC into clinical care by multidisciplinary interprofessional teams. The purpose of this qualitative study is to explore the experience of families and Neonatal Intensive Care Unit (NICU) clinicians with information sharing around the FC. Our findings illustrate that there are parallel and overlapping experiences of sharing the FC for families and clinicians. Both groups describe the positive impact of sharing the FC on building and sustaining relationships and on personalization of care and personhood. The experience by families of revolving clinicians and the risks of miscommunication about the FC were noted as challenges to sharing the FC. Parents described the desire to control the narrative about their FC, while clinicians described seeking equal access to the FC to support the family in the best way possible related to their clinical role. Our study highlights how the quality of care is positively impacted by clinicians’ appreciation of the FC and the complex relationship between a large multidisciplinary interprofessional team and the family in an intensive care unit, while also highlighting the difficulties in its practical application. Knowledge learned can be utilized to inform the development of processes to improve communication between families and clinicians.