Understanding parents' informational needs in the pediatric intensive care unit: A qualitative study

Objective: Information provided to parents in pediatric intensive care units (PICU) is often complex and uncertain. Our objective is to gain a better understanding of parents' informational needs regarding their child's critical illness, and their sources and mechanisms for gaining information. Patients and methods: Parents whose children were discharged from a Midwestern university-affiliated children's hospital PICU in the prior 30 days, and health professionals who worked in the PICU for at least one year were eligible. Semi-structured audio-recorded interviews were conducted, transcribed, and analyzed using established qualitative methods. Results: Of 40 participants, 28 were parents and 12 were health professionals. Types of information needed by parents included information related to their child's PICU stay and hospitalization (e.g., diagnosis, prognosis, treatment plans), and post-discharge care (e.g., home instructions, warning signs, emergency plans). Some parents reported wanting to know everything about their child's condition whereas others reported little to no need for information. Sources of information included health professionals, Internet, family, and other parents. Mechanisms of gaining information included interpersonal interactions between parents and health professionals (e.g., asking questions, rounds, family conferences, modeling, hands-on learning, knowledge testing) and materials that could be viewed independently (e.g., printed materials, parent diaries, videos, white boards, patient portals). Conclusions: Types and amount of information needed by parents of critically ill children are wide ranging and include details of their child's immediate condition and long-term post-discharge care. Parents use many sources and mechanisms to gain health information and most parents use more than one source or mechanism.