Community consultation for inpatient resuscitation research can be conducted in a children's hospital, with hospital staff and parents of patients as the relevant community. Exception from informed consent is necessary and appropriate for a randomized trial of induced hypothermia begun within 30 minutes after pediatric cardiac arrest. A process in which families are informed prospectively and have a pre-enrollment option to decline participation will likely be acceptable to families, health care providers, and the institution.

Objective This study examined parental beliefs about participating in clinical trials involving greater than minimal risk to their neonate, and explored their views of their experiences. Study Design In this qualitative descriptive study, parents in the neonatal intensive care unit (NICU) who had been approached for permission for their neonates to be enrolled in research were asked to describe their decisions about their consent for or disagreement to their neonate’s research participation. A total of 27 parents from three different hospital NICUs in the Mid-Atlantic region of the United States participated. Transcribed interviews were analyzed using qualitative content analysis. Results Participant decisions developed through a dynamic process of meaning-making based on their beliefs about themselves and their neonates. The processes involved making sense of the chaos that they perceived in the environment and their own vulnerability, through taking control of their situation.

It would be useful to researchers and bioethicists to know more about parents’ decision processes and emotional state during the time they are deciding whether to enroll their infant in a clinical trial. The aim of this research study was to discover whether parents who had been previously asked to enroll their neonates in clinical trials would have found concurrent research about their decision-making overly burdensome. Twenty-seven parents of critically ill neonates who had been approached for their child’s research participation in a clinical trial were asked what they believed about the potential burden or value of being interviewed during the time of research decision-making about their infant’s participation. For this qualitative descriptive study, interviews were audio-recorded, transcribed, and analyzed using content analysis techniques. Participants considered concurrent research acceptable for them but potentially problematic for others. Theories of risk preferences and social comparison might explain these findings.

Communication between parents and professionals in the NICU is a necessary part of collaborative decision making in the provision of family-centered care. Decisions with ethical components, those regarding treatment plans or neonatal research enrollment, need to be made conjointly with parents and health care professionals. This article reviews the present state of knowledge of how parents' input can be facilitated in regard to decisions made about their children. Research studies involving decisions made with ethical components in the NICU since the advent of the Baby Doe regulations reveal parents' frustration with communication practices, their need for control of information, and the trust in their children's health care providers that is required to best facilitate their input into ethical decisions made about their children.

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Ethics consultation is a familiar concept to clinicians, and there are site-specific guidelines detailing procedures for both obtaining and performing these consults. Evaluative data about clinician experiences with ethics consults are becoming more extensive but information about family experiences, especially parent perceptions, of the same is lacking. Without a better understanding of those family experiences, an evidence base for ethics consultations cannot be built. This manuscript describes the reasons for obtaining this necessary information, details prior research designed to obtain knowledge about family experiences with pediatric ethics consultations, and suggests mechanisms for acquiring it.

This study analyzes the expectations that incoming students and faculty bring to accelerated pre-licensure education programs for second-degree students. Although research supports the congruence of expectations between students and faculty as essential to learning, anecdotal evidence and single case reports suggest there may be important discrepancies in expectations of second-degree students and their faculty. Data are intended to support curriculum review, refinement, and innovation in these programs.