Integrating Parents in Neonatal and Pediatric Research.

BACKGROUND: Parents and their infants are the beneficiaries of neonatal and pediatric research, but in the past they have been excluded from most stages of research projects. As a result, many projects may fail to produce the most worthwhile information for parents and families. Lately, veteran resource parents and patients have been increasingly integrated in research initiatives. METHODS: Benchmarking of neonatal and pediatric research initiatives where resource parents and/or ex neonatal patients have helped to optimize pediatric research. We review ways in which resource parents/patients can be involved in research, with examples and practical ideas of how to proceed. RESULTS: Resource parents/patients can be collaborators in research and be integrated in many steps: prioritizing research projects, designing trials, determining the outcomes of interest, ethics review, developing and improving consent procedures, collection and interpretation of data, participation in data safety monitoring committees, publication of results, and presentation to peer groups. Some of the strategies for integration of stakeholders in clinical research are more complex, may involve risk and require more training than others. CONCLUSION: We suggest that groups wanting to involve parents in their research endeavors start with simpler tasks that entail less risk and develop teams of resource parents who have differing interests and abilities. Quality control of programs is essential, such as frequently giving and obtaining feedback from resource parents/patients and researchers. In the future, integration of resource parents/patients into every step of clinical research will be essential to ensure that parent and family important outcomes are examined.

The best-interest standard is not applied for neonatal resuscitation decisions.

OBJECTIVE: Legal and ethical standards require resuscitation when it is considered to be in the patient's best interest. We hypothesized that newborn infants might be dealt with according to different standards, compared with older patients. METHODS: An anonymous questionnaire describing 8 currently incompetent patients with potential neurologic sequelae who required resuscitation was administered to groups of physicians and students. Survival and morbidity rates were explicitly described; a very preterm infant, a full term infant and a 2-month-old infant had identical outcomes. Two patients, a 7-month-old infant and an 80-year-old patient, were previously significantly impaired. Respondents were asked whether resuscitation was in the patient's best interest and whether they would comply with the families' wishes if resuscitation was refused. RESULTS: There was an 85% response rate (n = 524). The largest proportions of respondents stated that it was in the best interests of the 2-month-old infant and the 7-year-old child to be resuscitated (97% and 94%, respectively), followed by the 50-year-old patient and the term infant (87%), the 2 patients with 5% chance of survival (76% and 80%), the premature infant (69%), and finally the 80-year-old patient (32%). Approximately one fifth of the respondents who thought that it was in a patient's best interests to be resuscitated would nevertheless accept the family's refusal of resuscitation for all scenarios except the 80-year-old patient (72% acceptance) and the preterm infant (54% acceptance). CONCLUSIONS: Whether resuscitation is considered in a patient's best interests is not closely related to survival rates or disability. Newborn infants and particularly preterm infants are systematically devalued, in comparison with older patients whose outcomes are the same or worse. Accepting a family's refusal of resuscitation, even among respondents who thought that resuscitation was in the patient's best interest, was much more common for the newborns.