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What factors are important to parents making decisions about neonatal research?
  1. K S Hoehn1,
  2. G Wernovsky2,3,
  3. J Rychik2,3,
  4. J W Gaynor3,4,
  5. T L Spray3,4,
  6. C Feudtner2,5,
  7. R M Nelson1,2
  1. 1Department of Anesthesiology and Critical Care Medicine, The Children’s Hospital of Philadelphia and the University of Pennsylvania School of Medicine, Philadelphia, PA, USA
  2. 2Department of Pediatrics, The Children’s Hospital of Philadelphia and the University of Pennsylvania School of Medicine
  3. 3Cardiac Center at The Children’s Hospital of Philadelphia
  4. 4Department of Surgery, The Children’s Hospital of Philadelphia and the University of Pennsylvania School of Medicine and Division of Cardiothoracic Surgery at The Children’s Hospital of Philadelphia
  5. 5Pediatric Generalist Research Group, Division of General Pediatrics, The Children’s Hospital of Philadelphia and the University of Pennsylvania
  1. Correspondence to:
    Dr Hoehn
    Department of Anesthesiology and Critical Care Medicine, 9th floor, Main Building, Children’s Hospital of Philadelphia, 34th and Civic Center Boulevard, Philadelphia, PA 19104, USA; hoehnemail.chop.edu

Abstract

Background: Although parents of neonates with congenital heart disease are often asked permission for their neonates to participate in research studies, little is known about the factors parents consider when making these decisions.

Objective: To determine the reasons for parents’ decisions about participation in research studies.

Methods: Qualitative analysis of the unsolicited comments of 34 parents regarding reasons for agreeing or declining to participate in research studies. Parents’ comments were offered spontaneously during interviews about clinical care decisions for neonates with congenital heart disease.

Results: Parents cited five types of reason for or against permitting their newborn to participate in research studies: societal benefit (n  =  18), individual benefit for their infant (n  =  16), risk of study participation (n  =  10), perception that participation posed no harm (n  =  9), and anti-experimentation views (n  =  4).

Conclusion: Addressing parental decision making in the light of these reasons could enhance the parental permission process for parents of critically ill neonates.

  • research ethics
  • parental permission
  • decision making
  • congenital heart disease

https://doi.org/10.1136/adc.2004.065078

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