Factors Related to Voluntary Parental Decision-Making in Pediatric Oncology

Abstract

WHAT'S KNOWN ON THIS SUBJECT: Valid parental permission requires that the decision be both informed and voluntary. Previous research has focused on the informational components of decision-making (eg, disclosure and understanding), with little empirical attention to the voluntariness of decisions. WHAT THIS STUDY ADDS:We address this gap by examining the voluntariness of parents making research or treatment decisions in pediatric oncology. We identify demographic and contextual correlates of voluntariness and highlight the clinical implications of the findings for physicians and investigators.abstract OBJECTIVE: The aim of the current study was to examine demographic and contextual correlates of voluntariness in parents making research or treatment decisions for their children with cancer. METHODS:Participants included 184 parents of children with cancer who made a decision about enrolling the child in a research or treatment protocol within the previous 10 days. Parents completed questionnaires that assessed voluntariness, external influence by others, concern that the child' s care would be negatively affected if the parent did not agree, time pressure, information adequacy, and demographics.RESULTS: Lower perceived voluntariness was associated with lower education, male gender, minority status, and not having previous experience with a similar decision. Parents who reported lower voluntariness also perceived more external influence and time pressure, had more concern about the child' s care being negatively affected if they declined, and perceived that they had either too much or not enough information about the decision. In a multivariate regression, education, minority status, gender, external influence, and too little information remained significantly associated with voluntariness.CONCLUSIONS: Several groups of parents appear to be at risk for decreased voluntariness when making research or treatment decisions for their seriously ill children, including fathers, nonwhite parents, and those with less education. Parental voluntariness may be enhanced by helping parents to mitigate the effects of unhelpful or unwanted influences by others and ensuring that their information needs are met. Pediatrics 2012;129:903-909

Ethical issues of clinical trials in paediatric oncology from 2003 to 2013: a systematic review

“…Appropriate information requires to establish a true dialogue and communication process (not a mere transmission), 1,33,34 allowing to tailor information and secure its meaning. 7,20,35,36 Family needs shall guide this dialogue; 30,37,38 only one parental preference cannot be accommodated: the wish not to be informed.…”

“…They mostly focus on interventions which might improve quality of parental consent (stepwise approach, nurses, leaflets, videos, individual or family conference). 32,36,38,39,[42][43][44] Only two alternatives to standard consent settings are addressed: 1° 'staged' consent (to obtain consent to randomisation at distance from inclusion) 20 and 2° 'differed' consent in emergency-like situations (waiver of consent at inclusion). 19 Closer attention is paid to the following issues: voluntariness of participation, impact that seeking consent can have on patients and parents, and family dynamics.…”

Breaking down barriers to communicating complex retinoblastoma information: can graphics be the solution?

“…Retinoblastoma education using graphics-Chiu et al levels were associated with lower perceived voluntariness. 19 It also has implications on clinicians. In a study analyzing informed decision-making among adults with lower education level, the group randomized to using a decision aid attained adequate knowledge to make an informed choice for bowel cancer screening compared with the control group using the standard government information.…”

Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients

“…Previous studies investigating parental and young adult preferences for informed consent in clinical trials in pediatric oncology settings have demonstrated that participants generally prefer: (1) to receive more information but risk feeling overwhelmed with the quantity or pace of information provided; (2) that the information be presented in a stepwise and organized manner; and (3) to be given sufficient time to process the information, especially in the context of their emotional state, before making a decision [1,2]. The presentation of additional audio or visual learning materials is also suggested [1].…”