Children’s Decision-Making Involvement About Research Participation: Associations With Perceived Fairness and Self-Efficacy

Abstract

The primary objective of this study was to examine the associations of children’s involvement in decisions about research participation with their perceptions of the decision making process and self-efficacy. Participants were children (ages 8–17) who enrolled in research studies in the prior two months. Children completed a questionnaire that yielded three decision making involvement subscales: Researcher Engages Child; Researcher Supports Autonomy; and Child Participates. Children reported on fairness of the decision making process and health-related decision self-efficacy. After adjusting for age, higher scores on Researcher Engages Child were associated with greater self-efficacy, and higher scores on Researcher Supports Autonomy were associated with greater perceived fairness. These data underscore the potential importance of researcher-child interactions about research participation when assent is sought, including proactively involving children in the decision by asking for their opinions and communicating their central role in the decision, which are likely to be more meaningful to children than receiving information or signing a form.

A pilot study of observed physician–parent–child communication and child satisfaction in a gastroenterology clinic

“…The perceptions survey included three questions that have been previously described. 36 Questions included “How easy was it to understand the information that was discussed during your clinic visit today?”, “How much of a voice did you have in the clinic visit today?”, and “How satisfied are you with communication between you and your doctor today?”. Each item had a four-point Likert-type response scale: not much/not very, a little bit, quite, and very/a lot.…”

“…As a result, the study reports single-item measures, which are more susceptible to random error and lower construct validity, because they are less likely to account for all facets of a construct. 47 However, the single-item measures used have been previously reported to describe children’s perceptions in medical settings, 36 and child satisfaction related to observed participation has rarely been previously measured in any form.…”

Understanding the child-doctor relationship in research participation: a qualitative study

“…More focus on the researcher-child interaction in the decision-making process has been found to be likely to improve children's perception of research and to make it more meaningful [19]. Yet little empirical data is available on how the relationship between children and doctors influences children in research [20].…”

Decision-Making Involvement and Prediction of Adherence in Youth With Type 1 Diabetes: A Cohort Sequential Study

“…Indeed, prior cross-sectional research using a new measure of DMI, called the Decision Making Involvement Scale (DMIS), found that more youth expression of opinions and information during decision-making interactions with parents was associated with better adherence in youth with T1D after controlling for age (Miller & Jawad, 2014). Prior research using the DMIS also found that when children perceived that adults engaged them more in decision-making about research participation, they reported higher decision self-efficacy (Miller, Feudtner, & Jawad, 2017).…”