Acceptability by Parents and Children of Deception in Pediatric Research

Abstract

Objective: Deception has been used to investigate the role of developmental and behavioral factors in child health; however, its acceptability for use in pediatric research has received little empirical attention. This study examined the acceptability of deception in a pediatric pain research study as assessed via participating children's and parents' long-term perceptions of its use.Method: Ninety-four children (52 boys; M age = 12.77 years) and their parents (86 mothers, 8 fathers) completed a structured interview that assessed perceptions of various aspects of deception in a pediatric pain study, two and a half years after participating.Results: A minority of parents (25.5%) and children (13.8%) spontaneously recalled that deception was used. Overall, parents and children reported positive experiences with research participation, felt comfortable with the debriefing process, and deemed the research to be of societal importance. Opinions about researchers and psychologists were not negatively impacted and most reported willingness to participate in research involving deception again. Conclusion:When thoughtfully planned and disclosed, deception in pediatric research appears to be acceptable to parents and children. Future research should further examine the acceptability of deception and alternatives (e.g., authorized deception) among pediatric samples.

Impact of Threat Level, Task Instruction, and Individual Characteristics on Cold Pressor Pain and Fear among Children and Their Parents

“…Generally, parents and children were highly satisfied with their experience participating in this research, regardless of which experimental manipulations they received, indicating that the use of either of the manipulations would be appropriate in future research as needed for the experimental design. Researchers are increasingly acknowledging the importance of assessing parents' and children's perceptions of laboratory‐based methods for determining their ethical acceptability, and the present study is the first to examine this in the context of increasing the threat value of the experimental pain task.…”

“…Previous research has employed a social stress task, in which the children were given socially threatening information, to safely increase children's anticipatory anxiety prior to completion of the CPT. While this procedure was effective at increasing state anxiety and did not negatively influence parents' and children's overall experiences taking part in the research, immediate pain outcomes were not impacted. Other researchers have modified parental expectations about other experimental pain tasks (eg, heat) by providing parents of children participating in the task with threat‐related information that increased parents' state catastrophic thinking and feelings.…”

Home-Based Pediatric Palliative Care and Electronic Health: Systematic Mixed Methods Review

“…Although we determined that children's voices were absent, this review indicates that eHealth technology may potentially support communication between these children and HCP without their parents' presence and subsequently facilitate the child's autonomy. This detail is particularly important as previous research suggests that a child wants to be actively included in both his or her own care [45,46] and any decisions related to his or her health and care [47][48][49].…”

A possibility for strengthening family life and health: Family members’ lived experience when a sick child receives home care in Sweden

“…Thus, the family, defined as “a social context consisting of at least two persons characterised by mutual attachment, caring, long‐term commitment and responsibility” (Craft & Willadsens, , p. 519), is affected by the child's illness (Hallstrom & Elander, ). Sick children often can and want to be active partners in their own care (Schalkers, Dedding, & Bunders, ; Soderback, ) and should be enabled to participate in decisions on, and accomplishment of, care (Coyne, Hallstrom, & Soderback, ; Noel et al., ; United Nations of Human Rights, ; Wendler & Jenkins, ). Sick children have expressed increased fear and worry (Ekra & Gjengedal, ), decreased autonomy (Coyne, ) and feelings of boredom (Wilson, Megel, Enenbach, & Carlson, ) during hospital stays and their siblings have expressed feelings of worry and of being left out when hospital admissions split the family (Wilkins & Woodgate, ).…”