Parental Attitudes Regarding Research

Nabulsi M, Khalil Y, Makhoul J. Parental attitudes towards and perceptions of their children’s participation in clinical research: a developing-country perspective. Journal of Medical Ethics. 2010.

Researchers at the American University in Beirut (AUB) investigated the perceptions and attitudes of parents towards the participation of their children in research. Acting as their legal guardians; parents are the sole decision makers regarding research participation. Since barriers to children’s recruitment into clinical trials might be due to parental misconceptions about aspects of research, these Lebanese researchers wanted to better understand parental fears, concerns, and preconceived ideas about clinical research. Using a qualitative research approach, the researchers conducted 33 in-depth interviews and with parents presenting to the AUB. Analysis of the transcripts revealed the main barriers to parental consent to children’s enrolment included a) fear of possible harm to their children, b) anxiety and misunderstanding regarding the process of randomization, and c) the requirement of having to sign a complex informed consent form. The presence of trust in the physician or institution or the belief that there would be direct benefits to the child facilitated the giving of informed consent. The authors recommend that improving communications with parents regarding the research process and simplification of consent forms.

It is worth noting that similar results were obtained in earlier studies conducted in Egypt (Khalil S, Silverman HJ, Raaft M, et al; Attitudes, understanding, and concerns regarding medical research amongst Egyptians: A qualitative pilot study. BMC Medical Ethics. 2007; and Wazaify M, Khalil S, Silverman HJ; Expression of therapeutic misconception amongst Egyptians: a qualitative pilot study, BMC Medical Ethics. 2009). Also using in-depth interviews, these investigators explored the attitudes of 15 adults regarding participation in research. Khalil and associates found that although all individuals valued the importance of medical research, most would not participate in research that involved more than minimal risk. Specifically, individuals were comfortable with studies involving surveys and blood sampling, but many viewed drug trials as being too risky. Also, many participants had discomfort with or difficulty in the understanding several research concepts: randomization, double-blind, and clinical equipoise. Finally, trust in the physicians performing research was important in deciding to participate in clinical research.

Using the same data set, Wazaify and colleagues found many instances of the Therapeutic Misconception expressed by the participants in the survey study. The presence of a Therapeutic Misconception is defined when participants either failed to distinguish between clinical care and research or had unreasonable expectations of benefits in a research setting. The AUB study did not specifically elaborate on the extent of therapeutic misconceptions held by parents. However, in their published study, they provide the following quote from one of the parents: “I support research and if it is for children, then OK, provided children will benefit and there are no side effects or problems…” [italics and bold added]. This quote supports the concern that many parents might harbor the therapeutic misconception when it comes to enrolling their children into research. The presence of such a therapeutic misconception has serious implications on the presence of a valid, informed consent. The AUB investigators might want to further analyze their data and quantify the existence of a therapeutic misconception.

Article can be accessed by clicking here: Parental Attitudes Towards Children Participation in Research

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