Parental attitudes towards and perceptions of their children's participation in clinical research: a
Mona Nabulsi1, Yvette Khalil, Jihad Makhoul
1Department of Pediatrics and Adolescent Medicine, American University of Beirut Medical Center, Beirut, Lebanon. mn04@aub.edu.lb
Insights
Parental understanding of clinical trials is key for child recruitment. Lebanese parents
Area of Science:
- Clinical Research
- Paediatric Trials
- Health Sciences
Background:
- Paediatric clinical research faces recruitment challenges, often due to parental misconceptions.
- A knowledge gap exists regarding parental perceptions in developing countries.
- Understanding parental attitudes is crucial for effective child participant enrolment.
Purpose of the Study:
- To explore Lebanese parents' perceptions and attitudes towards their children's participation in clinical trials.
- To identify factors influencing parental consent in paediatric research.
Main Methods:
- 33 in-depth interviews were conducted with parents.
- Interviews were recorded, transcribed in colloquial Arabic, and thematically analyzed.
- Explored experiences of parents with and without prior research involvement.
Main Results:
- Parental consent decisions were influenced by benefit/risk assessment and fear of adverse events.
- Factors facilitating consent included perceived direct benefit, trust, financial incentives, and positive prior experiences.
- Complex informed consent forms and misunderstanding 'randomisation' hindered participation.
Conclusions:
- Lebanese parents' views on paediatric trial participation align with those in industrialized nations.
- Improving researcher-parent communication and trust is vital for successful recruitment.
- Simplifying consent forms and clarifying 'randomisation' are essential for trials in developing countries.
Background:
Paediatric clinical research faces unique challenges that compromise optimal recruitment of children into clinical trials. A main barrier to enrolment of children is parental misconceptions about the research process. In developing countries, there is a knowledge gap regarding parental perceptions of and attitudes towards their children's participation in clinical trials.
Objective:
To explore such perceptions and attitudes in Lebanese parents.
Study Design:
33 in-depth interviews were conducted with parents with and without previous research experience. Interviews were tape-recorded, transcribed in colloquial Arabic, and later subjected to thematic analysis.
Results:
Benefit/risk ratio assessment was a major determinant of parental consent. Fear of adverse events or painful procedures in research was a recurring theme in most interviews. Whereas perception of direct benefit to the child, trust in the physician or institution, financial gains or having a positive previous experience in research facilitated consent, a complex informed consent form and misunderstanding of the term 'randomisation' hindered parental approval of participation.
Conclusion:
Lebanese parents have perceptions of and attitudes towards children's participation in clinical trials that are similar to those reported from the industrialised world. Improving communication with parents and building trust between researchers and parents is important for successful recruitment. Investigators planning to conduct paediatric trials in developing countries need to simplify consent forms and devise new ways to explain randomisation.
More Related Videos
Related Concept Videos
01:27Parenting Styles
Authoritarian Parenting
This style is strict and controlling, with little room for open dialogue. Authoritarian parents demand obedience and often enforce rules with minimal warmth. Children raised this way may lack social skills and initiative, usually comparing themselves to others unfavorably.
Authoritative Parenting
This...
02:16Surveys
01:56Ethics in Research
01:30Socioemotional Experience and Gender Development
01:11Clinical Trials: Overview
01:23Types of Biopharmaceutical Studies: Controlled and Non-Controlled Approaches
Non-controlled studies, commonly employed for initial exploration, lack a control group, rendering them susceptible to biases and external influences. In contrast, controlled...