Understanding parental consent and trust in paediatric LRTI research: insights from a qualitative study in Indonesia
Vincentia Rizke Ciptaningtyas1,2,3, Tanjung Ayu Sumekar4,5,6, Lathifa Putry Fauzia7
1Department of Microbiology, Faculty of Medicine, Universitas Diponegoro, Jl. Prof. H. Soedarto, Semarang, 50275, SH, Tembalang, Semarang, Indonesia. rizke.ciptaningtyas@radboudumc.nl.
Insights
Indonesian parents view research as vital but require clear communication and trust for child participation in paediatric lower respiratory tract infection (LRTI) studies. Addressing concerns and offering incentives can improve recruitment for essential LRTI research.
Area of Science:
- Paediatric Health Research
- Infectious Disease Epidemiology
- Public Health Policy
Background:
- Paediatric lower respiratory tract infections (LRTI) are a major cause of child mortality in Indonesia.
- Understanding parental perceptions is crucial for advancing LRTI research and reducing child mortality.
- Limited data exists on Indonesian parents' views regarding paediatric LRTI research.
Purpose of the Study:
- To investigate Indonesian parents' perspectives on paediatric LRTI research.
- To identify contextual factors influencing parental consent for LRTI studies.
- To gather recommendations for enhancing recruitment strategies in paediatric research.
Main Methods:
- A qualitative cross-sectional study design.
- Semi-structured interviews conducted with thirteen parents in Semarang, Indonesia.
- Content analysis approach used for data interpretation.
Main Results:
- Parents recognize research benefits but have specific conditions for child participation.
- Concerns include potential harm, child autonomy, and research misunderstandings, acting as barriers to consent.
- Parents suggested improved communication, personalized approaches, incentives, and institutional support for better recruitment.
Conclusions:
- Researchers must address parental knowledge gaps and clearly explain risks and benefits in paediatric LRTI studies.
- Personalized informed consent processes and building trust are essential for effective recruitment.
- Emphasizing research benefits, transparency, and institutional support are key for informed parental decision-making.
Background:
Scientific research is essential to reduce the burden of paediatric lower respiratory tract infections (LRTI), one of the leading causes of death in children under five years of age in Indonesia. However, there is limited knowledge about Indonesian parents' perceptions of research on paediatric LRTI. This study aimed to investigate Indonesian parents' perspectives on paediatric LRTI research based on their contextual factors and identify their recommendations for improved recruitment approaches.
Methods:
A qualitative cross-sectional study was conducted from May 2022 to February 2024 using semi-structured interviews with thirteen parents from Semarang, Indonesia. The data were analysed through a content analysis approach.
Results:
Parents considered research as essential and beneficial to society. However, their willingness to grant permission for their children's participation in a study was contingent on specific conditions. Concerns such as potential emotional or physical harm, interference with children's personal decisions, confinement, fear of being treated as experimental subjects, and misunderstandings about health research acted as deterrents, impeding parental consent for involvement in LRTI research. If parents assess their child as sufficiently mature, they may reconsider their decision. To improve recruitment, parents recommended effective communication, comprehensive explanations in informed consent procedures, a personalised approach, incentives, and institutional support.
Conclusions:
Conducting research on LRTI in children in Indonesia involving specimen collection requires researchers to address parental knowledge regarding the research context, provide comprehensive explanations about potential risks, and offer reassurance on research-related injuries. This necessitates personalised approaches to informed consent, fostering trust, and enhancing recruitment. Emphasising anticipated benefits and securing robust institutional support are essential aspects for researchers. It is important here that researchers emphasise the benefit of enrolling children and maintain transparency and balance by outlining potential risks and uncertainties associated with the research. Only then can parents make informed decisions about participating based on a comprehensive understanding of potential benefits and risks.
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