Understanding parental consent and trust in paediatric LRTI research: insights from a qualitative study in Indonesia.

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.