Challenges in Obtaining Informed Consent in Qualitative Research and Suggestions to Improve It- A Descriptive Qualitative Study
National Journal of Community Medicine, June 2023; 14(06) pp 386-390
Sindhuri, Amol Dongre
Abstract
Introduction
The dynamic and flexible nature of qualitative studies is expected to impose new challenges upon the researchers in obtaining informed consent. The study objectives were to explore the challenges perceived by the researchers in obtaining informed consent in qualitative research and their suggestions to improve it.
Material and Methods
It was a descriptive qualitative study in which In-depth interviews were conducted among ten qualitative researchers purposively selected from one medical college in Puducherry. Transcripts prepared from the audio recordings were thematically analyzed manually.
Results
The challenges identified were inadequate knowledge of the researcher in designing qualitative consent form, reluctance to sign consent document by participant, ensuring confidentiality and risk benefit communication. The main suggestions provided by the participants were to use of multimedia tools to improve their understanding and creating a rapport to enhance their trust to participate in the study.
Conclusions
Since most of the challenges were related to the reluctance of participants to provide consent due to various reasons and lack of adequate knowledge of the researcher, creating a good rapport with the participants and providing simple information through multimedia approaches and ethical training of qualitative researchers will aid us to overcome majority of these challenges.

‘It’s All Public Anyway’: A Collaborative Navigation of Anonymity and Informed Consent in a Study with Identifiable Parent Carers
Pam Joseph
Ethics and Social Welfare, 30 May 2023
Abstract
For qualitative researchers seeking the perspectives of people with unusual characteristics or circumstances, compliance with expectations about participant anonymity can be difficult, if not impossible. In the age of internet communications and emerging research methodologies, traditional strategies require ongoing re-examination to ensure cohesion between a project’s ethical framework and its research practice. This paper reflects on the approach to informed consent used in a study with parent carers whose children had high-level support needs. A two-step process of written consent was developed in response to concerns about the possible re-identification of these parents as a result of their highly individual circumstances. This approach acknowledged the potential for identification, and maximised participants’ agency in choosing the level of risk that they were comfortable to accommodate. The paper discusses the researcher’s and participants’ responses to the adapted consent process and recommends that researchers and ethics review committees remain open to the development of collaborative and innovative approaches that are also culturally and contextually relevant, to enable people to contribute perspectives that might otherwise be silenced by the very ethical frameworks that purport to protect their interests.

Get this thing out of my body! Factors determining consent for translational oncology research: a qualitative research
Research
Desprès Caroline, Mamzer Marie-France
Journal of Translational Medicine volume, 21 May 2023; 21(336)
Open Access
Abstract
Background
Depending on the needs of scientific research at a given time, biobanks make biological samples and data available to researchers. In this article, we aim to describe the reasons and underlying logic that determine the decision to grant or deny consent to the conservation of tumour samples in a biological resource platform for research purposes. We make use of the CARPEM biological resource platform model, where broad consent is required.
Methods
The results are based on semi-structured interviews, conducted between 2019 and 2021, with 25 individuals having various profiles.
Results
All the people interviewed readily accepted the principle of conserving a tumour sample for research purposes. They explained their decision by citing the desire to participate in research dedicated to improving therapeutic medicine. Their trust in research institutions or in doctors was an important factor in their consent. The tumorous nature of the samples also played an important role, as did the absence of constraints. Finally, the high level of consent was also based on the difficulty they had in conceiving what the future risks might be once the sample had been taken, whereas the fact that they did not know the nature or purpose of the research to be carried out when they signed the consent form posed some problems. These results stem from a lack of a culture of ethics among the people interviewed.
Conclusion
The information provided in the context of consent at the CARPEM tumour bank seems inadequate for consent to be considered ‘informed’, given the low level of knowledge that people have of the risks and issues. Information is missing even though we feel it would not change consent or only marginally. This raises questions, since part of the act of granting consent is based on the implicit trust French people have in the hospital that collects the data and in research practices in general. In the minds of those who participate, transparency is the ground on which trust rests. Lack of transparency could be deleterious for future research practices. However, it is not by striving to improve information leaflets that the consent-related information will improve but, rather, by more effectively helping future patients to assimilate that information.