Is my mum going to hear this? Methodological and ethical challenges in qualitative health research with young people.
Ethical issues arise in all research settings. However, qualitative research with young people raises specific dilemmas that warrant special attention. In this paper we describe an ethical dilemma that arose during a qualitative project we carried out exploring self-management of chronic illness in adolescents. A participant disclosed details of poor adherence with medication, which had significant health implications. Prior to this disclosure he had been assured of confidentiality and thus we found ourselves unsure of how to proceed. Here, we analyse the case in detail, highlighting the ethically important moments, the options for action and the implications of these. We do this with the aim of facilitating ethical mindfulness and thus, ultimately, ethical research practice. As a backdrop to this case we consider the broader ethical context. We find that qualitative research is susceptible to ethical dilemmas because: (1) it is not always possible to predict all possible questions and responses; (2) the nature of the relationship between researchers and participants is amenable to sensitive disclosures; (3) the process of qualitative research can make it difficult for participants to voice concerns or withdraw; and (4) participants' identities are generally known to researchers, complicating boundary issues. Research with young people is susceptible to ethical dilemmas because: (1) young people have limited life experience; (2) consent is often required from both young people and parents; (3) issues of competence can complicate assumptions about informed consent; and (4) the power differential between researchers and participants is significant. When combining qualitative research methods and young participants, the scope for ethical risk is thus substantial.
Centre for Adolescent Health, Royal Children's Hospital, 2 Gatehouse St, Parkville, Victoria 3052, Australia. rony.duncan@mcri.edu.au
Rony E
RE
Duncan
Sarah E
SE
Drew
Jan
J
Hodgson
Susan M
SM
Sawyer
D000293:Adolescent; D002908:Chronic Disease / Q000188:drug therapy; D003219:Confidentiality / Q000941:ethics; D030881:Disclosure / Q000941:ethics; D032984:Ethics, Research; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D055118:Medication Adherence; D026684:Personal Autonomy; D036301:Qualitative Research; D035844:Researcher-Subject Relations / Q000941:ethics*