‘It’s All Public Anyway’: A Collaborative Navigation of Anonymity and Informed Consent in a Study with Identifiable Parent Carers

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.

KEYWORDS:

• Anonymity
• consent
• collaborative ethics
• parent carers

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Notes on contributors

Pam Joseph

Pam Joseph. With qualifications in nursing and social work, Pam Joseph's research interests span intersecting aspects of care, community and complexity. Prior to her academic career, Pam worked for a small peer-led genetic support group, an experience that led to her doctoral studies into the relationships between individuals, families, and complex formal support systems.