Australian Mental Health Consumer and Carer Perspectives on Ethics in Adult Mental Health Research

Barriers to research arise when national ethical guidelines governing the inclusion of consumers in mental health research are implemented at the local level. Equivalent guidelines for research involving carers are not available. A social science investigation of Australian mental health consumer an...

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Bibliographic Details
Published in:Journal of empirical research on human research ethics 2019-07, Vol.14 (3), p.234-242
Main Authors: Morse, Alyssa R., Forbes, Owen, Jones, Bethany A., Gulliver, Amelia, Banfield, Michelle
Format: Article
Language:English
Subjects:
Bioethics
Caregivers
Community and Parent Perspectives
Consumers
Ethics
Medical research
Mental health
Research ethics
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Summary:Barriers to research arise when national ethical guidelines governing the inclusion of consumers in mental health research are implemented at the local level. Equivalent guidelines for research involving carers are not available. A social science investigation of Australian mental health consumer and carer perspectives on research ethics procedures was conducted in two interlinked stages: (a) a discussion forum with consumers, carers, and lived-experience researchers and (b) indepth interviews with consumers and carers. Data collection and analysis drew strongly on methodological features of grounded theory. Privacy, confidentiality, and stigmatizing ethics procedures were key issues for consumer and carer participants. Recommendations for research practice include the following: considering the impact of information sharing on participants' relationships and adopting individual-focused approaches to managing research risks.
ISSN:1556-2646
1556-2654
DOI:10.1177/1556264619844396