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Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Australian Mental Health Consumer and Carer Perspectives on Ethics in Adult Mental Health Research (Papers: Alyssa R. Morse, et al | April 2019)

 


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Abstract
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) in-depth 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.

Keywords:
caregiver; carer involvement; consumer involvement; mental health; research ethics; service user

Morse, A. R., Forbes, O., Jones, B. A., Gulliver, A., & Banfield, M. (2019). Australian Mental Health Consumer and Carer Perspectives on Ethics in Adult Mental Health Research. Journal of Empirical Research on Human Research Ethics. https://doi.org/10.1177/1556264619844396
Publisher: https://journals.sagepub.com/doi/abs/10.1177/1556264619844396



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