Abstract
BackgroundMental health carers contribute a unique set of perspectives and lived experiences to research; however, national research ethics guidelines do not specifically address the issues that affect informal carers as participants.ObjectiveThis study sought to explore Australian mental health consumer and carer views on the ethical conduct of research involving mental health carers.DesignA public forum (n = 14; consumer = 5, carer = 9) and a subsequent series of interviews (n = 10; consumer = 5, carer = 4, both = 1) were conducted to investigate consumer and carer views on mental health research ethics. Data collection and analysis drew strongly on methodological features of grounded theory.ResultsConducting research involving carers and consumer‐carer relationships raises potential concerns related to story ownership. Lived experience stories have shared and separate elements; thus, it is important to consider potential risks to the privacy of non‐participants and of social harm to participants' relationships when conducting research in this space. These risks could be minimized and managed through communication between researchers and participants, and within relationships.ConclusionsWhen conducting research involving carers and consumer‐carer relationships, researchers may need to facilitate the negotiation of information‐sharing boundaries within relationships and the safe and confidential telling of shared stories.
Highlights
Consistent with the method implemented by Allam and colleagues 11 in which carers were recruited independently without asking the permission of their consumer ‘pair’, evidence from the current study suggests that where research is focused on the experience of the individual, it is beneficial but not necessary to disclose participation within the consumer‐carer relationship
Conducting research involving mental health carers and consumer‐ carer relationships raises ethical issues related to story ownership, including risks of harm to participants' personal relationships and to the privacy or reputation of non‐participants
Research practice in these areas may require a different approach to research involving mental health consumers or the general population
Summary
Australian government policies emphasize a key role for both consumers and carers in the development of mental health services and policy.[1,2] mental health policies often do not clearly distinguish between the needs of consumers and carers, suggesting their needs are similar or can be met through similar initiatives.[1,2,3] Carer participation in research has increased in recent years, spanning areas including lived experiences of caring in different populations,[4,5] interactions with health and mental health services,[6,7,8] support services for carers 9 and the active involvement of carers in research.[10]. A particular area of concern is story ownership: carers have their own unique experiences and a right to participate in research exploring those experiences,[19] but in some cases there may be a perception of interconnectedness with the consumer's story and this raises the possibility of tensions over privacy This situation places participants at risk of harm as defined by the Australian National Statement on Ethical Conduct in Human Research.[18] Where tensions over privacy arise, participants may be at risk of social harm 18; participating in research could damage a carer's relationship with the person they care for. Lived experience stories have shared and separate elements; it is important to consider potential risks to the privacy of non‐participants and of social harm to participants' relationships when conducting research in this space. Conclusions: When conducting research involving carers and consumer‐carer relationships, researchers may need to facilitate the negotiation of information‐sharing boundaries within relationships and the safe and confidential telling of shared stories
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