Whose story is it? Mental health consumer and carer views on carer participation in research

Health Expectations

Alyssa R. Morse¹  Bethany A. Jones¹  Owen Forbes¹  Michelle Banfield¹  Amelia Gulliver¹ 

[1]ACACIA: The ACT Consumer and Carer Mental Health Research Unit, Centre for Mental Health Research, Research School of Population Health The Australian National University Canberra Australian Capital Territory Australia

关键词: caregivers;    carers;    consumer involvement;    consumer participation;    ethics;    mental health;   

DOI  :  10.1111/hex.12954

来源: DOAJ

【 摘 要 】

Abstract Background Mental 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. Objective This study sought to explore Australian mental health consumer and carer views on the ethical conduct of research involving mental health carers. Design A 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. Results Conducting 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. 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.

【 授权许可】

Unknown