Centre for Mental Health Research, National Centre for Epidemiology and Population Health, The Australian National University, Acton, Australian Capital Territory, Australia.
The ALIVE National Centre for Mental Health Research Translation, The University of Melbourne, The Australian National University, Melbourne, Victoria, Australia.
Health Expect. 2024 Feb;27(1):e13934. doi: 10.1111/hex.13934.
Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research.
Data for this paper were collected in three separate lived experience agenda-setting studies conducted over a 9-year period from 2013 to 2022; two group discussions and an open-ended online survey. Data were combined and thematic analysis undertaken.
Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience.
Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power-sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'.
People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience.
从历史上看，研究人员善于对研究对象进行研究，而不是与研究对象合作。这种方法往往不能有效地支持和惠及他们旨在服务的人群。本研究旨在探讨有过生活经历的人对参与研究的偏好，无论是作为研究中的研究参与者，还是通过积极参与心理健康研究。
本文的数据来自于 2013 年至 2022 年期间进行的三项独立的生活经验设定议程研究；两次小组讨论和一次开放式在线调查。对数据进行了合并和主题分析。
参与者描述了将生活经验纳入研究是至关重要的，这是心理健康研究中最高水平的知识和专长，应该导致知识的产生和研究议程。参与者讨论了使经验和故事得以分享的研究的重要性和价值，表达了对研究方法选择和代理的灵活性的需求，并支持在研究的所有阶段让更多有生活经验的人积极参与。参与者还谈到了需要从有生活经验的人那里获得视角和知识，使他们在研究中有平等的权力，在研究的多个方面为生活经验的声音留出空间，并更加尊重和认可生活经验的价值。
心理健康研究中的生活经验正在崭露头角，但需要专门的、共同创造的发展才能使其正确。有生活经验的人越来越理解他们的经验知识给心理健康研究带来的价值，并描述了研究人员可以支持他们成为研究参与者并积极参与的广泛途径。权力共享、对生活经验的尊重和认可作为有效心理健康研究的核心是“保持真实”的关键。
有心理健康问题或困扰的生活经历的个人，和/或作为照顾者、家庭和亲属群体成员，参与了这项研究的共同构思和共同设计。所有作者都认为自己是有生活经验的人。
