How much 'lived experience' is enough? Understanding mental health lived experience work from a management perspective

Abstract

ObjectiveThe aim of this study was to explore management understanding of the lived experience required for designated lived experience or peer roles within mental health. MethodThis qualitative study used semi-structured interviews and one focus group with 29 participants employed in diverse management roles from the public and not-for-profit health and community sector in Queensland, Australia. ResultsThe findings indicate a lack of consensus in defining ‘lived experience’, including what lived experience is required to be eligible for designated roles. Although some participants were clear on what designated roles added to the workforce, uncertainty and attempts to avoid stigma led to some participants questioning the need for designated roles. ConclusionThis study suggests the ongoing expansion of the lived experience workforce is affected by challenges in defining ‘lived experience’ as a requirement for designated roles and fears regarding stigmatised identities. What is known about the topic?In the mental health sector, opportunities and challenges exist in attempting to effectively incorporate the emerging lived experience or peer workforce. Research has highlighted the need for support from senior management, the need for role clarity and the risk of ‘othering’ for the lived experience workforce. What does this paper add?This paper responds to the gap in existing research on the experiences of management in defining and articulating their understanding of lived experience and potential impact of uncertainty and inconsistency in understanding for the lived experience workforce. What are the implications for practitioners?This study identifies the need to strengthen management understanding of lived experience to facilitate ongoing development of lived experience roles.

Embedding lived experience into mental health academic research organizations: Critical reflections

“…Stigma considerations and support should be at the forefront, whether developing dedicated lived experience positions or supporting lived experience more broadly, or both. 22 Importantly, we believe that these initiatives should be developed together with lived experience academic researchers themselves, leveraging POR learnings and past successes. 17,18 In developing a lived experience academic research initiative, institutional planners are encouraged to reflect first on their objectives and perspectives on lived experience, then on the ways lived experience might be identified, supported and valued within the organization.…”

“…Based on the sum of the reflections herein, we recommend a focus on developing well‐planned, diversified initiatives, backed by clear objectives and definitions, organizational commitment, researcher support mechanisms and clear risk mitigation strategies. Stigma considerations and support should be at the forefront, whether developing dedicated lived experience positions or supporting lived experience more broadly, or both 22 . Importantly, we believe that these initiatives should be developed together with lived experience academic researchers themselves, leveraging POR learnings and past successes 17,18 …”

“…Herein, when we refer to lived experience, we are inclusive of current and/or past substantial mental health challenges or conditions of considerable psychological distress, generally including one or more psychiatric diagnoses (inclusive of substance use disorders), often driven by multifactorial causality and accompanied by intersecting problems with stigma, discrimination, social determinants of health, impacts on functioning and quality of life and mental health service utilization. 17 , 22 Research institutions may acknowledge the full range of lived experience, from mild to severe, which is a thread throughout an organization, while also considering representation and EDI. Family members can also be included in definitions of lived experience, given the important role they can play in supporting a loved one.…”

The impact of peer support work on the mental health of peer support specialists

“…The literature that does exist observes that the wellbeing of peers may be influenced by the relationships they develop, by the challenges they encounter while managing boundaries, and by the act of reliving personal storied while supporting others [ 23 ]. Along with this knowledge comes concern for the health of people working as peers, especially from colleagues [ 30 ]. Hence, our aim was to determine if and how the peer support worker role impacts the mental health of peer support workers.…”

“A Leader, That’s A Verb”: A Discursive Analysis of Lived Experience Leadership Per its Construction by People with Lived Experience

“…As a consequence, and consistent with previous research ndings, other stakeholders may perceive as leadership and offer support only to practices replicating the status quo 18 . At the same time, without access to the tools required to render their experiences of leadership intelligible to others, people with lived experience may struggle to defend their leadership practices as such; indeed, people with lived experience have reported di culty in defending their practices to other stakeholders as valid and valuable expressions of leadership 19,20 . Support for lived experience leadership as understood by people with lived experience themselves has thus been both denied and misappropriated due to ongoing hermeneutic injustices, interfering with the realisation of lived experience leadership and its associated bene ts.…”