Challenges and barriers for systems level lived experience leadership: an action research qualitative analysis

This action research project aimed at understanding the challenges and barriers that established and emerging lived experience leaders experience in their organisational and community contexts. The study reports on qualitative focus groups/online forum with 31 diverse lived experience leader participants and 14 individual interviews with mental health and community service and sector leaders. The data was thematically analysed using a systems change framework which emphasises challenges and barriers relating to policies, practices and resource flows, relationships and power dynamics, and mental models. Themes revealed that leaders face multiple organisational and system level challenges in seeking policy and organisational change through leadership action. Similar themes were apparent in the perspectives of lived experience leaders and service/sector leaders, on challenges relating to organisational settings, however, lived experience leaders described a wider scope of challenges relating to emotional, relational, organisational and community experience than those of sector leaders.

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Publication Details

Journal
Disability & Society
Published
2026-06-18
DOI
https://doi.org/10.1080/09687599.2026.2659108
Primary Topic
Participatory Visual Research Methods
Type
article
Field-Weighted Citation Impact
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article

Challenges and barriers for systems level lived experience leadership: an action research qualitative analysis

Heather McIntyre, Ellie Hodges, Brooke Bickley, Mark Loughhead et al.
Disability & Society
Participatory Visual Research Methods
article

Challenges and barriers for systems level lived experience leadership: an action research qualitative analysis

Heather McIntyre, Ellie Hodges, Brooke Bickley, Mark Loughhead, Nicholas Procter, Anne Barbara, Lee Martinez, Leticia Albrecht, Geoff Harris
article en

Abstract

This action research project aimed at understanding the challenges and barriers that established and emerging lived experience leaders experience in their organisational and community contexts. The study reports on qualitative focus groups/online forum with 31 diverse lived experience leader participants and 14 individual interviews with mental health and community service and sector leaders. The data was thematically analysed using a systems change framework which emphasises challenges and barriers relating to policies, practices and resource flows, relationships and power dynamics, and mental models. Themes revealed that leaders face multiple organisational and system level challenges in seeking policy and organisational change through leadership action. Similar themes were apparent in the perspectives of lived experience leaders and service/sector leaders, on challenges relating to organisational settings, however, lived experience leaders described a wider scope of challenges relating to emotional, relational, organisational and community experience than those of sector leaders.

Disability & Society
University of South Australia (AU), Australian Coal Research (Australia) (AU), Mental Health Australia (AU)
Openalex Percentile: Top 3%
Participatory Visual Research Methods
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