Exploring the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states: a qualitative analysis within a participatory research process
Abstract Background The involvement and engagement of people with lived experience is considered increasingly important in health research. A growing corpus of literature on the involvement of people with lived experience of mental health conditions, including people at psychosis high risk states, c...
Saved in:
| Main Authors: | , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2024-12-01
|
| Series: | BMC Psychiatry |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12888-024-06367-x |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1850133888367591424 |
|---|---|
| author | Melanie Trimmel Antonia Renner Nilufar Mossaheb Fabian Friedrich Alexander Kaltenboeck Josef S. Baumgartner Raphaela E. Kaisler Zsuzsa Litvan The Voice Consortium Barbara Hinterbuchinger |
| author_facet | Melanie Trimmel Antonia Renner Nilufar Mossaheb Fabian Friedrich Alexander Kaltenboeck Josef S. Baumgartner Raphaela E. Kaisler Zsuzsa Litvan The Voice Consortium Barbara Hinterbuchinger |
| author_sort | Melanie Trimmel |
| collection | DOAJ |
| description | Abstract Background The involvement and engagement of people with lived experience is considered increasingly important in health research. A growing corpus of literature on the involvement of people with lived experience of mental health conditions, including people at psychosis high risk states, can be found. This study aims to explore the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states who were involved in a participatory research project. Methods In this study with a combined participatory and qualitative research approach, we used a reflexive thematic analysis approach to systematically analyse open reflection reports from researchers and co-researchers with lived experience of psychosis high risk states, who took part in a participatory research project (VOICE). All participants (n = 12) were asked to anonymously write reflection reports on their subjective experience of participatory research. There were no formal or content-related instructions for writing the reflection reports. Reflection reports provided by eight participants were qualitatively analysed. Results Three themes were identified from the analysis of the reflection reports. First “When uncertainty becomes a unifying element – reflecting on expectations and roles”. Second “Fostering community growth: creating an environment for collaborative teamwork as well as new and creative directions”. Third “Exploring personal and scientific achievements of the project”. At the outset of the research project, the researchers’ focus was on expectations and reflections on their role within the project, accompanied by a feeling of uncertainty. Subsequently, a sense of community developed within a favourable study framework. Finally, attention focused on research project outcomes and personal achievements within the project. Conclusion The analysis of the anonymous reflection reports on a participatory research project indicates that there was a positive collaboration between participants with and without lived experience of psychosis high risk states, wherein they were able to interact on an equal footing. Participants reported an experience of equal cooperation and gained relevant personal insights from project participation. Although we do not have clear evidence of experiences of power imbalances or perceived hierarchies based on the analysed reports, these cannot be ruled out and have to be addressed in future research. |
| format | Article |
| id | doaj-art-01ea19c7886949f7b7d3585a72ab002f |
| institution | OA Journals |
| issn | 1471-244X |
| language | English |
| publishDate | 2024-12-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Psychiatry |
| spelling | doaj-art-01ea19c7886949f7b7d3585a72ab002f2025-08-20T02:31:51ZengBMCBMC Psychiatry1471-244X2024-12-012411910.1186/s12888-024-06367-xExploring the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states: a qualitative analysis within a participatory research processMelanie Trimmel0Antonia Renner1Nilufar Mossaheb2Fabian Friedrich3Alexander Kaltenboeck4Josef S. Baumgartner5Raphaela E. Kaisler6Zsuzsa Litvan7The Voice Consortium8Barbara Hinterbuchinger9Clinical Division of Social Psychiatry, Department of Psychiatry and Psychotherapy, Medical University of ViennaClinical Division of Social Psychiatry, Department of Psychiatry and Psychotherapy, Medical University of ViennaClinical Division of Social Psychiatry, Department of Psychiatry and Psychotherapy, Medical University of ViennaClinical Division of Social Psychiatry, Department of Psychiatry and Psychotherapy, Medical University of ViennaClinical Division of Social Psychiatry, Department of Psychiatry and Psychotherapy, Medical University of ViennaClinical Division of Social Psychiatry, Department of Psychiatry and Psychotherapy, Medical University of ViennaDepartment of Psychology, Bertha von Suttner Private University St. Pölten GmbHESRA Psychosocial CentreClinical Division of Social Psychiatry, Department of Psychiatry and Psychotherapy, Medical University of ViennaClinical Division of Social Psychiatry, Department of Psychiatry and Psychotherapy, Medical University of ViennaAbstract Background The involvement and engagement of people with lived experience is considered increasingly important in health research. A growing corpus of literature on the involvement of people with lived experience of mental health conditions, including people at psychosis high risk states, can be found. This study aims to explore the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states who were involved in a participatory research project. Methods In this study with a combined participatory and qualitative research approach, we used a reflexive thematic analysis approach to systematically analyse open reflection reports from researchers and co-researchers with lived experience of psychosis high risk states, who took part in a participatory research project (VOICE). All participants (n = 12) were asked to anonymously write reflection reports on their subjective experience of participatory research. There were no formal or content-related instructions for writing the reflection reports. Reflection reports provided by eight participants were qualitatively analysed. Results Three themes were identified from the analysis of the reflection reports. First “When uncertainty becomes a unifying element – reflecting on expectations and roles”. Second “Fostering community growth: creating an environment for collaborative teamwork as well as new and creative directions”. Third “Exploring personal and scientific achievements of the project”. At the outset of the research project, the researchers’ focus was on expectations and reflections on their role within the project, accompanied by a feeling of uncertainty. Subsequently, a sense of community developed within a favourable study framework. Finally, attention focused on research project outcomes and personal achievements within the project. Conclusion The analysis of the anonymous reflection reports on a participatory research project indicates that there was a positive collaboration between participants with and without lived experience of psychosis high risk states, wherein they were able to interact on an equal footing. Participants reported an experience of equal cooperation and gained relevant personal insights from project participation. Although we do not have clear evidence of experiences of power imbalances or perceived hierarchies based on the analysed reports, these cannot be ruled out and have to be addressed in future research.https://doi.org/10.1186/s12888-024-06367-xParticipatory researchLived experienceUltra-high risk for psychosisPsychosis high riskService user involvementQualitative research |
| spellingShingle | Melanie Trimmel Antonia Renner Nilufar Mossaheb Fabian Friedrich Alexander Kaltenboeck Josef S. Baumgartner Raphaela E. Kaisler Zsuzsa Litvan The Voice Consortium Barbara Hinterbuchinger Exploring the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states: a qualitative analysis within a participatory research process BMC Psychiatry Participatory research Lived experience Ultra-high risk for psychosis Psychosis high risk Service user involvement Qualitative research |
| title | Exploring the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states: a qualitative analysis within a participatory research process |
| title_full | Exploring the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states: a qualitative analysis within a participatory research process |
| title_fullStr | Exploring the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states: a qualitative analysis within a participatory research process |
| title_full_unstemmed | Exploring the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states: a qualitative analysis within a participatory research process |
| title_short | Exploring the subjective experience of researchers and co-researchers with lived experience of psychosis high risk states: a qualitative analysis within a participatory research process |
| title_sort | exploring the subjective experience of researchers and co researchers with lived experience of psychosis high risk states a qualitative analysis within a participatory research process |
| topic | Participatory research Lived experience Ultra-high risk for psychosis Psychosis high risk Service user involvement Qualitative research |
| url | https://doi.org/10.1186/s12888-024-06367-x |
| work_keys_str_mv | AT melanietrimmel exploringthesubjectiveexperienceofresearchersandcoresearcherswithlivedexperienceofpsychosishighriskstatesaqualitativeanalysiswithinaparticipatoryresearchprocess AT antoniarenner exploringthesubjectiveexperienceofresearchersandcoresearcherswithlivedexperienceofpsychosishighriskstatesaqualitativeanalysiswithinaparticipatoryresearchprocess AT nilufarmossaheb exploringthesubjectiveexperienceofresearchersandcoresearcherswithlivedexperienceofpsychosishighriskstatesaqualitativeanalysiswithinaparticipatoryresearchprocess AT fabianfriedrich exploringthesubjectiveexperienceofresearchersandcoresearcherswithlivedexperienceofpsychosishighriskstatesaqualitativeanalysiswithinaparticipatoryresearchprocess AT alexanderkaltenboeck exploringthesubjectiveexperienceofresearchersandcoresearcherswithlivedexperienceofpsychosishighriskstatesaqualitativeanalysiswithinaparticipatoryresearchprocess AT josefsbaumgartner exploringthesubjectiveexperienceofresearchersandcoresearcherswithlivedexperienceofpsychosishighriskstatesaqualitativeanalysiswithinaparticipatoryresearchprocess AT raphaelaekaisler exploringthesubjectiveexperienceofresearchersandcoresearcherswithlivedexperienceofpsychosishighriskstatesaqualitativeanalysiswithinaparticipatoryresearchprocess AT zsuzsalitvan exploringthesubjectiveexperienceofresearchersandcoresearcherswithlivedexperienceofpsychosishighriskstatesaqualitativeanalysiswithinaparticipatoryresearchprocess AT thevoiceconsortium exploringthesubjectiveexperienceofresearchersandcoresearcherswithlivedexperienceofpsychosishighriskstatesaqualitativeanalysiswithinaparticipatoryresearchprocess AT barbarahinterbuchinger exploringthesubjectiveexperienceofresearchersandcoresearcherswithlivedexperienceofpsychosishighriskstatesaqualitativeanalysiswithinaparticipatoryresearchprocess |