Active involvement of people with lived experience of suicide in suicide research: a Delphi consensus study
Abstract Background The importance and value of involvement of people with lived experience of suicide has been recognized in suicide research and prevention. Nonetheless, clear guidance on research collaboration and co-production is lacking. This study aimed to address this gap by developing a set...
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-07-01
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| Series: | BMC Psychiatry |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12888-023-04973-9 |
| _version_ | 1797778769063182336 |
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| author | Karolina Krysinska Ingrid Ozols Anna Ross Karl Andriessen Michelle Banfield Martina McGrath Bronwen Edwards Jacinta Hawgood Kairi Kõlves Victoria Ross Jane Pirkis |
| author_facet | Karolina Krysinska Ingrid Ozols Anna Ross Karl Andriessen Michelle Banfield Martina McGrath Bronwen Edwards Jacinta Hawgood Kairi Kõlves Victoria Ross Jane Pirkis |
| author_sort | Karolina Krysinska |
| collection | DOAJ |
| description | Abstract Background The importance and value of involvement of people with lived experience of suicide has been recognized in suicide research and prevention. Nonetheless, clear guidance on research collaboration and co-production is lacking. This study aimed to address this gap by developing a set of guidelines on active involvement of people with lived experience of suicide in suicide studies., i.e., conducting research with or by people with lived experience, rather than to, about or for them. Methods The Delphi method was used to determine statements on best practice for the active involvement of people with lived experience of suicide in suicide research. Statements were compiled through a systematic search of the scientific and grey literature, and reviewing qualitative data from a recent related study conducted by the authors. Two expert panels: people with lived experience of suicide (n = 44) and suicide researchers (n = 29) rated statements over three rounds of an online survey. Statements endorsed by at least 80% of panellists of each panel were included in the guidelines. Results Panellists endorsed 96 out of 126 statements in 17 sections covering the full research cycle from deciding on the research question and securing funding, to conducting research and disseminating and implementing outcomes. Overall, there was a substantial level of agreement between the two panels regarding support from research institutions, collaboration and co-production, communication and shared decision making, conducting research, self-care, acknowledgment, and dissemination and implementation. However, panels also disagreed on specific statements regarding representativeness and diversity, managing expectations, time and budgeting, training, and self-disclosure. Conclusions This study identified consensus recommendations on active involvement of people with lived experience of suicide in suicide research, including co-production. Support from research institutions and funders, and training on co-production for researchers and people with lived experience, are needed for successful implementation and uptake of the guidelines. |
| first_indexed | 2024-03-12T23:21:21Z |
| format | Article |
| id | doaj.art-715d8ccf32a64d7fb3d2f2e728ee851f |
| institution | Directory Open Access Journal |
| issn | 1471-244X |
| language | English |
| last_indexed | 2024-03-12T23:21:21Z |
| publishDate | 2023-07-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Psychiatry |
| spelling | doaj.art-715d8ccf32a64d7fb3d2f2e728ee851f2023-07-16T11:24:21ZengBMCBMC Psychiatry1471-244X2023-07-0123111510.1186/s12888-023-04973-9Active involvement of people with lived experience of suicide in suicide research: a Delphi consensus studyKarolina Krysinska0Ingrid Ozols1Anna Ross2Karl Andriessen3Michelle Banfield4Martina McGrath5Bronwen Edwards6Jacinta Hawgood7Kairi Kõlves8Victoria Ross9Jane Pirkis10Centre for Mental Health, Melbourne School of Population and Global Health, The University of Melbournementalhealth@workCentre for Mental Health, Melbourne School of Population and Global Health, The University of MelbourneCentre for Mental Health, Melbourne School of Population and Global Health, The University of MelbourneCentre for Mental Health Research, Australian National UniversityCentre for Mental Health, Melbourne School of Population and Global Health, The University of MelbourneRoses in the OceanThe Australian Institute for Suicide Research and Prevention, School of Applied Psychology, Griffith UniversityThe Australian Institute for Suicide Research and Prevention, School of Applied Psychology, Griffith UniversityThe Australian Institute for Suicide Research and Prevention, School of Applied Psychology, Griffith UniversityCentre for Mental Health, Melbourne School of Population and Global Health, The University of MelbourneAbstract Background The importance and value of involvement of people with lived experience of suicide has been recognized in suicide research and prevention. Nonetheless, clear guidance on research collaboration and co-production is lacking. This study aimed to address this gap by developing a set of guidelines on active involvement of people with lived experience of suicide in suicide studies., i.e., conducting research with or by people with lived experience, rather than to, about or for them. Methods The Delphi method was used to determine statements on best practice for the active involvement of people with lived experience of suicide in suicide research. Statements were compiled through a systematic search of the scientific and grey literature, and reviewing qualitative data from a recent related study conducted by the authors. Two expert panels: people with lived experience of suicide (n = 44) and suicide researchers (n = 29) rated statements over three rounds of an online survey. Statements endorsed by at least 80% of panellists of each panel were included in the guidelines. Results Panellists endorsed 96 out of 126 statements in 17 sections covering the full research cycle from deciding on the research question and securing funding, to conducting research and disseminating and implementing outcomes. Overall, there was a substantial level of agreement between the two panels regarding support from research institutions, collaboration and co-production, communication and shared decision making, conducting research, self-care, acknowledgment, and dissemination and implementation. However, panels also disagreed on specific statements regarding representativeness and diversity, managing expectations, time and budgeting, training, and self-disclosure. Conclusions This study identified consensus recommendations on active involvement of people with lived experience of suicide in suicide research, including co-production. Support from research institutions and funders, and training on co-production for researchers and people with lived experience, are needed for successful implementation and uptake of the guidelines.https://doi.org/10.1186/s12888-023-04973-9Co-productionConsumersDelphi studyGuidelinesLived experience of suicideSuicide research |
| spellingShingle | Karolina Krysinska Ingrid Ozols Anna Ross Karl Andriessen Michelle Banfield Martina McGrath Bronwen Edwards Jacinta Hawgood Kairi Kõlves Victoria Ross Jane Pirkis Active involvement of people with lived experience of suicide in suicide research: a Delphi consensus study BMC Psychiatry Co-production Consumers Delphi study Guidelines Lived experience of suicide Suicide research |
| title | Active involvement of people with lived experience of suicide in suicide research: a Delphi consensus study |
| title_full | Active involvement of people with lived experience of suicide in suicide research: a Delphi consensus study |
| title_fullStr | Active involvement of people with lived experience of suicide in suicide research: a Delphi consensus study |
| title_full_unstemmed | Active involvement of people with lived experience of suicide in suicide research: a Delphi consensus study |
| title_short | Active involvement of people with lived experience of suicide in suicide research: a Delphi consensus study |
| title_sort | active involvement of people with lived experience of suicide in suicide research a delphi consensus study |
| topic | Co-production Consumers Delphi study Guidelines Lived experience of suicide Suicide research |
| url | https://doi.org/10.1186/s12888-023-04973-9 |
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