Evaluating the impact of patient and carer involvement in suicide and self‐harm research: A mixed‐methods, longitudinal study protocol

Littlewood, Donna L; Quinlivan, Leah; Steeg, Sarah; Bennett, C. Susanne; Bickley, Harriet; Rodway, Cathryn; Webb, Roger T.; Kapur, Navneet

doi:10.1111/hex.13000

Cited by 14 publications

(14 citation statements)

References 25 publications

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“…For instance, the present study invited the contributor to recount experiences of suicide, violence and incarceration as part of the analysis, all of which may have been distressing. In line with previous research which has involved people with lived-experience, [45][46][47] a number of provisions were put in place to ensure the well-being of both academic researchers and the contributor. Namely, academic researchers who were clinically trained were always contactable at times of meetings, to ensure that any emotional distress was handled appropriately.…”

Section: Reflec Tionsmentioning

confidence: 99%

Involving an individual with lived‐experience in a co‐analysis of qualitative data

Hemming

Pratt

Bhatti

et al. 2021

Health Expectations

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Background People with lived‐experience of the phenomenon under investigation are seldom involved in the analysis of qualitative data, and there exists little guidance for those wishing to involve contributors at this stage of research. Aims To critically reflect on the process of involving people with lived‐experience in a thematic analysis and to offer direction to other researchers. Methods An individual with lived‐experience of residing in prison contributed to a co‐analysis of qualitative data using thematic analysis. This paper reports on involvement at each stage of a thematic analysis and follows an established reporting checklist. Results A number of challenges and benefits were encountered in the process of co‐analysing the data. These are discussed in relation to previous research and how to overcome the challenges encountered. Conclusions The paper concludes by giving recommendations and guidance for future researchers wishing to involve people with lived‐experience in qualitative data analysis.

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Section: Reflec Tionsmentioning

confidence: 99%

Involving an individual with lived‐experience in a co‐analysis of qualitative data

Hemming

Pratt

Bhatti

et al. 2021

Health Expectations

View full text Add to dashboard Cite

show abstract

“…Our project involved people with lived suicide experience and thus touched the eld of clinical research, but the focus of the project was antistigma work and developing an online program. To our knowledge, little is reported about the involvement of persons with lived suicide experience in research projects (43) and also about peer specialists in suicide prevention in mental health care services (58). From a clinical perspective, persons with a lived suicide experience should be involved in all stages of treatment development (42).…”

Section: Discussionmentioning

confidence: 99%

“…This may be attributed to the fact that suicidality is an extremely sensitive topic and is therefore generally often de ned as a study exclusion criterion (for both persons involved in research and for participants), and that suicidality as a complex phenomenon can be de ned less clearly on the basis of a categorial diagnosis such as a mental illness (42). Littlewood and colleagues (43) recently published a study protocol on evaluating the impact of patient and carer involvement in suicide and self-harm research where they also reported on two studies involving persons with a lived suicide experience: 1. ex-prisoners for research in suicide prevention in prisons (44) and 2. men attended hospital emergency department after self-harm (45).…”

Section: Aim Of Involvement Of People With Lived Experience In Researchmentioning

confidence: 99%

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Development of an online suicide prevention program involving people with lived experience: ideas and challenges

Dreier

Baumgardt

Böck

et al. 2021

Preprint

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Background Fear of stigmatization, self-stigmatization, and insufficient information can lead to secrecy, reduced help-seeking, lower self-esteem, and lower self-efficacy among people affected by suicidality or suicide. Therefore, we developed an online suicide prevention program aiming to improve knowledge about suicidality and suicide stigma. Methods Inspired by the Australian program The Ripple Effect, a German team comprising people with lived suicide experience, researchers, and clinicians was established for developing an online suicide prevention program. Therefore, we oriented on guidelines for evidence-based health information, for reporting on suicide, and on dealing with suicidality. The lived experience team discussed and developed concept, structure, and content of the program. This manuscript presents summaries of protocols from 16 team meetings and 3 written text reviews to outline the program development process. A summative evaluation 3 years after program development began is qualitatively analyzed based on thematic analysis. Results Between 2018 und 2021, the lived experience team (n = 10) discussed possibilities of support in suicidal crises, attitudes towards suicide, content, and design of the online program. In a structured process, six members of the lived experience team reviewed the content. Eight persons shared their lived suicide experience in video reports by focusing on constructive ways of dealing with suicidality or a loss by suicide, conveying hope and encouraged people to continue living. Team members recommended greater public and patient involvement from the application stage, as well as more financial and personnel resources. Conclusions Through contributions to discussions and text reviews, the lived experience team shaped decisions in the program development process. While involving persons with lived suicide experience, it is important to consider that suicidality is 1. emotionally challenging, 2. a stigmatized issue, and 3. that the aspect of safety must be a priority. A distinction must be made between the duty of care based on actual risk and inappropriate overprotection. Hereby, transparency, autonomy, and a clear structure appeared to be helpful. For further research, we recommend a structured formative review process of the development of the program. We recommend discussing the purpose and the specific design of the evaluation with a lived experience team in advance. Trial registration German Clinical Trial Register DRKS00015071 on August 6, 2018.

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“…This may be attributed to the fact that suicidality is an extremely sensitive topic and is therefore generally often defined as a study exclusion criterion (for both persons involved in research and for participants), and that suicidality as a complex phenomenon can be defined less clearly on the basis of a categorial diagnosis such as a mental illness [44]. Littlewood and colleagues [45] recently published a study protocol on evaluating the impact of patient and carer involvement in suicide and self-harm research where they also reported on two studies involving persons with a lived experience of suicide: 1. ex-prisoners for research on suicide prevention in prisons [46] and 2. men attending hospital emergency department after self-harm [47].…”

Section: Aim Of Involvement Of People With Lived Experience In Researchmentioning

confidence: 99%

Development of an online suicide prevention program involving people with lived experience: ideas and challenges

et al. 2021

View full text Add to dashboard Cite

Background Fear of stigmatization, self-stigmatization, and insufficient information can lead to secrecy, reduced help-seeking, lower self-esteem, and lower self-efficacy among people affected by suicidality or suicide. Therefore, we developed an online suicide prevention program aiming to improve knowledge about suicidality and suicide stigma. Methods Inspired by the Australian program The Ripple Effect, a German team comprising people with lived experience of suicide, researchers, and clinicians was established for developing an online suicide prevention program. Therefore, we oriented on guidelines for evidence-based health information, for reporting on suicide, and on dealing with suicidality. The lived experience team discussed and developed concept, structure, and content of the program. This manuscript presents summaries of protocols from 16 team meetings and 3 written text reviews to outline the program development process. A summative evaluation 3 years after program development began was qualitatively analyzed based on thematic analysis. Results Between 2018 und 2021, the lived experience team (n = 10) discussed possibilities of support in suicidal crises, attitudes towards suicide, content, and design of the online program. In a structured process, six members of the lived experience team reviewed the content. Eight persons shared their lived experience of suicide in video reports by focusing on constructive ways of dealing with suicidality or a loss by suicide, conveying hope and encouraging people to continue living. Team members recommended greater public and patient involvement from the application stage, as well as more financial and personnel resources. Conclusions Through contributions to discussions and text reviews, the lived experience team shaped decisions in the program development process. While involving persons with lived experiences of suicide, it is important to consider that suicidality is 1. emotionally challenging, 2. a stigmatized issue, and 3. that the aspect of safety must be a priority. A distinction must be made between the duty of care based on actual risk and inappropriate overprotection. Hereby, transparency, autonomy, and a clear structure appeared to be helpful. For further research, we recommend a structured formative review process of the development of the program. Additionally, we recommend discussing the purpose and the specific design of the evaluation with a lived experience team in advance. Trial registration German Clinical Trial RegisterDRKS00015071 on August 6, 2018.

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Evaluating the impact of patient and carer involvement in suicide and self‐harm research: A mixed‐methods, longitudinal study protocol

Abstract: This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Cited by 14 publications

References 25 publications

Involving an individual with lived‐experience in a co‐analysis of qualitative data

Involving an individual with lived‐experience in a co‐analysis of qualitative data

Development of an online suicide prevention program involving people with lived experience: ideas and challenges

Development of an online suicide prevention program involving people with lived experience: ideas and challenges

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