Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Hemming L

PROVIDER: S-EPMC8235892 | biostudies-literature | 2021 Jun

REPOSITORIES: biostudies-literature

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Publications

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

Hemming Laura L Pratt Daniel D Bhatti Peer P Shaw Jennifer J Haddock Gillian G

Health expectations : an international journal of public participation in health care and health policy 20210331 3

<h4>Background</h4>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.<h4>Aims</h4>To critically reflect on the process of involving people with lived-experience in a thematic analysis and to offer direction to other researchers.<h4>Methods</h4>An individual with lived-experience of residing in prison contributed to a co-ana ...[more]

PMID: 33788373

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Project description:BackgroundThe 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.MethodsIn 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.ResultsThree 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.ConclusionThe 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.

Project description:ObjectiveThe purpose of this study was to qualitatively assess the first-hand lived experiences of patients with amputation who had transitioned from a traditional socket (TS) to Osseointegration (OI) to impact their overall quality of life (QOL) and function.MethodsThis was a qualitative phenomenological study. Participants who had a unilateral transfemoral amputation and fit the study's inclusion criteria were interviewed in a semi-structured format regarding their quality of life and function before and after transitioning from a traditional socket (TS) to Osseointegration (OI). Responses were then analyzed through line-by-line coding to determine themes that were relevant to QOL outcomes for this study.ResultsEleven participants were interviewed in this study. The qualitative analysis demonstrated an emergence of 6 main themes consisting of "Improved Quality of Life," "Supportive Community," "Previous Ill-fitting Socket," "Greater Function," "Improved Osseo-perception," and "Promotion of Community Accessibility". Strengths included the use of an OI-specific quality of life assessment with adapted questions from validated outcome measures, international participants, and use of thematic analysis for data analysis. Weaknesses included sample size, niche participant population, and OI as a revision procedure only. More research is still necessary to explore/determine the benefits and detriments of Osseointegration as an alternative to traditional sockets for prosthetic devices.ConclusionIndividuals who have undergone Osseointegration procedure discuss being more satisfied with their prosthesis and quality of life when compared to their previous experience of a traditional socket.Impact statementThis is a first of its kind study reporting on the lived experiences of those who have undergone OI. The field of amputation rehabilitation is expanding rapidly and knowing how this procedure impacts quality of life is important for healthcare professionals to understand as new frontiers are explored in this field.

Project description:BackgroundFear 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.MethodsInspired 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.ResultsBetween 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.ConclusionsThrough 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.

Project description:IntroductionThere is a move towards engaging people with lived experience and families (PWLE/F)-also referred to as PWLE/F engagement-in mental health and/or substance use research. However, PWLE/F engagement is inadequately reported on in mental health and/or substance use research papers.ObjectiveTo understand what PWLE/F and researchers perceive are important components to report on related to engagement in mental health and/or substance use research.MethodsThis study included a qualitative description study underpinned by pragmatism. Data were collected through virtual interviews with 13 PWLE/F and 12 researchers across Canada and analysed using template analysis. The results were used to develop a reporting guidance document for engagement in mental health and/or substance use research.ResultsThe results from the template analysis were structured through the following themes: (1) establishing the need for a guidance document; (2) aspects of engagement to report and reflect on; (3) guidance around co-authorship with PWLE/F; (4) practical tips for reporting on engagement and (5) considerations for journals. Participants identified a need for tailored guidance that is flexible and reflective, yet can promote transparency, accountability and learning in the field. A reporting guidance document was developed for engagement in mental health and/or substance use research that balances flexibility and standardisation while incorporating reflection into reporting. Guidance around co-authorship with PWLE/F partners was also included.ConclusionThe guidance document is intended to be used as a roadmap to help guide authors to meaningfully write about engagement without the rigid boundaries of a reporting guideline. We encourage research teams that engage PWLE/F in mental health and/or substance use research to consider using the guidance document as they write up their work.Patient and public involvementPWLE/F members were engaged throughout the study from conception to manuscript production. This included a PWLE partner on the doctoral committee and a Lived Experience Advisory Group consisting of two PWLE and one family partner.

Dataset Information

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

Background

Aims

Methods

Results

Conclusions

Publications

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

Similar Datasets

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