ArticleHealth expectations : an international journal of public participation in health care and health policy2021
'I felt like a human being'-An exploratory, multi-method study of refugee involvement in the development of mental health intervention research.
Article in Health expectations : an international journal of public participation in health care and health policy, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
22 citing papers in PubMed, 1 synthesis or guideline pooled it, 33 citations in OpenAlex.
- Systematic Review: Patient and Public Involvement of Children and Young People in Mental Health Research.Clinical child and family psychology review · 2024Pooled it
- Meta-Research on the Science of Lived Experience Engagement in Mental Health and Substance Use Health Research: A Scoping Review and Qualitative Synthesis.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Facilitators' experiences of co-designing an intrapartum care intervention in four sub-Saharan African countries: a qualitative study.BMJ open · 2026Article
- "Inclusivity requires an active effort": building an inclusive and diverse space when engaging people with lived and living experience and caregivers in mental health and substance use health research.Research involvement and engagement · 2025Article
- Development and validation of the UserInvolve comprehensive toolkit for evaluating co-production in research: A guiding resource for researchers.Research involvement and engagement · 2025Article
- Emerging practice in mental health patient and public involvement research advisory groups: a narrative review.BMC psychiatry · 2025Review
- The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Development of a self-management mobile app for bereaved adolescents: evaluating patient and public involvement.European journal of psychotraumatology · 2024Article
- Exploring the impact of engagement in mental health and substance use research: A scoping review and thematic analysis.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice.Research involvement and engagement · 2023Article
- Research evidence and implementation gaps in the engagement of people with lived experience in mental health and substance use research: a scoping review.Research involvement and engagement · 2023Article
- A scoping review of methods to measure and evaluate citizen engagement in health research.Research involvement and engagement · 2022Article
- Adaptation of the trauma group intervention 'Teaching Recovery Techniques' for online delivery: A participatory design and usability study.Internet interventions · 2022Article
- Tracking involvement over time: a longitudinal study of experiences among refugee parents involved as public contributors in health research.International journal of qualitative studies on health and well-being · 2022Article
- The experience of patient partners in research: a qualitative systematic review and thematic synthesis.Research involvement and engagement · 2022Review
- Feasibility of a randomised trial of Teaching Recovery Techniques (TRT) with refugee youth: results from a pilot of the Swedish UnaccomPanied yOuth Refugee Trial (SUPpORT).Pilot and feasibility studies · 2022Article
- Mapping trauma support onto the shifting landscape of seeking refuge in Sweden: insights from an ongoing programme of research on refugee minors' mental health.European child & adolescent psychiatry · 2021Article
- What has the COVID-19 pandemic taught us about conducting patient and public involvement remotely? Insights from a series of digital meeting observations.Research involvement and engagement · 2021Article
- A chair at the table: a scoping review of the participation of refugees in community-based participatory research in healthcare.Globalization and health · 2021Article
- 'I felt like a human being'-An exploratory, multi-method study of refugee involvement in the development of mental health intervention research.Health expectations : an international journal of public participation in health care and health policy · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundGreat advancements have been made in patient and public involvement (PPI), including the development of guidance on how to conduct, report and evaluate PPI. Despite these efforts, the evidence base remains relatively weak. A substantive methodological development is required. This is particularly important for vulnerable groups within society, for whom PPI can be challenging but has the potential to play a transformative role in shaping research.
objectivesTo describe the group dynamic characteristics and immediate impact of PPI from the user representatives' perspective in a case study of refugee involvement in the development of mental health intervention research. To pilot and methodologically appraise the Active Involvement of Users in Research Observation Schedule and Questionnaire.
designThe Active Involvement of Users in Research Observation Schedule and Questionnaire were administered together with a focus group discussion.
setting'Refugee Advisors' were involved in the development of a randomized controlled trial protocol evaluating a brief group intervention for refugee children experiencing symptoms of post-traumatic stress in Sweden.
resultsThe multi-method approach demonstrated good feasibility. There were clear examples of how the advisors influenced research development. The advisors described a perceived impact on the research, equality and acceptance, and knowledge gain. A sense of appreciation and empowerment was also interpreted. However, potential issues relating to the relevance of contributions and use of an interpreter were identified. DISCUSSION AND
conclusionThe methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.