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Tracking involvement over time: a longitudinal study of experiences among refugee parents involved as public contributors in health research
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social medicine/CHAP.ORCID iD: 0000-0002-5467-5850
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Social medicine/CHAP.ORCID iD: 0000-0001-6594-2291
School of Health and Welfare, Dalarna University, Dalarna, Sweden.ORCID iD: 0000-0002-0038-9402
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.ORCID iD: 0000-0002-3823-8263
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2022 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 17, no 1, article id 2103137Article in journal (Refereed) Published
Abstract [en]

Purpose

Patient and public involvement (PPI) is becoming more common in research, but has been problematized for lack of diversity. While PPI literature increasingly focuses on assessment of PPI on research, a focus on the contributors is less common. This study tracked the experiences of involvement among four refugee parents involved as public contributors in a child mental health trial, over three years.

Methods

The study used a longitudinal qualitative design with focus group discussions. Data were analysed using thematic analysis combined with a longitudinal analysis approach.

Results

The refugee parents' motivations for being involved changed from focusing on individual benefits to societal change. They initially viewed themselves as guests, which transformed into utilizing the group for social support. Time impacted trust-building positively, with continued collaboration strengthening trust. Practical aspects were dominant in the beginning, which shifted over time to allow more focus on research. They identified several learnings they gained from involvement. A discrepancy in how parents and researchers viewed involvement was identified, where parents saw researchers as owners of the research.

Conclusions

To sustain successful PPI collaboration over time, researchers need to prioritize investment in time and resources, in communication, including working with interpreters, and in continued adjustments.

Place, publisher, year, edition, pages
Taylor & Francis Group, 2022. Vol. 17, no 1, article id 2103137
Keywords [en]
Patient and public involvement, refugees, parents, longitudinal qualitative research, focus groups
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:uu:diva-483043DOI: 10.1080/17482631.2022.2103137ISI: 000839300400001PubMedID: 35950287OAI: oai:DiVA.org:uu-483043DiVA, id: diva2:1691231
Available from: 2022-08-29 Created: 2022-08-29 Last updated: 2024-04-19Bibliographically approved
In thesis
1. Patient and public involvement with forced migrants: Exploring communication, ethics and public contributor experiences
Open this publication in new window or tab >>Patient and public involvement with forced migrants: Exploring communication, ethics and public contributor experiences
2024 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The topic of this thesis is patient and public involvement (PPI) in health research. Here, PPI is defined as the active involvement in key research decisions of people whose lives are at the centre of the research. Currently, there is an increased interest in and development of participatory methods. In Sweden, PPI has acquired growing attention in health research. However, the use of PPI in Sweden, as well as the structures supporting researchers and public contributors, are not yet established. The PPI field has been criticised for lacking diversity and fair representation of the researched groups. One group rarely involved as public contributors in PPI is forced migrants. Doing research with rather than about forced migrants, has the potential to alleviate asymmetries of power and knowledge, and reduce health inequities – if conducted in a meaningful way. 

The overall aim was to explore patient and public involvement with forced migrants in health research. Four studies were conducted. The study designs built on and complemented each other in terms of data, analysis methods and level of detail. Study I used a longitudinal qualitative approach to track the experiences of refugee parents during their involvement in a three-year child mental health trial. In Study II, enablers and barriers to PPI meetings with forced migrant public contributors were identified using a mixed methods approach. Study III evaluated the communication strategies in a research project with refugee youth coresearchers, with a focus on epistemic injustice. In Study IV, ethical issues in PPI with forced migrants were empirically investigated and analysed using relational ethics.

The findings show similar patterns from different perspectives. PPI with forced migrants required considerations around inclusive communication, relationship-building and trust, as well as considerations around where and how decisions were made. For these processes to develop, time and a focus on relationships is required. Using relational ethics and a reflexive approach can help researchers navigate ethical PPI with forced migrants. In the Swedish setting, PPI needs to be acknowledged on an institutional level, to create conditions to work with PPI in meaningful and ethical ways.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2024. p. 103
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 2052
Keywords
Patient and public involvement, forced migration, ethics, communication, epistemic injustice, empirical ethics, relational ethics, mixed methods, longitudinal research
National Category
Public Health, Global Health, Social Medicine and Epidemiology Medical Ethics
Research subject
Health Care Research; Bioethics
Identifiers
urn:nbn:se:uu:diva-526848 (URN)978-91-513-2134-9 (ISBN)
Public defence
2024-06-11, The Humanities Theatre, Engelska parken, Thunbergsvägen 3C, Uppsala, 09:15 (English)
Opponent
Supervisors
Available from: 2024-05-20 Created: 2024-04-19 Last updated: 2024-05-20

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Lampa, ElinSarkadi, AnnaOsman, FatumoKihlbom, UlrikWarner, Georgina

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