ArticleInternational journal of qualitative studies on health and well-being2022
Tracking involvement over time: a longitudinal study of experiences among refugee parents involved as public contributors in health research.
Article in International journal of qualitative studies on health and well-being, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
6 citing papers in PubMed.
- Find your village: a call for culturally coordinated understanding and action with migrant heritage families in the Global North.Global health action · 2026Article
- Balancing ethical and practical dilemmas: feasibility of a cluster randomised internal pilot trial of Teaching Recovery Techniques with accompanied refugee children in Sweden.Pilot and feasibility studies · 2026Article
- Patient and Public Involvement with Forced Migrants: An Empirical Exploration of Ethical Issues.Journal of bioethical inquiry · 2025Article
- Co-Design Workshops to Develop a Psychosocial Support Service Model for Refugees in Sweden Affected by Gender-Based Violence.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol.Research involvement and engagement · 2024Review
- A rocky road but worth the drive: A longitudinal qualitative study of patient innovators and researchers cocreating research.Health expectations : an international journal of public participation in health care and health policy · 2023Article
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.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposePatient 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.
methodsThe study used a longitudinal qualitative design with focus group discussions. Data were analysed using thematic analysis combined with a longitudinal analysis approach.
resultsThe 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.
conclusionsTo 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.
Indexed as
Identifiers
What OpenQuestion holds
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.