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BackgroundTeaching: Recovery Techniques (TRT) is a brief psychosocial intervention designed to reduce symptoms of post-traumatic stress among children. To strengthen the evidence base for TRT, a nationwide multisite cluster RCT of TRT with accompanied refugee children was planned in Sweden, including an internal pilot with the primary objectives of assessing screening, recruitment, attendance, and retention. Secondary objectives were to consider the feasibility of randomisation, the suitability of the questionnaires employed in the main RCT, and intervention acceptability.

Methods: Accompanied refugee children aged 8 to 17 years, who arrived in Sweden within the last 5 years and screened positive for symptoms of post-traumatic stress, were allocated to the intervention or waitlist arm using non-blinded cluster randomisation. Pre- and post-measurements were conducted at baseline (T1) and after 8 weeks (T2). Success criteria for the pilot were (i) at least 50% of those referred for participation meet the screening cut-off for post-traumatic stress; (ii) 28 eligible children recruited in the first three months; (iii) at least 50% of those randomised to intervention attending one of the five core sessions; and (iv) at least 50% of those screened at T1 complete the T2 data collection. To get a deeper understanding of the acceptability of the intervention, 11 semi-structured interviews were conducted with refugee children. The interviews were transcribed and analysed using thematic analysis.

Results: A change in recruitment strategy from referral to broader screening resulted in 44% meeting the cut-off for post-traumatic stress and, partly due to the COVID-19 pandemic, only five clusters (3 intervention, n = 11; 2 waitlist control, n = 11) were recruited over 12 months. However, 64% of those randomised to the intervention arm attended at least one of the five core intervention sessions, and 91% were retained at T2 data collection. The qualitative inquiry confirmed the acceptability of the intervention and the need for tools to address trauma symptoms but raised concerns about stigma related to both screening and participation.

Conclusions:Although the planned RCT was deemed not feasible due to low recruitment rates, this pilot study gave insight into important practical and ethical considerations. Adjustments to information, screening, and recruitment may improve the likelihood of a successful RCT. Adopting a strength-based approach when introducing a mental health intervention to refugee children is recommended; not only may this reduce stigma, but it may actively shift from a deficit-focused discourse.

As emerging technologies such as AI systems and social robots become embedded in children’s daily lives, it is vital to consider how children themselves imagine robots. Advances in social robotics have generated new opportunities for assessing child wellbeing, but much of this work remains framed by adult researcher-centered views of what counts as beneficial. Drawing on the distinction between adult child perspectives and children’s own perspectives from childhood studies, we report a speculative participatory workshop with a child public involvement panel that explores future social robots for supporting children’s wellbeing. Children took part as co-researchers rather than research subjects, and their discussions highlight insights including everyday care, emotional companionship, and transparency about robot identity. We use these insights to inform future work on child-robot interaction and child wellbeing, and to connect children’s perspectives to debates around ethics and AI policy.

Public and patient involvement (PPI) is widely recognized and increasingly required in health and nursing research, yet many research teams struggle to operationalize PPI meaningfully, especially in the early stages of PPI. Existing guidance tends to be in text format (checklists and principles) rather than a visual, co-creative planning tool. In this paper, we discuss how to initiate PPI in nursing science and suggest a new tool, the PPI Project Design Canvas: an integrative tool to support planning and enacting PPI in health and nursing research.

Child health researchers are increasingly aware of children's rights to express their views and to be heard in all matters affecting them, as expressed in article 12 in the Convention on the Rights of the Child. This includes research, but it is unusual for young children to be involved as co-researchers in health research. Child-facing professionals and researchers sit on experience-based knowledge and practical skills, which could inform young children's involvement in research. We investigated perspectives and conceptualisations on child participation, for the ages 3-5 years, among professionals and researchers outside of the health sciences, by interviewing fifteen informants. We present the findings on three levels; meta, meso and micro. The interviewees described child participation as something that forms the basis for the practices they performed, independent of their profession; we theorized this as understandings of child participation on an overarching meta level, where active child participation both becomes an 'established ideology', and something difficult to put into words and describe. What also united the interviewees was their description of foundations or prerequisites for participation to take place; we theorized this as understandings of child participation on a meso level, where descriptions of the need for building relations with the children, the importance of space and place, and the focus on child-centred activities were common themes. Finally, the interviewees described methods that they used in meetings with children; this is theorized as understandings of child participation on micro level, categorized as methods for understanding children's worlds, methods for engaging children in conversations and methods to ensure children's consent. We discuss these understandings of child participation to untangle if they represent a child perspective or children's perspectives. In the longer term, this knowledge will serve as the conceptual basis for a guide to children's meaningful involvement in health research.

In this article, we applied empirical ethics to the topic of patient and public involvement (PPI) with forced migrants. We know that PPI has positive impact on research, but the empirical knowledge around the ethical aspects of PPI with forced migrants is largely unknown. We analysed empirical material to identify ethical issues, using thematic analysis, and discussed these in relation to research ethics principles as well as relational ethics.

Background: Experiencing gender-based violence (GBV) is common among refugees. Intersecting systems of oppression can increase the risk of GBV and of suffering detrimental consequences, while concurrently creating barriers to meaningful support. Despite this, refugees with lived experience of GBV are rarely involved in the development, planning and adaptation of services and policies.

Methods: This article reports on a formative research process that aimed to involve public contributors (refugee victim-survivors of GBV) and relevant stakeholders in co-designing a service model aimed at improving psychosocial support in Sweden. Led by a partnership of public contributors and academic researchers, the research process consisted of iterative cycles of co-design workshops, complemented by scoping of existing literature.

Results: The co-design process resulted in a characterisation of the psychosocial service system needs, as perceived by the survivor co-researchers and stakeholders, and a two-level empowerment and support service model. The model included (i) a community-based intervention to promote help-seeking and (ii) psychosocial group support delivered in specialist clinics. Outcomes of the project included perceived benefits for those involved, service-led direct changes and acquisition of funding for continued research on the co-designed model.

Conclusion: Improving psychosocial support for refugees in Sweden affected by GBV requires safe spaces to connect with peers and familiarise with available services, laws and rights in the society. Further, strengthened collaborations across sectors are necessary to meet the variety of needs. Co-design workshops were an effective way to initiate changes in the service delivery model for psychosocial support for refugees in Sweden affected by GBV.

Patient or Public Contributions: This is a participatory reflection on a participatory process. The survivor co-researchers contributed to designing and carrying out the PPI process and have co-authored this manuscript.

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.

Although participatory approaches in health research are increasingly used, critical voices are being raised around lack of diversity among the public contributors involved. This article explores enabling and hindering factors in participatory meetings with forced migrants involved as public contributors in health research, using a convergent parallel mixed methods design including behavioural observations and questionnaires, with the aim of contributing to practices of meaningful and inclusive involvement in research. Our findings indicated that relationship-building and adapting to team development over time were key. Additionally, researcher responsivity and transparency enabled relevant contributions, but few decisions were taken. Although linguistic barriers existed and were rated higher by the researchers, engaging interpreters as co-facilitators of the meetings enabled nuanced discussions. In addition to following PPI recommendations, involving public contributors with experience of forced migration requires considering relationship-focused factors; inclusive communication, relationships and trust, and process-focused factors: where and how decisions are taken.

IntroductionMany researchers want to include seldom involved groups, such as refugees and youth, in patient and public involvement (PPI), but experience a number of barriers. The PPI research community calls for critical evaluations that are prospective, data-based and conducted by researchers and public contributors together. In this study, we conducted a longitudinal evaluation of a core activity in all collaborations: communication strategies. The aim was to evaluate the communication strategies adopted throughout a research project with refugee youth coresearchers.MethodsThis article is based on the evaluation of a project where refugee youth were involved in the online adaptation of a group-based programme for youth with posttraumatic stress. Behavioural observations and field notes collected during the project were analysed with qualitative content analysis and a readability index, and discussed through the lens of epistemic injustice. The article was cowritten by researchers and refugee youth.FindingsFour manifest categories were identified: Facilitating engagement through coplanning and circumstantial flexibility; Different needs require different channels; It's not just about the channel—facilitation skills matter; Finding a common language opens a communicative flow. In addition, a latent underlying theme reflecting the role of trust was identified: Interactive moments facilitate trust—trust facilitates richer involvement.ConclusionAt the core of the identified communication strategies were strengthening relationship-building and actively facilitating involvement. Establishing trusting relationships enabled refugee youth to share input. The communication strategies increased hermeneutical justice by contributing to a common understanding; thus, taking a step towards ameliorating epistemic injustice.