'I felt like a human being'-An exploratory, multi-method study of refugee involvement in the development of mental health intervention research.

BACKGROUND: Great 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. OBJECTIVES: To 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. DESIGN: The 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. RESULTS: The 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 CONCLUSION: The methodological approach piloted in this study offers a promising, rigorous way to evaluate PPI. The research tools require further refinement and validation.

Tracking involvement over time: a longitudinal study of experiences among refugee parents involved as public contributors in health research.

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.

Adaptation of the trauma group intervention 'Teaching Recovery Techniques' for online delivery: A participatory design and usability study.

Background: Video-telehealth delivery of trauma-based care is promising and may help address structural and perceptual barriers to receiving support. However, existing evidence relies heavily on samples from adult populations. There is potential to transfer existing child and adolescent trauma interventions to a video-telehealth delivery format; but, this requires careful consideration. The aim of this project was to adapt a group-based intervention called Teaching Recovery Techniques for online delivery and investigate the usability of the new intervention format. Methods: A qualitative needs assessment was performed (n = 3 intervention leaders, 4 youth), followed by participatory workshops and advisory panel consultation to generate adaptation recommendations. Usability testing was performed in two cycles; the first tested the adapted manual with intervention leaders (n = 5), and the second tested newly developed digital resources with youth (n = 5). Results: The needs assessment uncovered a number of issues that, when generating recommendations, were distilled into three topics: safety, participation and learning. Recommendations included safety rules, an emergency response protocol, communication strategies, and guidance on group composition and intervention delivery. Usability testing indicated acceptability but highlighted the need for more detailed and explicit guidance, particularly on safety processes. Discussion: The present study demonstrates the potential for delivery format to affect intervention feasibility and acceptability, and provides recommendations that can be used to guide the transfer of other group-based mental health interventions to an online format. The young people, parents and professionals involved in the project provided rich and varied perspectives, which illustrated the value of broad stakeholder engagement.

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).

BACKGROUND: Although post-traumatic stress is prevalent among unaccompanied refugee minors (URM), there are few evidence-based psychological interventions for this group. Teaching Recovery Techniques (TRT) is a brief, manualised intervention for trauma-exposed youth, which has shown promising results in exploratory studies. The aim of the present study was to assess the feasibility of conducting a randomised controlled trial (RCT) evaluating the use of TRT among URM by investigating key uncertainties relating to recruitment, randomisation, intervention delivery and data collection. METHODS: A 3-month long non-blinded internal randomised pilot trial with a parallel-group design assessed the feasibility of a planned nationwide multi-site RCT. URM with or without granted asylum were eligible if they were 14 to 20 years old, had arrived in Sweden within the last 5 years and had screened positive for symptoms of post-traumatic stress disorder (PTSD). Quantitative data were collected pre- and post-intervention, and 18 weeks after randomisation. On-site individual randomisation (1:1) followed directly after pre-intervention assessment. Participants allocated to the intervention were offered seven weekly group-based TRT sessions. Quantitative pilot outcomes were analysed using descriptive statistics. Qualitative information was gathered through on-site observations and follow-up dialogue with group facilitators. A process for Decision-making after Pilot and feasibility Trials (ADePT) was used to support systematic decision-making in moving forward with the trial. RESULTS: Fifteen URM (mean age 17.73 years) with PTSD symptoms were recruited at two sites. Three of the youths were successfully randomised to either TRT or waitlist control (TRT n = 2, waitlist n = 1). Fourteen participants were offered TRT for ethical reasons, despite not being randomised. Six (43%) attended ≥ 4 of the seven sessions. Seventy-three percent of the participants completed at least two assessments, with a response rate of 53% at both post-intervention and follow-up. CONCLUSIONS: The findings demonstrated a need for amendments to the protocol, especially with regard to the procedures for recruitment and randomisation. Upon refinement of the study protocol and strategies, an adequately powered RCT was pursued, with data from this pilot study excluded. TRIAL REGISTRATION: ISRCTN47820795 , prospectively registered on 20 December 2018.

What has the COVID-19 pandemic taught us about conducting patient and public involvement remotely? Insights from a series of digital meeting observations.

BACKGROUND: During the COVID-19 pandemic many work tasks are being done remotely through digital meetings, including PPI in research. Yet, some PPI activities have been paused or cancelled altogether during the pandemic. In this commentary, we share our insights from observing digital meetings with researchers and public contributors, representing vulnerable groups. Additionally, we discuss how remote PPI activities can be understood and improved. MAIN BODY: As part of a PPI evaluation project, live observations were conducted by two trained observers, using a semi-structured observation protocol developed to objectively assess aspects of group dynamics in PPI research meetings with public contributors with experience of seeking refuge and parents facing economic hardship. This project's data collection is ongoing and the insights in this commentary is based on the observers' discussion. We discuss these insights through the lens of the Media Richness Theory, stating that the choice of media we communicate through should be guided by what kind of information we want to communicate to each other. The more complex the information is, the richer the media tool needs to be. For example, information in a text message is more easily misinterpreted than information given in person. This is because meeting in person gives us more information, for example through body language and tone of voice. Based on our experiences from observing digital research meetings, we give suggestions on how to improve digital meetings with public contributors. A few key points are: actively choosing which media to use; being prepared to guide contributors to the chosen media in a way that is suitable for them; and the increased importance of the person chairing the meeting to actively include all participants. CONCLUSIONS: We reach the conclusion that digital meetings with public contributors is possible, but that researchers need to make a commitment and actively work to solve practical issues. Finally, the format and structure of digital meetings should be co-created together with public contributors.

During the COVID-19 pandemic many work tasks are conducted remotely through digital meetings, including PPI in research. Yet, some PPI activities have been paused or cancelled during the pandemic. In this commentary, we share our insights from observing digital meetings with researchers and contributors with experience of seeking refuge and parents facing economic hardship, and discuss how remote collaborations can be improved. This is discussed through the lens of the Media Richness Theory, stating that the choice of media we communicate through should be guided by what kind of information we want to communicate to each other. The more complex the information is, the richer the media tool needs to be. For example, information in a text message is more easily misinterpreted than information given in person, since meeting in person gives us more information, for example through body language and tone of voice. Based on our experiences from observing digital research meetings, we give suggestions on how to improve digital meetings with public contributors. Some key points are: actively choosing which media to use; being prepared to guide contributors to the chosen media in a way that is suitable for them; and the increased importance of the person chairing the meeting to actively include all participants. We reach the conclusion that digital meetings with public contributors is possible, but that researchers need to make a commitment and actively work to solve practical issues. Finally, the format and structure of digital meetings should be co-created together with public contributors.

Implementation and Maintenance of a Community-Based Intervention for Refugee Youth Reporting Symptoms of Post-Traumatic Stress: Lessons from Successful Sites.

Over the last few years there have been attempts to scale-up Teaching Recovery Techniques (TRT), a community-based group intervention for refugee youth reporting symptoms of post-traumatic stress, across Sweden using the distribution network pathway model. This implementation model allows for quick spread, but only for a low level of control at local sites. This study explores factors and agents that have facilitated the implementation and maintenance of the community-based intervention in successful sites. Seven semi-structured interviews were conducted with personnel from "successful" community sites, defined as having conducted at least two groups and maintaining full delivery. Data were analyzed using content analysis to identify a theme and categories. The main theme "Active networking and collaboration" was key to successful maintenance of community-based delivery. Categories included "Going to where the potential recipients are", relating to the importance of networks, and "Resource availability and management for maintenance", relating to the challenges due to the lack of a lead organization supplying necessary funds and support for maintenance. Additionally, "Careful integration of the interpreter" underlined that interpreters were essential co-facilitators of the intervention. Although the interviewed professionals represented successful sites, they remained dependent on informal networks and collaboration for successful maintenance of community-based delivery.

Evaluation of the Teaching Recovery Techniques community-based intervention for unaccompanied refugee youth experiencing post-traumatic stress symptoms (Swedish UnaccomPanied yOuth Refugee Trial; SUPpORT): study protocol for a randomised controlled trial.

BACKGROUND: In 2015, 162,877 persons sought asylum in Sweden, 35,369 of whom were unaccompanied refugee minors (URMs). Refugee children, especially URMs, have often experienced traumas and are at significant risk of developing mental health problems, such as symptoms of post-traumatic stress disorder (PTSD), depression and anxiety, which can continue years after resettlement. The Swedish UnaccomPanied yOuth Refugee Trial (SUPpORT) aims to evaluate a community-based intervention, called Teaching Recovery Techniques (TRT), for refugee youth experiencing PTSD symptoms. METHODS/DESIGN: A randomised controlled trial will be conducted in which participants will be randomly allocated to one of two possible arms: the intervention arm (n = 109) will be offered the TRT programme, and the waitlist-control arm (n = 109) will receive services as usual, followed by the TRT programme around 20 weeks later. Outcome data will be collected at three points: pre-intervention (T1), post-intervention (T2; about 8 weeks after randomisation) and follow-up (T3; about 20 weeks after randomisation). DISCUSSION: This study will provide knowledge about the effect and efficiency of a group intervention for URMs reporting symptoms of PTSD in Sweden. TRIAL REGISTRATION: ISRCTN, ISRCTN47820795. Prospectively registered on 20 December 2018.

Evaluation of the teaching recovery techniques community-based intervention for accompanied refugee children experiencing post-traumatic stress symptoms (Accompanied refugeeS In Sweden Trial; ASsIST): study protocol for a cluster randomised controlled trial.

BACKGROUND: Refugee children have often experienced traumas and are at significant risk of developing mental health problems, such as symptoms of post-traumatic stress disorder (PTSD), depression and anxiety, which can continue for years after resettlement. The Accompanied refugeeS In Sweden Trial (ASsIST) aims to evaluate a community-based intervention, called 'Teaching Recovery Techniques' (TRT), for accompanied refugee minors experiencing PTSD symptoms. METHODS/DESIGN: A cluster randomised controlled trial will be conducted in which participants will be randomly allocated to one of the two possible arms: the intervention arm (n=113) will be offered the TRT programme and the waitlist-control arm (n=113) will receive services as usual, followed by the TRT programme around 20 weeks later. Outcome data will be collected at three points: pre-intervention (T1), post-intervention (T2; c.8 weeks after randomisation) and follow-up (T3; c.20 weeks after randomisation). ETHICS AND DISSEMINATION: Ethical approval was granted by the Regional Ethical Review Board in Uppsala (Ref. 2018/382) (24th February 2019). Results will be published in scientific journals. TRIAL REGISTRATION DETAILS: ISRCTN17754931. Prospectively registered on 4th June 2019.