‘I felt like a human being’—An exploratory, multi‐method study of refugee involvement in the development of mental health intervention research

Warner, Georgina; Baghdasaryan, Zaruhi; Osman, Fatumo; Lampa, Elin; Sarkadi, Anna

doi:10.1111/hex.12990

Cited by 21 publications

(54 citation statements)

References 28 publications

(60 reference statements)

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“…Similar studies that have used PPI in intervention development have established beneficial impacts on the relevancy and acceptability of their interventions [42][43][44], and systemic reviews have also reported on the impact on study design and enhanced quality of research in general [45,46]. The outcome of our collaboration with 7 research partners enabled us to fulfill this aspect of PPI, hopefully producing an intervention better suited to the needs of the target user and that fulfilled the requirements shown in Textbox 1.…”

Section: Principal Resultsmentioning

confidence: 83%

Designing a Web-Based Psychological Intervention for Patients With Myocardial Infarction With Nonobstructive Coronary Arteries: User-Centered Design Approach (Preprint)

Humphries¹,

Rondung²,

Norlund³

et al. 2020

Preprint

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BACKGROUND The involvement of patient research partners (PRPs) in research aims to safeguard the needs of patient groups and produce new interventions that are developed based on patient input. Myocardial infarction with non-obstructive coronary arteries (MINOCA), unlike acute myocardial infarction with obstructive coronary arteries (MI), is presented with no significant obstructive coronary artery disease. Patients with this diagnosis are a subset of those diagnosed with traditional MI and often need more psychological support, something that is presently not established in their current treatment scheme. An internet-delivered intervention might offer patients with MINOCA the opportunity to access psychological treatment remotely and tailored to their specific needs after MINOCA. OBJECTIVE To describe the development of a therapist-guided, internet-delivered, psychological intervention, designed specifically for patients with MINOCA. METHODS The study used a participatory design that involved seven PRPs diagnosed with MINOCA collaborating with a team consisting of researchers, cardiologists and psychologists. Intervention content was developed iteratively and presented to the PRPs across several prototypes, each continually adjusted and redesigned according to the feedback received. The intervention was presented to an expert panel of 2 clinical psychologists and a cardiologist for final input. RESULTS The outcome of the collaboration between PRPs and the research group produced an internet-based psychological 9-step program focusing on stress, worry and valued action. The input from PRPs contributed substantially to the therapy content, homework tasks, interactive activities, multimedia and design presentation. CONCLUSIONS Working with PRPs to develop an intervention for people with MINOCA produced a web-based intervention that can be further evaluated with the goal to offer a new psychological treatment option to a patient group currently without one. Direct contribution from patient research partners enabled us to obtain relevant, insightful and valuable feedback that was put towards the overall design and content of the intervention. The impact on those with MINOCA could be substantial.

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Section: Principal Resultsmentioning

confidence: 83%

Designing a Web-Based Psychological Intervention for Patients With Myocardial Infarction With Nonobstructive Coronary Arteries: User-Centered Design Approach (Preprint)

Humphries¹,

Rondung²,

Norlund³

et al. 2020

Preprint

View full text Add to dashboard Cite

show abstract

“…Similar studies that have used PPI in intervention development have established beneficial impacts on the relevancy and acceptability of their interventions [ 42 - 44 ], and systemic reviews have also reported on the impact on study design and enhanced quality of research in general [ 45 , 46 ]. The outcome of our collaboration with 7 research partners enabled us to fulfill this aspect of PPI, hopefully producing an intervention better suited to the needs of the target user and that fulfilled the requirements shown in Textbox 1 .…”

Section: Discussionmentioning

confidence: 99%

Designing a Web-Based Psychological Intervention for Patients With Myocardial Infarction With Nonobstructive Coronary Arteries: User-Centered Design Approach

Humphries¹,

Rondung²,

Norlund³

et al. 2020

J Med Internet Res

View full text Add to dashboard Cite

Background The involvement of patient research partners (PRPs) in research aims to safeguard the needs of patient groups and produce new interventions that are developed based on patient input. Myocardial infarction with nonobstructive coronary arteries (MINOCA), unlike acute myocardial infarction (MI) with obstructive coronary arteries, is presented with no significant obstructive coronary artery disease. Patients with this diagnosis are a subset of those diagnosed with traditional MI and often need more psychological support, something that is presently not established in the current treatment scheme in Swedish health care or elsewhere, to our knowledge. An internet-delivered intervention might offer patients with MINOCA the opportunity to access a psychological treatment that is tailored to their specific needs after MINOCA and could therefore supplement the existing medical care in an easily accessible format. Objective This paper aims to describe the development of a therapist-guided, internet-delivered psychological intervention designed specifically for patients with MINOCA. Methods The study used a participatory design that involved 7 PRPs diagnosed with MINOCA who collaborated with a team consisting of researchers, cardiologists, and psychologists. Intervention content was developed iteratively and presented to the PRPs across several prototypes, each continually adjusted and redesigned according to the feedback received. The intervention and experience of it were discussed by PRPs in a final meeting and then presented to a panel of 2 clinical psychologists and a cardiologist for further input. Results The outcome of the collaboration between PRPs and the research group produced a web-based psychological 9-step program focusing on stress, worry, and valued action. The input from PRPs contributed substantially to the therapy content, homework tasks, interactive activities, multimedia, and design presentation. Conclusions Working with PRPs to develop an intervention for people with MINOCA produced a web-based intervention that can be further evaluated with the goal of offering a new psychological treatment option to a patient group currently without one. Direct contribution from PRPs enabled us to obtain relevant, insightful, and valuable feedback that was put towards the overall design and content of the intervention.

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“…Additionally, involving representatives from the refugee community in programme development and delivery as well as research, is just as important. In the ongoing trials of TRT [17,18], in which the authors are involved, users are represented by refugee parents and youth, who are involved in all major decision in the trials [23]. Through user involvement, the potential recipients' voices are represented throughout the process and can potentially lead to more culturally appropriate programmes as well as more relevant and reliable research.…”

Section: Discussionmentioning

confidence: 99%

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

Lampa

Sarkadi

Warner

2020

IJERPH

Self Cite

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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.

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‘I felt like a human being’—An exploratory, multi‐method study of refugee involvement in the development of mental health intervention research

Abstract: This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Cited by 21 publications

References 28 publications

Designing a Web-Based Psychological Intervention for Patients With Myocardial Infarction With Nonobstructive Coronary Arteries: User-Centered Design Approach (Preprint)

Designing a Web-Based Psychological Intervention for Patients With Myocardial Infarction With Nonobstructive Coronary Arteries: User-Centered Design Approach (Preprint)

Designing a Web-Based Psychological Intervention for Patients With Myocardial Infarction With Nonobstructive Coronary Arteries: User-Centered Design Approach

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

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