A new article published in Design for Health found that eMental health (eMH) interventions could be improved by following a set of best practices that allow for the co-design of these programs by practitioners and people with serious mental illness (SMI).
The study identified 23 best practices that cover four basic aspects of co-design:
- Preparations before the start of a co-design study
- Ensuring team collaboration
- Making specific accommodations for individual co-design participants with SMI
- Mitigating the power imbalance
Stephanie E. Schouten led the research from the University of Twente, Netherlands. The authors believe that following these best practices will make eMH interventions more effective for those with SMI. They write:
“The best practices may help researchers and designers offer the SMI population a more specialized approach for co-design, which can cause the innovative output of eMH projects to be more effective and better adopted. Throughout the co-design process, more attention should be paid to the personal and clinical benefits of participation for the participants themselves.”
The use of technology in mental health interventions, also known as eMental health, is becoming more common, and it may be a more accessible alternative to traditional interventions for people diagnosed with severe mental illness (SMI). Although the SMI label is used liberally in the psy-disciplines, there is no single definition of what SMI actually means. Unfortunately, this fact does not stop practitioners from applying this ill-defined label to vulnerable people.
However, the authors of the current study note that the utilization of eMH by people with SMI is relatively low, which may be due to a mismatch between eMH interventions and the skills, abilities, context, and preferences of the SMI population.
This study aims to explore how to co-design interventions with and for people with SMI. To achieve this objective, the authors reviewed scientific literature, practitioner expertise, and client values. In addition, they identified relevant literature for review in scientific journals, used an online survey to evaluate practitioner expertise, and conducted semi-structured interviews with individuals who had an SMI diagnosis and had previously participated in eMH intervention co-design.
The final review included 21 studies published between 2008 and 2021, and 25 of 29 experts asked to complete the survey responded. The result was 23 best practices for co-design projects, endorsed by the scientific literature, expert opinions, and SMI participant interviews.
Six suggested best practices involve the planning and structure of the co-designed study. 4 of these were endorsed by both the literature review and the practitioner’s expertise:
- Combine multiple methods
- Ensure flexibility in the study design
- Ensure a clear internal structure (for example, having regular meetings)
- Reflection on methods, tools, and materials
The scientific literature, expert opinion, and SMI participant interviews endorsed the remaining 2 practices:
5. Stakeholders must have a say in recruitment
6. Funding should be secured early in the life of the study
Five suggested best practices involve methods to ensure team collaboration. Two of these suggestions were endorsed by both the scientific literature and expert opinions: Ensure informed consent for participants in terms of study goals and design, and contact team members between meetings for reminders and updates, as well as to provide any needed support.
The scientific literature, expert opinions, and SMI participant interviews endorsed the remaining 3 suggestions:
- Include multiple perspectives in the study design, including that of patients and clients
- Use icebreaker activities to make the group more comfortable working together
- Ensure transparency by showing all team members design concepts and explaining why decisions were made
Six best practices involve accommodating vulnerable participants, and four of these suggestions were endorsed by both the scientific literature and expert opinion:
- Consider SMI participants’ current state and preferences and adapt research to accommodate as much as possible
- Before the study begins, discuss practical concerns with participants that may affect attendance
- Use researchers that specialize in qualitative data
- Minimize risk and harm for SMI participants (for example, offer frequent breaks)
One suggestion was endorsed by both the scientific literature as well as the SMI participant interviews: Offer valuables compensation to participants (for example, cash)
One suggestion was endorsed by the literature review, expert opinions, and SMI participant interviews: Tailor tools to the cognitive abilities of the SMI participants
Six best practices involve mitigating the power imbalance between SMI and non-SMI co-designers, and three of these suggestions were endorsed by the literature review as well as expert opinions:
- Encourage shy team members to give input
- Allow SMI participants to formally evaluate the design and the co-design process
- Offer remote research methods to SMI participants
One suggestion was endorsed by the literature review, expert opinions, and SMI participants interviews: Ensure that the team views those with lived experience as experts and equal partners.
One suggestion was endorsed only by the literature review: Create a relaxed environment by altering things like decorations and refreshments.
One suggestion was endorsed only by expert opinions: Provide SMI participants with digital literacy and research methods training.
The authors acknowledge several limitations to the current work. First, the interviews conducted with SMI participants were short. More extended interviews could have revealed more information about the co-design process from their perspective. Second, the surveys and interviews have the potential for self-selection bias. Other sampling methods could have yielded more accurate results. Third, many of the experts that responded had little to moderate co-design experience. The present research was limited to articles written in Dutch and English, limiting generalizability to the non-Dutch/English-speaking world.
The authors conclude:
“Before embarking on a co-design project, researchers ought to equip themselves with the right skills through proper training or education to fulfill the many roles and responsibilities that are required. In addition, more research should be performed on the personal and clinical benefits of participation for people with SMI, rather than solely focussing on the benefits for research and the to-be-developed eHealth intervention.”
Researchers have outlined how co-design and co-production of knowledge can work within the framework of clinical research and beyond. Other researchers have also explained that co-design can circumvent many of the problems with traditional research. In addition, studies have shown that the co-production of knowledge and collaborative approaches to mental health increase equality and improve outcomes.
Stephanie E. Schouten, Hanneke Kip, Tessa Dekkers, Jeroen Deenik, Nienke Beerlage-de Jong, Geke D. S. Ludden & Saskia M. Kelders (2022): Best practices for co-design processes involving people with severe mental illness for eMental health interventions: a qualitative multi-method approach, Design for Health, DOI: 10.1080/24735132.2022.2145814 (Link)