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Best-Practices, Lessons Learned and Recommendations for the Participatory Design of eMental Health with People with a Severe Mental Illness : A Qualitative Multiple Method Approach

Schouten, Stephanie E. (2022) Best-Practices, Lessons Learned and Recommendations for the Participatory Design of eMental Health with People with a Severe Mental Illness : A Qualitative Multiple Method Approach.

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Abstract:Background: Long waiting times, costly therapy and stigma form barriers to access mental healthcare by people with a severe mental illness (SMI). eMental Health (eMH) may provide individuals with SMI with an effective and scalable way to receive care irrespective of time and location. However, adoption falls behind on expectations. A mismatch between the eMH interventions and the user’s skills, abilities, context and preferences might explain this lack of adoption. Further, ill-fitted designs that do not accommodate the cognitive abilities of the target group result in poor usability. For the SMI population to reap the full benefits of what eMH has to offer, efforts need to be made to ensure that the technology fit the abilities and preferences of the SMI end-user. To optimize the fit between the technology and SMI patients, they should be included in the development process through participatory design (PD). However, vulnerable populations are often excluded or misrepresented. The active role of SMI patients in PD is relatively new and not yet clearly defined. Currently, there is a lack of knowledge or guidance on how to best involve individuals with SMI in PD. Objectives: This research aims to gain insight into the best practices for doing PD with people with SMI. Methods: A qualitative multi-method approach was used in accordance with the three pillars of evidence based medicine (i.e., scientific literature, practitioner’s expertise and client values). First, a scoping review was performed to gather insight from the current literature on the best practices for PD with SMI patients. Second, a survey with open-ended questions was sent to people with experience in conducting PD with vulnerable target groups. Third, semi-structured interviews were held with SMI patients succeeding PD workshops to gather their opinions and preferences of being involved in PD. After conducting each method independently, relevant data was copied verbatim into a data extraction form. Herein an iterative coding process took place. The Grounded Theory Approach was used with a combination of inductive and deductive coding. Subsequently, the findings were combined to form a list of recommendations for future PD projects with SMI patients. Results: The lessons learned that followed from the qualitative multi-methods, resulted in 23 actionable recommendations. The recommendations are divided into four categories: 1) plan and structure study, 2) create and maintain a participatory team, 3) accommodate participants and 4) strive for power balance. Each category contains four to seven recommendations. The first category concerns the necessary activities to carry out prior to the start of the data collection methods. The second category helps to ensure longevity in the fruitful collaboration of the participatory team. The third category targets the bespoke approach within PD that helps to accommodate participants in various ways such as their skills and abilities. The fourth category serves the mitigation of ethical challenges surrounding power balance. Discussion/Conclusion: The recommendations provide a practical guidelines for conducting PD with the SMI population. Although diversity in people and methods, equal collaboration and communication can aid in the success of PD with people with SMI. The approach does not come with a one-size fits all approach. It calls for a flexible and bespoke undertaking that caters to skills and preferences of SMI participants. Researchers should always be aware of the context of their study. Future research may uncover the personal benefits of participation for psychiatric patients.
Item Type:Essay (Master)
Faculty:TNW: Science and Technology
Subject:44 medicine
Programme:Health Sciences MSc (66851)
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