Exploring Human Values in the Design of a Web-Based QoL-Instrument for People with Mental Health Problems: A Value Sensitive Design Approach

Maathuis, Ivo; Niezen, Maartje; Buitenweg, David; Bongers, Ilja L.; Nieuwenhuizen, Chijs van

doi:10.1007/s11948-019-00142-y

Cited by 9 publications

(10 citation statements)

References 61 publications

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“…Of the 33 studies, 6 (18%) involved individuals with lived experience [ 14 , 58 , 62 , 66 , 68 , 70 ], 23 (70%) involved service users [ 6 , 43 - 45 , 47 - 50 , 52 - 55 , 57 , 59 - 61 , 63 - 65 , 67 , 69 , 72 , 73 ], and 4 (12%) involved both [ 46 , 51 , 56 , 71 ]. A total of 18 (55%) studies of the 33 studies included adult participants [ 43 - 47 , 49 - 51 , 54 , 55 , 58 , 60 - 65 , 71 , 72 ], 6 (18%) studies described their participants as young people [ 6 , 52 , 53 , 56 , 59 , 70 ], 3 (9%) studies described their participants as adolescents [ 45 , 68 , 73 ], and 6 (18%) did not specify the age group of their participants [ 14 , 48 , 57 , 66 , 67 , 69 ].…”

Section: Resultsmentioning

confidence: 99%

“…User-centered design was used in 8 studies [ 49 , 51 , 55 , 60 , 61 , 63 , 68 , 71 ], and participatory design was used in 7 studies [ 14 , 46 , 47 , 50 , 62 , 66 , 67 ]. Other identified approaches included value-sensitive design [ 57 ], experience-based co-design [ 52 ], service design [ 54 ], design research [ 59 ], human-centered design [ 73 ], user-centered development [ 65 , 69 ], community-based participatory research [ 44 ], and participatory workshops [ 43 ].…”

Section: Resultsmentioning

confidence: 99%

“…The Involvement Matrix [ 38 ] was used to ascertain the roles of service users and individuals with lived experience in the analyzed studies. None of the studies included the participants as “listeners,” whereas 16 studies featured participants in the role of a “cothinker” [ 43 , 44 , 46 - 49 , 51 , 54 , 55 , 57 , 61 , 62 , 65 , 66 , 69 , 71 ], providing their opinions on ideas or evaluating test sessions of innovations developed by the researchers. In addition, participants served as “advisers” in 11 studies, offering solicited or unsolicited feedback to researchers and designers [ 14 , 52 , 53 , 56 , 59 , 60 , 63 , 64 , 68 , 70 , 73 ].…”

Section: Resultsmentioning

confidence: 99%

“…Grim et al [ 46 ] used participatory design processes to develop a web-based system and found that incorporating user perspectives can tailor an innovation to the needs of the user group. Maathuis et al [ 57 ] used a value-sensitive design approach to identify potential value conflicts in the design of an internet-based quality-of-life tool for people with mental health problems. The study showed how the approach made it possible to identify and anticipate potential value conflicts and patients’ needs in the design.…”

Section: Resultsmentioning

confidence: 99%

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The Involvement of Service Users and People With Lived Experience in Mental Health Care Innovation Through Design: Systematic Review

Veldmeijer¹,

Terlouw²,

Os³

et al. 2023

JMIR Ment Health

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Background Mental health care faces challenges that not only necessitate innovation but also require the involvement of service users and people with lived experience in developing and evaluating mental health care services. As the development of digital interventions is becoming more prevalent, design approaches are increasingly finding their way into mental health. There is evidence that these approaches can successfully integrate user experience into mental health services. However, there is no clear overview of the studies conducted and the lessons learned concerning the involvement of service users and people with lived experience. Objective In this systematic review, we aimed to provide an overview of the involvement of service users and people with lived experience in mental health care services through design approaches and to synthesize the advantages of design approaches in mental health care. Methods The following 5 databases were searched for relevant abstracts: PsycINFO, PubMed, Web of Science, Scopus, and Embase. In addition, 2 health design journal archives, Design for Health and The Journal of Health Design, were searched. To categorize the results, we collected the reported added value from the included articles and conducted a thematic synthesis in which the themes were developed from the retrieved data. The themes were discussed, revised, and checked until saturation was achieved. Results We included and categorized 33 papers. Most studies involved service users, primarily adults, and used various design approaches. Most of these studies aimed to design or evaluate digital interventions. Service users and people with lived experience were involved in different roles but never as decision makers. Studies that used co-design approaches exhibited the highest levels of involvement. Various added values were reported, including tailoring and testing interventions and digital interventions, improving engagement and collaboration, gathering the needs of stakeholders, and empowering participants as resourceful actors. The challenges reported were maintaining participants’ continued participation throughout the study, managing the iterative nature of design, providing a safe space, balancing insights from design and medical science, and navigating design processes in medical environments. Conclusions This systematic review provides an overview of the studies that used design approaches to involve service users and people with lived experience in mental health care innovation. Design approaches have advantages in mental health care innovation, offering added value and having manageable challenges. Future studies using design approaches in mental health care should involve participants as partners and decision makers and report on collaboration in a systematic and clear manner.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

The Involvement of Service Users and People With Lived Experience in Mental Health Care Innovation Through Design: Systematic Review

Veldmeijer¹,

Terlouw²,

Os³

et al. 2023

JMIR Ment Health

View full text Add to dashboard Cite

show abstract

“…In addition, studies indicate that feedback is most effective when provided to both youngsters and clinicians [ 2 , 5 ]. Maathuis and colleagues [ 38 ] identified this value conflict during the development of a web-based quality of life assessment instrument for youngsters and adults with mental health problems. These results emphasize that there exists a potential conflict between youngsters’ need for autonomy and clinicians’ wish to have unrestricted access, which may influence the effectiveness of feedback.…”

Section: Discussionmentioning

confidence: 99%

I Need to Know: Using the CeHRes Roadmap to Develop a Treatment Feedback Tool for Youngsters with Mental Health Problems

Bongers

Buitenweg²,

Kuijk

et al. 2022

IJERPH

Self Cite

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Patient-Reported Outcome Measures (PROMs) are often used to monitor treatment outcomes in youth mental health care. Unfortunately, youngsters are rarely informed about the results of their PROMs or, when they are, it is in an insufficient manner. Therefore, a web application was developed—together with youngsters—aimed at giving them feedback about their PROMs. The aim of this study is to describe the development process of the application. An expert panel consisting of youngsters, web designers and researchers, as well as a representative from a client organisation, developed the e-health application INK (short for ‘I Need to Know’) in an iterative process based on the Centre for eHealth Research roadmap (CeHRes roadmap). Youngsters prefer, among other aspects, a simple, easy-to-use e-health application with a colourful appearance and want to be able to compare their results across different time points and informants. The INK tool provides youngsters with insight into their PROM results. Based on the youngsters’ preferences, INK users can choose which feedback information is visible. INK facilitates youngsters’ active participation in their treatment as well as shared decision-making with their professional caregivers.

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The participatory value-sensitive design (VSD) of a mHealth app targeting citizens with dementia in a Danish municipality

et al. 2023

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Exploring Human Values in the Design of a Web-Based QoL-Instrument for People with Mental Health Problems: A Value Sensitive Design Approach

Cited by 9 publications

References 61 publications

The Involvement of Service Users and People With Lived Experience in Mental Health Care Innovation Through Design: Systematic Review

The Involvement of Service Users and People With Lived Experience in Mental Health Care Innovation Through Design: Systematic Review

I Need to Know: Using the CeHRes Roadmap to Develop a Treatment Feedback Tool for Youngsters with Mental Health Problems

The participatory value-sensitive design (VSD) of a mHealth app targeting citizens with dementia in a Danish municipality

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