Smartphone technology is being increasingly viewed as key to engaging young adults with schizophrenia in their own mental health care. In an attempt to use smartphones as an engagement tool, we conducted a participatory design process, where young adults with schizophrenia (n = 4), healthcare providers (n = 7), software designers (n = 3), graphic designer (n = 1), graphic recorder (n = 1), and team leader (n = 1) co-designed a smartphone application for use in early phase schizophrenia care. This paper reports the co-design process. Based on a variety of written data-sources, the paper describes if, and how, participatory design can help construct a physical and relational environment that enables young adults with schizophrenia to become active participants in the design of a more participatory mental health practice. Guided by Etienne Wenger's construct of Community of Practice, three major categories of characteristics and construction of a physical and relational environment supporting and inspiring participation and engagement were identified: (i) a pre-narrative about a community of practice, (ii) the room for design is a community of practice and (iii) the community of practice as a practice of special qualities. It is concluded that participatory design can support and inspire participation and engagement in the development of mental health care with young adults with schizophrenia, given that the environment in which participatory design unfolds is transparent, flexible, secure and informal.
BackgroundLiterature indicates that using smartphone technology is a feasible way of empowering young adults recently diagnosed with schizophrenia to manage everyday living with their illness. The perspective of young adults on this matter, however, is unexplored.ObjectiveThis study aimed at exploring how young adults recently diagnosed with schizophrenia used and perceived a smartphone app (MindFrame) as a tool to foster power in the everyday management of living with their illness.MethodsUsing participatory design thinking and methods, MindFrame was iteratively developed. MindFrame consists of a smartphone app that allows young adults to access resources to aid their self-management. The app is affiliated with a website to support collaboration with their health care providers (HCPs). From January to December 2016, community-dwelling young adults with a recent diagnosis of schizophrenia were invited to use MindFrame as part of their care. They customized the resources while assessing their health on a daily basis. Then, they were invited to evaluate the use and provide their perspective on the app. The evaluation was qualitative, and data were generated from in-depth interviews. Data were analyzed using a hermeneutical approach.ResultsA total of 98 individuals were eligible for the study (mean age 24.8, range 18-36). Of these, 27 used MindFrame and 13 participated in the evaluation. The analysis showed that to the young adults, MindFrame served to foster power in their everyday management of living with schizophrenia. When MindFrame was used with the HCPs consistently for more than a month, it could provide them with the power to keep up their medication, to keep a step ahead of their illness, and to get appropriate help based on their needs. This empowered them to stay on track with their illness, thus in control of it. It was also reported that MindFrame could fuel the fear of restraint and illness exacerbation, thereby disempowering some from feeling certain and secure.ConclusionsThe findings demonstrate that young adults diagnosed with schizophrenia are amenable to use a smartphone app to monitor their health, manage their medication, and stay alert of the early signs of illness exacerbation. This may empower them to stay on track with their illness, thus in control of it. This indicates the potential of smartphone-based care being capable of aiding this specific population to more confidently manage their new life situation. The potentially disempowering aspect of MindFrame accentuates a need for further research to understand the best uptake and the limitations of smartphone-based schizophrenia care of young adults.
Introduction: Disengagement from mental health services in young adults with schizophrenia has been associated with dissatisfaction and unmet needs. Striving to improve engagement, we invited service users recently diagnosed with schizophrenia to be co-designers of a smartphone technology that will be responsive to their needs. Aim: This paper reports the first phase of a threephased participatory design process. The objective was to identify needs of support in young adults recently diagnosed with schizophrenia and to generate ideas of how the needs could be accommodated using smartphone technology. Methods: Participatory design guided the research process and a qualitative approach was used to generate and analyse the data. Data were generated by means of participant observations (n = 45 hours) and interviews (n = 6) with young adults from a first episode psychosis program in Denmark. Findings: Low levels of knowledge and high levels of uncertainties are characteristic of young adults recently diagnosed with schizophrenia, bringing about a vast need of support in order for them to gain power over their new life situation. Our study suggests that the smartphone may be used to foster empowerment by guiding the young adult's actions in situ, providing comprehensive and easily understood information on the go, allowing for recovery tracking, and notification of mental health changes, providing medication overview and giving easy access to healthcare providers. Conclusion: Young adults recently diagnosed with schizophrenia require comprehensive support in order to become empowered to confidently manage their new life situation. The smartphone holds this potential by offering flexible collaboration and timely access to self-management resources.
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