A Smartphone App to Foster Power in the Everyday Management of Living With Schizophrenia: Qualitative Analysis of Young Adults’ Perspectives

Abstract

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.

Barriers to and Facilitators of User Engagement With Digital Mental Health Interventions: Systematic Review

“…Participants reported that the perceived changes they experienced in their mental health as a result of using an intervention affected their further engagement. Perceived symptom improvement facilitated further engagement [ 89 , 95 , 103 , 145 , 146 , 189 , 197 - 199 ], whereas exacerbation of symptoms negatively impacted engagement [ 49 , 93 , 104 , 200 ]. Other negative impacts of the intervention were also observed as barriers to ongoing user engagement.…”

mHealth for schizophrenia spectrum disorders management: A systematic review

“…Less is known about efficacy of these interventions: whereas technologies target different symptoms, they are evaluated with different assessment tools. There are studies, that report results on feasibility of digital intervention and users’ satisfaction (Dennison et al, 2013; Terp et al, 2018; Wartena & van Dijk, 2013), which requires further investigations of clinical efficacy. Representativity of clinical effects in another studies is a challenge due to a low number of participants (only six technologies were tested on more than 100 participants; Bain et al, 2017; Berrouiguet et al, 2017; Španiel et al, 2012), lack comparisons with control group or ‘digital placebo’ effect (Torous & Firth, 2016) and unknown efficacy of long-term follow-up.…”

Adverse event monitoring in mHealth for psychosis interventions provides an important opportunity for learning

“…This included reminding the participant of an inbuilt five-hour window to respond to questions, a feature which was included as a result of beta-testing feedback that suggested some people felt pressured by a limited response window. A heightened sense of paranoia and increased fear of recurrence were included in our protocol and medical device registration documents as anticipated risks of the intervention and heightened feelings of paranoia as a result of routine monitoring in psychosis have been reported elsewhere (Eisner et al, 2019;Terp, Jørgensen, Laursen, Mainz, & Bjørnes, 2018).…”