|Year : 2021 | Volume
| Issue : 3 | Page : 183-188
A Process Narrative of Developing a Mobile App (Saksham) for Patients with Schizophrenia and Related Disorders in Low-Resource Settings
Mamta Sood1, Nishtha Chawla1, Tulika Shukla1, Rekha Patel1, Pushpendra Singh2, Mohapradeep Mohan3, Swaran P Singh3, Rakesh Kumar Chadda1
1 Department of Psychiatry, All India Institute of Medical Sciences, New Delhi, India
2 Department of Computer Science and Engineering, Indraprastha Institute of Information Technology Delhi, New Delhi, India
3 Mental Health and Wellbeing, Warwick Medical School, University of Warwick Medical School Building, Gibbet Hill Campus, Coventry CV4 7AL, England, UK
|Date of Submission||22-Nov-2021|
|Date of Decision||25-Nov-2021|
|Date of Acceptance||10-Dec-2021|
|Date of Web Publication||23-Dec-2021|
Dr. Mamta Sood
Department of Psychiatry, All India Institute of Medical Sciences, New Delhi - 110 029
Source of Support: None, Conflict of Interest: None
Schizophrenia and related psychotic disorders cause significant disability and burden. Majority of these patients receive minimal psychosocial care. Globally, there has been explosive growth of telecom network with high internet penetration even in low-resource settings like India that has the second largest network in the world. Mobile apps for these patients have been designed in high-income countries. The studies from low and middle-income countries are lacking. Over this background, we aimed to develop a mobile app for patients with schizophrenia and related disorders for a funded project by an interdisciplinary team comprising of mental health professionals and computer science engineers. The plan was to conduct focused group discussions (FGDs) to assess needs and viewpoints of the stakeholders, followed by designing of text-based modules that would be digitally transformed into mobile-based application for use by the intended participants. Six key domains were identified in FGDs for intervention: medication adherence, activities of daily living, promoting physical health, engagement in meaningful work, building of social and support networks, and psychoeducation. We developed a mobile app (Saksham) for both patients with schizophrenia and their caregivers in English and Hindi. The development process was complex and passed through many phases. Saksham app was subsequently deployed in the research project. In this paper, we document the process of designing the mobile app with an aim to guide future developers and sensitize them about the inherent complexities in this endeavor.
Keywords: India, mobile app, Saksham, schizophrenia
|How to cite this article:|
Sood M, Chawla N, Shukla T, Patel R, Singh P, Mohan M, Singh SP, Chadda RK. A Process Narrative of Developing a Mobile App (Saksham) for Patients with Schizophrenia and Related Disorders in Low-Resource Settings. World Soc Psychiatry 2021;3:183-8
|How to cite this URL:|
Sood M, Chawla N, Shukla T, Patel R, Singh P, Mohan M, Singh SP, Chadda RK. A Process Narrative of Developing a Mobile App (Saksham) for Patients with Schizophrenia and Related Disorders in Low-Resource Settings. World Soc Psychiatry [serial online] 2021 [cited 2022 Sep 27];3:183-8. Available from: https://www.worldsocpsychiatry.org/text.asp?2021/3/3/183/333431
| Introduction|| |
Schizophrenia and related psychotic disorders, although low in prevalence (0.5%–1%), cause significant individual disability and burden on caregivers and society. Pharmacological treatment helps in reducing symptoms, and psychosocial treatment improves functioning. In low-and middle-income countries like India where prevalence of the illness in terms of absolute numbers is nearly 5.5 million (0.4%) with treatment gap of about 75%, psychosocial treatments are minimally applied due to lack of manpower as well as infrastructure resources.
Globally, a large population is covered by mobile cellular network (~94%). Mobile phones are used for health care because of portability, better computational capacities, cheaper cost, and internet connectivity. Furthermore, there is no requirement for physical proximity of health providers and fixed infrastructure. Since mobile phones are being used in daily life, the users do not have to learn new skills. In mental health, mobile technologies have been used for interventions related to screening, health promotion and prevention, early intervention, treatment, relapse prevention, improvement of health-care delivery, professional education, and research., Mobile apps have been used for intervention in various psychiatric disorders such as anxiety disorders, eating disorders, bipolar disorders, schizophrenia, depression, and substance use disorders.,,,,, These have used short message service (SMS), within application notifications, voice messaging or video, and ecological momentary assessments recorded in real time. The interaction between the clinician and the user can be live, asynchronous, or autonomous, and its content can be standardized or tailored to user data. Most of these interventions have been designed for use by patients in high-income countries. Studies from low and middle-income countries are lacking. There is a scope for employing such interventions in low-resource settings like India owing to large treatment gap,, and high cellular network penetration in our population.
In the absence of adequate state sponsored social benefits, and societal norms of families taking care of ill relatives, family members play a significant role in psychosocial care. More than 90% of the patients continue to stay in the community with families. In the last decade, the low-and middle-income countries have witnessed explosive growth in telecom network and a high internet penetration. India has the second largest network in the world with nearly 1186.84 million wireless telephones with a teledensity of ~86%. The presence of large tele-network in the country has the potential to be an important mental health-care service link between the meager mental health services and unfulfilled mental health-care needs of many unreached patients and caregivers.
In this paper, we describe and interpret our experience of interdisciplinary collaboration between a team of mental health professionals (MHPs) and computer science engineers (CSEs) for creating a mobile app for patients with schizophrenia and their caregivers residing in low-resource settings. We document the process of designing the mobile app with an aim to guide future developers and sensitize them about the inherent complexities in this endeavor.
| Antecedents to Development of Mobile Apps|| |
We collaborated with Indraprastha Institute of Information Technology, Delhi, in 2015, to explore the use of mobile technologies in persons with schizophrenia and related disorders. Psychiatry department at our center is in a tertiary care public hospital with a medical school in North India. It has outpatient and 32-bedded in-patient facility with round-the-clock psychiatry emergency services. RKC and MS are faculty in the department and are responsible for teaching, providing inpatient and outpatient clinical care and handling various administrative responsibilities in addition to their research responsibilities. The collaborating institute is a teaching and research-oriented public university, with a focus on computer science and allied areas in research. We created an interdisciplinary team comprising of MHPs and CSEs, with the members engaged in dialogue-based discussions. Initially, to sensitize the CSE team, the team members were invited to the psychiatry inpatient and outpatient services to meet persons with mental illness, particularly with schizophrenia and related disorders. Both teams independently did literature search and brainstormed on what kind of work they wanted to do. The teams collaborated and conducted a few research projects jointly documenting extant literature on scope and applications of mobile applications in mental health.
In 2016, at our center, we conducted the first study to document whether patients with mental illness used mobile phones. We found that 87.7% of patients attending outpatient services reported using mobile phone on a regular basis. Mobile phone was used for phone calls, sending, and receiving short text messages (SMS), recreation, and accessing social networking sites. Most of the users agreed that the mobile phone could be used as an aid in mental health service delivery and expressed willingness to receive educational messages. Further analysis of this sample revealed that 84.4% of the persons with severe mental illness possessed a mobile phone.
In a study conducted on 88 patients and 88 caregivers, we found smartphone ownership similar to the national average (30%) in both caregivers (38.6%) and in patients (31.8%). We also conducted focused group discussions (FGDs) which provided insight into the various apprehensions of caregivers in using and allowing patients to use smartphones and such apps. Caregivers preferred mobile apps for accessing information regarding services and resources available for their wards and felt that such apps could be helpful if these could automate some of their routine caregiving activities. Thus, developers needed to work closely with patients' family members and follow a ground-up collaborative approach to app development.
Furthermore, the team built an initial prototype of a mHealth system– “Harmony” which was designed to be used by the patients, caregivers, and clinicians to achieve a common goal of helping the patient in abiding an effective morning routine. The system was composed of three components: an android application for patients, an android application for caregivers, and a web dashboard for clinicians.
| Development of Mobile App|| |
In 2017, in collaboration with Warwick University (UK), we received funding from the National Institute of Health and Research as part of Warwick-India-Canada (WIC) global mental health group for carrying out a project with aims to develop a home-based psychosocial care model aiming at functioning and recovery for patients with schizophrenia that also included developing mobile based applications. This was to be done by our already established interdisciplinary team comprising of MHPs and CSEs. Ethical clearance from the institutional ethical committee was obtained (IEC 252/05.05.2017).
As a part of this project, the plan was to conduct FGDs to assess needs and viewpoints of the stakeholders (namely, patients, caregivers, and MHPs), followed by designing of text-based modules that would be digitally transformed into mobile-based application for use by the intended participants. Six key domains were identified in FGDs for intervention: medication adherence, activities of daily living, promoting physical health, engagement in meaningful work, building of social and support networks, and psychoeducation. The participants also confirmed potential utility of mobile apps in imparting psychosocial care.
The process of designing mobile app proceeded in distinct phases:
Phase I (hope) (6 months)
Project goals were discussed between the teams and literature was reviewed. It was agreed upon mutually that the mobile applications developed for schizophrenia and related disorders in high-income countries were not suitable for direct application in our context due to various reasons.
Firstly, families are allies of the treatment team, are culturally expected to, and keenly take over the caregiving role – so mobile applications should be designed in a way that these involve both patient and caregiver.
Secondly, due to abysmal number of MHPs such as social workers, clinical psychologists, psychiatric nurses in the country, the psychosocial care usually is driven by treating psychiatrist. Due to lack of adequate number of MHPs, it would be difficult to provide real time/live interactive app, which is likely to have sustainability issues. Hence, the data were to be stored in the device when not connected with internet. Whenever connected with internet, data would be transferred to backend server.
Thirdly, as android-based smart phones costing 100–150 dollars are available, it was decided to work on android base. For wider utility, we chose to make mobile apps in English language as the prototype with possibility of translation to any Indian language and Hindi– national language.
We made text-based modules on medication adherence, monitoring of physical health, and activities of daily living as well as complex activities, weight management like eating healthy and avoiding unhealthy food, and for psychoeducation. These were handed over to the CSE team as word documents in English and Hindi. We presumed that content would be digitized and a mobile app would be ready. However, we understood slowly that this was not so simple.
Phase II (confusion) (6 months)
The work on making of mobile apps started in April 2018. However, this phase was marked by confusion that was caused by lack of understanding between the teams. MHPs were expecting a typical mobile app downloadable from the play store after they handed over the content in word document. There was a lack of knowledge as well as understanding of the processes that were needed to convert this document to an app and about the kind of work that was needed to be done by the CSEs. CSEs also could not appreciate the ignorance of the MHPs regarding the technical aspects. Based on the content, a prototype app was designed as an alarm for morning medication intake in April-May 2018. It was deployed in two patients. The feedback included exploring the modes of communicating messages to patient for medication adherence– pledges in patient's voice, visual graphical messages, videos, etc., Furthermore, it had a fixed medication timing which could not be modified by participants. A need to sync the caregiver and patient's mobile was suggested so that feedback could be sent if caregiver confirmed adherence. It was felt that app should be more interesting and attractive. For this purpose, an illustrator was then recruited for the project in June 2018. In the meanwhile, a name was chosen for the app – “Saksham” (meaning capable).
The illustrator made male and female characters. We suggested that male caregiver should be male to break the gender stereotypes in Indian looks, dress, and demeanor. A few video clips were made, e.g., of a male character getting up from the bed. In the meantime, the text-based modules were given to three pairs of patients and their caregivers for use. The videos were also shared with three patients and families. Their feedback was that the content of the module was too bland to motivate the reader/user. The videos did not convey any meaningful message and were not appropriate culturally or contextually. Finally, the idea of making videos for the app was dropped.
As there was no headway being made, our team once again reviewed literature on mental health apps for persons with mental disorders. Although the extant literature was rich on various kinds of apps and their use, we could not find any paper that could guide us through the process of developing an app. The MHPs decided to download the mental health apps for schizophrenia and understand their functioning and reached out to colleagues to understand their experience in implementation of projects on mental health apps.
From this exercise, many features and principles regarding the future app became clear. These were keeping the display simple, the content short and easy to understand (with audiovisuals or symbols or icons), providing on-the-spot tips that could come as pop-ups and helpful links, nonmonotonous, nonrepetitive, nonintrusive messages for the users, minimum and personalized process of data entry. It was also important to have a built-in reward system and flexibility.
Phase III (a bridge) (12 months)
The CSE team was working with a graphic designer in their lab. In August 2018, they introduced the idea of including a graphic designer for creating visually appealing content and improving overall display of the app and individual modules. Several meetings were conducted with her. This was the deciding step. The visualization and clear structure of the content designed by her helped in bridging gap in between the two disciplines. MHPs, trained in dealing with the human beings and their suffering, had poor knowledge about the technology/technological aspects. Engineers had knowledge about the technical aspects but had no idea about what it entails to deal with human beings having mental health issues. This also helped in understanding of each other's limitations as well as acceptance of complexities inherent in practice of both the disciplines. Further, based on feedback from the pilot testing of text-based modules, need to simplify the content was also felt.
It was decided that the content of the booklets and app will be same.
MHPs simplified the content of all the text-based modules to make them easier to use and relevant for the patients and families. It was easy to include these simpler versions as the content for the app. CSEs further modified the process of entering data in text-based modules based on the feedback collected from a pilot study in 7 patients and caregivers. The graphic designer created many illustrations as well as pictures for every intervention module. She also designed one mascot which was named “Sarathi (charioteer)” for app and booklet-based intervention. Some important pop-up messages were also designed with help of attractive pictures. A chart of healthy food items for diet modification module was created. The designer created booklets and presented all the content from word documents (prepared by MHPs) in visual form creating a clear structure/template.
As the user interface was being improved for the app, as well as for the booklets, an idea of creating a user form came up. User form was created which later became a separate booklet for documenting the task done.
Phase IV (clarity and creation of app) (6 months)
Logo for mobile application intervention was designed. Six modules were included in patient's app from booklet-based intervention: Medication adherence, physical health, daily routine, eating right, self-reliance and psychoeducation. Four modules were included in caregiver's app from booklets-based intervention for them: Medication adherence, daily routine, psychoeducation, and “my day” The last section was intended to assess the daily stress or mood of the caregiver. A report section was also added in caregiver's version where the caregiver could see the daily progress reports of their patient's activities. A library was also included in both the apps where relevant and helpful information could be stored by the users.
Alarm could be set in patient's app for each module and there was provision of notifications for various activities and modules. Caregivers could also receive notification in their app for patient's activities which were set by patients.
Info section, progress section and sarathi (charioteer) messages were included in patient's app. Info section and sarathi messages were also included in caregiver's version of the app. Specific icons were created for every intervention module as well as other important sections of application. One video was added with audiovisual messages in self-reliance module in patient's version of the app. These were deployed in 7 patients and their caregivers, and their feedback was used to improve the apps further.
Initially, the app would crash multiple times. Some of the content information that was in text was converted into PDFs that were integrated in the app. There were multiple bugs in the app and to resolve the issues related to bugs, modified versions of the app were tested many times by the CSE team. Further, both versions of application were shared with the MHP team who downloaded app in their handsets and used it for 1 week and provided feedback to CSE team. To minimize the bugs in app, it was decided to use same version of android phones (android version-7) for app functioning.
The user manuals were also prepared with aim to help and guide the participants for using mobile application intervention. These had every single step of app functioning, and pictures of every screen like registration, disclaimer, participant's information sheets and specific modules were included in user manuals. Finally, four user manuals were prepared (Hindi and English) for patients and caregivers.
Disclaimer, participant information sheet, and consent form for patient and caregivers for using this mobile application intervention were designed. One registration screen was included in both the Apk (Android Package) of apps where participants required entering their e-mail id to access the app. Finally, the Saksham app – both caregiver and patient version was ready. The app also had provision for translation into other languages in future.
Phase V (deployment) (9 months)
As part of the research project, the Saksham mobile app was deployed in 25 pairs of patients and caregivers for 3 months. They were assessed at baseline, and after 1 and 3 months of follow-up. Before recruitment of the participants, the research team (MHPs) used Saksham app intervention for many days and several meetings were conducted with the CSE team. For the project, both teams decided that the research team would provide app uploaded smartphone handsets to participants and would complete the initial registration process. For other app functioning at home, participants could work with app either online using their own internet services or offline, if a participant did not have internet services. In case of offline use, at the time of follow-up, user's phone would be connected to internet and data stored in the app would be transferred to main data capturing system with CSE team.
To ensure the participant's proper understanding of app functioning, it was decided that participants would be provided proper training by MHPs for using this app with the help of user manuals. Although user manual was part of the mobile app, the users were also given the hard copies of user manual so that they could use these at their home in case of any difficulty. They were also requested to make phone calls to research team, if they had any difficulties regarding app functioning and could not solve it with the help of user manuals. Finally, all the participants could be recruited, and study was completed in about 9 months from Oct 2020 to May 2021. The backend app data was stored in a secure server. Work was halted in March to September 2020 due to COVID pandemic and no new participants could be recruited due to running of non-COVID services at minimum capacity.
Final storage of the data at the backend would be at a safe server at our Institute that would be implemented with the help of the computer facility.
| What Worked for the Interdisciplinary Collaboration?|| |
The teams had worked together before starting work on the project and had rapport with each other. The initial progress took some time for both the teams to arrive at a common understanding. The most important lesson for the MHPs was that the CSEs see the content in terms of codes and write codes for each word, sentence, or picture. Even if there was a seemingly little change in the content like introducing s single word, they would have to rewrite the code again. So gradually, once the content was agreed upon, only minimal changes were suggested to the CSEs. CSEs also got sensitized to the human interface of the codes they had written for the app. It was seen that interdisciplinary collaboration often led to better opportunities and learning for the collaborating teams, e.g., opportunity to go beyond traditional ways of thinking, pooling of knowledge and experience, potential to develop lifelong bonding, gain from others' wisdom, sharing the burden, tasks, as well as recognition and accolades, and better funding. The team processes that helped to make the collaboration fruitful in our research are presented in box below [Box 1].
| Conclusion|| |
An interdisciplinary team comprising of MHPs and CSEs developed Saksham app for both patients with schizophrenia and their caregivers in English and Hindi. Before developing the app, the collaborators deliberated on the context in which this app was to operate; low-resource setting, mobile phone and smartphone usage in the patients and caregivers, integrated app for both family caregivers and patients, and usability while offline. The development process was complex and passed through many phases. It was guided by the end users at each step. It has been deployed in a research project and would be rolled out for public use after completing necessary steps.
Financial support and sponsorship
This study was funded by the National Institute for Health Research, UK (Project number: 16/137/107). SPS is part funded by the NIHR Global Health Group WIC and by the West Midlands Applied Research Collaboration (ARC).
The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
Conflicts of interest
There are no conflicts of interest.
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