JMIR FORMATIVE RESEARCH

Mehdizadeh et al

Original Paper

An mHealth Self-management System for Support Children With
Acute Lymphocytic Leukemia and Their Caregivers: Qualitative
Co-design Study
Hamed Mehdizadeh1, PhD; Farkhondeh Asadi2, PhD; Hassan Emami2, PhD; Azim Mehrvar3,4, MD; Eslam Nazemi5,
PhD
1

Department of Health Information Technology, School of Allied Medical Sciences, Mazandaran University of Medical Sciences, Sari, Iran

2

Health Information Technology and Management Department, School of Allied Medical Sciences, Shahid Beheshti University of Medical Sciences,
Tehran, Iran
3

MAHAK Hematology Oncology Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran4

AJA University of Medical Sciences, Tehran, Iran

5

Department of Electrical and Computer Engineering, Shahid Beheshti University, Tehran, Iran

Corresponding Author:
Farkhondeh Asadi, PhD
Health Information Technology and Management Department
School of Allied Medical Sciences
Shahid Beheshti University of Medical Sciences
Qods Square, Darband St
Tehran, 1441663773
Iran
Phone: 98 21 2271 8531
Fax: 98 21 2271 8531
Email: asadifar@sbmu.ac.ir

Abstract
Background: The unique features of smartphones have extended their use in different fields, especially in the health caredomain. These features offer new opportunities to support patients with chronic conditions by providing them with information,
education, and self-management skills. We developed a digital self-management system to support children with cancer and theircaregivers in Iran (low- and middle-income country).
Objective: This study is aimed at the development and preliminary evaluation of a cancer self-management system (CanSelfMan)
tailored to the needs of children with cancer and their parents or caregivers.
Methods: This study was conducted in collaboration with a multidisciplinary team between January and February 2020 at
MAHAK’s Pediatric Cancer Treatment and Research Center. We developed a self-management system in six stages: requirement
analysis, conformity assessment, preparation of educational content, app prototyping, preliminary evaluation, and developing thefinal version.
Results: A total of 35 people (n=24, 69% parents and n=11, 31% children) volunteered to participate in the study. However,
only 63% (15/24) of parents and 73% (8/11) of children were eligible to participate. By adopting a user-centered design approach,
we developed a mobile app, CanSelfMan, that includes five main modules (knowledge base, self-management tips, self-assessment
report, ask a question, and reminders) that provide access to reliable information about acute lymphocytic leukemia and theself-management skills required for side effect measurement and reporting. A web-based dashboard was also developed foroncologists and included a dashboard to monitor users’ symptoms and answer their questions.
Conclusions: The CanSelfMan app can support these groups by providing access to reliable information about cancer, facilitating
communication between children or parents and health care providers, and helping promote medication adherence through areminder function. The active participation of the target group can help identify their needs. Therefore, through the involvementof stakeholders such as patients, caregivers, and oncologists in the design process, we improved usability and ensured that the
final product was useful. This app is now ready to proceed with feasibility studies.
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KEYWORDS
digital health; eHealth; mHealth; mobile app; smartphone; mobile phone; self-management; patient education; children; caregivers;
acute lymphocytic leukemia; user-centered design

Introduction
Background
More than 90% of children worldwide live in low- andmiddle-income countries (LMICs) where accessing high-quality
health care is difficult or expensive [1]. On the basis of the
Global Cancer Inventory reports, by 2025, the number of newcancer cases will be higher in LMICs than in other regions [2].
Although the incidence of cancer is very low in children
compared with adults, it is still the second leading cause of
mortality among children, even in high-income countries [3].
It is predicted that, by 2030, approximately 60 million children
will die worldwide because of cancer before the age of 5 years[4]. Iran is a developing country with a population of
approximately 84 million. Similar to most LMICs, there are no
precise statistics on childhood cancer in Iran [1]. The results ofa systematic review showed that the incidence rate of pediatriccancer in Iran is 16.5 per 100,000, which is slightly higher thanthat in other countries [5]. Moreover, reports related toprovincial registries indicate that leukemia (with a prevalenceof 30%) is the most prevalent type of cancer among children in
Iran, similar to other countries [6-8].
Approximately 80% of all the cases of leukemia in children areof the acute lymphoblastic type [9]. The common treatment forthis disease is chemotherapy, which causes severe side effects[10-12]. The intensity of the symptoms and their effects on thechild are sometimes so high that without the ability to control
and manage these symptoms, they may lead to hospitalization
or even withdrawal from the treatment plan by the patients andtheir families [13,14]. Furthermore, patient management at home
is highly challenging for patients, families, and caregivers [15].
These challenges include the ability to manage complex
therapeutic protocols (eg, diagnosis and measures to control thesymptoms), proper nutrition diets, coping with psychologicalside effects, and interacting with the health care system during
the treatment plan [16]. These challenges are especiallycomplicated in children and adolescents with chronic conditions,and adherence to therapeutic protocols in this group is <50%
[17]. Therefore, empowering patients by providing informationand self-management skills is a key factor in reducing side
effects and improving their quality of life [18], especially forthe parents who usually do not have sufficient knowledge ofthe disease, treatment, and symptom management [19].
The results of studies specifically examining the role ofeducational interventions among children with acutelymphocytic leukemia (ALL) and their parents indicated that
information provision and increasing parents’ knowledge about
the disease greatly supported the family, enhanced parents’ability to take care of their children, and considerably improved
the family’s quality of life [20-23]. Consequently, patient
education and the provision of information are major
responsibilities of health care providers during the treatment
period [24]. However, factors such as the multiplicity of tasks
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and limited time for education are the primary barriers to thefull exercise of this responsibility [25,26]. As a result, theycannot spend enough time on patient education [27], and mostof this instruction is provided by nurses via educational
pamphlets or in-person sessions [20,28], which alone does not
greatly affect health-related behaviors and outcomes [29]. For
instance, approximately 40% to 80% of the information provided
orally to patients is immediately forgotten, and half of theinformation is probably recalled incompletely or erroneously[30]. Using pamphlets does not seem to be a good method
because it eliminates interactions and provides the same levelof information for people with different levels of literacy andneeds [31]. Therefore, there is a need for new methods toempower and enhance the knowledge of this group [32].
One such method is self-management, which is currently oneof the best methods for cancer management [33].
Self-management emphasizes the role of education in preventive
and therapeutic care activities [16]; highlights the role of thepatient or caregiver in symptom identification, assessment, andreporting to health care providers; and helps the adoption ofsuitable measures for symptom prevention or control [34,35].
Usually, self-management interventions are implemented withthe participation of health care specialists [16]; therefore, withthe participation of clinical specialists, patients, and families,
they can enhance patients’ knowledge and empower them toachieve therapeutic goals in different stages of treatment [33,35].
Studies show that even short periods of self-management
education provided by health care specialists have positiveeffects on clinical outcomes [25] and increase the patient’s
ability to control their chronic condition, thereby improving
their quality of life [33,36]. An important feature ofself-management interventions compared with conventional
patient education programs is the customization feature thatmakes it suitable for use by every person [37].
This feature is made possible using information andcommunication technology tools such as smartphones [38]. The
unique features of smartphones, such as accessibility, internet
connectivity, and supported third-party apps, have extended
their use in different fields, especially in the health care domain[39,40]. These features offer new opportunities to support
patients with chronic conditions and provide them withinformation, education, and self-management skills. The World
Health Organization introduces mobile health (mHealth) as a“domain of digital health aiming to provide or receive
health-related information and services by using mobile
communication and portable devices, e.g., cell phones, patientmonitoring devices, personal digital assistants, and otherwireless devices” [41,42]. The use of mHealth provides anopportunity for children and their families to receive informationand education without visiting health care centers and specialists,
control their condition through self-management, and enhancetheir quality of life [43,44].

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Although the successful implementation of self-management
programs requires the participation of all 3 groups, the resultsof a scoping review conducted in the requirement analysis stage
revealed that numerous studies have been conducted in different
countries, which developed mHealth interventions to support
children with cancer and their families [45]. However, only afew studies engaged all stakeholders and developed
self-management systems specifically to support children with
ALL and their parents, which is the most prevalent type of
pediatric cancer.
For instance, Wang et al [46] designed the Care Assistant app
that provides access to clinical information and economic andsocial support for parents of children with ALL. In fact, themain users and audience of the app were caregivers. Heneghan
et al [47] also developed a smartphone app to enhance
medication adherence in adolescents with ALL. This app
includes a list of relevant drugs and reminders for taking drugs.

Objectives
There is no comprehensive solution that can garner thecooperation and participation of all three groups (children,
parents, and oncologists) and address their different needs.
Therefore, in line with the World Health Organization’s strategy
in terms of performing interventions to increase the survival
rate of children with cancer in LMICs by 2030 [48], we intend
to develop and test a self-management system that provides
information about ALL and self-management skills andfacilitates interaction with oncologists for children and theirparents.

Methods
Setting
This study was conducted between January and February 2020
at MAHAK’s Pediatric Cancer Treatment and Research Center.
MAHAK is a highly specialized pediatric cancer hospital in
Iran. This center has 100 hospital beds and covers >25,000
children with cancer from all over the country (Iran) andneighborhood countries. According to the latest official reports,>6000 children with cancer receive chemotherapy at this center
annually [49].

Participants and Recruiting Method
All participants were recruited from MAHAK’s Pediatric Cancer
Treatment and Research Center in the north of Tehran (Iran).
We used a banner that provided information about the study (inthe MAHAK outpatient chemotherapy clinic) to recruit
interested individuals in this study. A total of 35 individuals(n=24, 69% parents and n=11, 31% children) volunteered toparticipate in the study. However, only 63% (15/24) of parents

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Mehdizadeh et al
and 73% (8/11) of children were eligible to participate. The
inclusion criteria for children were having ALL, being
diagnosed, being aged at least 7 years old (able to express thedisease and the associated problems), and being under treatment
for more than a year. The inclusion criteria for the parents werebeing literate in Persian and having at least one child with adiagnosis of ALL who was receiving treatment for 1 year. These
purposive samples of children with ALL and their parents
allowed for the aggregation of data related to the development
and primary evaluation of this study. Health care providers(oncologists) were also recruited from this center. The inclusion
criterion for this group was having at least 10 years of clinicalexperience in the oncology department. Children were excluded
if they were illiterate, were patients with end-stage cancer,
experienced mental health problems, and were unable to use asmartphone. Parents were excluded if they did not have theability to work with a smartphone, did not have reading andwriting literacy, or were unwilling to provide informed consent.

Ethical Considerations
This research received ethical review approval from Shahid
Beheshti
UniversityofMedicalSciences(IR.SBMU.RETECH.REC.1396.1316). All focus group (FG)meetings took place at the MAHAK hospital and were led bya team member (AM) with experience in conducting FGs. To
avoid the dominance of professional feedback and blend theknowledge and expectations of other stakeholders, theidentification of user needs was examined separately from 3
perspectives. For each FG, approximately 5 participants wereinvited. To attend the FG sessions, these children came to ameeting place with their parents. The children and their parents
signed informed consent forms before each FG. For children,
appropriate written and verbal information about the study andFG was provided, and informed consent was obtained fromtheir parents to participate in the study. They also completed
brief demographic questionnaires that provided information
about age and sex, as well as their disease-related information.

Study Design
Overview
We adopted the user-centered design approach (Figure 1), in
which all the stages of design, development, and evaluation
were performed with the participation of the end users [50,51].
On the basis of this approach, the system was designed with theparticipation of children with ALL, their parents, and amultidisciplinary team (software engineers, medical informatics
specialists, oncologists, pediatricians, and psychologists) in thefollowing stages. Moreover, a qualitative methodology (FGs)
was applied to identify the most relevant requirements from theusers’ perspective.

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Figure 1. User-centered design process in this study [16]. HLO: Health Literacy Online; UI: user interface.

Requirement Analysis
There was no standard regarding the components and content
of a self-management system for cancer; thus, we conducted areview to identify the common features and components of suchapps for children and adolescents with cancer and their families.
The FG method was then adopted to identify user requirements.
A total of 3 separate meetings (1 session per group) were held
for children with ALL, their parents, and specialists. Thesemeetings were held in the conference hall located on the fourth
floor of the MAHAK. The sessions lasted 40 minutes forchildren (based on the FG guidelines for children) [52,53] and90 minutes for adults and specialists. All sessions were recorded,and qualitative data were analyzed using thematic analysis.
Descriptive statistics were used to characterize the study
participants.

Conformity Assessment
Conformity assessment was a team effort with the collaborationof end user representatives and design team members. On thebasis of a series of high-level requirements identified in theprevious step, we developed wireframe prototypes (the app’s
user interface [UI] version, which is not executable and madeby sketcher software). Wireframes were examined by 38% (3/8)
of children with ALL (aged 7-14 years) and 20% (3/15) ofparents. The aim of this session was to ensure the adaptation of
the initial design to the users’ identified needs.

Preparing Educational Content
To prepare the educational content, we used guidelines provided
by the Cancer Council [54], American Cancer Society [55],Cancer Care Ontario [56], and Children’s Cancer and Leukemia
Group [57], which are reputable organizations and institutions
active in the pediatric cancer field. After being reviewed by 3
oncologists, a pediatrician, and a pediatric psychologist, theselected content was translated (to Persian) and organized basedon the Health Literacy Online guidelines. This guideline assistsin the development of educational content that is understandable
by people with different health literacy levels [58,59].

App Prototyping
The prototype was developed after requirement analysis,
conformity assessment, and preparation of educational content.
This version almost resembled the final version, and users wereable to experience the app and communicate with a UI.

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Preliminary Evaluation
In the next stage, to ensure the accurate performance of the app,a preliminary evaluation was performed using think-aloud (TA)usability testing. An important advantage of using TA in the
preliminary stage of design is the identification and correctionof UI problems before developing the final version [60].
This evaluation was performed with 33% (5/15) of parents and
63% (5/8) of children with ALL, and 33% (5/15) of parents
who were willing to participate in the study and had an Android
smartphone. In this meeting, the researcher explained how theapp works and is used. Each user then performed a number ofpredetermined tasks on the app while orally expressing theirthoughts about functionality, problems, ideas, and exceptions.
The researcher then recorded these ideas.

App Development
A final version was developed based on the results obtained
from the preliminary evaluation. To ensure that the final versionof the CanSelfMan app (a cancer self-management app) meetsuser expectations, an appropriate evaluation must be undertaken.

Results
Stage 1: Requirement Analysis
First, a review study was conducted as there were no guidelines
or standards on the features and components of self-management
apps for children with ALL. On the basis of the results, themodules of symptom evaluation, disease information,communication with specialists, and reminders had the highest
frequency [45]. For requirement analysis, the results were thendiscussed in FG sessions with parents and children with ALL.
Approximately 21% (5/24) of parents were excluded as only 2months had passed since their child was diagnosed, 13% (3/24)
as their child was in the end stages of cancer, and 4% (1/24) as
they did not have a smartphone. Additionally, 27% (3/11) ofchildren were excluded from the study as they were in the end
stage of cancer. The first FG session involved volunteeringparents (10/15, 67%; 6/10, 60% women). The parents’ mean
age was 35 (range 28-43) years, with an education level above
high school diploma. The second FG session involved 63%(5/8) of children with ALL (Table 1). The third FG session washeld with 6 specialists (n=3, 50% pediatric oncologists; n=1,
17% radiotherapy oncology specialist; n=1, 17% pediatrician;and n=1, 17% pediatric psychologist), and their ideas about the
self-management system feature were collected.
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To identify the main themes, all sessions were recorded,transcribed, and thematically analyzed independently using HM
and AM. Interestingly, the main themes obtained throughthematic analysis were almost the same as those obtained froma review study conducted in the initial stage. Based on thethemes identified from the FG sessions, the app modules were
determined (Figure 2).

Table 1. Demographic characteristics for children and parents.
Study phases

Focus group sessions

Think-aloud session

Children (n=5)

Parents (n=10)Children (n=5)

Parents (n=5)

9 (1.9; 7-14)

35 (2.9; 28-43)

11 (1.1; 7-14)

32 (2.8; 25-46)

Female3 (60)

6 (60)

2 (40)

3 (60)Male

2 (40)

4 (40)

3 (60)

2 (40)

Married parent

N/Aa

4 (80)N/A

5 (100)Single parent

N/A

0 (20)N/A

0 (0)Secondary school

N/A

1 (10)N/A

1 (20)

Diploma

N/A

5 (50)N/A

2 (40)

Bachelor’s degree and above

N/A

4 (40)N/A

2 (40)

Age (years), mean (SD; range)
Gender, n (%)

Marital status, n (%)

Education level, n (%)

a

N/A: not applicable.

Figure 2. Focus groups extracted main themes, app module, and their content [61]. ALL: acute lymphocytic leukemia.

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Stage 2: Conformity Assessment
These requirements were subsequently used to develop
wireframe prototypes and technical requirements for thedevelopment phase. A total of 3 children with ALL (n=2, 67%
girls; mean age 10, SD 1.4 years) and 3 parents (n=2, 67% men;mean age 39, SD 1.8 years) as representatives of the end users(selected from FG participants) were selected and took part inthis session. In this session, two members of the design teamMehdizadeh et al(a software engineer and a medical informatics specialist)
attended as well. The aim of this session was to confirm theinitial design based on the users’ views and modify it ifnecessary. In this 45-minute session, a list of the app’s
functionalities was first provided. Finally, for a better
understanding of the user requirements, the wireframe waspresented to the participants (Figure 3). At the end of the session,
all the participants mentioned that the prototype was based on
the requirements identified in the FG sessions.

Figure 3. Example of app wireframe for conformity assessment sessions. ALL: acute lymphocytic leukemia.

Stage 3: Preparing Educational Content
In the next step, a 90-minute expert panel was held with
oncologists (4 oncologists with 15 years of experience, aradiotherapy oncology subspecialty with 14 years of experience,
and a pediatric subspecialty with 11 years of experience) and a
medical informatics specialist to determine the educational
content. After review by this group, 4 main guidelines wereselected (the Cancer Council and the American Cancer Society’s
guidelines for providing information and the Cancer Care
Ontario and Children’s Cancer and Leukemia Group guidelines
for preparing self-management content). Selected content wasthen translated (to Persian) and organized based on the Health
Literacy Online guidelines. This guideline assists in thedevelopment of educational content that is understandable bypeople with different health literacy levels [58,59].

Sage 4: App Prototyping
In stage 4, a prototype was implemented using the Java
programming language and SQLite database in Android Studio.

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For the web-based version, we used the PHP programming
language and MySQL database. The first prototype had fivemodules: information about ALL, self-management tips,
self-assessment form, ask questions, and reminder function.
This version was fully executable.

Stage 5: Preliminary Usability Evaluation
The first prototype was evaluated using the TA method with 10
representatives of the user groups (n=5, 50% children, with n=2,
40% girls; n=5, 50% parents, with n=3, 60% women). Thismethod was performed individually. Before starting the test, in
5 minutes, some explanations about the app and TA evaluation
were provided by HM. The app was then installed on the user’ssmartphone, and some predetermined tasks were performed. At
the same time, the user orally provided comments on the
problems, ideas, functionality, and expectations. The researcher
recorded each user’s comments. Some suggestions and problems
expressed by children and parents at this stage are provided in
Textbox 1.

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Textbox 1. Think-aloud primary evaluation results.
Think-aloud comments•“I wish we could select a profile picture.”•“I worked with a game app before; it had a cartoon character. I wish this app had a cartoon character that I could see on every page. It would
look more attractive.”•“In the symptom evaluation part, score smileys can’t be seen for symptoms of the last row. You have to scroll up every time to see them. I wish
they were fixed so that it’d be easier to fill out the questionnaire, and you wouldn’t have to scroll up.”•

“In the evaluation part, it’d be more practical if you could view the results in the form of charts and send them to a specific Oncologist.”•“The font is too small and illegible in the information about the disease part; I wish we could change the font size.”•“In my favorites part you can’t remove an item from the list. When I added a topic to the list, I couldn’t remove it later.”•“In the reminder part, you can’t choose all days of the week. You can select the minutes only in quarters. You can’t exit the app.”Stage 6: Develop Final Version
Immediately after the preliminary evaluation, modifications
were made, and the final version of the CanSelfMan app wasdeveloped. The app had 2 different versions for children andparents and a web-based dashboard for oncologists (Multimedia
Appendixes 1 and 2). The CanSelfMan UI was specificallydesigned using gamification elements to provide a better user
experience. On the basis of the user’s suggestion, an owl
character was selected as the app symbol (Figure 4). This
character was selected based on the Dove, Owl, Peacock, andEagle Psychological Test that divides people based on theircharacteristics into four groups: dove (symbolizing peace andkindness), peacock (extroverted and showy), owl (logical andsmart), and eagle (courageous and decisive) [62]. The final
version had five modules: ALL knowledge base,self-management tips, self-assessment report, ask questions,and reminders. The module provides explanations about theapp and how to use it.
The ALL knowledge base provides information on thedefinition, etiology, diagnostic methods, medications, andcommon treatment protocols for ALL. The self-management
module included information on identification of symptoms,
evaluation, and control via pharmaceutical andnonpharmaceutical methods, physical exercise, and nutritional
information. A standard Edmonton Symptom Assessment
System–Revised questionnaire was used in the self-assessment
report module. This questionnaire (on a 10-point scale) is

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commonly used in cancer care centers as a tool for the
self-evaluation and reporting of symptoms by patients. Afterconsulting with oncologists for legibility and to facilitate thecompletion of the form by children, a visual equivalent wasused for the options for easier use and response [63,64]. In thispart, the user could complete the evaluation form and view theresults via graphic charts, send them to the oncologists, orpresent them to oncologists during in-person visits. The next
module was ask a question, which enabled direct communication
between children or parents and the oncologist (Figure 5). The
users could ask their questions by completing and sending theform and choosing the oncologist’s name. The important pointin this module is the response time to the questions; this time
was set at a maximum of 24 hours, as agreed by the oncologists.
Moreover, medical recommendations based on the reported
symptoms could be sent. The next module was the reminder
module. Users could create reminders for different topics (taking
medications and oncologist’s appointments). The app notified
the user at specified times.
The web-based version of the app provided a dashboard to viewthe reports and presented questions and answers to the patientsand parents. This version was designed for oncologists. Its main
page displayed the questions and reports received from thepatients. The oncologist could select a question and answer it.
In self-report management, the oncologist could view the reports
sent by the users and, if necessary, make suggestions or send
messages.

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Figure 4. Owl character and the CanSelfMan (cancer self-management) app main page.

Figure 5. The CanSelfMan app (cancer self-management) screenshots of (ask question and self-assessment module).

Discussion
Principal Findings
Most new technologies are not popular among users as they do
not participate in them or consider their needs [65]. On the basisof studies, the main reason for the lack of use of mHealth apps
is that they are developed without the participation of end users;
therefore, in most cases, the outcomes are not compatible withuser requirements and will probably not be used by them
[47,66]. To resolve this problem, a user-centered design
approach was adopted, which is an evidence-based approachbased on the understanding of users’ needs by involving theirhttps://formative.jmir.org/2022/4/e36721

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participation in all stages of the design and development process[66,67]. This method plays a key role in user interest andacceptance and increases the chances of intervention
effectiveness [68]. Therefore, we used this method to develop
the CanSelfMan app. All three user groups (children, parents,and oncologists) participated in the stages. Similarly, Ben-Zeev
et al [69] developed a self-management system by collaboratingwith a multidisciplinary team of oncologists, nurses, software
engineers, and end users.
In this study, we used a qualitative approach (FG) to identify
system requirements and primary evaluations by collecting
narrative information, including people’s experiences and
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feelings. This approach typically uses small sample sizes toinvestigate users’ expectations and beliefs regarding the naturalenvironment rather than looking for generalizable outcomes forlarger samples [70]. There is no clear standard for the numberof children in an FG; however, generally, between 4 and 5
participants seems enough to acquire sufficient data [53,61].
For example, to design Sisom (an app for symptom reportingby children with cancer and direct communication with healthcare specialists), Arvidsson et al [51] involved children aged 6
to 12 years. Similarly, to design the Care Assistant app, Wanget al [46] used FG sessions to identify parents’ needs and provide
access to clinical information and economic support. In the
preliminary stages of designing the CanSelfMan app, to ensurethat the final version meets user needs, we used wireframes
before the final UI design to confirm the user requirements.
Presenting a preliminary UI design provides users with an
overall view of the final product, which may minimally differ
from what the users had seen through the wireframe. Therefore,
users’ participation in confirming/providing suggestions about
the preliminary design garnered their trust and reduced the riskin accepting the final product [71]. After confirming thepreliminary design, a prototype was developed that contained
all the specified modules and had a full UI. The TA usability
test was performed at this stage. It is one of the most importantevaluation methods in the preliminary stages that identifies
possible defects in the UI design and program logic (product)
before developing the final version [60,72].
In this study, we used the TA method to evaluate the
CanSelfMan app prototype with the participation of two usergroups (5 children and 5 parents). On the basis of the TA results,
we developed the final version of the CanSelfMan app.
Similarly, Baau and Markopoulos [73] compared the use of TA
and poststudy interviews with children and found that the TA
method identified more usability issues than the interviews.
Owing to the labor-intensive nature of the TA approach, thesample size was typically small. However, small numbers do
not indicate a small data set, and small sample sizes can stillyield valid information [74]. Nielson [75] suggested that samples
as large as 5 participants would provide adequate information
using this method.
To develop an app for pain control and evaluation in adolescentswith cancer, Jib et al [76] used this method for the preliminary
evaluation of the app and collection of users’ feedback. To
attract users and motivate them to use the app, we used warm
colors and cartoon characters. Using visual and gamification
elements can lead to increased user motivation and reduce thesense of boredom, especially in children and adolescents [32].
The use of an owl cartoon character in different parts of the UI
and the creation of avatars followed the same goal. In a similar
study to develop an app for pain management in children andadolescents with cancer, Stinson et al [77] used graphic elements
and warm colors to increase children’s cooperation. This
technique increased the use of the app and completion of thepain reporting forms [77].
The goal of designing this app was to support children with
ALL and their parents in dealing with cancer and enable theircommunication with health care specialists. The end users of
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this app are classified into three general groups: (1) children
aged >7 years who can use the app independently, (2) children
aged between 5 and 7 years who cannot use the app
independently and need the help of parents, and (3) parents who
can use the app and its features independently or act as a proxyfor using this app for their children aged <5 years. A web-based
version was also developed for oncologists, which provided
interactions with children and parents. This interaction included
questions and answers about the disease and treatment orrequests for changing the in-person appointment dates.
Self-assessment, symptom reporting to the oncologist, andreceiving feedback create an information flow that increases
the interaction between patients or parents and oncologists [78].
This is more important when interacting with children becauseof the difficulty in communicating with them and their lack ofverbal cooperation about the symptoms they experience [79].
Symptom reporting and evaluation are a common part of cancer
self-management apps. Parents’ reports are a proper source forthe symptom evaluation and reporting of children aged <5 years,
children with cognitive problems who have developmentallylower levels of understanding of the disease and symptoms, or
children who cannot perform self-reporting because of theirconditions [62]. Even when children cannot report theircondition, parents’ reports can offer a complementary view
about the child’s condition as parents have accurate knowledge
about the child’s health and are closely involved in the process
of medical decision-making; however, their reports should notlead to the ignorance of children’s views [80,81]. Therefore,
based on the important role of the parents in taking care ofchildren, and because of the limited abilities of children,
especially when they are aged <8 years, any intervention whosetarget group is children should also involve parents in theintervention design as an inseparable part.

Strengths, Limitations, and Suggestions
In this study, we developed the CanSelfMan app in 2 different
versions for children aged >7 years, and another version for
their parents can be used for children aged <7 years. One of thehighlights of our study was the participatory design approachto developing the app. All stages of app development andevaluation were performed with the participation of end users.
This approach, owing to the focus on users and their needs, canincrease user acceptance and user satisfaction with the final
product. Another key strength of our study was the presence ofpeople from different academic disciplines or professional
specializations in the design team (software engineers, medical
informatics specialists, oncologists, pediatricians, andpsychologists). This variety of expertise and differing views
benefited the study and helped us cover different aspects of thesystem and respond to users’ needs from a broader and morediverse perspective. In addition, most of the mHealthinterventions focused on children aged >8 years, and few studies
targeted those aged <8 years. A reason for this might be theuncertainty about children aged ≤7 years regarding their ability
to understand information about cancer and symptom
assessment. However, evidence has shown that most children,
aged as young as 5 years, can fill in symptom assessment
questionnaires alone or with their parents’ help [81].

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The main limitation of this study was related to the small numberof participants in the requirement analysis and evaluation phases.
On the other hand, the CanSelfMan app was developed basedon the requirement analysis of children with ALL and theirparents in only 1 cancer treatment center. Therefore, thegeneralization of the study findings is limited because of thefact that the data were gathered from a single facility with alimited age group of patients. We accepted that this may haveincreased the risk of bias. It is likely that the participants’ viewsin this study are not necessarily those of all children with ALL
or their parents. Therefore, additional research is needed to
examine more children’s and parents’ perspectives before wider
implementation. However, as the purpose of this study was todevelop a self-management system and not to investigate theeffect of this app, the small number of participants in thisprocess was not an obstacle to achieving this goal. We conducted
only a primary usability evaluation; thus, future studies should
include a larger sample size with a wider age range ofparticipants and allocate more time for participants to test the
UI and evaluate usability, which will be the focus of our future
study. In addition, the clinical findings of this intervention have
not yet been studied; thus, further clinical trials are required to

Mehdizadeh et al
demonstrate the efficacy of this product in relation to routine
care.

Conclusions
The use of mHealth can facilitate access to accurate information
about cancer in patients and their families. To access these
services, users should only have a smartphone and little
knowledge about the use of these tools. Despite these confirmed
advantages, most mHealth studies have been conducted indeveloped and high-income countries, and the share ofunderdeveloped or developing countries in these studies isminimal. Meanwhile, a rise in the incidence rate of childhood
cancer is predicted in future years (which will mainly occur in
LMICs). Therefore, we developed a CanSelfMan system(smartphone app + web-based dashboard) to enhanceself-management skills in children with ALL and their parents
or caregivers. The CanSelfMan app can support these groups
by providing access to reliable information and symptom
management skills and facilitating communication between
child/parents and oncologists. It can also be used in specialized
cancer centers, especially LMICs, to increase access to these
services. Future evaluation studies need to investigate theprogram’s effectiveness and cost-effectiveness.

Acknowledgments
This study was conducted as part of the PhD study of HM at the Shahid Beheshti University of Medical Sciences, Tehran, Iran.

Conflicts of Interest
None declared.

Multimedia Appendix 1
The CanSelfMan (cancer self-management) app web version tutorial.
[MOV File , 16558 KB-Multimedia Appendix 1]

Multimedia Appendix 2
The CanSelfMan (cancer self-management) app tutorial.
[MOV File , 4432 KB-Multimedia Appendix 2]

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Abbreviations
ALL: acute lymphocytic leukemia
FG: focus group
LMIC: low- and middle-income country
mHealth: mobile health
TA: think-aloud
UI: user interface

Edited by A Mavragani; submitted 22.01.22; peer-reviewed by B Nievas Soriano, S Badawy, L Nisotel; comments to author 11.02.22;
revised version received 27.02.22; accepted 28.02.22; published 15.04.22
Please cite as:
Mehdizadeh H, Asadi F, Emami H, Mehrvar A, Nazemi E
An mHealth Self-management System for Support Children With Acute Lymphocytic Leukemia and Their Caregivers: Qualitative
Co-design StudyJMIR Form Res 2022;6(4):e36721
URL: https://formative.jmir.org/2022/4/e36721
doi: 10.2196/36721
PMID: 35228195©Hamed Mehdizadeh, Farkhondeh Asadi, Hassan Emami, Azim Mehrvar, Eslam Nazemi. Originally published in JMIR Formative
Research (https://formative.jmir.org), 15.04.2022. This is an open-access article distributed under the terms of the Creative
Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The
complete bibliographic information, a link to the original publication on https://formative.jmir.org, as well as this copyright andlicense information must be included.

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