Master's Programme in Health Informatics
Spring Semester 2015
Degree thesis, 30 Credits
Exploring views and attitudes towards using quantified self-­‐tools of children with Down syndrome and their families in Sweden. Author: Hiba Maala Author: Hiba Maala
Main supervisor: PHD student, Sara Riggare, Department of Learning
informatics, Management and Ethics (LIME), Karolinska Institute
Co supervisor: Senior researcher, Maria Hägglund, Department of Learning
Informatics, Management and Ethics. (LIME), Karolinska Institute
Examiner: Professor, Sabine Koch, Department of Learning, Informatics,
Management and Ethics (LIME), Karolinska Institute
Master's Programme in Health Informatics
Spring Semester 2015
Degree thesis, 30 Credits
Affirmation I hereby affirm that this Master thesis was composed by myself, that the work
contained herein is my own except where explicitly stated otherwise in the text.
This work has not been submitted for any other degree or professional
qualification except as specified; nor has it been published.
Stockholm, 20150505
__________________________________________________________
Author Hiba, Maala
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Master's Programme in Health Informatics
Spring Semester 2015
Degree thesis, 30 Credits
Abstract Background: Down syndrome (DS) is a genetic basis condition; one of the
attributes of children with DS is low level of physical activity. Previous study
showed Parents influence their children's level of physical activity and
participation. There is a need to find a way to engage families, who have children
with DS to be more active. The quantified self-tools (QS) are just one of the key
elements that could find this way of engagement. QS is an old concept that has
first been used in 16th century, the general idea of QS is gathering, saving and
analyzing data by individuals to enhance their quality of life or to enhance their
self-knowledge about their body.
Objective: The aim of this study was to introduce QS-tools to the families of DS
children and explore their views and attitudes towards QS-tools. This study is key
to get a better understanding to think about how we can help increase families’
participation in controlling their children’s with DS level of physical activity.
Methods: An exploratory qualitative study was conducted. Purposeful
recruitment to find participants, who were seven families of children with Down
syndrome aged between 10 and 17 years. Interviews were conducted as a data
collection. During the trial period week, 2 types of QS tools were introduced to
parents (Smart body analyser scale from Withings & Wearable activity tracker by
Misfit) so the children used it with parent observation. All interviews were
analyzed by using thematic analytic method and interpretively type of code was
used.
Results: There were varying point of views between supporters and opponents due to
factors that contributed by the QS. Some of the parents found that QS-tools support
some aspects for instance Finding pattern, Active Self care, Motivation &
encouragement, Role model and enhance Family-centred. While others found that
QS-tools hinder another type of aspects for instance Economy concern, Design
Concern, Excessive technology, Unintelligible by child and Future concern.
Conclusion: The data shows that the usage of QS- tools could hinder or enhance the
level of physical activity for children with Down syndrome and the families’
participation. The parents found that this technology is suitable for normal peers,
while their special needs children require special options or programmed functions.
Keywords: Down syndrome, Quantified self, self care, self management,
Family centred, Family empowerment
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Acknowledgements First of all I would like to thank God to shine my way.
I would like to thank the champions, which support me during all my life stages,
thank you my mother, my father and my husband.
I am a lucky mother to have you my little angels Jaafar and Janna
Thanks to all angels with Down syndrome and their families, who inspired me to
do this research. Every single one of them was very passionated.
Thank you to all my friends in Karolinska and in life.
My sincere appreciation to all the teachers at Karolinska institute, especially to
my Supervisor Sara Riggare who guided me and believed in me.
Last but not least, I would like to thank Iraq and Sweden; with out those two
countries I will not be as I am “Hiba Maala”.
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Table of Contents Table of Contents ......................................................................................................... 5 Glossary / List of Abbreviations ................................................................................. 6 List of Figures ............................................................................................................. 6 List of Picture ............................................................................................................. 6 List of Tables .............................................................................................................. 6 1 Introduction .......................................................................................................... 7 1.1 Down Syndrome ........................................................................................................................................... 7 1.2 Quantified self ............................................................................................................................................... 8 1.3 Quantified Self community .................................................................................................................... 9 1.4 Quantified self tools ................................................................................................................................ 10 1.5 The Impact of QS on Health informatics ..................................................................................... 11 1.6 Research problem .................................................................................................................................... 11 1.7 Aim and Objective of the study ......................................................................................................... 13 1.8 Research questions ................................................................................................................................. 13 2 Method ................................................................................................................ 13 2.1 Literature Review .................................................................................................................................... 14 2.2 Preparing of data collection and Participants ......................................................................... 14 2.3 Data Collection ........................................................................................................................................... 15 2.4 Working tools ............................................................................................................................................. 16 2.5 Data Analysis ............................................................................................................................................... 18 2.6 Ethical Consideration ............................................................................................................................. 19 3 Result .................................................................................................................. 20 3.1 Theme 1: Children’s with Down syndrome attributes ........................................................ 20 3.2 Theme 2: Families' role in their child's health management ......................................... 22 3.3 Theme 3: Parents' perception of using QS tools intervention ........................................ 24 4 Discussion ............................................................................................................ 30 4.1 Main Findings ............................................................................................................................................. 30 4.2 Discussion of the method ..................................................................................................................... 35 4.3 Further Study .............................................................................................................................................. 36 5 Conclusion ........................................................................................................... 37 6 References ........................................................................................................... 38 Appendix ................................................................................................................... 43 Hiba Maa
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Glossary / List of Abbreviations
BMI
DS
HCP
HI
QS
P
M
F
Body Mass Index
Down Syndrome
Health Care Professionals
Health Informatics
Quantified Self
Participant
Male
Female
List of Figures
Figure 1-­‐ The official logo of the Quantified Self community .......................................................................................... 9 Figure 2-­‐ Quantified Self Meetup Groups worldwide. (25) ............................................................................................ 10 Figure 3-­‐ Author's primary idea of the child with DS centred ...................................................................................... 12 Figure 4-­‐ Overview of the study design (designed by author) ...................................................................................... 16 Figure 5-­‐ Data analysis phases ................................................................................................................................................... 19 Figure 6-­‐ Codes Map -­‐ Theme 1 .................................................................................................................................................. 21 Figure 7-­‐ Codes map -­‐ Theme 2 .................................................................................................................................................. 22 Figure 8-­‐ Codes map -­‐ Theme 3 .................................................................................................................................................. 24 Figure 9-­‐ Main finding -­‐ Themes affected .............................................................................................................................. 30 Figure 10-­‐ Parents' perceptions toward the usage of QS-­‐tool ...................................................................................... 33 Figure 11-­‐ The parents' future suggestions .......................................................................................................................... 34 Figure 12-­‐ Author's main finding VS behaviour change wheel (54) .......................................................................... 35 Hiba Maa
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List of Picture
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Picture 1 – Withings Smart body analyser scale
Picture 2 – Shine Misfit - wearable activity trackers
Picture 3 – Screenshots of Shine Misfit (Goal, Steps, sleep)
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List of Tables
Table 1-­‐ The variety of QS-­‐tracking categories and variable by K. Augemberg. (20) ........................................... 8 Table 2-­‐ Participants' characteristics ..................................................................................................................................... 15 Deleted:
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1
Introduction
The purpose of this study is to explore the views and attitudes of children with
Down Syndrome (DS) and their families towards quantified self-tools. Exploring
the views and attitudes towards these new technologies, is an important step
towards integrating these technologies in the lives of families, who have children
with Down syndrome.
1.1 Down Syndrome
The subject of this thesis is about a common chromosomal disorder, known as
Down’s syndrome (DS) or trisomy 21. More than a century ago, Down syndrome
was first described by the English physician John Langdon Down (1866). Down
syndrome was classified as a genetic basis (an extra chromosome 21) condition in
1959 by J. Lejeune(1).
People with DS have special needs and face different health problems in their
lives(2)(3). One of the problems they face, is the difficulty to properly manage
their own health(4). Most of the research focuses and defines the underlying
mental, motor, and neurophysiological defects that may account for these
observed performance difficulties(1).
Children with Down syndrome are often called: Children with special health care
needs (CSHCN)(5). In Sweden, Down syndrome affects approximately 1 in every
800 new-born children(6)(7). Besides numerous health problems compared to
normal children (5), most Down syndrome individuals face obesity, hypotonia,
heart defects, thyroid problem, sleeping problem and hearing and visual
impairments.(3)(8)(9) Fine motor skills are less comparing with other healthy
peers, research has characterised Down syndrome with developmental delays in
all functional areas(10). That’s why self-management for Down syndrome is
considered one of the challenges faced by these children.(10)Knowledge is fairly
limited about the functional performance skills of children with Down
syndrome.(9)
The importance of physical activity excludes no one, whether the child is healthy
or has Down syndrome. It has essential effects on the child’s development that
could also impact the quality of life (11)(12). Several studies have shown the
benefits of physical activity and their effects on the body and mind for children
with DS(11).
Parents can influence their children’s physical activity participation(13)(14).
Several studies found a positive correlation between parents’ participation and
support in the physical activity of the children with Down syndrome and enhanced
their child’s performance and reduce sedentary lifestyle (15)(16).
Other research has shown that children with Down syndrome do not undertake the
physical activity which they are supposed to do on a daily basis(17)(11). Also,
studies have shown that early intervention and education and training of children
with Down syndrome simultaneously with a good environment could potentially
improve their development and their participation on health management(9) (18).
1.2
Quantified self
“Quantified Self is rooted in the belief that personal data leads to personal
insights” Mark Moschel
Quantified self is an old concept, which has first been used in the 16th century by
Sanctorius of Padua, who has been tracking his weight food intake ratio for 30
years to study the energy expenditure in living systems in human beings.(19)
The general meaning of the Quantified self (QS) is the idea of an individual
gathering, saving and analysing their data to enhance their quality of life. (20).
Quantified self is based upon three aspects (Track, Reflect and Act). Track means
to measure and explore features of the human body. These features could be
tracking diet, weight, sleep, mood, sex life, exercise, daily stress factors or other
health indicators (Table 1)(20). Reflect means discover and find correlation in
daily patterns and extract meaningful insights. Act mean self-knowledge that
helps to make positive change behaviours(21).
This phenomenon of QS is growing and getting more accurate and specific with
the technological intervention. G. Wolf categorises three types of self-quantifiers:
“That persuade the optimization of something in their life, the curiosity about
what the relationship of certain things in their life, who want to enhance their selfknowledge ”(22).
Table 1- The variety of QS-tracking categories and variable by K. Augemberg. (20)
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1.3
Quantified Self community
The Quantified self (QS) community was formed in 2007 by two editors at Wired
magazine, Gary Wolf and Kevin Kelly(23). This QS term covers all the terms
such as self-tracking, self-monitoring, auto-analytics that can help to explore the
personal meaning for individuals.
Figure 1- The official logo of the Quantified Self community
“ A collaboration of users and tools makers who share an interest in selfknowledge through self tracking” Gary Wolf
Creating this type of repository was very important to allow people to contribute
and share their practice and mistakes(21). Nowadays, technology is accelerating
vey quickly and on the other hand it gets more mainstream and easier to use, less
expensive, low power wireless, capable of automatically sending data to cell
phones or computers and easier to share, which are increasing the capabilities of
self-monitoring in individuals.
In additional to the official website quantifiedself.com, and private blogs,
participants of quantified self collaborate in social networks such as different
Facebook groups.(24) Today, there are more than 42000 members in quantified
self groups and meet ups in more than 41 countries over the world (figure 2).(25)
Most of the participants aim to improve various aspects of their lives, by sharing
knowledge with other quantified self participants, for instance through physical
meetings, QS meetups and virtual social Internet networks and by writing on the
QS blog website. This helps to make better choices and strong engagement by
sharing stories and experiences, describing tools they have been using and raise
health knowledge.(24)
Wolf and Kelly noted, “A new culture of personal data was taking shape”. The big
question now is how the benefit of this new shape is going to be used?
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Figure 2- Quantified Self Meetup Groups worldwide. (25)
1.4 Quantified self tools
In the past measurements were tracked manually, but with the development of
technology and innovation in modern computers and smartphones, wearable
sensors and other devices, techniques, and applications were developed, and most
of the data now is gathered and analysed automatically(26). There are many types
of personal health data such as weight, amount of sleep, calculation of body
movement per day, number of calories burned, heart rate, blood pressure and a lot
of other useful information. All this data can be linked to smartphones via
wireless or Bluetooth connections.
There are many tools to help people track their health status. S. Fox mentioned
three ways to keep track of progress, first keeping track of the individual minds;
second tracking the data on paper (manual tracking) and third tracking is by using
some form of technology, which can be either software-based or hardwarebased.(27)(20) Quantified self-tools hardware-based devices are automatic
devices that can be used on the users’ arm or other places and can collect health
data, analyse and present them to the user in a practical and clear way to keep
track of their health and daily activities.(28) These devices also help facilitate
continuous tele-monitoring of physical activity.(29) Physical tracking tools are
focused in this study. Numerous research and design companies focus on the
personal health domain, especially with tools that help track physical activities.
(30)(31)(32)(33)(34)(35) Software-based quantified self-tools have been rapidly
growing since 2009 with some great examples in web-apps, mobile apps and
desktop apps. These apps are designed to help analyse in- and output from the
users concerning their own body.
The new types of QS tools and the low production costs of sensors open the doors
for further development and more freedom. Over 500 tools for quantified selfprocesses are listed at the Quantified Self community website.(36) These can be
subdivided into different themes such as physical activities, diet, psychological
states and traits, mental and cognitive states, environmental variables, situation
variable and social variable(Table 1).(20)
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1.5 The Impact of QS on Health informatics
One of the Health informatics definition comes from Hersh “ the optimal use of
information, often aided by the use of technology, to improve individual health,
health care, public health, and biomedical research”.(37)
Preventative health maintenance is considered a new concept of health and
healthcare with a focus on reducing the treatment of diseases.(38) Lowering costs
of QS tools and sensors, which make them easily available to individuals to use
and find new patterns and measurements, are produced giving early health risk
warnings to quantified selfers. Although evidence based proof is required in the
medical scientific community, the QS phenomena can help create powerful
medical insights.(26)
In the health domain, the user perspective is as important as the technology
itself.(21) The continuous development of QS tools leads to increased gathering of
health information by quantified selfers.(39) Some of studies show that using telemonitoring technologies opens up opportunities to enhance public health. (40)(20)
(41)
There is a general change happening right now in healthcare systems focussing
more on self-management of the individuals’ health data. The quantified self-tools
are just one of the key elements in that change. Health self-trackers considered
part of quantified selfers: Self-optimization, curiosity and self-knowledge due to
their aim improve their health. On the other hand smartphones have a huge impact
on healthcare, it plays a crucial part in helping individuals to achieve a certain
level of self-management in their health. In 2012 more than 52% of interviewed
by S. Fox gathered health information on their phones.(39) In the same study,
19% of smartphone owners have at least one health app on their phone.(39)
Quantified self has been used for medical reasons to help the patient in many
ways. For instance S. Fox found that people with chronic conditions are more
seriously to track themselves.(42) Rosane Oliveira wanted to explore the
correlation between diabetes and heart disease risk, by using her twin sister as a
control.(20)(43)
Users perspectives are important but in the case where the users were children
with special needs, just like Down syndrome, in these cases families’ perspective
will be equally important as their children perspective towards the new
technology. An appropriate environment around the children could increase their
physical activity.(44)
1.6
Research problem
“I find that the most interesting tools are those that give us the chance to
reflect on who we are,” Wolf
Since the technological intervention of tools and applications accelerates very fast
and in order to meet users' needs to get the best results, it is important to
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understand the opinions, views and attitudes of children with DS and their
families toward self-monitoring, to reverse their perspective.
“Down syndrome children have at least 3 times as many outpatient visits and are
more frequently hospitalized than other children”.(5)
There is a need to find a way to engage families, who have children with DS to be
more active, which could help enhance families’ self-care and lead to higher
participation to increase the level of the physical activity for children with DS,
which can lead to healthier lifestyle.
Optimizing a lifestyle is an issue considered one of the main reasons to push
individuals to use QS projects. (20) In Spain 2013, a study used an application for
smartphones as assistance to improve adherence to physical activity for people
with intellectual disabilities.(45)
In 2011, M. Barr has found that there is a lack of appropriate programmes to
involve the children with Down syndrome in physical activity in, furthermore
there is a lack of parents’ education to help increase their involvement to facilitate
the physical activity for their children with DS. (17)
Daily activities and social participation at home, in the school and in community
are important for children with DS (figure 3), and the continuity between parents
and the multiple provider is important to enhance health of children with DS.(44)
Not many studies were conducted about this subject. Furthermore, we have little
knowledge about families’ opinions of children with DS towards QS tools. With
the advent of QS-tools and self-monitoring technology, this study is key to get a
better understanding of the views and opinion towards QS tools. Furthermore to
think about how we can help increase families’ participation in controlling their
children’s with DS level of physical activity.
Figure 3- Author's primary idea of the child with DS centred
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1.7 Aim and Objective of the study
QS tools can facilitate families’ engagement in the daily activities of children with
DS and new technology that could produce a powerful motivation to enhance the
level of activities, which can lead therefore to health improvement. (Figure 4)
The aim of this study is to investigate the views, opinions and attitudes of children
with DS and their Parents towards self-monitoring. It is not about evaluating the
self-monitoring tools itself, however it is about the introduction of these QS-tools
to children with DS and their families.
The Objectives of this study:
- Collecting participants’ (Children with DS and their families) impressions,
expectations and views on self-management and how they currently
manage their children health status.
- Introduce the self-monitoring tools to the participants in order to explore
their experiences, the purpose of use and their attitudes towards quantified
self-tools.
- Determine the factors that influence the use of self-monitoring for children
with DS and their families
1.8 Research questions
In order to seek new insights, an exploratory study is conducted to explore the
question of this study, which are as following:
-
2
What are the views, perceptions and attitudes towards using self-monitoring
of the people with DS and their families?
What are the factors that influence the use of self-monitoring for children
with DS and their families?
Method
An exploratory study design was conducted for this study research. (46) A pilot
study is done through using an exploratory qualitative method, since by the time
this study was conducted, not many studies were found to measure the views and
the purpose of use quantified self-tools for children with DS and their families.
The benefits of deploying this type of study can help the author to
- Explore the users’ experience and expectations;
- Find the relationship between variables such as the users and the
tools.
- Determine the challenges, provide in-depth understanding for the
problems and offer solutions.
In healthcare system qualitative and quantitative studies have been classified as
philosophical assumption for evaluation studies.(46) For the purpose of this
research, which follows a qualitative approach, two types of interviews were
conducted to get rich information about individuals’ experiences (Informal
interview and In-depth one to one interview). The reason behind choosing such an
approach was to get an insight of the phenomena presented by the users’ points of
view and explore their experiences and perceptions.(47) By using qualitative
13
approach the author attempts to increase the chance of achieving aim of the
research and find illumination instead of giving judgment.(46)
2.1 Literature Review
Scientific sources, particularly Database (PubMed, Springer Link, Miks, Google
Scholar, Web of science), Academic Journal and Karolinska Institutet library were
used to find scientific information. In very rare cases Wikipedia or Google were
used in order to obtain a snapshot to understand the general idea if something
ambiguous to make it clear, the same thing with social media or YouTube, which
gives a quick explanation and tips. MeSH terms in the MeSH database helped
author to find the synonyms or short phrase, as well as prepare my list of useful
terms. The keywords and key-terms were prepared to find scientific articles and
reliable reviews which containing the following terms:
Down syndrome, self-monitoring, quantified self, self-management, family
centred, family participation and physical activity.
2.2 Preparing of data collection and Participants
Purposefully recruitment method was conducted in this study to find participants
and to ensure the participants were parents of children with DS (47). Small-scale
size of the sample, which consists a small research participants about 14
participants including 7 children with DS (children age was between 10-18 years)
and 7 relatives.(47) (Table 2)
A research announcement was mailed to the Swedish Down syndrome
Association (Appendix A), which published it in their website
http://www.svenskadownforeningen.se.(48) The announcement was translated to
Swedish by author before publishing explaining the main aim of the research
(Appendix B). Ten interested parents sent emails to ask for more details. After
filtered the applicants according to the age (child between 10-17 years old), a total
of 7 parents (5 mothers, 2 fathers) of 7 children with DS (2 females, 5 males)
accepted to be part of the research (Table2). The Participants were consisted of
one of parents of children (with DS aged between 11-17 years) and the children.
All of them live in Stockholm. Interviews were scheduled for places and times
that suit them.
Since it was qualitative approach that means the indicators were collected for this
research consisted of: user impression, time spending, challenges and barriers are
faced, usefulness, current health management, the factors that influence the use of
self-monitoring, future suggestions. All these indicators provided a better
understanding to the users experiences and opened the door for further study. All
preparation and data gathering for this period started from the middle of January
until the middle of March.
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Table 2- Participants' characteristics
Participant
Degree of
kinship
Age
Using
physical
activity
tracker by
parent
P1
Father
38
No
DS1
12
M
No
Swimming, Gymnastic, Dancing
Cycling, Jumping on Trampoline
P2
Mother
43
No
DS2
15
F
No
Riding, Gymnastic, walking
P3
Mother
53
No
DS3
11
M
No
Swimming Gymnastic
Cycling, Walking
P4
Mother
45
Yes
DS4
15
M
No
Gymnastic Floor ball
P5
Mother
53
No
DS5
15
M
No
Skiing, Swimming, Dancing
P6
Mother
46
No
DS6
14
F
No
Gymnastic, Skiing Swimming
P7
Father
53
Yes
DS7
15
M
No
Gymnastic
Walking
2.3
DS
child
Child
Age
DSSex
Use of QS
by Child1
Type of physical activity
Skiing
Swimming,
Data Collection
Fourteen interviews were conducted with 7 parents of children with DS (One
parent per one child); two interviews were carried out for each participant, one
before the trial period and the other after the period trial. All the interviews were
arranged, booked and scheduled in advance to prevent conflict.
Data collection method was divided into three phases (Figure 4). The data
collection method was combined with two types of interviews, the first informal
conversational interview and the second in-depth one-on-one interviews (face-toface) (Appendix 1).
2.3.1 Initial interview At the beginning of each interview, participants were informed of all the project
idea, aims and aspects. Before the interview started all participants gave their
written agreement to participate in the research. Seven informal conversational
interviews were important (about 30 min each participant), in the first interviews
before the period try to help the interviewees to feel comfortable in a warm
environment. As well as gather participants’ views, expectation, and current
situation.
2.3.2 Trial period After the initial interview with each participant, QS-tool was introduced to them
and the interviewer clarified the idea of the tools and how it works to
interviewees. Each child was planning to use the QS-tools during the trial week.
In the middle of the trial period, there was an observation meeting either face to
face or through a phone call to solve any technical problem if it occurred with
1
All the participants (children) didn't use QS at all before the research; the participants were not chosen
deliberately those who weren't using QS.
15
Football
each parent. Sort of gamification (by offering two tickets of cinema for each child
to motivate him to use the device) were used to engage children with DS children
and increase their contributions through offer two cinema tickets to each family.
Data gathering was planned to finish in four weeks since there were 7 participants,
but it took 5 weeks due to sport week was in the middle of the period, which
means two families used the QS tools for two weeks.
2.3.3 Final interview After the trial period, seven in-depth one-on-one interviews helped to explore the
users’ views, perceptions, experiences and perspectives. The interviewer
attempted to end each interview within one hour. Each week, the author
interviewed two participants (one of the parent with his/her child), due to time
constraints.
Some of the interview questions followed the International Physical Activity
Questionnaire (IPAQ) (49), and other questions followed standardized
questionnaire such as Likert type scales. Most of the questions were added for the
research purpose (Appendix C). Questions were asked in exact wording and
sequence of questions to all the participants. In some cases relevant additional
questions raised during the interview which was important to the study. Openended interview was easier to organize and analyse the data and increase the
comparability, also diminish interviewer consequence and bias.(50)
Mobile digital recorder recorded all the interviews after interviewees’ permission.
Later the recorded files saved in author’s computer and sent another backup to the
author’s Google drive account.
Figure 4- Overview of the study design (Appendix E)
2.4 Working tools
The tools were used in the research are described below
2.4.1 Self-­‐monitoring tools used during the trial period The preliminary plan for the researcher was to introduce two different type of
tools to the participants First was the Smart body analyser scale from Withings
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company (Picture 1), and the second was wearable activity trackers (fitness and
sleep) by Shine MISFIT company (Picture 2). Appropriate QS-tools for
monitoring physical activity and weight were identified; since the study focus was
monitoring the level of physical activity.
Since the tools were very expensive, two Shine-Misfit (each 100$)(Appendix F)
and one Withings scale (150$) were bought for the research and was planned to
share it with the participants, one week for each of them. Later the researcher
understood that the participants preferred to use just Shine-Misfit for various
reasons, which will be discussed later in the results and discussion parts.
2.4.1.1 Withings-­‐Smart body analyser scale Withings Company developed smart scale technology(51), which helps to
improve fitness level through measure high accuracy weight, body fat
measurements (for instance BMI), indoor air quality (through measure
temperature and carbon dioxide) and heart rate history. The scale is able to
recognize up to 8 users, each user can have their own profile and use his data
independently because it is paired with user application through a Wi-Fi network
to smart phones, tablet (iOS and Android) and computers (Picture 1). The
application can help the user by coaching, save the history, breakdown all users
data weekly and send tips and reminders. More over the scale, are compatible
with other health applications (for instance Runkeeper, myfitnesspal, IFTTT or
Loss it!)
Picture 1 – Withings Smart body analyser scale.(51)
2.4.1.2 Misfit-­‐Wearable activity trackers Misfit Company developed wireless activity tracker called Shine (Picture 2),
which measures steps, calories burned, distance and sleep quality and duration for
some kind of body activities (for instance walking, running, swimming and
cycling). User can wear it any part of the body (wrist, shoes, waist, pocket, neck)
moreover it is waterproof and can be integrated with other services and
applications.
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Picture 2 – Shine Misfit - wearable activity trackers (Fitness and Sleep).(32)
The user has to wear the smart wristband during the day. There are lights just like
a circle to show the progress of the user activity and how much is needed to reach
the goal. The user is able to change the goal by an increase or decrease of the
points in mobile application to fit user’s portability. The user is able to see the real
time progress because it is connected to the smart phones or web application
(Picture 3).
Picture 3 – Screenshots of Shine Misfit (Goal, Steps, sleep)
2.4.2 MAXQDA MAXQDA was used, which is professional program for qualitative data analysis
organizer.(52) It helped the author to import all the interviews form the data into
group. It helped author to create codes, organize them and form categories. Which
helped the author to find the pattern and the themes. Each theme could have own
colour. Moreover be able to retrieve code segment facilitate write the results.
Equally important was the MAXMaps, which helped author to visualize the
results of the study analysis.(Appendix G)
2.5 Data Analysis
Thematic content analysis (inductive) method was conducted to analyse the data.
Interpretively type of code was used (50) First phase, 14-recorded interviews were
transcribed after each interview. To protect the participants’ confidentiality all the
names were replaced with codes letters (Table 2). The author wrote transcriptions
directly from the recorded files in English. The author started reading the
transcripts (one interview at the time). Each interview was read many times openmindedly and independently trying to analyse one interview at the time and then
find a model to base the analysis on. Excel sheet was established for all
18
interviews’ answers. Later author starts adding notes and some codes. Since
creating codes and organize them manually was complicated for author, led to
using MAXQDA software. It was a part of the learning process; the author recoded and re-organized all the transcripts’ codes. Transcripts’ answers were to be
interpreted to the same open-ended questions to find similarity and relationship or
any communality in the text or emergency that can code. Later categories and
themes were formed after that to look at how the categories related to the research
question.
The author utilized the conventional approach to inductive content analysis for
developing thematic analytic strategy through Pattern recognition finding and
linking the data with some concepts of interests to understand the analysis
direction that increased the reliability of the research.(47) (50) This method of
analysis was utilized to proof that these data weren’t the predetermined
impression of the author.(46) The author tried to analyse the data and transfer
participants’ point of view and answer the research’s questions, which is the aim
of the qualitative research.(47) For more trustworthiness, authentic quotes were
used from the original data. The data were broken down into categories and later
the categories were divided into themes. Identified the main themes and colour
them with different colour, later the author elaborated cognitive map with all
themes to assist the author to find the final theme (Figure 5)
Figure 5- Data analysis phases
2.6 Ethical Consideration
In this study, the data are collected directly from participants, who used the QS
tools. Thus before research conducted or any data gathered, It was explained to
the participants, it is voluntary and provide sufficient information about the
19
subject of the research and what are we going to do. As well as we will sign a
contract that this study is going to follow Karolinska Institute ethical rules and all
the data are going to be used just for this study (Appendix D). Before each
interview, many issues were discussed (four instance, Involvement of minors
(children) and parent/guardian consent, Issues with location tracking, Storage and
transmission of data, Details of anonymization or deidentification process), all the
participants were told that all the records are about be used just for the study and
will not be used for any other purpose.
Also for more protection to the participants’ data and information and respecting
their privacy and sensitivities, all personal information coded, which guaranteed
the anonymity of the participants.(53)
3
Result
Interviews with families of children with DS have revealed the following views
and opinion towards using QS-tools. All the information provided in the results is
from the families’ perspective and generated regarding to the participants’
answerers.
In this research, the two study questions
• First question: What are the views and attitudes towards using QS of
people with DS and their families?
• Second question: What are the factors that influence the use of QS for
people with DS and their families?
The author determined three main themes which contains sub-themes and
categories in codes map (Appendix G)
Theme1: Children’s with Down syndrome attributes
Theme2: Families' role in their child's health management
Theme3: Parents' perception of using QS tool intervention
3.1 Theme 1: Children’s with Down syndrome attributes
Accourding to parents’ observation and experiences this theme divided into three
sub-themes (Figure 6), health problem activity and health management and
Child’s behaviour and ability
20
Figure 6- Codes Map - Theme 1
3.1.1 Health problem The parents mentioned that their children with DS faced many health problems
such us Obesity, Asthma, Thyroid and sleeping problem. Four out of the seven
has a thyroid problem, which affects other health issue for instance gaining
weight.
“ He has thyroid problem and he is suffering from obesity now” (P1)
“She has thyroid problem and take pills of Lavaxin” (P6)
“He had sleeping problem since he born he wakes up many time during the night,
when he returns to sleep sometime hit his head.” (P4)
3.1.2 Activity and Health management Most of the children with DS have more than one activity (Table 1). The activities
were different from child to other. These are two ways to control child’s health
and activity either through health care provider or through parents. Most of the
participants revealed that the doctor’s check-up done once per year for their
children, while parents keep controlling children for the rest of the year.
“First of all general control with his doctor once a year…or by keeping an eye on
him and if some thing wrong I called his doctor.” (P3)
“He visit the doctor once a year” (P5)
3.1.3 Child’s behaviour and ability According to parents’ experiences, children behaviours and ability were ranging
between positives and negative behaviour. On the positive side, most of children
are interested to dance and music, as well as interested towards new technologies
(especially the smart devices and touch screens was the main impressions of
21
children with DS). By the same token the children with DS has social activity
through school as well as they get motivated very well by other peers.
“My son and most of the DS children are very interested in music” (P1)
“My child is motivated when he sees another children move, play and workout”
(P3)
“My child likes technology very much especially the smart phones and plays
games (play station) especially the dance games… 99 of his social activity is
through the school,” (P7)
On the negative side, most of the parents point to children laziness, short-term
perspective, long-term of learning process and special daily rhythm that child with
DS should follow.
“My child has a special daily routine and daily rhythm” (P1)
“My child is lazy” (P4)
“My child has a short-term perspective, his perspective quite narrow…in general
for whole the Down syndrome the long term repetition is very important for them,
then it will work and affect their rhythm.” (P7)
3.2 Theme 2: Families' role in their child's health management
According to participants’ answers, there were three sub-themes for the family’s
role and how they manage their children’ health. (Figure 7)
Figure 7- Codes map - Theme 2
3.2.1 Responsibility Parents assert that they are the most responsible people for managing their
children with DS’s health. Three types of responsibilities were mentioned by
parents, first of them was responsibility of monitoring child’s physical activity.
The second responsibility was controlling child’s weight and food intake. The last
22
responsibility was motivating the child through encouraging or stimulating
children to get the best result.
“I feel I am the responsible of my child and we are as a family the most people
who understand what he want and how he feel, so we can help him better than
others.” (P1)
“He can’t manage his health; I am the responsible person to control his health,
weight and activity.” (P3)
“For me I know if she is 14 years old then she should walk 3 kilometres so I am
trying with her to reach that number… she is following her curve and we are
trying to keep watching her taken food, sometime she likes to eat too much so we
stop her if we need” (P6)
3.2.2 Challenges There were two types of challenges. In the first place, the parents in many ways
expressed their children’ activities tracking ways through observation: keep
tracking in head, estimation. With these ways they faced the same problem, which
they don’t know exactly the amount of the physical activity of their children
especially when the children are remote.
“I keep everything in my head now, but it is hard to estimate the activity
especially when he is not with us” (P1)
“We are not with her in the school and we do not have any idea about her
activities when we are not with her” (P2)
“It is hard to know if the activities are good enough” (P4)
“Just keep watching him if he feel well and keep the information in my head” (P5)
In the second place, the need for self-awareness was an issue, in the hope that the
Parent’s awareness could influence the child’s awareness.
“Self awareness from the parents, that they see they didn’t do enough for the child
… I hope that most of the parents for children with DS are aware that they need to
control their child’s health” (P7)
3.2.3 Communication Parents’ communications with school or other services (Habilitation centre)
consider one of the parent indirect controls, in additional to the direct observation
(for instance the food intake, medicine intake, general health observation, observe
physical activity, Wight Control and Sleep Control).
“Beside my observation, the teacher tell me about her activity” (P2)
“The school tells us his activity to the rest of the day with them” (P7)
23
“We contacted Habilitation centre to tell them about his sleeping problem and we
got a chain Blankets from them which weighs 6 kilos, and he sleeps better now”
(P4)
3.3 Theme 3: Parents' perception of using QS tools intervention
There were significant differences in the participants’ personal views toward the
new technology. Differences of opinion were ranging between supporters and
opponents. Some participants felt that the technology was an obstacle and they
need someone to help them to overcome it. Others were amused in pursuing the
rapid developments. Other just used it because they should adapt their self to use
it at work. The author divided the participants’ views and experiences into three
sub-themes: enabling, hindering, in additional the participants’ future suggestions.
(Figure 8)
Figure 8- Codes map - Theme 3
3.3.1 Parents' positive experience: Enabling The parents had two types of positive experiences one was from child’s aspect
and the other from technology aspect.
Child's with DS aspect Ø Role modelling
24
The parents play a role model to stimulate their children with DS to be more
active.
“I am as a father reminds me to be a good example for my son and engage to
be more workout and daily activities … it helps me to be a good example to
my son” (P1)
“I decide to use it couple of days to show her what I did.to see my activity”
(P6)
Ø Assist parents' engagement in control child's health and activity
“QS-tool increased my awareness to have more control of my child health and
activity…I take more response to control my son health management; I think I
have more control on his daily activity…I became more aware how much
calories I burn and how many steps I did” (P1)
“This gave me a good answer that my child living a good life.” (P2)
“These tools helped me to understand the daily activities needed to be done by
my child” (P3)
“This QS-tool helps to show me how much he did during the day” (P4)
“Valuable tool due to control the daily rhythm of my child … It was
interesting to see the daily activities of my child especially when I am not with
him like in the school ... I am impressed to discover the activities of my child
in school.” (P5)
Ø Motivation
“These devices motivated me and raised my awareness about the needs for
more physical activities more that I thought before… I am encouraging him to
do more physically active” (P1)
“She was really happy when she reached the goal. I think that if she had the
bracelet for a longer time, this could change her attitude and habits.” (P2)
“The visual results motivated my child to move more in order to reach the
goals.” (P3)
“QS-tool affects me to change my thought to change the plan of his activity,
now we can see that his activity is good these two days in the week, when he
has inn bandy and gymnastic and may be every day should look like that…It
motivated my child, he called me from the school when they had taken them
for a walk and he looked at the device and find that he reach the goals” (P4)
“He felt happy when the curve was completed” (P5)
Ø Finding pattern
One of the parent mention that he find his child’s sleeping pattern which helps
him a lot since his child had sleeping problem.
“I discover that his sleeping pattern is good” (P7)
25
Technology aspect Ø QS tool acceptance by child
“My child accepts QS-tool and she understood that we are collecting some
data for your thesis.” (P2)
“My child also familiar with this device because I am already using it… the
circle of the activity was fun for him” (P4)
“My son impression was easy too understand he accept the tools and wear it
without problem, he sees the figure and the measurement during the day
time.” (P7)
Ø Current QS good properties
“I don’t need to synchronize or do any thing when you start work out but you
just need to workout and it will activate automatically” (P1)
“Easy to use because it is easy to wear compared to the step-counter in the
mobile because I forget often to take my mobile when I go on a walk.” (P2)
“My child was most interested in step counting rather than the measurement
of burned calories.” (P5)
“I prefer to see the calories for me, but for my daughter’s view it will be better
with step because it is easer to understand,” (P6)
3.3.2 Parents' negative experience: hindering The parents had two types of negative experiences one was from child’s aspect
and the other from technology aspect
Parents concern about child ability behaviour Ø Excessive technology
“I think it is too many applications to use… QS-tool is one more thing you
should use daily” (P2)
Ø Child can't understand QS tools
“My child couldn’t understand the measurement. I don’t think it was so
important to him to understand the points… He doesn’t have the ability to
understand the technology. It is just toy tool.” (P7)
“If she understands self-management so it will be very useful” (P2)
Stress child
“I am afraid feeling guilty when not reaching goal…it could make my child
stressed instead of being motivated” (P2)
Ø Rejecting the tool
There were varied reactions by children towards using the QS-tool. Five out of
the seven participants’ children with DS had used the QS-Tools seamlessly,
and two of them were strongly rejected, while most of the parents accepted it.
26
“My child rejects it, he wasn’t interest to wear it, I think he feel uncomfortable
but that his reaction with all new things” (P1)
Ø Future concern
The parents with healthy children mentioned that there is no need to use QStools nowadays but they will need it in the future when the problem occurs.
“My child doesn’t need it right now, but it may be more valuable in the
future” (P5)
“I would like to use it more for me, but not for her, may be because she
doesn’t suffer from anything now.” (P6)
“I will recommend if there is a social pattern in the family or if there is not
enough physical activity.”(P7)
Parent concern about technology aspect Ø Time concern
“It is one more thing you should use daily and I didn’t have the time to
explore it” (P2)
“I would like I have time to learn but there is a lot of new things come up, I
don’t have time to know all” (P5)
Ø Design Concern & weaknesses
The top of the design’s weaknesses from participants’ perspectives were
about:
“A little bit difficult? It was little difficult because I couldn’t tap the bracelet
or I tapped it maybe in a wrong way. But I could synchronize it easily” (P2)
“I faced problem to download Misfit Application on my mobile, because I
have IPhone 4” (P3)
“I am using other self-monitoring device (Nike fuel) and I think it is easier…
My child wanted to take off the bracelet when he went to sleep because it feels
uncomfortable during sleep” (P4)
“Sometimes it failed when I sync... It takes long time to show me the data in
the application” (P6)
“The tools couldn’t measure the cross country skiing activity” (P7)
“It would be better if the bracelet was more secure in order not to fall down
or my child takes it away easily.” (P3)
Ø Economic concern
Most of the participants had an economic concern. (Appendix F)
“It is expensive, we are thinking to buy it to all our kids but then the price is
an issue” (P4)
“It is expensive :If we take the cost I don’t think I should buy it today for my
child because I don’t think she has any problem with her weight or her daily
activities. I think it is too expensive thing to buy just for fun because I don’t
think she really needs it.” (P2)
27
3.3.3 Parents' Future suggestions in overcoming challenging and barriers Parents tried to think out of the box and suggested improvements, which present
their ideas and point of view to suit the health’s situation of children with DS.
These suggestions fall within the three frames:
Ø Pedagogue approach
“If there was a group of similar children having the same technology that will
be a very good motivation for him, so they go out and work together, I think
this will motivate the whole group. It could be good motivation for the
physical activity and sleep monitoring when he lives in a group home,
especially when there is a group of Down syndrome children using the same
technology… This will stimulate the whole group and it will be very good if
there is a supervisor or a leader for this group… it could help them to not get
lazy” (P7)
“Teachers should be involved and be aware to tell them about there
measurement so they need to walk, and may be in long term that could
encourage them.” (P7)
Ø Child's autonomous helped by QS-technology
“My child has a special daily routine and daily rhythm and if I succeed to
introduce these new devices in to his daily routine, if we could make it a part
of his daily rhythm it will increase his physical activity…It will help him in the
future very much when he will be independent person, and we have a little
control of his activity.” (P1)
“My son has a daily rhythm and I think this tools will affect his rhythm in the
future” (P4)
“May be in long term that could encourage them and after repeat and repeat
information could affect their awareness and later could improve his daily
rhythm” (P7)
Ø Support children with DS and their families’ engagement.
The families prefer to see additional properties in the QS-tools in the future,
which could help their children’ acceptance and enhance their participation of
monitoring their children with DS. The parents presented four suggestions.
First suggestion was about adding GPS monitor tool.
“It will be very nice to share the data through the distance with us so we can
keep watching her... It will be very effective to help her if this tool could help
us to see her activities through the distance.” (P6)
“It will be good to have GPS on it, so the parent can follow it from the
smartphone… So we can use it as a checking device, we speak a lot as a
family about tracking devise because when he was small he runaway)” (P7)
The second suggestion was about sharing child’s data from QS-tool with
health care provider.
28
“I would like to share these data with his doctor…especially the night activity
because we have feeling that his sleep isn’t good, and if there is possibility to
show the doctor his night activity that will be great.” (P4)
“I think sharing data with doctor will be very good idea and much more of
control.” (P6)
The last suggestion was about adding more details to the device according to
enhance the child’s acceptance and engagement (for instance Music, lights,
more measurements, protection, special design, screen and buttons).
“It will be very beneficial to have some music or encourage words to the child
when he reaches the goals. Or he can choose to play his favourite song during
his workout” (P1)
“Adding music will be a good idea. Just like the app Runkeeper, when you
start work out so the app will tell you (you passed one kilometre). I think it
should have some sound to encourage the user. It will be good to see the
results directly on the screen in numbers of steps even before synchronizing
with the mobile app. The result should be visualized easier for Down
syndrome children.” (P2)
“If the music starts when he moves and stops when my child stops moving, this
will motivate him to move more because my child loves music” (P3)
“Music integration and nice funny design, which stimulate the child or maybe
a picture of a funny face or “thumb up” when the child reaches his goals. My
child is most interested in music and films.” (P5)
“My suggestions are showing the result in interesting and understandable and
usable way, play some melody because she likes music, with ability to turn it
off during the school time to not disturb the others…In the future I would like
to buy self monitoring tools to control thyroid problem if they invent
something like that or it is really exist.” (P6)
“The interface shouldn’t connected to smartphone because they need to see
the data directly on the tools, and the bracelet should be in many colour and
the child could choose his own favourite colour, and the button should really
good, big and different colour on the buttons, and big display and off course
crash-proof, water-proof, everything proof and it shouldn’t loose it and wide
not thin, also It must be light. Another suggestion is the Bluetooth technology
so they can connect it to the headphones so they can play music” (P7).
29
4
Discussion
In this part of this study, the author will discuss the findings of the research, the
strength and weakness of the chosen methodology and the further studies. The
author introduced two types of QS-tools to the families who have children with
DS, the first tool was Shine Misfit - wearable activity trackers (fitness and sleep),
and the second tool was Withings- Smart body analyser Scale. The aim behind
introducing these tools were to explore the views and attitudes towards using QStools for children with DS and their families, and determined the factors that
influence the use of QS for children with DS and their families. Participation’s
perspectives towards technological QS tools are about being discussed to find if
the results of the research were answered the research questions and reach the
goals of this study.
4.1 Main Findings
The physical activity level for children with DS is the main focus of this study.
The study showed that QS-tools intervention could affect both the children’s with
Down syndrome and their families’ role. In a result all the children attributes were
gathered from the parents’ observations, since the children were not able to
express them self-well. For this reason theme1 was considered part of theme2,
since it is from parent’s perspectives and experiences (Figure 9).
Figure 9- Main finding - Themes affected
4.1.1 Child’s attributes effects on the level of physical activity Child attributes considered internal factors, which affects the level of physical
activity of children with DS. There are common denominators in children’s with
DS attributes according to the parents’ remarks. Some of the attributes were
30
facilitator for instance they are fascinated to music and dance, motivation by other
peers and their ability of using smart devices. The research showed that the
parents and siblings have a beneficial influence on the physical activity
participation of children.(16) Or barriers for instance the delay in physical
activities, long-term learning process, and short terms of perspective. In like
manner the parent mention the children suffer in this age (10-17 years old) from
three types of health problem issue, sleeping, obesity and thyroid problem. Both
facilitators and barriers of attributes were referred to it in many researches (3)(5).
M. Barr divided child’s attributes associated conditions into facilitators and
barriers which affect the level of physical activity for child with DS(17). Rubin SS
found a higher prevalence of overweight in individuals with DS group compared
to the general population(4). Carter M. found that school aged children with DS
suffered from various types sleep problems(8).
4.1.2 Family’s role effects on the level physical activity for child with DS Family’s role considered one of the external factors that affect the level of
physical activity for children with DS. There are numerous external factors but the
author focused in this study on the families' role, which were categorized into
three themes according to the parents’ sayings, responsibility and challenges and
communication.
Responsibility
Most of the parents partake the same responsibilities, which were distributed
between encourage and motivate the children with DS to increase his level of
activity, monitor children’s activity and food intake, observe child weight.
This theme is harmonious with Biddle’s suggestions that there is a correlation
between the levels of children’s with DS physical activities and the parent’s
encouragement and active involvement. (13)
Challenges
There were two types of challenges, according to enhance the level of physical
activity. The first was the needs for more participation, the parents couldn’t
estimate the amount of the activity especially when the child was in far distance
for instance in school, other care house. For this reason most of the parent
mention that they keep tracking their children’s with DS activity in their head.
The Second challenge was the parent’s needs for more health awareness and
education, which will help them to be more active and play a useful role model.
This theme is consistent with M. Barr, who highlighted in his study the
relationship between supporting and educating parents and the child’s with DS
participation in physical activity.(17) Other study found that there is a requirement
to provide appropriate family-centred services because the family and their child
with DS require formal and informal supports.(18)
Communication
One of the important roles of the parent is the communication with other services
and social interaction, for instance the school and the healthcare provider.
31
Depending on parents’ saying, the school provided parents with all the updated
information about their child with DS. By the same token the parents should be in
contact with all types of healthcare providers for instance physician, nurses,
Habilitation centre personnel and all type of therapies. The roles of the parent
include the transfer and exchange Parents’ observation and healthcare providers’
updated knowledge. This theme is similar to Menear study, who asserted on the
healthcare provider role to assist the parent’s involvement through provide
them with an early intervention program, which increases the level of physical
activity in children with DS. (16) In like manner M. Barr mentioned the role of
the social interaction to enhance the level of physical activity in children with
DS.(17)
4.1.3 Parents' perception of using QS tool intervention During this study, the author introduced two types of QS tools (as mention before)
to the parents. Later the author collected the parents' views towards the child’s use
for those tools during the trial period. Since there is a lack of studies about this
subject, the author wants to know if the usage of QS-tools could affect the family
centred, which considered one of the most important external factor that affects
the level of physical activity in children with DS. Parents’ perception was
analysed, the author found that the use of QS- tools has two sides of the main
coins, facilitator and barriers.
Facilitator factors
The author found five categories of facilitating factors from parents’ point of view
1. Role modelling. The QS tools remind parents to be a good example and
stimulate their child with DS to increase his participation in physical
activity by follow his parent.
2. The parents found QS tools enhance the Active self-care, especially in the
future when the children with DS will be independent.
3. The QS-tools assist the parents' engagement in monitoring child's health
and activities and give them an overview of child’s up to date activities, in
a word the QS-tool enhance the family-centred.
4. Motivation, some of the parent found that QS-tools motivated their
children and encouraged them to increase their level of physical activity,
reached the goals and change some of their habits.
5. Finding pattern, the QS-tools helped some of the parent to find the
sleeping pattern for their children with DS.
“When children learn an appreciation for physical activity and when they
learn how to participate in physical activities, they tend to be more physically
active”
Menear (16)
There are strong correlations between those five factors not only with the external
factors, which is the families' role in their child’s with DS health management
32
(responsibility, challenges, communication), but also with the internal factor
(facilitator and barrier children’s attributes).
Barriers factors
Excessive technology, future concern, stress and unintelligible for children with
DS were barriers factors from a parents point of view, which author categorized
them as a parent's concern about child’s ability behaviour. Parents saw that there
are many potential but they really need to use it. They think the current tools need
to be improved upon fitting their children's needs. The contemporary QS-tools are
suitable for the normal peers but not for their children with DS, due to they have
cognitive challenges and special needs. By the same token, time, design and
economic concerns were barrier factors, which author categorized them as a
parent's concern about the technology aspects.
Figure 10- Parents' perceptions toward the usage of QS-tool
Parent’s future suggestions
Technology VS human interaction and the combination of the tools, considered
the main finding for this theme. In the light of two ways to overcome barriers,
both by adding more technology, and sort of additional things for instance a
couch. According to parent’s suggestions, the author identified four types of
future suggestions (Figure11). First, Introduced QS-tools to the child’s with DS
daily rhythm that could affect children's with DS future independency, which
leads to active self-care. Second, enhance the pedagogical approach by
introducing these tools to schools or other training groups, which could motivate
children through competence with other peers and involve the teacher to direct the
group. Third, Sharing child’s with DS data from QS-tools with the health care
provider to enhance family communication and family’s awareness. Fourth add
33
additional properties in design options to support children with DS and their
families’ involvement for instance GPS to help parent monitor their children from
smart devices, crash proof, water proof for more protection, add more song and
music, visual data on the device itself and the big button with colour and lights to
improve child’s understanding and acceptance for the QS tools.
Figure 11- The parents' future suggestions
As a result, all the children attributes were gathered from the parents’
observations because the children were not able to express them self-well, for this
reason theme 1 is part of the theme2 because it is from parent’s perspectives and
experiences. The study’s findings are compatible with the behaviour change
wheel (Figure12) (54). Michie et al. found connections between behaviour
components and intervention functions. These connections are associated with the
main findings of our study. If the technology designers pay attention to the
linkage between QS interventions supportive factors and the children’s attributes
and families challenges and responsibilities, then our study could achieve two
areas: Family centred and change children behaviours. Which will enhance the
quality of the children with DS.
34
VS
Figure 12- Author's main finding VS behaviour change wheel (54)
4.2
Discussion of the method
Study strongest points The strong qualitative content analysis, which can be transferable, it is not
suppose to be generalizable; it could be transferable to other contexts.(50)
All interviewees were asked the same question in the same order except the first
interview, which was reformed by author and added another type of questions due
to be more useful for content of research, this was part of the learning process. In
this case, some weaknesses were reduced in each type of interviews. In additional,
35
informal conversational interview and in-depth one-on-one interviews, those two
types of collection data were offered flexibility.
It was worthwhile to use a focus group for data collection because it is costeffective and time consuming.(50) Also could increase the data quality because
the participants could share their views and experiences.(50) Confidentiality was
the reason behind not use it, instead of focus group the author conducted one-to
one interviews, due to the sensitive information that planning to collect, as well as
the child with Down syndrome could feel nervous or not comfortable to talk in
front of strangers.
To add more accuracy and trustworthiness to the study, all the transcripts were
sent by email to the participants to check and inform that all the information was
transferred to the transcript and the author asked them to add any missing
information or any additional comment they had forgotten to add.
One of the strongest points in this study was to introduce new technology to the
families and raise their awareness. More than one parents expressed their feelings
towards the research’s idea and aim:
“I would like to thank you to introduce these devices to me, it increase my awareness to
have more control of my child health and activity” (P1)
“I would like to say that your work is great and you are increasing the awareness among
the families with Down syndrome children. For me I didn’t know before that there are
such tools for children that can control their weight and activity” (P3)
Study limitations Time limit was the first limitation of this study. Most of the participants weren’t
interested to use the smart scale, since one week trial period would not show them
any difference in their children’s weight. On the other hand some parents wished if
their children with DS could use the activity tracker longer time.
The second limitation is the participants of the study were only parents, due to focus
on the family participation. For next study, the author prefers to involve the school
personnel and healthcare providers. Multiple sources of participants are better for
qualitative researches.(50)
The third limitation of this methodology is capturing only one point in a time and
due to the rapid developing of technology, after a while it could present a different
picture and outcome.(55) Quantitative approach wasn’t conducted, due to not
provide the social aspects and user perspective toward using the latest
technologies, which will not answer the question of research.
4.3 Further Study
Conducting research on same group together in the school in the same period using
the same tools and supervised by teacher to see if we get better results and measure
the effect of the peers on the level of physical activity of the children with DS, who
uses QS-tools.
Another alternative for further study is to do a comparative study between two types
of QS activity tracker tools, and determine their effect on the children’s with DS
physical activity level.
36
The use of QS tools in other categories of children/adults with special needs or
monitoring is a good potential for further studies. Further more, the extended use of
these QS tools in children with DS can reveal the advantages/disadvantages of these
tools in controlling the body activity.
During the study, it has been noted that most of the participants have problems in the
function of thyroid gland. Parents appreciate the development of applications/tools to
investigate/monitor the activity of the thyroid gland. Further development would be
appreciated to monitor these parameters. Yet, as the blood sample analysis being the
corner stone in monitoring the function of the thyroid gland, the use of QS tools is
limited in these uses nowadays.
5
Conclusion The study aim had to explore the views towards the quantified self-tools of children
with DS and their families. In the conclusion of this study, we found that the
quantified self-technology is a double-edged sword. Whenever we know how to
invest this usage. Through the study shows that children with DS share the same
attributes, which either facilitates or obstructs the level of the physical activity for
children with DS. On the other side of the study, the results highlighted the role of
parents, who considered experts in the art of taking care of their child’s with DS and
understands their needs and responsibilities. The role of parents is extremely
important to deliver the voice of the child in the community and build bridges of
communication. Supporting this role, to enhance their participation has a significant
effect on the level of child’s physical activity. Which were the reasons behind
introduce the QS-tools to the children with DS and their families.
The data showed that the use of QS- tools could hinder or enhance the level of
physical activity for children with DS and the families’ participation. The varying
points of view between supporters and opponents due to factors that contributed by
the QS. Some of the parents found that QS-tools support some aspects for instance
Finding pattern, Active Self care, Motivation & encouragement, Role model and
enhance Family-centred. While others found that QS-tools hinder another type of
aspects for instance Economy concern, Design Concern, Excessive technology,
Unintelligible by child and Future concern. Not to mention, the parents found that this
technology is suitable for normal peers, while their special needs children require
special options or programmed. For this reason the parents suggested future
improvements, for instance introduced tools to child’s daily rhythm, pedagogue
approach, sharing Data and additional properties (GPS, Protections, Visual data, Big
buttons, lights and colour).
37
6
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Appendix
Appendix A: Research announcement at the Swedish Down Syndrome
compound
43
Appendix B: Example of the invitation letter
Deltagare för forskning om Downs syndrom sökes
Hej!
Mitt namn är Hiba Maala. Jag är från Irak och har bott i Sverige i 8 år. Jag är mastersstudent i
hälsoinformatik på Karolinska Institutet och är mamma till ett barn med Downs syndrom. Mitt
personliga mål när jag började den här utbildningen är att förbättra livskvaliteten för barn med
Down syndrom. Jag håller på att göra min forskning som en del av min examen.
Min uppsats idé handlar om hur familjer kan få stöd att hantera viktkontroll för sina barn med
Downs syndrom med hjälp av ny teknik, till exempel aktivitetsarmband och vågar kopplade till
smarta mobiltelefoner. Med utvecklingen av teknologi och innovation av moderna datorer och
smarttelefoner, många enheter, tekniker och applikationer som kan samla in personers hälsodata
som vikt och antal timmars sömn och beräkning av kroppsrörelser per dag och beräkna antalet
brända kalorier samt puls, blodtryck och en hel del annan användbar information. Alla dessa
uppgifter kan kopplas till smarttelefoner på ett trådlöst sätt.
Dessa verktyg kallas kvantitativa mätverktyg. Själv-kvantifierade verktyg (Quantified Self Tools
QS) är automatiska enheter som kan användas kring handleden eller andra former som bärs av
användaren och kan samla hälsodata, analys och presentation för användaren på ett praktiskt och
tydligt sätt för att hålla koll på sin hälsa och dagliga verksamhet.
Med de här tillgängliga teknikerna finns det stora möjligheter att ta reda på och kontrollera
hälsoproblem för personer med Downs syndrom. Anhöriga till barn med Downs syndrom kan ha
mer syn över sina barns hälsostatus med hjälp av sådana verktyg. På detta sätt kommer familjer att
bli mer medvetna om sina barns hälsostatus och kommer att bidra till deras deltagande i
beslutsfattandet och uppmuntra sina barn att följa ordentlig hälsobeteende och höja taket av sina
förväntningar som leder till att förbättra deras hälsotillstånd.
Total anonymitet garanteras inom ramen för denna forskning och människorna i denna
forskargrupp. Din personliga information kommer inte att delas. Svar på enkäten kommer endast
att användas för insamling och analys av data och kommer inte att distribueras till tredje part av
något slag. 5-10 deltagare behövs i denna forskning.
Jag skulle uppskatta er hjälp att frivilligt delta i denna forskning för våra barns skull. Genom att
delta, har du chansen att påverka utvecklingen av livskvaliteten för barn med Downs syndrom i
Sverige med möjlighet till global expansion. Forskningen kommer att följa de etiska regler som
Karolinska Institutet följer.
Jag hoppas du vill samarbeta med mig! Ett hjärtligt stort tack att du bryr dig om våra barn!
Väntar på ert vänliga svar
Main researcher: Hiba Maala
Telephone: 0762673293
E-post: [email protected]
Name of organization: Karolinska Institutet
Om du har några frågor, kontakta gärna min handledare:
Supervisor: Sara Riggare
Telefon:070-3565104
E-Post: [email protected]
Organisation name: Karolinska Institutet
44
Appendix C: Example of the interview questions
Part 1: initial interview before the trial period
A. General Information
1.Can you introduce your self (age, work experience)?
□ Male □ Female -What year were you born?
2.Are you born in Sweden? □ Yes □ No, If the answer is No, which country?
3.Your relationship to the DS participant and tell us about him?
□ Male □ Female -What year were he/she born?_______ Where? _______
B. General Information about the knowledge & experience
1. How do you feel about using technology? Or -Would you like to use
technology?
2. If you will evaluate your knowledge of the new technology on a range 1 to 10
(week to excellent)
3. How many languages does he speak? Can sign language?
4. Did you or your child heard about Self-monitoring before?
□ No □ Yes, If yes How you know about the self-monitoring?
A. Internet & search engines (Google, Yahoo, etc.)
B. Friends & colleagues
C. Work D. School
E. Habilitation centre
F. Healthcare centre
G. TV H. Advertisements
I. Other
5. Did you or your Child use Self-monitoring before?
□ No □ Yes, if answer yes the next question
I. What type of Self-monitoring tools you use for your Child?
II. How often did your child use self-monitoring tools?
6. What do you think your child with Down syndrome level of computer skills are
on a range of 1 - 10?
7. How much is his IQ?
8. How do you manage and control her/his health now?
9. What type of physical activity does he/she do?
10. How often does he/she train per week?
11. How much time does he/she take every train?
A.30 min
B.1-2 hours
C. More than 2 hours
12. How do you – keep track, evaluate measure her/his activity? Do you prefer to
keep tracking your child’s health in your head or paper sheet or electronic sheet or
auto-save applications and Why? Or don’t know
13. Can you keep him/her with the normal weight?
14. Do you have another information or experience you want to share it with us?
15. What kind of health apps do you currently have on your phone? (Diet, food,
calorie counter, Weight …etc.)
45
16. In general, how would do you rate your child health? — excellent, good, only
fair, or poor? Would you like to participate in the follow up interview or email
contacts, where we can learn more insight from you?
Email address:
Phone Number:
Skype ID:
Part 2: Final interview after the trial period
1.What were your impression and your child impression of a self-monitoring tool?
Why?
A. Very Easy?
B. Easy
C.A little bit difficult?
D. Too difficult?
E. I don’t know
F. Other
2.How often do you use Self-monitoring tools this week?
A. At least 1 time or
B. Several times per week
C. Never
D. Other
3.What do you feel about download the data? What was the difficulty if found?
4.What measurements do you feel it is important for your child? And what are
most disturbing features?
5.What was the effect of visualize measurement on you and your child? Do you
think it helped you to see your child’s activities in a new way (More
understandable way)?
6. Do you want to share these data from tools with your doctor? Why?
7. Would you like to use self-monitoring tools again or in the future? Why?
A. Motivate my child and me
B. Easy to use
C. Better control for surrounding environment
D. Monitoring my child activities
E. Raise my awareness
F. To be a good example for my child
G. Anything else?
8. If you would like to buy this tool for your child for what reason? What do you
think the most important benefit of Self-monitoring tools? Why
A. Improve self-management
B. Improve Family centred care
C. Improve health/disease prevention
D. Improve quality of life
E. Other _______________
F. No benefits
9. When was the greatest effect during this week?
10.What were the challenges you faced during this week?
46
11.Would you recommend others to use self-monitoring tools? Why?
A. Yes, I’ve recommended
B. I will recommend
C. I don’t recommend
12. Please grade the self-monitoring tools usefulness from 1 to 6?
1.Strongly Disagree
2. Disagree
3. Neutral
4. Agree
5. Strongly Agree
6. Don’t Know
13. In your opinion, what was your child attitude toward these tools? Or how do
you think self-monitoring tools motivate your child?
14. In your opinion what could be the barriers leads you to not use self-monitoring
tools for your child? Why? (You can choose more than one answer)
A. Lack of Motivation to use
B. It is expensive
C. Poor design and function
D. Lack of feedback
E. Poor protection of user privacy and data security
F. It does not fit my child situation
G. Lack of integration with other application
H. Waste my time
I. Other
15. If we suppose that you invited as a parent to be part of the conversation
meeting to develop these tools what will you suggest?
16. What was your feeling towards self-monitoring tools? (Positive or negative)
A. Self-explanatory?
B. Informative?
C. Challenging?
17.After you used these tools, do you have any plan to change your child physical
activity?
18. In your opinion, what do you say you get out of this experience?
19. From your perspective, how does this type of tool could affect your child daily
rhythm now and in the future?
20.Do you think of sharing these health tracking records or notes with anyone,
either online or offline? Why? ° Yes ° No ° don’t know
Is there anything you would like to add?
47
Appendix D: The contract form with the participants
Research Title:
Exploring views and attitudes towards using quantified self-tools of children with
Down syndrome and their families in Sweden.
Research Aim:
The aim of this study is about introduce these tools to children with DS and their family
to collect their points of views, expectations, and attitudes towards these types of tools. It
is not about evaluate the self-monitoring tools by users with DS.
Procedure:
We are asking you to help us to learn more about the children’s with DS attitudes and the
relatives’ point of view toward using self-monitoring tools.
You will be asked to use one of the suggested self-monitoring tools in the study for your
child for one week. You and your child will be interviewed twice, first interview before
the trial period, and the second interview after the trial period. The purpose of the
interviews is to share your expectation and opinion toward this trial.
Confidentiality:
Total anonymity is guaranteed beyond the scope of this research; None of your personal
information will be shared. Answers to the questionnaire & Audio recordings will only be
used for the collection and analysis of data and will not be distributed to third parties of
any kind. All personal information will be encoded, which will guarantee the anonymity
of the participants.
The ethical rules of the Karolinska Institute will be followed. Nothing will be posted, as it
is only a thesis for academic purposes.
Voluntary participation:
Your participation in this research is entirely voluntary
Risk:
We don't anticipate any risks during these interviews. There are no risks to use the selfmonitoring tools.
Duration:
We ask you to participate in two interviews, one hour for each interview.
First interview before use the self-monitoring tools, and the second after one week of
using the self-monitoring tools.
Estimated interview time: 60 min
Location and Time:
Interviewer: Hiba Maala
Participant name and signature:
I, the participant, have been invited to participate in the two interviews sessions and one
week using self-monitoring tools for my child. I have read the foregoing information, or it
has been read to me. I have had the opportunity to ask questions. I consent voluntarily to
be a participation in this study.
Participant 1(Father/Mother):
Participant 2 (Son/Daughter):
Signature:
48
Appendix E: Interview Timeline
Appendix F: Misfit receipt
Appendix G: The Codes map and themes
49
50