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Children’s participation in everyday activities:
Differences and similarities between children with
intellectual disabilities in China and South Africa
By Sharon Eichler
Two-year Master Thesis 15 credits Supervisors: Anna Karin Andersson
Interventions in Childhood Karina Huus
Examiner: Will Farr
Spring Semester 2020
Master Thesis Sharon Eichler
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SCHOOL OF EDUCATION
AND COMMUNICATION (HLK)
Jönköping University
Master Thesis 15 credits
Interventions in Childhood
Spring Semester 2020
ABSTRACT
Author: Sharon Eichler
Children’s participation in everyday activities: Differences and similarities between
children with intellectual disabilities in China and South Africa
Pages: 37
BACKGROUND Children and youth with intellectual disabilities have a right to participation in life just
like any other children. AIM This study aims to explore the most influential factor on the participation of
a child with intellectual disability and to compare the level of participation between children with ID from
South Africa and China. To this day there is still insufficient information on what can influence the
participation of children with intellectually disability and how to improve their attendance in everyday
activities. METHOD A cross-sectional study using secondary data was conducted. The data was collected
through the ‘Picture my participation’ tool that explores the self-perceptions of children with ID in
everyday activities. Study participants were 191 children and youth from South Africa and China, ages 6
to 21, who have intellectual disabilities. A multiple linear regression was conducted to find an answer to
the research questions. Data of this study was retrieved from the CHILD group at Jönköping University.
RESULTS The findings of this study show that children with intellectual disabilities have a lower
participation rate in social and community activities than in home activities. It shows that children who
live in South Africa have a higher participation mean than children in China. Within China children who
live in an urban area show higher participation than the children living in the rural area CONCLUSION
The level of participation of children and youth with intellectual disabilities is highly influenced by the
social environmental factors in the child’s life. Cultural contexts include the country, socio-economic
status, poverty, and ethnicity. A child and his environment are all part of a greater cultural context.
Keywords: child disability, intellectual disability, everyday activity, attendance, participation,
low- and middle-income countries, bioecological model
Postal address
Högskolan för lärande
och kommunikation (HLK)
Box 1026
551 11 JÖNKÖPING
Street address
Gjuterigatan 5
Telephone
036–101000
Fax
036162585
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Table of Contents
1. Introduction ..............................................................................................................................5
2. Background ...............................................................................................................................6
2.1 Participation .......................................................................................................................6
2.2 Cultural environment .........................................................................................................7
2.3 Children with disabilities in China ....................................................................................8
2.4 Children with disabilities in South Africa .........................................................................8
2.5 Cultural differences China vs. South Africa ......................................................................9
2.6 The socioeconomic status in South Africa and China .....................................................10
3. Aim ...........................................................................................................................................12
3.1 Rationale ..........................................................................................................................12
3.2 Research questions ...........................................................................................................13
4. Theoretical Framework..........................................................................................................13
4.1 The bioecological model of development ........................................................................13
5. Method .....................................................................................................................................16
5.1 Study design .....................................................................................................................16
5.2 Participants .......................................................................................................................16
5.3 Data collection .................................................................................................................16
5.4 Instrument ........................................................................................................................17
5.5 Data analysis ....................................................................................................................18
5.6 Reliability and validity .....................................................................................................20
6. Ethical Consideration .............................................................................................................21
7. Results ......................................................................................................................................22
7.1 Independent Samples T-test per variable .........................................................................22
7.2 Average participation per country per activity ................................................................24
7.3 Multiple Linear Regression..............................................................................................27
7.3.1 Multiple Linear Regression per country ....................................................................................28
8. Discussion ................................................................................................................................29
8.1 Participation in everyday activities for children with ID .................................................29
8.2 Differences and similarities in participation between China and South Africa ...............31
8.3 Influence of country and culture on child’s participation ................................................33
8.4 Suggested future research ................................................................................................34
8.5 Limitations .......................................................................................................................35
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9. Conclusion ...............................................................................................................................36
References ........................................................................................................................................38
Appendix A ......................................................................................................................................46
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Abbreviations
CH China
ICF-CY International Classification of Functioning, Disability and Health-
Children and Youth Version
ID Intellectual disability
PmP Picture my Participation Tool
SA South Africa
UNCRC The United Nations Convention on the Rights of the Child
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1. Introduction
In Article 2 of the Convention on the Rights of the Child (UNCRC, 1989), disability is
mentioned as one of the personal characteristics on the basis of which children cannot be
discriminated against. Article 23 deals specifically with children with disabilities and states the
right to accurate care and protection in any situation. A child with a mental or physical
disability is entitled to special care. The convention guarantees the right of a child with a
disability to live a dignified and independent life. Children with disabilities should be able to
go to regular schools as much as possible and live at home as much as possible. The convention
also provides that a disabled child should be able to actively participate in society (Uçus &
Dedeoglu, 2016). In addition, the government provides assistance to ensure access to
education, recreation and healthcare. This support must contribute to the fullest possible
integration of the child into society and to his / her personal functioning. In order to develop
his talents, it is important that a child feels good about himself (well-being) and is captivated
(involvement) in everyday activities. Everyday activities, such as going to school, brushing
teeth or helping out at home require a certain level of functioning for the child and his/ her
environment. When describing (problems with) functioning, the International classification of
functioning, disability and health (WHO, 2007) is used to describes how people deal with their
health condition in everyday life. The ICF-CY contains descriptors (regardless of cause) of
human functioning. The desciptors can be viewed from three angles: the human being as an
organism (functions & anatomical properties), human actions (activities) and participation in
society (participation). Thus, participation is described as ‘the involvement in a life situation’
(WHO, 2007, p. xvi).
A child with an intellectual disability develops slower and different from other children.
According to the definition of the World Health Organization (2020) a child with intellectual
disabilities has a ‘reduced ability to understand new or complex information and to learn and
apply new skills.’(WHO, 2020). An intellectual disability can be caused through many ways
and the limitations of every child are different. There are children with Down’s syndrome or
children with a brain disfunction. Sometimes children with an intellectual disability also have
a physical disability. Children with intellectual disabilities have difficulty learning and
understanding what is going on around them. They perceive the world in a different way. The
perception of time of a child with ID is usually also limited. They do not know what tomorrow
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or next week is. Some children cannot even imagine what will happen the next hour. They can
feel very anxious and insecure, which is reflected in restlessness or unruly behavior. Playing
together with peers is important for the functioning of every child, but sometimes a child with
an intellectual disability is not able to play with his peers. When children with intellectual
disabilities play together with others, it is important to place children with the same interests
and possibilities together (King et al., 2013). One does not look at the real age of the child, but
at his way of acting and playing (level of functioning).
There are different factors, such as age, gender, diagnosis and environment, that can influence
participation of the child in a certain activity. The social and cultural context have a major
influence on the education and functioning of children (Packer, 2017). The education and
functioning of children cannot be viewed separately from the context in which these processes
take place. The term childhood fits in with prosperous, western societies. In non-Western
societies with a low level of functioning, children not only have psychological, but usually also
important economic value for parents. Children often give to the social economic status of the
family early on and form a kind of retirement provision for their parents. Children can have a
different role and value in different societies (Brosinsky et al., 2018).This research explores
the level of participation among children and youth with intellectual disability living in two
different cultures, China and South Africa.
2. Background
2.1 Participation
The World Health Organization defines participation as a person's ‘involvement in a life
situation (WHO, 2007, p. xvi). Life situations can include activities that take place at home, in
the community or in a social setting. In any study with children with disabilities, improved
participation is often seen as the ultimate goal of treatment or intervention (Coster & Khetani,
2008, King et al., 2013). That emphasis on participation coincides with the introduction of the
ICF-CY model of the World Health Organization (WHO, 2007). In this model, participation is
defined as ‘involvement in situations in daily life’. Participation is described as an outcome
with two essential constructs: attendance and involvement. Attendance is defined as ‘being
there’ and is measured with the frequency of attendance and the different types of activities
that are done (Adolfsson et al., 2011). Involvement is about the experience of participation
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while the child is present and consists of elements such as perseverance, motivation and
affection, and it may also include the experience of social connections (Winswold, 2010).
The related constructs that are often measured are competence in activities, a sense of self-
worth (such as, determination, self-perception) and preferences. Each of these constructs can
change as a result of participation, and each of them can influence future participation, they are
however not actual participation. If the goal is to improve participation, the two elements that
can be considered are attendance and involvement. Motivation during attendance is more
related to involvement, while the motivation to be present is more a preference. Self-efficacy
is one of the aspects of the ‘self-esteem’ construct and can change due to improved
competences and / or participation, but it is not part of participation (Adair et al., 2015).
Consequently, this research will focus on the degree of participation of a child with a disability.
Since the Picture my Participation tool (Willis et al., 2015) is designed for any cultural setting,
research questions are aimed at looking at the level of participation for a child and if it depends
on his surrounding and background (Hayes et al., 2017). The bioecological model of human
development by Uri Bronfenbrenner (Bronfenbrenner & Morris, 2007) emphasizes the
importance of the social environment on the education and development of children. The
bioecological framework is thus expanded with a cultural dimension.
2.2 Cultural environment
Experience always involves interaction with a sociocultural environment. Bu having the culture
as an environment the child can be influenced by its surroundings (Biesta et al., 1997). Then
merely being present in a certain sociocultural environment is not enough to be able to acquire
that culture for oneself. According to Bronfenbrenner (2007) the only way the child can learn
about the culture, is by participating in shared practices in which social encounter plays a role.
After all, it is only there that the meaning is assigned to certain things, actions or events. Only
in and through social interaction and communication can the child get in touch with the culture
and become familiar with it.
So, the individual factors (the continuous reconstruction of experience) and the social factors
(the events developed in a culture) do not simply come together and the activities of the child
itself are also insufficient to bridge this link. The connecting link between the individual and
the social factors is the social interaction or communication (Biesta et al., 1997).
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2.3 Children with disabilities in China
In China, discrimination against people with disabilities is unfortunately a part of everyday
life. Statistics show that more than 80 million people with disabilities live in China (out of
almost 1.4 billion inhabitants) (Berk, 2009). However, the social systems are not set up for this.
Christian churches increased their commitment to people with disabilities, yet they did not have
enough trained personnel and resources. In the rural area which is also dominated by
Buddhism, many families believe that the reason for disability is a failure in an earlier life
(Weller, 2006). Many parents are ashamed of their disabled child (Vygotskiĭ et al., 1993). If
they learn during pregnancy that the child will not be born healthy, many will have an abortion
(Xiong et al., 2011). Other parents give their child away for adoption immediately after birth.
It was 30 years ago when China started to take necessary steps towards a stronger care system
for its disabled people. In 2008, shortly before the Beijing Paralympic Games, the UN
Convention on the Protection of the Rights of Disabled People was ratified. In the large cities
there are now centers with rehabilitation measures, people with disabilities receive state social
assistance and have health insurance (X. Zheng et al., 2012). However, care is still poor in the
countryside, where an estimated two thirds of the disabled people live (Xiong et al., 2011).
Almost 90 percent of the children in China's orphanages are disabled, but there is little therapy
and medical care (X. Zheng et al., 2012). Every year, thousands of children with disabilities
are abandoned in China because their parents cannot afford treatment and because they have
long been considered an embarrassment. Even today, people with disabilities are hardly
recognized by the Chinese society, there is a lack of initiatives that promote more equality (X.
Zheng et al., 2012). There are many people who fall between two stools, including the disabled.
There are almost no facilities for the physically or mentally handicapped. Mentally disabled
people go to school like all other children up to the age of 17, after which there is no childcare
from the government. Parents or other family members often take great care of their son,
daughter, brother or sister, but struggle to combine these care tasks with work and career. This
obviously has an effect on family income. These families depend on private initiatives (Eide
& Ingstad, 2011).
2.4 Children with disabilities in South Africa
In South Africa, children with disabilities are often hidden in the community. A part of the
population in South Africa believes that a ‘normal’ person cannot bear a child with disabilities
(Thsitake et al., 2013). It is considered a curse for wrong behavior (Vygotskiĭ et al., 1993). The
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dead are believed to be able to return after their death and counsel or curse their family
members. This is the reason these children and their families are often outcast and socially
marginalized. South Africa is doing well theoretically when it comes to the rights of people
with disabilities (CRPD, 2006). The constitution prohibits discrimination against people with
disabilities, there are numerous laws protecting them, and South Africa has signed the United
Nations Convention on the Rights of Persons with Disabilities. It says, for example, that pupils
or students with disabilities must be taught at regular schools or universities. But theory is not
practice, there is a lack of implementation (Eide & Ingstad, 2011). There are also no
government campaigns in South Africa to educate people that disability is not a curse (Thsitake
et al., 2013). In addition, many disabled children stay at home. Schools and kindergartens are
not barrier-free and there is a lack of suitable staff. The Ministry of Women, Children and
People with Disabilities - one of more than 40 ministries in the country - does not have the
power and, above all, the budget to do anything about this situation (Lygnegård et al., 2013).
South Africa faces many challenges given the country's enormous problems with poverty,
unemployment, a malfunctioning education system, poor provision of services, crime and
corruption. (Thsitake et al., 2013).
2.5 Cultural differences China vs. South Africa
Cultures can be compared using the framework of cultural dimensions by Geert Hofstede. This
theory looks at power distance, socialism versus individualism, femininity versus masculinity
and uncertainty avoidance (Hofstede, 2010). To compare two countries when analyzing data
on children’s participation it is vital to be aware of the cultural differences in the country. The
dimension of power distance is defined by Hofstede (2010) as ‘the extent to which less
powerful members expect and accept in society a country where power is distributed
unequally’ which is related to how cultures act towards the problem of inequality in society
(Hofstede, 2010). China scores 80 out of 100 and South Africa scores 49, this shows a big
difference in how both countries deal with the issue on inequality. China deals way less with
inequalities, whereas in South Africa there is a higher expectation that everyone has a place in
the system, even though it is low. China and South Africa differ most when it comes to
individualism vs. collectivism. South Africa has a collective culture (Roisman et al., 2017). In
this country the population is considered a group. They are almost not seen as individuals.
People live, survive and share everything together. Individualism is less prevalent in South
Africa than it is in China. This is because China is more prosperous and more long term
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oriented than South Africa. Interestingly, the masculinity values for South Africa and China
are both between 63 and 66, both of which are significantly above the global average (value:
50). Both are therefore to be seen as masculine cultures (Hofstede, 2010). A masculine culture
is more focused on achievement, competition and success. This is important, because a culture
that values success more than care and quality of life (feminine) is naturally less likely to be
inclusive towards people with disability, since they are never truly able to keep up with the
competition and achieve what the society considers success.
2.6 The socioeconomic status in South Africa and China
Both in China and in South Africa the gap between rich and poor is still present. A high level
of well-being has a major influence on personal development and participation contributes
positively to this. Every person wished to participate fully in life situations, regardless of their
level of development (Laevers et al., 1994). Well-being and participation are therefore strongly
influenced by the environment of the child. Due to its strong cultural diversity, South Africa is
often called ‘A world in one country’. With the contrast between well-developed urban areas
and extremely poor rural areas, South Africa faces numerous challenges, particularly with
regard to children's rights (Giarelli et al., 2009). Which is also greatly the case in China. Main
problems that children in South Africa and China are facing today are poverty, health,
education and child abuse. The World Health Organization (WHO, 2007) sees disability as an
interaction between the person and their environment. Attention to both social and
environmental factors is considered important to support youth in realizing an ideal
development.
Rather than 'child poverty’, a large-scale survey research refers to 'child poverty risk' or
'children with an increased risk of poverty' (Hughes, 2013). The term ‘risk of poverty’
expresses the narrowing down to ‘income poverty’. More specifically, these are children who
live in a low-income family. Families with a child with a disability appear to have a weaker
socio-economic profile compared to an average family (Hughes, 2013). Single-parent families
are more common, mothers are less educated and less often have a paid job. The low labor
participation of the mothers may have to do with the higher care costs that a child with a
disability requires. However, the average standardized household income is not much lower
than that of the average households, which suggests that the lower employment rates of these
families are relatively well covered by social security in South Africa (Shonkoff & Meisels,
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2000). However, the situation changes if we also take into account childcare and medical
expenditure for the children. After deduction of these costs, the family income of the families
falls by no less than 24%, with medical expenses being the main factor (income drop by 15%),
for families with young children (-3 years) this is 11% (mainly costs childcare), at families
with children aged 3-15 years it is 4%. The poverty risk of families with a child with a disability
therefore rises sharply after deduction of childcare and medical expenses: from 19% to 28%.
The apartheid regime and its abolition still play a major role in South Africa. There are major
cultural and socio-economic differences at national, regional and local level (Ataguba et al.,
2011). The poorest 10% of the South African population owns slightly more than 1% of the
national income. The wealthiest 10% of South Africa owns nearly half. Apartheid still has a
lot of influence on the difference between poor and rich South Africans. More than two thirds
of black children live in low-income households. That affects the economy and business. South
Africa still has a bad reputation when it comes to violence and crime (Ataguba et al., 2011). In
the townships of large cities such as Johannesburg and Cape Town, violence is a daily practice.
Beyond that there is still a lot of violence between the black population and white farmers. The
values, norms and customs often differ per region and per population group. There are also
clear regional differences: Johannesburg, Pretoria, Cape Town, Port Elizabeth and Durban are
developed economic centers, but the rest of the country is underdeveloped. Because of these
major differences, South Africa has a so-called ‘dual economy’: the country has characteristics
of both a developed country and an underdeveloped country.
China is an emerging economy with a relatively low income per capita. The financial growth
is largely the result of an economic liberalization policy. Based on data from 2012, China has
a Gini coefficient of 0.55, according to researchers from the University of Beijing. With a result
of more than 0.4, the World Bank (Xie & Zhou, 2014) believes that there is significant income
inequality. Only South Africa and Brazil are even higher with Gini coefficient of 0.63 and 0.53
respectively. The poorest 25% of all Chinese households have only a 1% share of the country's
total wealth. Despite the great economic progress, part of the population still lives in great
poverty. According to the United Nations Development Program in 2014, 5.2% of the
population in the People's Republic of China lived below the poverty line, comparable to more
than 71 million people. This poverty mainly focuses on the countryside. Around 20% of people
in work have an income of less than two dollars a day (UNDP China: Human Development
Indicators, 2016).
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Looking at the gross domestic product (GDP) per capita we can see that China’s GDP per
capita stood at 10,098 US Dollars for 2019. South Africa’s GDP per capita stood at 6,100 US
Dollars for 2019 and it is predicted to increase by 1.13 percent (International Monetary Fund,
2019). The unemployment rate can give a general overview on the participation in the labor
market. In comparison, the International Monetary Fund (2019) reports an unemployment rate
of 28.7 % in South Africa and a rating of only 3.8 % in China. This low employment rate in
South Africa can be a key factor between the large income gap in the country, especially among
black South African people.
3. Aim
3.1 Rationale
Early research shows that a growing number of children seem to experience serious problems
in personal functioning due to some form of disability and as a result are experiencing obstacles
in social participation (Matson, 2019). When children with an intellectual disability are
compared with children without an ID, it is especially the difference in development that stands
out. Children with intellectual disabilities are lagging behind in their development. Having an
intellectual disability is a complex subject, which is still being researched and investigated to
this day. There is an amount of information available on this subject, however more study is
necessary that focusses on children living in lower-middle-income countries (Daley et al.,
2013). Additionally, insufficient information is available on what can influence the level of
participation of children with intellectual disability and how these environmental factors can
be altered to improve everyday participation. This study aims to investigate different factors
such as age, area, gender and country and to compare these with the average everyday
participation of a child or youth with intellectual disability. Hence, to explore the most
influential factor on attendance in daily activities of a child with ID. Research on how the child
with an intellectual disability evaluates his/ her own level of attendance in participation is
scarce. The picture my participation tool (Arvidsson et al., 2019) is designed especially for
these children in order for them to rate their attendance. The child's voice is central to this and
it should be heard (UNCRC, 1989).
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3.2 Research questions
Overall, this study aimed to investigate how children with intellectual disabilities participate
in everyday life activities. Data from South Africa and China will be compared with each other
to discover how different factors influence a child’s participation. The purpose of this research
is to see if there is any difference related to participation of a child with intellectual disabilities
in South Africa and in China in everyday activities.
The study was further guided by the following research questions:
1. To what level of attendance do children and youth with intellectual disabilities in China
and South Africa participate in everyday activities?
2. What differences and similarities are there between children and youth with intellectual
disability from South Africa and China in terms of participation in everyday activities?
3. Which of the following factors most influence participation in everyday activities of
children and youth with intellectual disability in South Africa and China: age, gender,
urban/rural area or country?
4. Theoretical Framework
4.1 The bioecological model of development
The relationship between man and environment is central in the bioecological model of
Bronfenbrenner. He sees the environment as ‘the immediate space of experience that is
perceived’ (Ashiabi & O’neal, 2015). In the environment, also called 'ecological space', three
points of view are distinguished by Bronfenbrenner (2007). Namely 'the observed spatial or
physical aspect (the psychic dimension), the persons with their different relationships that have
a place in it (the social dimension) and the actions that these persons perform alone or with
each other, including the social significance of the actions (Hayes et al., 2017). In addition to
these three points of view, Bronfenbrenner, like other representatives of the bioecological
approach, distinguishes mutually influencing concentric systems in his model (Bronfenbrenner
& Morris, 2007). These systems concern the microsystem, the mesosystem, the exosystem and
the macrosystem (Ashiabi & O’neal, 2015). Four systems that, as he puts it himself, have the
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same kind of construction as the well-known Russian dolls where a new doll appears every
time (Bronfenbrenner, 1986; Eysenck, 2004). With the bioecological model of
Bronfenbrenner, a new system appears, as it were, every time. Bronfenbrenner is particularly
interested in the significance of these systems for the promotion of personality development.
According to him, the development-stimulating potential of every area of life is growing with
the range of supporting connections with other areas (Rosa & Tudge, 2013).
In the middle of the model is the microsystem (Figure 1 below) or also called the ecological
center. This microsystem consists of the direct experiences of a child in a certain setting.
Children usually come into contact with different microsystems per day, such as the
microsystem family and the microsystem school (Eysenck, 2004). The mesosystem is located
around the microsystem. This system is described by Bronfenbrenner as follows: ‘A
mesosystem compromises the interrelations between two or more settings in which the
developing person actively participates’ (Bronfenbrenner, 1986, p. 25). Examples are the
relationship between family and school and the relationship between school and the peer group
(Bronfenbrenner & Morris, 2007).
The layer around the mesosystem is the exosystem. The exosystem consists of factors of which
the young person is not directly a part, but which have an indirect influence on him (Eysenck,
2004). The school policy, the media and the work of the parents are, for example, in the
exosystem (Ashiabi & O’neal, 2015). The influence of society is called the macrosystem. The
word ‘macro’ comes from the Greek word ‘big.’ This was chosen because it was thought to be
the most comprehensive system. This system includes cultural and social norms and values
that affect the development of the individual, examples of which are religious influence and
gender norms (Hayes et al., 2017). The macrosystem consists of the society and subculture to
which the child belongs. This is specifically about the person’s belief system, lifestyle, patterns
of social interactions and life changes (Urban et al., 2009). These systems are seen as a set of
instructions for the other three systems. For example, democratic ideas influence the
exosystem, such as parent’s occupation (Hayes et al., 2017).
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Figure 1: Bronfenbrenner’s Bioecological model of development presenting the multiple
contextual levels. (Teigland et al., 2018)
According to this model, external environmental factors influence the development of a child
(Berns, 2006). Bronfenbrenner’s model organizes these external factors in the layers of his
model (Bronfenbrenner & Morris, 2007). The strongest variant of this model assumes that it is
the current environment, throughout development, that has the most important influence on
social-emotional functioning. If the environment changes, then the individual also changes. An
example can be the Covid-19 Pandemic of 2020 which had great impact on the child’s
environment, by not attending school or attending any social activities (OECD, 2020a). This
would mean that every trait of a child can be adjusted, provided that the right environment is
offered. This dynamic view contrasts strongly with earlier environmental models in which the
environment was still seen as a factor that only applies in early childhood. The social
environment in which the child grows up plays an important role in this model. These are for
example the mother, father, grandparents, peers, siblings (Ashiabi & O’neal, 2015). On the
basis of insights into the important role of the environment, the bioecological model of
Bronfenbrenner (2007) was created. Given that environments can be changed, the clinical
models have also made the clinical perspective important and various applications have been
developed, behavioral therapy being an example of this (Wal & Wilde, 2017).
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5. Method
5.1 Study design
This study is part of a larger study and uses the data from one of the researchers in the CHILD
group at Jönköping University. This study is a quantitative-based cross-sectional design, which
helps to compare the different datasets. Quantitative research involves testing a theory
developed in the form of a conceptual model using hypotheses (Vogt, 2011). For the researcher,
conducting quantitative research means operationalizing a theory as carefully as possible and
then measuring it based on variables. The researcher is 'charged' in the way in which he did
this methodically and technically, based on the triad paradigm, methodology, method and
overview of the quantitative research approach.
5.2 Participants
The final participants chosen for this study were 191 children and youth from South Africa and
China with Intellectual Disability. All 191 children filled in the questionnaire correctly and
they were voluntarily involved. Participants included 75 females and 116 males between the
ages of 6 and 21. The data of all participants in this study was part of a larger study and thus is
secondary data. The data set from China included children and youth aged 5-21 years with
intellectual disability, who were recruited using a convenience sampling method of outpatients
of children’s hospitals and students at special needs schools and mainstream schools in Tianjin
and Hebei provinces in mainland China. Data collection took place from May 2017 to January
2019. A sample of 125 children and youths with ID (intellectual disability) was used for this
study. In South Africa, children and youth aged 6-21 years were selected using a convenience
sampling method, with a sample of 66 children with ID. Children with ID were suitable for
inclusion if they attended special education for children with ID or if they were diagnosed with
mild or moderate ID.
5.3 Data collection
The data was collected in South Africa and China, in order to get a variety of participants. Data
was collected by clinical researchers or specially trained people with knowledge about the
target group and the Picture My Participation tool. The parent-report survey was used to collect
basic information (age, gender, disability, residential area) about the child. This study focusses
only on children with an intellectual disability. Therefore, the data was filtered, and a separate
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data set was made. This data set included the following variables: Child with ID (personal
code), Country, Age, Gender, Residential area and level of attendance per activity. Within both
countries all four points of the scale were used for all 20 items.
All the participants and their caregivers were educated of the purpose and processes of the
study. The PmP-C (Simplified) contains 20 items and is available in a paper-based
questionnaire format. Pictures are provided to support the assessment for the purposes of better
understanding of the 20 items and illustrating the different possible replies for frequency of
attendance (Willis et al., 2015). For data analysis, the Likert scale is presented with the
following values: The four-point Likert scale for attendance (1 = never; 2 = rare; 3 =
sometimes; 4 = always).
5.4 Instrument
The tool Picture My participation (see appendix A) was designed in 2014 and is intended for
children and youth from 5 to 21 years. The picture my participation tool is a developing product
which can measure the child’s participation in an activity. It measures participation in 20
different home, community and social activities. It is a self-rating tool that allows children to
answer the questions independently through pictures (talking mats) that allow children to
understand the questionnaire better. Parents were asked to fill out a consent letter and
demographic information of the child. An assent letter for children was filled out. In order to
conduct the interview with the child follow equipment was used: Talking Mat (Piece of carpet
to display the Picture cards on), Copy of each image for each activity, Picture my Participation
Response Score sheet: child (see appendix A), pen or pencil for recording. The tool has been
designed for people from any background, additional training is not necessary. However, a
self-directed eLearning tutorial is available for people who are new to PmP. The tool intention
is to elicit the voice and perspective of children about their own participation. It can be applied
to any culture as long as the 20 items are adjusted so that the child can relate to them. As stated
above, the term ‘participation’ can be measured in two ways, frequency (attendance) and
perceived involvement (engagement). The interview with the child has a duration of 30
minutes, considering the child’s age (Arvidsson et al., 2019). The PmP-C (Simplified) uses
culturally perceptive images and organized approach to help children identify participation
from four aspects:
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(1) frequency of attendance of an activity
(2) level of involvement when performing an activity
(3) choice of three important activities determined independently
(4) evaluation of perceived barriers to and facilitators of participation
The main focus of this study however was on the frequency of attendance, which is applied as
how often a child partakes in activities through a range of life situations.
Table 1. Attendance scoring table
Score Level Definition
4 Always The child attends all of the time
3 Sometimes The child attends some of the time
2 Not really The child occasionally/ rarely attends
1 Never The child does not attend
5.5 Data analysis
The questionnaire involved four binary variables which were used for this study: age, country,
gender and residential area. Data from South Africa and China was used. Two data sets were
combined and filtered in order to answer the research questions correctly, using IBM Statistics
SPSS version 25 (Vogt, 2011). The sample consisted of 191 children with intellectual disability
and was 60 % Male and 40 % Female. Males are more likely to be diagnosed with intellectual
disability than females (Johnson, 2009).
Table 2. Descriptive statistics on participants with intellectual disability (N=191). Including
mean (M) and standard deviation (SD).
Variable Participants M SD
Area Urban 120 .6283 .48454
Rural 71
Age Younger 116 .6073 .48963
Older 75
Country South Africa 66 .3455 .47680
China 125
Gender Boy 116 .6073 .48963
Girl 75
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The table above shows descriptive statistics of the given data which has been collected through
the PmP CHILD group. Area is coded as 0 = Rural and 1 = Urban. Age is coded as 0 = Younger
and 1 = Older. Country is coded as 0 = China and 1= South Africa. Gender is coded as 0 = Girl
and 1 = Boy. The variable of Age has been divided into two categories, with ‘Younger’
meaning the children aged below and equal to 13 years of age and ‘Older’ meaning the children
between 14 and 21 years of age. The mean of the age of the children, which is visible in Figure
2 below, was 13.11 years (SD = 3.2) so therefore it was chosen as the dividing factor for the
variable ‘age’.
Figure 2. Histogram of the age of the child (N = 191)
Note. The Mean of the Age is 13.11 with a Standard Deviation of 3.2.
The relevance and meaning of the 20 elements of Picture My Participation were assessed in
frequency counts of the selection of the 20 elements of the Picture My Participation tool. Data
was exported to IBM Statistics SPSS version 25 and analyzed. Both datasets were combined
into one file in order to work with the data correctly. Four different analyses were conducted
in SPSS: frequencies, independent sample T-test, Mann-Whitney U test and a multiple linear
regression (Abbott, 2017). Research question one was answered by conducting an Independent
Master Thesis Sharon Eichler
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sample T-test. Research question two, which compares the results of an independent variable,
was analyzed by using frequencies comparing means. In order to test whether the values of the
ordinal variable differ between two separate groups the Mann-Whitney U test was applied
(Abbott, 2017). To approach research question three, which questions what factor can have the
biggest influence on the participation of the child, a multiple linear regression analysis was
conducted.
The mean of participation of each child was calculated by computing a new variable and using
the Function ‘Mean’ in the numeric expression box, subsequently each of the 20 activities was
added and calculated. The new variable ‘Participation Mean’ showed the average data of
participation. The range is between 1 and 4. So when a child would answer ‘always’ (4) for
every activity the average would be calculated as followed: 4 x 20 / 4 = 4 = mean participation.
Since the activity variables (Personal Care, Family mealtime etc.) were coded as 1 (never) 2
(not really), 3 (sometimes) and 4 (always) the mean was calculated.
5.6 Reliability and validity
Carrig and Hoyle (Panter et al., 2011, Chapter 5) distinguish between validity and reliability in
terms of guaranteeing quality in research. The reliability of the research was increased as the
questionnaire had been tested beforehand and as it showed steady results. The results can be
generalized to a limited extent, because the participants form a selected sample and are thus
not entirely representative of the population. However, the sample is of sufficient size, which
contributes to reliability. Arvidsson et al. (2019) describe the content validity and usefulness
of the tool Picture my participation to measure the attendance and involvement of a child in
everyday activities. Since the tool covers a range of different home, social and community
activities, for the given target group, it improves the content validity. It is also stated that it is
enough to measure only attendance when it comes to exploring the overall effect of
participation. However, when it is applied to individual children and used to develop a personal
intervention plan, then attendance and involvement should both be considered (Arvidsson et
al., 2019).
The validity concerns the influence of the research on systematic errors (Panter et al., 2011).
A threat to the validity of the study may be that the respondent interprets the four points on the
Likert scale in a different way than the researcher. This should always be kept in mind when
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approaching the results of the questionnaire. Another thing that may have had a negative impact
on the internal validity of the study is the fact that the exact way the respondents were
interviewed is unknown, since it is secondary data. Yet, since every participant was anonymous
and he/she had just a personal code, analyzing the data occurred in an objective manner, which
improved the validity of this study.
6. Ethical Consideration
Before discussing the results of the analysis in the next chapter, it is important to consider the
ethical considerations of this research. Ethical considerations are important in the design and
implementation of a study (Daley et al., 2013). In all social science research, it is important to
adhere to basic ethical principles. This is even more important when working with children and
youth, since they cannot necessarily assess possible risks associated with the research. This
means that the consequences of a research must be acceptable and must not cause any damage
to the participants. This was taken into account in various ways during the design and
implementation of this study. Since the data is secondary data it has been approved by the
Ethics Committee boards of both countries, including the relevant local department of
education and hospitals (Arvidsson et al., 2019). Consent was given by the parents/caregivers
through a letter of consent. The collected data is anonymized and cannot be directly traced back
to the child. The respondents are numbered and labeled, excluding the name of the interviewed
person.
According to Rosnow and Rosenthal (in Panter et al., 2011, chapter 3) there are three
fundamental principles of research ethics that should be considered. The first principle is to
have respect for the individual. The potential participants in a research project are considered
to be independent agents. In order for them to be able to decide autonomously for or against
participation, they must be given information that they can understand (Panter et al., 2011).
Each child in this study took part in the questionnaire voluntarily. The participants were
informed of the possibility to withdraw from the interview any time they wanted. The dignity
of people who cannot make autonomous decisions deserves special protection; this includes
children in general but especially children with a disability (Abebe & Bessell, 2014). Therefore,
a letter of informed consent was sent to the parents and caretakers before conducting the
interviews, asking for their approval by signature. The letter included information about the
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project, the people involved, the objectives and the expected effort. It was made clear that the
participation would occur without any constraint or pressure. Only then informed consent is
valid. Research with children under the age of 16 is only allowed if it complies with special
rules. Youth between 12 – 16 years take part with either their parents or their guardian. For
children under the age of 12, both parents or their guardian must give written permission
(Beazley et al., 2009). The principles of beneficence entail the responsibility not to harm other
people, to minimize risks and to maximize the benefits. To ensure this, the researcher is obliged
to take active action that promotes and benefits the well-being (especially life, health and
quality of life) of the participant. This study aims to find possible factors that can influence the
participation of a child, which can then lead to creating an intervention which can improve the
participation of the child. The third principle describes the importance of justice in the
researcher. The benefits and risks of research should be equally distributed and the participants
should be treated fairly (Panter et al., 2011). One group should not benefit from research more
than the other without good ethical justification. The selection of the test subjects should also
be fair: the participants should not be selected because they are easily accessible to the
researcher. The participants in this study were selected by clinical researchers or specially
trained people with expertise about the target group. Every child in this study was treated
equally.
7. Results
7.1 Independent Samples T-test per variable
Four independent-samples T-tests were conducted to compare means of participation per child
among the four main variables. The four variables were area, age, country and gender. The T-
test is used to compare the averages of up to two groups. Below the average participation of all
children was compared to each variable individually. There was no significant difference (ns.)
in the scores for Urban (M = 2.5, SD = 0.56) and Rural (M = 2.4, SD = 0.40) conditions; t (189)
= -1.8, p = 0.076 (Table 3) There was no significant difference (ns.) in the scores for Younger
(M = 2.5, SD = 0.56) and Older (M = 2.5, SD =0.43) conditions; t (189) = -0.4, p = 0.695 (Table
4). There was a significant difference (S) in the scores for South Africa (M = 2.8, SD = 0.61)
and China (M = 2.3, SD = 0.38) conditions; t (189) = -5.7, p = .000 (p < 0.05) (Table 5) There
was no significant difference (ns.) in the scores for Boy (M = 2.5, SD = 0.50) and Girl (M =
2.5, SD = 0.53) conditions; t (189) = -0.85, p = 0.4 (Table 6).
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Children with intellectual disabilities in South Africa have a higher participation rate on
average than children with intellectual disability in China. Children in South Africa are
participating more in everyday activities than children in China. This is seen in table 5 where
the average is 0.4 higher for South African children than for Chinese children. All other three
variables are statistically insignificant.
Table 3. T-test results comparing rural and urban area on participation mean of the child
n Mean SD t df p Decision
Urban 120 2.5456 .56217 -1.786 189 .076 ns.
Rural 71 2.4097 .40060
Table 4. T-test results comparing age on participation mean of the child
n Mean SD t df p Decision
Younger 116 2.5068 .55887 -.393 189 .695 ns.
Older 75 2.4770 .43037
Table 5. T-test results comparing South Africa and China on participation mean of the child
n Mean SD t df p Decision
South
Africa
66 2.7646 .60838 -5.719 189 .000 S.
China 125 2.3528 .38397
Table 6. T-test results comparing boys and girls on participation mean of the child
n Mean SD t df p Decision
Boy 116 2.4698 .49523 -.849 189 .397 ns.
Girl 75 2.5342 .53616
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7.2 Average participation per country per activity
Per country the results on level of attendance of participation per activity are visible below in
table 7 and table 8. Table 7 shows the exact percentage on each answer that was chosen from
the attendance scale (measured from always to never). In South Africa Caring for animals and
Caring for family are both higher than in China. Family mealtime however is higher
participated in than in South Africa. Family time is then again higher in South Africa.
By simply looking at the averages of each country per activity one can observe some
differences. For instance, attendance in Family Mealtime is higher for Chinese children (M =
3.9) compared to South African children (M = 3.2) and it is statistically significance. The
variable Caring for family is higher for South African (M = 3.0) children compared to Chinese
children (M = 2.2). In the ordinal variables Taking care of other family members,
Family/community celebrations and Spiritual activities, children in South Africa also scored
much higher than children in China. A Mann-Whitney U test was conducted to analyse the
statistical significance per item for each country. The Mann-Whitney U test is a non-parametric
test for comparing a (semi-) continuous variable between two independent (unpaired) groups.
Out of 20 items, n = 15 showed significant differences in the mean scores.
Table 7. Proportion of children who chose level of participation in each activity
Activity item in PmP
Country
China (n = 125) South Africa (n = 66)
ID (%) ID (%)
Never
Not
really
Some-
times
Al-
ways Never
Not
really
Some-
times
Al-
ways
Daily routines at home for personal
care
5.6 1.6 13.6 79.2 3.0 4.5 25.8 66.7
Family mealtime (with family
members)
1.6 0.0 6.4 92.0 7.6 10.6 31.8 50.0
Looking after his/her own health 15.2 47.2 21.6 16.0 31.8 24.2 19.7 24.2
Gathering daily necessities for the
family
25.6 36.8 24.8 12.8 34.8 7.6 22.7 34.8
Meal preparation with or for the
family
42.4 32.8 20.0 4.8 43.1 15.4 26.2 15.4
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Cleaning up at home (laundry,
rubbish etc.)
17.6 33.6 25.6 23.2 10.6 21.2 40.9 27.3
Taking care of other family
members
30.4 27.2 32.0 10.4 12.1 12.1 34.8 40.9
Taking care of animals 62.4 23.2 8.0 6.4 31.8 19.7 18.2 30.3
Interact with the family 22.4 26.4 29.6 21.6 6.1 10.6 43.9 39.4
Family/community celebrations 26.4 46.4 23.2 4.0 10.6 16.7 34.8 37.9
Playing with children in the
community
32.0 21.6 36.0 10.4 19.7 13.6 30.3 36.4
Organised leisure activities (sport,
clubs)
23.2 30.4 31.2 15.2 18.2 15.2 33.3 33.3
Quiet leisure (listening to music,
reading)
12.0 32.8 28.0 27.2 15.2 19.7 27.3 37.9
Religious and spiritual gatherings/
activities
60.8 29.6% 7.2 2.4 13.6 22.7 27.3 36.4
Shopping and errands (market) 14.4 34.4% 36.0 15.2 15.2 19.7 31.8 33.3
Taking part in social activities in the
community (parties, play group,
parades)
52.8 32.8 13.6 0.8 53.8 18.5 15.4 12.3
Visit to health centre 21.6 51.2 22.4 4.8 16.7 19.7 39.4 24.2
Formal learning at school 7.2 2.4 12.0 78.4 7.6 4.5 33.3 54.5
Overnights visits and trips 32.8 37.6 19.2 10.4 15.2 19.7 37.9 27.3
Paid and unpaid employment 76.8 16.0 6.4 0.8 55.4 12.3 16.9 15.4
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Table 8. Mean scores (M) for South Africa and China on level of participation in everyday
activities. Scale ranges from 1 (never) to 4 (always).
Activity item in PmP China
(n = 125)
M
South
Africa
(n = 66)
M
Overall
Mean
P-
valu
e
Personal care (getting dressed, brushing teeth) 3.66 3.56 3.63 0.08
Family mealtime (with usual family members) 3.89 3.24 3.66 0.00
My own health: Looking after his/her own health 2.38 2.36 2.38 0.73
Gathering supplies for the family (water, food etc.) 2.25 2.58 2.36 0.08
Meal preparation with or for the family 1.87 2.14 1.96 0.19
Cleaning up at home (clothing, household objects,
laundry)
2.54 2.85 2.65 0.04
Taking care of other family members 2.22 3.05 2.51 0.00
Taking care of animals (pet, or domestic livestock) 1.58 2.47 1.89 0.00
Family time: Interact with the family 2.50 3.17 2.73 0.00
Family/community celebrations (Birthdays,
Weddings, Holiday)
2.05 3.00 2.38 0.00
Playing with others: Getting together with children in
the community
2.25 2.83 2.45 0.00
Organized leisure activities (sport, clubs, music, art,
dance)
2.38 2.82 2.53 0.01
Quiet leisure (listening to music, reading) 2.70 2.88 2.76 0.01
Spiritual activities: Religious and spiritual gatherings 1.51 2.86 1.98 0.00
Shopping and errands (market) 2.52 2.83 2.63 0.03
Taking part in social activities in the community
(parties, play group)
1.62 1.86 1.71 0.39
Visit to health center (Doctor, dentist, other service) 2.10 2.71 2.31 0.00
School: Formal learning at school 3.62 3.35 3.52 0.00
Overnights visits and trips 2.07 2.77 2.31 0.00
Paid and unpaid employment 1.31 1.92 1.52 0.00
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7.3 Multiple Linear Regression
A multiple linear regression was conducted to predict the average participation of the child
based on Area, Age, Gender and Country. The results revealed that Area, Age and Gender are
not statistically significant predictors to the model (p < 0.05). However, the results of the
regression in table 10 revealed a statistically significant association between the participation
of the Child (Dependent Variable) and the Country where the child is from.
Table 9. Model summaryb with all four predictors
Model R
R Square
Adjusted R
Square
Std. Error of
the Estimate
1 .390a .152 .134 .47579
a. Predictors: (Constant), Area, Age Group, Gender Child, Country
b. Dependent Variable: Average Participation
The R Squared above shows us the Goodness of fit for the model in table 8. The regression
model counts for 15.2 % of the variance in the average participation, which means that 84.8 %
of the variation cannot be explained by these four factors alone.
Table 10. Summary of multiple linear regression analysis for children’s average participation
Model
Unstandardized Coefficients
Standardized
Coefficients
t Sig. B Std. Error Beta
1 (Constant) 2.339 .091 25.792 .000
Gender Child -.025 .071 -.024 -.344 .731
Country .400 .074 .373 5.387 .000
Age Group -.014 .072 -.013 -.189 .850
Area .066 .073 .062 .904 .367
a. Dependent Variable: Average Participation
While Country contributed significantly to the model (B = .400, p < 0.05), Gender (B = -.025,
p = 0.7), Age (B = -0.01, p = 0.85). and Area (B = 0.07 p = 0.4) did not.
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Table 11. Model summaryb without the country variable
Model R R Square
Adjusted R
Square
Std. Error of
the Estimate
1 .141a .020 .004 .51019
a. Predictors: (Constant), Area, Age Group, Gender Child
b. Dependent Variable: Average Participation
The R square in table 11 shows us that when we take out the Predictor Country (p < 0.05) the
goodness of fit is very low with R Square = 0.02. Which displays that only a small percentage
of the difference can be explained by the variables.
7.3.1 Multiple Linear Regression per country
A multiple linear regression was conducted to predict the effect of Area, Gender or Age on the
participation of the Child per Country. The analysis with cases only from South Africa (table
12) below shows that none of the predictors are statistically significant (p > 0.05). The analysis
with cases only from China (Table 13) shows that Age (Beta = -0.04, t (125) = -0.4) and Gender
(Beta = -0.1, t (125) = -1.2) did not significantly predict the level of participation, Area however
did significantly predicts the level of participation (Beta = 0.2, t (125) = 2.3, p < 0.05). Since
Area was coded as 0 = Rural and 1 = Urban children living in an urban area have a higher level
of average participation (B = 0.158).
Table 12. Summary of multiple linear regression analysis for South Africa average
participation
Model
Unstandardized Coefficients
Standardized
Coefficients
t Sig. B Std. Error Beta
1 (Constant) 2.819 .194 14.538 .000
Area -.190 .174 -.138 -1.090 .280
Gender Child .095 .152 .078 .623 .535
Age Group .052 .164 .040 .317 .752
a. Dependent Variable: Average Participation
b. Selecting only cases for which Country = South Africa
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Table 13. Summary of multiple linear regression analysis for China average participation
Model
Unstandardized Coefficients
Standardized
Coefficients
t Sig. B Std. Error Beta
1 (Constant) 2.333 .091 25.737 .000
Area .158 .069 .204 2.269 .025
Gender Child -.083 .072 -.104 -1.152 .252
Age Group -.030 .070 -.039 -.427 .670
a. Dependent Variable: Average Participation
b. Selecting only cases for which Country = China
8. Discussion
Overall, this study attempted to investigate how children with intellectual disabilities from
South Africa and China participate in everyday life activities. In this study the focus is on 191
children from South Africa and China, ages 6 to 21, who have intellectual disabilities. The
results show that the country of residence is the strongest predictor to participation and the
attendance in everyday activities. This brings us back to the theory by Uri Bronfenbrenner
(Bronfenbrenner & Morris, 2007) who stated that the culture of a country can have a great
impact on the child’s development. In comparison South Africa is a more collectivistic country
(Probst et al., 1999) than China, who tends to become more and more individualistic (Steele &
Lynch, 2013).
8.1 Participation in everyday activities for children with ID
Primarily, the importance of children's participation is recognized by the International
Convention on the Rights of the Child (UNCRC, 1989). The right to participate is strongly
related to the best interests of the child. Especially children with a disability should be
participating regularly in activities that promote inclusion. The results that were collected
among children with ID, show to what extend they each take part in certain activities. In order
to answer this research question, each of the 20 items show the mean value per country and to
what extend they participate. Table 7 shows the exact percentage of the chosen answer per
activity. Looking at the first variable which describes the personal care of a child it can be seen
that the attendance is very high (M = 3.63) along with the items Family mealtime (M = 3.66)
Master Thesis Sharon Eichler
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and attending School (M = 3.52). All other items score below 3.0 which stands for sometimes
in the PmP questionnaire. Looking at variables that are connected with circumstances around
the child happening outside of his home, we can see that the children score lower. These items
can be categorized into the exosystem and the macrosystem of the bioecological model of
human development. The exosystem also includes factors that affect a child's life. However,
the elements of this system have no direct relationship to the child, it mainly relates to the
parent’s relations which then affect the child. The macrosystem contains the cultural elements
that influence the child and everyone around him. Items that score lower than 2.0 (not really)
are: Taking care of animals (M = 1.89) Spiritual activities/ gatherings (M = 1.98), Taking part
in social activities in the community (M = 1.71) and Paid and unpaid employment (M = 1.52).
It can also be seen that the score for the variable ‘Meal Preparation’ is quite low with an average
rating of ‘not really’. A possible reason for this can be that children with ID find it difficult to
concentrate on one activity for a longer time. Children with intellectual problems also want to
be able to do things by themselves, but that often does not work. They need help from others
(Koenderink, 2018). Repetition and clear instructions are therefore necessary.
Certainly, as the restriction becomes more serious, playing is not self-evident and does not
always happen spontaneously. For a child with a severe disability, the world is not an enticing,
inviting world to explore. They will process the stimuli and information from their environment
differently and with more effort (Koenderink, 2018). We can see in the results that children
score low in Playing with others (M = 2.45) and Organized leisure activities (M = 2.53).
Precisely during these situations, children can learn how to interact with others. In the
microsystem of the bioecological model more extended connections and relations of the child
take place, on the playground or in the neighborhood. Microsystems of younger children are
dependent on the decisions of the parents and are often limited to the family, the relatives,
friendships and contacts of the parents, the pediatrician and other specialists from the social or
medical field or the day care center (Bronfenbrenner & Morris, 2007). However, children with
intellectual disabilities and their families often live an isolated life. Social Isolation among
families with children with a disability has been studied thoroughly in the last couple of years.
Baumgardner (2019) notes that shame and powerlessness are factors that lead to family
isolation. These families are rejected as if they were overprotective or responsible for their own
suffering. They can also feel envious of parents who have healthy children. During all kinds of
social situations parents have to take the limitations of their child into account. The right
interventions should take place in order for parent and child to feel safe and accepted. The
Master Thesis Sharon Eichler
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Handbook of Intellectual Disabilities (Matson, 2019) mentions the importance of organizations
specialized in child and youth psychiatry who should offer guidance and support to prevent
problems for the child later in life (Matson, 2019). As mentioned earlier, others are ‘distressed’
by the behavior and practices of the child with ID. That is the reason that parents of these
children must be helped and guided on how to deal with their child in a constructive way, while
it also remains peaceful within the family. The mesosystem in the bioecological model
describes the connection that takes place between the child and its environment, the child’s
social network. According to Bronfenbrenner (2007), the development-promoting potential of
this system increases if the activities and goals in the individual areas of life are compatible
with one another (Bronfenbrenner & Morris, 2007, p. 810).
8.2 Differences and similarities in participation between China and South Africa
The current study looks at two specifically chosen countries from where the data has been
collected. According to the World Bank (World Bank, 2019) both China and South Africa are
considered to be Upper middle-income countries. The results of this study show that South
Africa scores higher for many community focused activities than China. Taking care of other
family member mainly scores ‘sometimes’ for South Africa and for China the mean is ‘not
really’. Same can be seen for the item ‘taking care of animals’ where South Africa lies closer
to ‘sometimes’ and China to ‘not really’. Other items that show a difference between the two
countries and that tested on significance are (see table 8): Overnights visits and trips, Attending
school, Paid and unpaid employment and Organized leisure activities. When comparing the
two countries 75 percent of all the activities are statistically significant. Table 7 shows an
overview of average responses per activity per country. This means that there is an
exceptionally large effect and that this effect is very consistent across a large group of children.
In relation to the unemployment rate, considering the GDP and the economic status of the
country we can see that the results show a strong difference between the two countries. In this
case we can recognize that Bronfenbrenner’s (2007) Macrosystem influences the child’s
everyday life because it determines how the other systems can express themselves. However,
this too is a case of indirect influence. Nevertheless, it affects the child's development because
it changes the groups that directly affect the child. In South Africa the children with ID have a
higher chance to take part in leisure activities, taking care of family member or taking care of
the animals. In South Africa the social environment of the child is more visible which can
carefully be traced back to the macrosystem of the country.
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The Organization for Economic Co-operation and Development (2020) states that South Africa
has a strong sense of community. In this country 88 % of the population has a person in mind
where they know they can rely on at any time, largely in line with the OECD average of 89%
(OECD, 2020b). According to the United Nations Development Program China (2016) the
majority of people living in China's major cities feel lonely and overburdened. The one-child
policy of China has been in place for over 30 years. These facts can be identified from the
results that were measured with the PmP questionnaire. Another major difference between the
two countries can be seen in the results for the item ‘Spiritual and religious gatherings’ where
South Africa has M = 2.86 and China M = 1.51. According to the World Factbook (Central
Intelligence Agency, 2020) around 52 % of the Chinese population is not affiliated with a
religion, yet in South Africa that number lies at 5% of the population. 82 % percent of the
population in South Africa are Christian. Bronfenbrenner (2007) places these characteristics of
a country into the macrosystem of the bioecological model of human development. The
macrosystem includes effects of migration, the school system, religion in a society, for
example. It influences expectations regarding parenting style, the provision of support services
or dealing with social disadvantage. Van der Weele (2017) discusses the matter that a more
religious country can lead to a stronger community and less loneliness and isolation. A stronger
community can therefore lead to a stronger support system and can so have a greater positive
impact on the development of the child. The results above show a clear difference with South
Africa having a higher attendance in spiritual activities with an average of ‘sometimes’
compared to China with an average of ‘never’.
There are also several similarities among the average participation of the child between both
countries. Equally Chinese and South African children show a high rating for Personal Care
(always), which shows that both groups are almost always getting dressed, brushing teeth etc.
by themselves, here there is no significance present (see table 8). Other items where both
countries show a similar result and no significance: Looking after his/her own health (not
really), Cleaning up at home (sometimes), Playing with others (sometimes), Shopping and
errands (sometimes) and Visit to health center (not really). Each item can be placed in the
microsystem and the exosystem. Surprising to see is that the rating for visit to health center,
playing with others and shopping is quiet low for both countries. The significance values are
all above 0.05 which can be seen in table 8. All activities are in some way connected with the
outer layers of the Bronfenbrenner’s bioecological model (2007), the children have to actually
leave the house in order to complete these activities. As mentioned earlier in this study both
Master Thesis Sharon Eichler
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countries have a certain negative way of thinking about children with disabilities. Most Chinese
believe a disability is something one has to overcome or something one has to be sorry for. In
the public these people are invisible (Campbell & Uren, 2011). Same can be said for South
Africa, where some still believe disability comes from witchcraft (Thsitake et al., 2013).
Dusseljee et al. (2011) conducted that same type of research among children with ID in the
Netherlands and the results show that even though that attendance in certain activities was
higher than other countries they rarely interacted with children without ID (Dusseljee et al.,
2011). Without increased social protection and support, people with disabilities can face
serious social barriers and remain invisible to the rest of society. It is vital to prevent this in the
early stage of the child’s development, with a goal to integrate the child as much as possible in
group activities and community focused events.
8.3 Influence of country and culture on child’s participation
A multiple linear regression (table 12) showed a statistical significance between the
independent variable ‘Country’ and the dependent variable ‘Mean Participation. After
conducting this regression with all four independent variables it can be concluded that South
African children with ID rate themselves higher in attending everyday activities compared to
Chinese children with ID. The two variables age and gender do not predict the level of
participation of the Child with ID. From birth on children are in contact with their environment.
They need that environment to grow from utter helplessness to an independent human being.
The study by Baker and Donelly (2010) show that each child is oriented to the world in its own
individual way. Character and temperament play a role, as do the examples that provide the
environment. However, it also shows that for age and gender it does not make a difference
(Baker & Donelly, 2010). Therefore, we can predict that the country where the child grows up
in has a stronger influence on the participation in everyday activities, compared to the other
factors age, gender and residential area. Earlier, the main differences and similarities between
China and South Africa have been concluded. The influential factor ‘Country’ will be discussed
with the use of Bronfenbrenner’s bioecological model of development. The macrosystem
relates to the general social principles associated with the world view, religion or social vision
within a country (Bronfenbrenner & Morris, 2007). It is the cultural blueprint of society, which
is reflected in the institutions of that society. For example, African society has a higher value
for the community living in comparison to the Chinese society (Thsitake et al., 2013). In South
Africa social problems are solved together with help from the family and the neighborhood.
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This is not yet the case in China, especially in the rural area (Campbell & Uren, 2011). When
looking at the data we can see that within China children who live in the urban area have a
higher attendance than children who live in the rural area. The multiple linear regression shows
a significance between Area and China and a higher rating of participation of children from the
urban area (p = 0.25, B = 0.158). A higher attendance of a child with ID living in an urban area
in China could be explained by the stronger awareness of care institutions for disabled children
in their area. This view assumes that healthcare systems and the rights to healthcare should be
made more accessible in the rural areas of China. A person with an intellectual disability is a
fully-fledged citizen who is part of a society. They have the same rights as everyone (CRPD,
2006). They must be given the same opportunities and possibilities to participate in society in
their own way. The application of Bronfenbrenner’s theory implies the following: the support
from the community is only one element that influences the development of the child. In
addition, other factors act more or less in a similar or opposite direction. Support for pre-school
development should be provided through the support of the family and the immediate
caregivers (Bronfenbrenner & Morris, 2007). Accordingly, the relationship between the mother
and the child form the core element for the development. Thus, when parents experience a
sense of support from society then the sense of loneliness and powerlessness can decrease.
8.4 Suggested future research
This analysis provides insight into the level of attendance in everyday activities among children
with intellectual disability. The findings of this research point to necessary future research to
determine the reliability of results. The study highlights the importance of the social and
environmental context of a child and the family that can influence the intellectual development
of the child with ID. Further research into how children are actually involved in everyday
activities provides insight into how this analysis is actually implemented. In addition, insight
into the experiences of children with ID from other countries can help to gain more insight into
the general participation of children with ID. The rights of people with a disability (CRPD,
2006) are presently being implemented in nations across the world. We can say that the
acceptance of people with a disability in the society is growing (Q. Zheng et al., 2016). It could
be investigated to what extent these guidelines are in line with the concept of meaningful
participation and to what extent they are useful and used throughout school and communities.
Another noteworthy question that could be discussed further is how children living in rural
areas in China and South Africa, who do not attend school, participate in everyday activities.
Master Thesis Sharon Eichler
35
In order to collect this data researcher would have to go into the rural areas which can bring
many issues regarding safety and ethical considerations. Cash and Rabin (2002) and Daley et
al. (2013) discuss this ethical issue in their papers (Council, 2002; Daley et al., 2013).
8.5 Limitations
The quantitative approach of this research allowed a holistic view of the participants. The data
has been collected through a 30-minute questionnaire where children had to answer in a
categorical way. The scale had four options never, not really, sometimes and always. The
interpretation of the answer ‘sometimes’ and ‘not really’ can be perceived differently by every
child, thus can have an impact on the validity of the results. Additionally, the informative value
is limited due to the small sample of 191 children. The data for ‘involvement’, which was a
three-point Likert scale and part of the questionnaire PmP, was not available for the children
in China. Consequently, the data used for this study was only based on the attendance variable
of participation for all 20 items for both countries. The data was collected in schools and
hospitals, thus the children who answered were all attending school. That explains also the high
mean score on the item ‘School’ ( M = 3.52 (always). It would be interesting to measure how
‘involved’ the child is in school and that the child is not only attending the school activities.
During the analysis the three research questions were discussed and built upon. They were
designed in a way so that one theme can lead to a better understanding of the next theme. The
focus was therefore on all 20 items of the questionnaire which presented a clear overview of
the results, however missing possibly other relevant differences/similarities, which may have
negatively impacted the internal validity of the study. The age was divided into two groups:
below and above the average age of 13 years. Results might have been different when splitting
age group differently (E.g. 5-7, 8-11, 12-16, 16-21). Another limitation of the study is that the
results are based on cross-sectional data. As a consequence, no statement can be made about
any causality of the links found. It is therefore desirable that follow-up research should be
longitudinal, so that it can be investigated whether there are causal connections between
executive functions and the socio-emotional development of children with intellectual
disabilities. Moreover, the development of children with intellectual disabilities can thus be
compared per country.
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36
9. Conclusion
The aim of this study was to describe the level of participation among children with intellectual
disabilities and to explore differences and similarities in participation between children with
ID from China and South Africa. The level of participation of children and youth with
intellectual disabilities is highly influenced by the environmental factors in the child’s life. The
findings of this study show that children with ID in general participate less in social and
community activities in comparison to home activities. In both countries, disability is not yet
completely recognized and accepted, children with a disability are still invisible to the society.
Families of children with ID live a more isolated life since they are less involved and present
in social settings.
When comparing South Africa and China on participation, children in South Africa have a
higher participation level when it comes to social and community-based activities. The social
and community activities score higher among South African children, which can be linked to
the collectivistic culture of the country. Community-based cultures can provide a greater
support system for children with ID and their families. The country where the child grows up
in is a strong predictor for the level of participation. Since South Africa is a more religious
country than China it can carefully be stated that a more religious country can lead to a stronger
community. Chinese culture is more isolated and independent which leads to a lower social
attendance in activities of children with ID. Most people in China would consider themselves
not affiliated to a religion. Countries with a stronger sense for community and supportive
construct impact the everyday participation of a child with intellectual disability. The level of
participation of the child with ID in everyday activities is dependent on the social community
of the country. According to the bioecological development model, the context in which a child
grows up has a major influence on its development and behavior. Every country should
consider how to provide a strong sense of community and acceptance for children with
intellectual disability in order to improve participation and thus the social development of the
child. China should create more services for families who feel left out and isolated by their
social environment, they should receive immediate support and advice on how to socially
integrate their child. Also, for South Africa the view on children with disability has to change,
parents and children should be educated on inclusive education and acceptance of children who
seem different. The parents / caretakers are also not aware of the 'possibilities' for their child.
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37
More attention should be payed to the different social organization that already greatly impact
so many children and their families in these cultures.
The best interests of the child are central to the International Convention on the Rights of the
Child (UNCRC, 1989). This should be a primary consideration in all matters affecting the child
with intellectual disability. In order to determine what is in the best interest of the child, the
opinion of the child should always be heard, and their opinion should actually influence what
is decided or determined. Participation is therefore not just a means by which the child can
bring about change. Meaningful participation offers children the opportunity to develop a sense
of autonomy, independence, increased social competence and resilience.
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Appendix A
Picture my Participation Tool
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