Children’s participation in everyday activities1444107/... · 2020-06-20 · Children’s...

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

https://www.zotero.org/google-docs/?E2hjWu


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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).

https://www.zotero.org/google-docs/?Fm6pk3


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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:


18

(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


19

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


20

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


21

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


22

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).


23

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


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


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


Boy 116 2.4698 .49523 -.849 189 .397 ns.

Girl 75 2.5342 .53616


24

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


25

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


26

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


27

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.


28

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


Standardized

Coefficients


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


b. Selecting only cases for which Country = South Africa


29

Table 13. Summary of multiple linear regression analysis for China average participation

Model


Standardized

Coefficients


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


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)


30

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


31

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.


32

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


33

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.


34

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.


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.


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.


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.


38

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Appendix A

Picture my Participation Tool


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48


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