Exploring African Parents' Experiences of Down Syndrome in the UK

This report delves into the experiences of African parents residing in the UK and caring for children with Down syndrome. It examines the prevalence of Down syndrome in the UK, the challenges faced by African parents due to racial discrimination and health inequalities, and the impact of cultural beliefs and knowledge gaps on caregiving. The research employs a systematic review to analyze existing literature, identifying key themes such as coping with stress, negative and positive outlooks, the influence of stigma, and the psychological impact of caregiving. The findings highlight the importance of education, cultural understanding, and healthcare professional skills in supporting African parents. The report concludes by emphasizing the need for future research to improve information sharing and support systems for these families, ultimately aiming to enhance their ability to cope with the challenges associated with Down syndrome and improve the overall well-being of both parents and children.

Running head: THE PERCEPTION AND EXPERIENCES OF AFRICAN PARENTS
LIVING IN UK AND CARING FOR A CHILD OR CHILDREN WITH DOWN
SYNDROME
The perception and experiences of African parents living in UK and caring for a child or
children with Down syndrome
Name of the Student
Name of the University
Author Note

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THE PERCEPTION AND EXPERIENCES OF AFRICAN PARENTS LIVING IN UK
AND CARING FOR A CHILD OR CHILDREN WITH DOWN SYNDROME
Acknowledgment
Performing this particular research has been most knowledge gaining experiences of
my academic life. This research is sure to increase my knowledge base and
analytical skill. It also provided me the opportunity to experience the new
challenges. All this, would be impossible without the dedicated support that I have
received from my professors, seniors and friends. I would like to take this
opportunity to thank my supervisor ----------------------- for his constant
guidance and support and encouragement. Moreover, I liked to extend my gratitude to
the university staffs for their kind help and support.
Lastly, I would like to thank the research staffs who have actively taken part in
the research and have provided valuable inputs to analyze the research data. The
constant support received from all these persons has been extremely inspiring. It
has enlightened me with the thought process of the research.
Warmest wishes,

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THE PERCEPTION AND EXPERIENCES OF AFRICAN PARENTS LIVING IN UK
AND CARING FOR A CHILD OR CHILDREN WITH DOWN SYNDROME
Abstract:
The main aim of the research was to explore the experience of African parents living
in UK regarding caring for children with Down syndrome. The main research problem is the
increase prevalence of Down syndrome in UK and issues faced by African parents residing in
UK regarding fulfilling the health needs of their children due to experience of racial
discrimination and health inequalities. As African population living in UK lag behind in
terms of active community participation, gap in their knowledge might exist regarding care
for children with Down’s syndrome. Hence, systematic review method was used to analyze
evidences related to experience of African parents caring for children with Down syndrome.
The screening and identification process helped in finding 11 relevant articles and
thematically representing findings. It gave idea about experience of African parents related
to coping with stress, negative and positive outlook towards the disease, effect on stigma on
management of Down syndrome, poor knowledge affecting care and the psychological
impact of care giving. It can be concluded that education and knowledge of African parents,
their cultural beliefs and skills of health care professional’s related to information sharing
influences experience of parents. There is a need to conduct future research on ways to
improve information sharing process to help African parents better cope with their children’s
Down Syndrome.

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THE PERCEPTION AND EXPERIENCES OF AFRICAN PARENTS LIVING IN UK
AND CARING FOR A CHILD OR CHILDREN WITH DOWN SYNDROME
Table of Contents
Chapter 1: Introduction..............................................................................................................3
1.1 Down syndrome in UK: present day scenario..................................................................3
1.2 Down syndrome and African parents...............................................................................5
1.3 Statement of Problem/ Rationale.....................................................................................6
1.4 Aims and Objectives of the research................................................................................7
1.5 Outline of the review literature........................................................................................8
1.6 Conceptual framework of the study.................................................................................9
Figure: Dissertation Structure....................................................................................................9
2. Methodology:.........................................................................................................................9
2.1 Research design..............................................................................................................10
2.2 Research question:.........................................................................................................10
2.3 Search strategy...............................................................................................................11
2.4 Inclusion and exclusion criteria.....................................................................................11
2.5 Data analysis and data extraction:..................................................................................12
2.6 Quality appraisal:...........................................................................................................13
3. Findings/ Literature review:.................................................................................................14
Psychological impact and coping challenges in African parents.............................................19
4. Discussion...........................................................................................................................21
4.1 Limitation:......................................................................................................................26
5.Conclusion:...........................................................................................................................27

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References................................................................................................................................31
Chapter 1: Introduction
According to the reports, published in the official website of the National Health
Service UK (2017), Down syndrome is a genetic disorder caused by the trisomy of
chromosome number 21. This genetic anomaly affect an individual since from early
childhood with main disease symptoms include learning disability along with certain peculiar
facial characteristics. Some of the common symptoms of Down syndrome include floppiness
of face (hypotonia), slanting eyes with upward and outward protrusion, small mouth with
tongue sticking out, single crease over the palm and below average weight and height
(National Health Service UK 2017). National Health Service UK (2017) further stated that
although children suffering from Down syndrome share sudden common physical
appearance, their rate of learning disability and intellect differs. Such that experiences of the
parents and the care givers of the children with Down syndrome also differs depending upon
the severity of the disease and from the culture from which they belong. The following
dissertation review explores the perception and experiences of African parents living in UK
and caring for a child or children with Down syndrome. This chapter introduces the
background of the review including the overview of the Down syndrome in relation to
prevalence rate in UK along with care policies of Down syndrome in UK followed by
rationale of the study, aim and objectives of the study.
1.1 Down syndrome in UK: present day scenario
According to the Down's syndrome Association (2017), one out of 100 babies born in
UK has Down syndrome. There are at least 40,000 people residing in UK with this condition.
According to Loane et al. (2013) chance of a baby developing Down syndrome is higher for

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AND CARING FOR A CHILD OR CHILDREN WITH DOWN SYNDROME
mothers who conceive late in their life that is after 30 to 32 years of age. However, the latest
trends of UK is showcasing that even the young mother are giving birth to child with Down
syndrome and the reason for this are unhealthy lifestyles and stress factor (Sotonica et al.
2016). However, at present, the rate of Down syndrome occurrence in UK is gradually
decreasing because as per the news reports published by National Health Service [NHS]
(2016), more than 90% of people in UK who are know that their child will be born with
Down syndrome have an abortion. The current NHS screening which is being offered to all
the pregnant women in UK provides an indication of the susceptibility of the baby in the
foetus to have Down's syndrome. It the foetus has the condition that there is 80% to 90% of
probability of child developing Down syndrome after birth, the test will pick up. However,
nearly 2.5% of the positive results are false positive and these babies do not have Down's
syndrome (NHS 2016).
In spite of the effective screening techniques, Wu and Morris (2013) is of the opinion
that the uncertainty of the population prevalence of people residing with Down’s syndrome in
England. The live birth prevalence of Down syndrome has only been recorded accurately
since 1989. During the past few decades, there have been significant changes both in the
domain of live birth prevalence of Down’s syndrome along with the rate of survival of people
with Down syndrome (Wu and Morris 2013). Wu and Morris (2013) highlighted that only
47% of live births with Down syndrome lived for up to 1 years of their age during 1950s and
this survival rate has increased by 90% since 1980s. Wu and Morris (2013) is of the opinion
that with the increase in the survival rate of the Down’s syndrome, the overall perception of
the parents or the care givers has changed considerably. This is because, with an increase in
age, the children who are suffering from Down syndrome get affect with autism spectrum
disorder, attention deficient hyperactive disorder and dementia (mostly during the later stages
of life). This further creates complexity in handling children with Down syndrome. This is

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THE PERCEPTION AND EXPERIENCES OF AFRICAN PARENTS LIVING IN UK
AND CARING FOR A CHILD OR CHILDREN WITH DOWN SYNDROME
because, this mental health disease arising out of chromosomal trisomy creates difficulty for
parents to handle their children but with the increase in the survival rate of the children with
Down syndrome, the associated complications also increases like appearance of associated
mental health complications and this again increases the challenge for parents (Wu and
Morris 2013). Challenge is reflected in the personal experience, familial experience,
community and societal experience (Wu and Morris 2013).
1.2 Down syndrome and African parents
According to the reports published by The Migration Observatory (2017), during the
tenure of 1993 to 2015, the foreign born population in UK doubled from 3.8 million to 8.7
million. Among this foreign born population in UK, one significant number is African
population. However, the reports published in the South African High Commission London
(2018), Africans are not welcomed in UK. Even the government law has now proposed strict
legislation against the Africans and other immigrants, demanding landlords to verify the legal
status of the tenants before renting their property (South African High Commission London
2018). Though, SA - UK Bilateral Forum agreed on an ambitious programme to strengthen
the partnership and promote the security of the Africans residing in UK, the actual scenario is
quite different. Here the requirements of UK-Africans are not met as they are subjected to
racial discrimination along with social stigmatization and thereby leading to health
inequalities (Mantovani, Pizzolati and Edge 2017).
According to the reports published by Barr, Govender and Rencken (2016), despite
the constitutional rights of the Africans residing in UK, Africans in UK are still discriminated
and this is frequently associated with the lack of proper understanding about the overall
disease condition. This lack of adequate knowledge extends makes it difficult for the African
parents to raise their child with Down syndrome (Barr, Govender and Rencken 2016). Study,
reported by John and Bevan (2012) highlighted that the UK government is reluctant is

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THE PERCEPTION AND EXPERIENCES OF AFRICAN PARENTS LIVING IN UK
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accessing the mental health and well-being of the Africans residing in UK and thus leading to
the increase cases of health inequalities and racial discrimination. It is due to this racial
discrimination and the stigmatization, the perception of the African parents in relation to
raising a child with Down syndrome remains unheard. John and Bevan (2012) further
highlighted that due to the lack of active community participation of the African population
residing in UK, there also occurs a gap of knowledge in the domain of handling sudden
complex disease and managing personal stress factors. This gap in knowledge makes overall
caring for their child with Down syndrome difficult (John and Bevan 2012).
1.3 Statement of Problem/ Rationale
Review of the available literature as discussed above revealed that there is limited
relevant evidence associated with raising a child with Down's syndrome under the African
context. Although numerous aspects like physical characteristics and health difficulties of
African children have been studied and are found to be identical with UK children with DS.
However, the interpersonal relationships of the African child with Down syndrome with their
parents have not been studied in details. Moreover, the research gap also exists in the domain
of experience or the perspectives of the African parents developed while nurturing children
with Down syndrome (John and Bevan 2012). According to Ahmed et al. (2013), research
conducted in Europe and America highlighted that the most (but not the all) families adjust
well with a child with DS and experience a quality of life that is almost similar with other
families. In contrast, there are limited literature sources about the aboriginals residing in the
developed countries. An Israeli study reported that children with DS are often considered by
the public to be unattractive, Embarrassing and frightening and this evokes sadness and
depression not only upon the individuals with Down syndrome but also among the parents of
those children (Ahmed et al. 2013). Nevertheless Ahmed et al. (2013) have argued that the
responses to mentally disabled population in low-income countries are at times

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THE PERCEPTION AND EXPERIENCES OF AFRICAN PARENTS LIVING IN UK
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misunderstood and most of the problems are due to poverty, lack of social support and lack of
adequate knowledge about the mental health complications.
Thus, proper assessment of the perspectives and the experience of the African parents
who are raising children with Down syndrome will help to access the perceived societal
values, pragmatic factors and other long-term care burden (Inglis et al. 2014). Analysis of
these factors in turn will create a future scope of research. Here the future scope of research
will mainly be based on designing special parent intervention to successfully cope up with the
challenges and compassion fatigue associated with nurturing the child with DS. In doing this
it will help to increase the overall health and well-being of the family (Siller, Hutman and
Sigman 2013). This study will also be helpful to ensure that the rehabilitative intervention is
standardised in order to enhance the quality of life both the children suffering from Down’s
syndrome and their care givers and thereby helping to increase successful experiences of both
the child with Down’s syndrome and their care givers. Delivering additional research under
the African context will further contribute towards enhancing the interventions of the
practitioners associated with the comprehensive support to the care givers.
1.4 Aims and Objectives of the research
1.4.1 Aim of the study
The aim of the study as obtained from the gaps in the research include exploration of the
perception and experiences of the African parents residing in UK and is caring for a child or
children with Down syndrome.
1.4.2 Objective of the study
1. To examine the prevalence of Down syndrome children born in UK

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2. To investigate the experiences of Africa parents in the UK, caring for a child or
children with Down syndrome. For example, personal experiences, familial
experience, community experience and societal experience.
3. To enquire into the perception of African parents living in the UK and caring for a
child or children with Down syndrome
1.5 Outline of the review literature
Chapter 1 Introduction – This is the first chapter of the study that introduces the
topic while providing necessary background information about the topic, rationale of research
along with the aims and objectives. This chapter also provides the conceptual conceptual
framework over which the study plans to explore the perceptions of the African parents
residing in UK with children or child with Down’s syndrome.
Chapter 2 Methodology – This is the second chapter of the study and it aims to
outline the methodology that will be used during the course of the research in order to
generate the reliable themes for literature review (secondary data analysis – qualitative
research).
Chapter 3 Findings/Literature Review – This chapter aims to provide information
about the subsequent findings of the study that has been generated from the analysis of the
themes in the literature review portion.
Chapter 4 Discussion and Conclusion – this is the last chapter of the study which
aims to summarize the overall findings of the study

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1.6 Conceptual framework of the study
Figure: Dissertation Structure
(Source: Author)
2. Methodology:
The research methodology is the approach that explained the steps that has been taken to
obtain answers to the research question. The methodology used for research is dependent on
research question and key objectives of research. This chapter of the research provides an
overview about the research design in relation to the research question of African parents
First chapterintroduce the topic and its significance,
research aim, objectives and questions
Second
chapter
development of an appropriate literature
review
Third chapter
developing suitable research methodolgy
Fourth
chapterdata findings and analysis
Fifth chapter
conclusions and recommendations

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perception related to caring for children with Down’s syndrome and describes methods or
strategies adopted to enhance the credibility of the work. All ethical consideration in
conducting the research has been described too.
2.1 Research design
As the research is related to interpretation of people’s (African parents) subjective
experience of a phenomenon of interest (Caring for children with Down’s syndrome),
qualitative approach is suitable to answer the research question. Qualitative research by
means of secondary research method has been chosen to get answer to the research question
(Lewis 2015). Secondary research method by means of thematic analysis have been chosen
for this research to systematically arranged findings on care experience for children with
Down’s syndrome and evaluate experience specific to a cultural group. The use of narrative
review methods also eliminates chances of biasness and improves reliability of research if
appropriate steps are taken to evaluate and extract research information (Booth, Sutton and
Papaioannou 2016). In addition, the advantage of using thematic analysis is that it promotes
flexibility in research and helps in identifying patterns across set of data sets. The process of
coding and identifying themes can help to find relation between the phenomenon of interest
and social factors (Silverman 2016). According to Alhojailan (2012), thematic review is
appropriate for studies that aim to discover about any experience using interpretation. It
allows analysis of themes with whole context. In this way, it confers accuracy and enhances
the meaning of the whole research.
2.2 Research question:
1. What is the perception or experience of African parents living in UK regarding caring for a
child or children with Down Syndrome?