CHALLENGES 

FACED BY CAREGIVERS OF CHILDREN LIVING WITH AUTISM AT

KIAMBU HOSPITAL

A RESEARCH PROPOSAL SUBMITTED TO KENYA MEDICAL TRAINING COLLEGE IN

PARTIAL FULFILMENT OF THE REQUIREMENT OF THE DIPLOMA IN
OCCUPATIONAL THERAPY.

BY
ALICE WAKESHO MOMBO
D/OT/21010/199

February 2023
DECLARATION
This is to certify this research proposal is my original work and has not been presented for a
diploma or degree award in any other university/ college. The content of this dissertation is the
product of my own work and that all the assistance received from in preparing the project and
sources have been acknowledged

Signature………………………...                            Date………………………………….

Alice Wakesho Mombo

D/OT/21010/199

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SUPERVISOR APPROVAL
This research proposal has been submitted for review by my approval as the college supervisor.

INTERNAL SUPERVISOR

Signature…………………….                                  Date……………………………………

Name: Abio Kofa

Lecture Occupational Therapy Department KMTC Mombasa

EXTERNAL SUPERVISOR 

Signature…………………………….                        Date……………………………….. 

Name: Moses Makanga

Lecturer occupational therapy department KMTC Mombasa

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DEDICATION
My special thanks go to my dad, brother, sister, my friends for their prayers, financial support;
tireless encouragement, love, care, concern and their inspiration they gave to me to complete this
project. God bless you all.

   

iii
ACKNOWLEDGEMENT 
My sincere appreciation also goes to my supervisor; Mr. Abio Kofa my lecturer, my able
lecturers Madam Noel Tanui and Madam Catherine Wairagu for their true love and mentorship
without limits or bias. Great honor to my parent Raphael Mombo. Also I tender my sincere
thanks to my brothers and sisters and my friend. My God bless you all. 

iv
Contents
DECLARATION..............................................................................................................................i
SUPERVISOR APPROVAL...........................................................................................................ii
DEDICATION...............................................................................................................................iii
ACKNOWLEDGEMENT..............................................................................................................iv
ABBREVIATIONS.......................................................................................................................vii
DEFINITION OF TERMS...........................................................................................................viii
ABSTRACT...................................................................................................................................ix
CHAPTER ONE: INTRODUCTION..............................................................................................1
1.0 Background Information........................................................................................................1
1.2 Problem Statement.................................................................................................................3
1.3 Study Justification..................................................................................................................4
1.4 Study Objectives....................................................................................................................4
1.4.1 Broad Objective...............................................................................................................4
1.4.2 Specific Objective...........................................................................................................4
1.5 Scope of Study and Limitation...............................................................................................4
CHAPTER TWO: LITERATURE REVIEW..................................................................................5
2.1 Caring for children with ASD................................................................................................5
2.2 Social Challenges faced by caregivers of children with Autism Disorder............................5
2.2.1 Stigma..............................................................................................................................5
2.2.2 Stress...............................................................................................................................6
2.2.3 Caregiving Burden..........................................................................................................6
2.3 Economic challenges faced by caregivers of children with Autism......................................7
2.3.1 Finance Burden................................................................................................................7
2.3.2 Lack of financial support by the government..................................................................8
2.3.3 Limited skilled professional in Kenya.............................................................................8
2.4 Psychological challenges faced by caregivers of children with Autism................................9
3.0 Introduction..........................................................................................................................10
3.1 Study Area............................................................................................................................10
3.2 Study Design........................................................................................................................10
3.3 Study Population..................................................................................................................10
3.3.1 Inclusion Criteria...........................................................................................................10

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 3.3.2 Exclusion Criteria..........................................................................................................10
3.4 Sampling technique..............................................................................................................10
3.5 Sample size..........................................................................................................................10
3.6 Study variables.....................................................................................................................11
3.6.1 Independent variables....................................................................................................11
3.6.2 Dependent variable........................................................................................................11
3.7 Data collection tools.............................................................................................................11
3.8 Data collection procedures...................................................................................................11
3.9 Data analysis and presentation.............................................................................................11
3.10 Pre testing/ piloting............................................................................................................12
3.11 Reliability...........................................................................................................................12
3.12 Validity...............................................................................................................................12
3.13 Ethical consideration..........................................................................................................12
REFERENCE................................................................................................................................13
APPENDIX....................................................................................................................................15
APPENDIX I: QUESTIONNAIRE...........................................................................................15
APPENDIX II: BUDGETING...................................................................................................18
APPENDIX III: WORK PLAN.................................................................................................19

vi
ABBREVIATIONS 
ASD- Autism Spectrum Disorder

DSM-5- Diagnostic and Statistical Manual of Mental Disorders, 5th Edition

KMTC- Kenya Medical Training College

OT- Occupational Therapy

WHO- World Health Organization

vii
DEFINITION OF TERMS
Caregivers- A family member or helper who regularly looks after a child or a sick, elderly,
disabled person

Community- A group of people living in the same place or having a particular characteristic
which is common

Feeding - Act of providing food to person (such as a baby) or an animal.

Mobility- The ability to move or be moved freely and easily

Neurodevelopmental disability- Are disabilities in the functioning of the brain that affect a
child’s behavior, memory or ability to learn.  

Spectrum disorder- Is a mental disorder that includes a range of linked conditions, sometimes
also extending to include singular symptoms and traits.

Stigma - A mark of disgrace associated with a particular circumstance, quality, or person

viii
ABSTRACT
The study will be carried out at Kiambu Hospital; the main aim of the study is to find out the
main challenges faced by caregivers of children living with autism such as the social challenges,
economic challenges and psychological challenges faced by care givers. A quantitative
questionnaires will be utilized to collect data from respondents. Data will be analyzed
electronically and manually, and results to be presented using graphs, tables, and charts. The
findings will be used to conclude on challenges faced by caregivers in managing children with
Autism Spectrum disorders.

ix
CHAPTER ONE: INTRODUCTION
1.0 Background Information
Autism Spectrum Disorder (ASD) is a developmental disorder with an age of onset in childhood
(under 3 years old) (Karimi P, et al 2017).  Additionally ASD is a family of neuro-developmental
disorders which is characterized by definite impairments in social interactions, abnormalities in
speech, and stereotyped pattern of behaviors (Monz BU, 2019). Although the etiology and
pathogenesis of this disorder are still a matter of speculation, the consensus in the literature is
that, autism can be caused by both genetic and environmental factors (Campisi L 2018). ASD is
a spectrum disorder, meaning that it affects individuals differently and to varying degrees. Some
individuals with ASD may have mild symptoms and are able to live independently, while others
may have severe symptoms and require ongoing support.

In 2016, there were an estimated 62 million cases of ASD worldwide, accounting for a
prevalence of 0.83% (Gialloreti LE, 2018). The prevalence of autism has been increasing in
recent years, with the Centers for Disease Control and Prevention (CDC) estimating that 1 in 54
children in the United States have been identified with ASD (Autism Spectrum Disorder 2020).
However, this burden is currently underestimated since prevalence of ASD in the African region
and other low or middle income regions is still unclear. During the same period there were about
800,000 individuals with autism in Kenya (Kamau LZ 2017). Care givers of individuals with
autism in Nigeria also reported high levels of stress and burden, as well as limited access to
information and support (Oluwole, 2016).

ASD is diagnosed clinically based on the presence of core symptoms which the current DSM-5
define, the core symptoms of ASD consist in persistent deficits in social communication and
social interaction across multiple contexts and in restricted, repetitive patterns of behavior,
interests, or activities, which lead to clinically significant impairment in social, occupational, or
other important areas of current functioning ( Gialloreti LE 2018). Children with ASD become
distressed when their surrounding environment is changed because their adaptive capabilities are
minimal.

At present, there is no cure, although there are interventions that may be effective in alleviating
some symptoms. Treatments pursued by families include a range of behavioral, psychosocial,

1
educational, medical, and complementary approaches that vary by a child's age and
developmental status (Weitlauf AS, 2014). Caring for a child with a severe form of this condition
is demanding, especially where access to services and support are inadequate in addition ASDs
often impose significant emotional and economic burden on people with these disorders and their
families (WHO. Autism Spectrum Disorders 2020).

Autism is such a developmental disorder which has a great impact on the family's adaptation and
functioning more so the mother. Despite this families with a child diagnosed of ASD have to
pass through compromising; sacrificing, stressful, and adjustment lifestyle (Upoma TF, 2020).
The testimonials of the parents of autistic children in Mali recently demonstrated how they are
financially and emotionally burdened (Sangare M 2019). Moreover the parents' children with
ASD are known to experience higher levels of parenting stress compared to the parents of
normally developing children.

2
1.2 Problem Statement 
Caregivers of children living with autism face a variety of challenges that can significantly
impact their physical, emotional, and mental well-being These challenges include: Difficulty in
providing appropriate care, many caregivers of children with autism have difficulty
understanding and responding to the unique needs of their child, which can lead to difficulties in
providing appropriate care and support (Caregiver Burden in Autism Spectrum Disorder 2017).
Caregiver also faces isolation and lack of support; Caregivers of children with autism often feel
isolated and lack the support and resources they need to effectively care for their child (The
Isolation of Parents of Children with Autism Spectrum Disorder 2014). Caregivers also faces
high levels of stress and anxiety as child with autism can be emotionally and mentally
demanding, and caregivers often report high levels of stress and anxiety as a result (Stress and
Coping in Mothers of Children with Autism Spectrum Disorder 2013). It is also very difficult to
balance work and caregiving responsibilities this is because caregivers of children with autism
often struggle to balance their caregiving responsibilities with their work and other life demands
(Work-Family Conflict and Coping Strategies among Mothers of Children with Autism
Spectrum Disorder 2014)

3
1.3 Study Justification
The study aims to review the challenges caregivers face when managing a child with Autism
Spectrum Disorder. It is designed to promote awareness of Autism Spectrum Disorder in the
community and also promote advocacy for the caregivers whose children are living with ASD.
This is because people with Autism are often subject to stigma and discrimination, including
unjust deprivation of education and opportunities to engage and participate in their community.
In addition, this study will help others people whom may want to do research concerning Autism
spectrum disorder in various institutions in their studies. 

1.4 Study Objectives

1.4.1 Broad Objective
To find out challenges faced by caregivers of children living with Autism at Kiambu Hospital

1.4.2 Specific Objective

1. To determine social challenges faced by caregivers of children living with Autism.
2. To find out economic challenges faced by caregivers of   children living with Autism.
3. To determine psychological challenges faced by caregivers of children living with
autism.

1.5 Scope of Study and Limitation

The purpose of this study is to find out the challenges caregivers face in managing a child with
Autism Spectrum Disorders in Kiambu region in a span of 3 months.
The study will be limited to time allocated and finances.

4
CHAPTER TWO: LITERATURE REVIEW
2.1 Caring for children with ASD.
Caregiving can be understood as a multifaceted activity that can be done at home, institution or
community by individuals who may be trained or not trained. Some of the responsibilities of
caregivers include physical care, such as bathing, dressing and feeding. It also involves provision
of emotional and financial support and handling of house chores among others. Caregiving is
lifetime need that begins at birth and ends with death.  Women are the ones who are mostly
involved in unpaid caregiving in the family and outside their homes as paid home workers. 

Caring for children with severe form of the condition is demanding, especially where the access
to services and support is inadequate. ASDs often impose significant emotional and economic
burden on people with those disorders and their families. Autism is a neurodevelopmental
disability which has a great impact on the family’s adaptation and functioning more so mother.
(Upoma TF, et al, 2020) Families with a child diagnosed of ASD have to pass through
compromising; sacrificing, stressful and adjusted lifestyle. (Anyanwu Jl, et al, 2018) The
testimonials of the parents of autistic children in Mali, recently demonstrated how they are
financially and emotionally burdened. (Sangare M, et al, 2019) Moreover the parents’ children
with ASD are known to experience high levels of parenting stress compared to the parent of
normally developing children.

2.2 Social Challenges faced by caregivers of children with Autism Disorder.

2.2.1 Stigma
Stigma is one of the most difficult aspects of public encounters experienced by parents of
children with a disability. Stigma is a social construct defined as a mark of shame or discredit,
characterized by guilty or disgrace. Parents of children with autism often experiences
stereotyping and negative public reactions. These behaviors may adversely impact on family
functions.

(Gona JK, et al, 2017) study in Kenyan coastal region demonstrated how caregivers are
stigmatized; they are banned from church services for having a child with ASD. According to
(Cloete LG, et al, 2019) stigma and rejection has sometimes resulted into family break-ups as the
child mother is divorced. Collaborating these findings, in an Ethiopia study, families with an

5
ASD child face similar stigma as they are denied to rent houses (Tekola B, et al, 2016) explained
that the property owners believed that those children with ASD would bring a curse to them and
their families. (Tilahun D, et al, 2016) This review notes that caregiver is stigmatized by the
community and friends through rejection. Some further face blames of having brought diseases
to the community. Some communities have associated the occurrence of ASD to witchcraft,
curses, and omen.

2.2.2 Stress
Stress of living with a child with autism can affect the psychological and emotional wellbeing of
parents and generates conflicts between them. A child with ASD presents many emotional, social
and economic challenges to the family. Caregivers spend a lot of energy balancing the needs of
family and those of children living with ASD. In addition, (Ambikile and Outwater 2012)
reported that mothers as caregivers of children with ASD have poor mental health than the
general population. Stress of living with autism child can affect psychological and emotional
wellbeing of parents and generate conflicts between them. This aspect is worsened by poor
prognosis of autism. In addition, parents of children with experience increased personal stress,
problems in interpersonal relationships and increased isolation. Factors that contribute to
elevated stress in parents of children with autism include the child’s behavioral problems, lack of
adequate professional support, and social altitude towards individuals with autism.

2.2.3 Caregiving Burden

The entire process involved in caring for children with ASDs is not only challenging, but affect
family life in a great deal. Caregivers of children with ASD provide assistance with activities of
daily living, emotional support, and dealing with incontinence, feeding and mobility
(Amirkhanyan and Wolf, 2013). This places heavy burden of caregivers because they must
sacrifice their time to ensure the child is made comfortable. Additionally, caregivers are forced to
wake up earlier than usual so that they complete the tasks they have to undertake relating to
caregiving just before they embark on the other family chores. Caregiving has been associated
with certain demographic and other caregiver characteristics that either directly or indirectly
increases the burden of caregiving. The main causes of psychological stress have been
conceptualized as adjustment to change, daily hassles, and role strains (Shah, Wadoo and Latoo,

6
2010).  However, it is thought that personality factors are the most powerful predictors of
caregiver’s well-being, psychological distress, and overall quality of life. 

(Cloete LG, et al, 2019) study demonstrated that the ASD children were reported to be chaotic by
their caregivers. Additionally, the caregivers noted that the ASD children have occurrences of
delayed milestones; this could imply that, they needed more close monitoring compared to their
counterparts who were normal. (Gona JK, et al, 2017) Associated phenomena with ASD children
include mental retardation, emotional indifference, hyperactivity, aggression, self-injury, and
repetitive behaviors such as body rocking or hand flapping. (Park HR, et al, 2016). The ASD
children may have restricted fixated interests, which are abnormal in intensity or focus. (Campisi
L, et al, 2018) Some parents have disregarded their own children due to the caregiving burden in
Ethiopia. (Tekola B, et al, 2016) In Bangladesh, mothers reported that their most challenging part
of raising autistic child was to manage their hyperactivity and social interaction. (Upoma TF, et
al, 2020) Similar trends were noted in Jamaica. (Mann AR, et al, 2013) The results of the present
review imply that the caregiving or the parenting role to ASD children is challenging. This is
attributed mostly to the unique clinical manifestations of the ASD children.

2.3 Economic challenges faced by caregivers of children with Autism.

2.3.1 Finance Burden
Caring for the children suffering with autistic spectrum disorder is changing and affects the life
of the care givers. Psychological distress, depression, anxiety, and the other mental or physical
health problems are the common symptoms that the caregivers face while caring for the children
with autistic spectrum disorder.  

Previous study noted that guardians travel over 100 miles from remote parts of the country for
monthly clinic to a national hospital. This is because almost all the expert professionals are
largely available within the confines of big cities (Kamau LZ, et al, 2017). Furthermore, results
of the present study noted that, caregivers’ financial crisis state is worsened by their low
socioeconomic status   in the society. (Chebeda-Barthe J, et al, 2019) noted that majority of these
children with disabilities in Kenya, live in rural areas. Another study In Nairobi reveled that
majority caregivers had little support from the government.  For the families with poor
knowledge about the disease, they keep seeking care from the traditional healers with no much
improvement in their ASD child. (Gona JK, et al, 2017) Elsewhere in Jamaica, similar trends of

7
challenge were noted. (Mann AR, et al, 2013) In majority of low and middle-income settings,
access to support and rehabilitation services for children with disabilities are lacking. In Ethiopia
caregiver noted that they are asked to triple fee (compared to normal school fee) in special
schools for their ASD child. (Tilahum D, et al, 2016) Similarly in Nigeria center of learning for
the children with autism are mostly in cities such as Lagos, Abuja, and Port Harcourt. (Anyanwu
Jl, et al, 2018) The analyses of the present study reveal that majority caregivers whose children
are diagnosed of ASD are financially burdened. They may be attributed to their indirect and
direct costs of care of ASD

2.3.2 Lack of financial support by the government

In Kenya there are few studies available in focusing on the challenges faced by caregivers of
children with autism spectrum disorder in accessing earlier and detection plus other supportive
services in Kenya. In Kenya, like the rest of the developing world, developmental disorders such
as ASD have attracted little attention from the government and other stakeholders regarding
supportive services for the affected individuals (Al-Farsi YM, et al, 2013). These discrepancies
have hampered the effort to address ASD-related needs and servicers. The WHO (2013) and data
from those countries which are able to capture data of ASD, indicate that one in every one
hundred and sixty-two children has ASD and subsequence disabilities. On the country, the
Kenyan government and other stakeholders have taken little initiative to establish the prevalence
and the impact of professional to support children with ASD and their families. Children living
with disabilities in Kenya comprises approximately 1% of Kenyan’s population of over 40
million people comprises of children living with disabilities (2008). 

2.3.3 Limited skilled professional in Kenya

Children with ASD and caregivers are vulnerable group who often experience health inequalities
and significant barrier to accessing crucial services compared with the general population. In
addition, the lack of diagnostic services hinders early intervention (Seif EA, et al, 2008).
Consequently, caregivers of children diagnosed with autism spectrum disorder receive little
support in the form of information concerning the cause and management of ASD. Lack of
professionals help from the government further hampers services development and support
(Brown HK, et al, 2012)

8
2.4 Psychological challenges faced by caregivers of children with Autism.
Previous studies have reported a plethora of psychological problems affecting caregivers of
children with ASD, ranging from stress, depression, anxiety, restrictions of activities strain in
marital relationships, and diminished physical health. Parents who are primary cares of a child
affected with autism spectrum disorder (ASD) are often found to experience high levels of stress
and poorer physical health when compared with parents of children of typical development (Lee
G.K., et al, 2009), parents of children diagnosed with other disabilities (Pisula E, et al, 2007), or
when compared to the general population (Lovell B, et al, 2012). The parenting stress is
experienced by parents of a child affected with ASD therefore appears to pose a great risk to the
parents’ psychological and health-related quality of life. “Caregiver burnout “and “caregiver
burden” are additional terms often used to describe a state of physical, emotional, and mental
exhaustion that may be accompanied by a change in attitude, from appositive and caring to
negative and unconcerned, as a consequence of attending to the ongoing demands inherent in
caring for a dependent individual.

9
CHAPTER THREE: RESEARCH METHODOLOGY
3.0 Introduction
This chapter deals with the procedures and methods that will be used to carry out the study, study
area, study design, target population, sample technique, sample size, study variable, data
collection tools, data collection procedures, data analysis presentation and ethical consideration.

3.1 Study Area

The study will be carried out at Kiambu Hospital.

3.2 Study Design

The study will be descriptive in nature where quantitative data will be collected 

3.3 Study Population

The study targets caregivers of children with autism disorder attending Occupational Therapy
outpatient services at Kiambu Hospital.

3.3.1 Inclusion Criteria

All caregivers of children living with autism attending Kiambu hospital

3.3.2 Exclusion Criteria

The exclusion criteria involved all caregivers without children living with autism attending
Kiambu hospital and those who are unwilling to take part.

3.4 Sampling technique

Purposive sampling techniques will be used whereby the caregivers of the children with autism
disorder attending Occupational Therapy outpatient services will be issued with questionnaires.

3.5 Sample size

A desired sample size of 20 respondents will be targeted.  A sample size will be determined
using Fischer method (1990) as elaborated below

N=ZPQ/d2

Where n = desired sample size

P = proportion of population with characteristic of interest 0.50, q=1-p, d= degree of accuracy

Required, usually set at 0.05 0r 0.02

10
Hence;

Nf= 384/ (1+384/20)

384/20= 26

1+26= 27

384/27

=14.4

=14 + 10%

=20

Therefore, the total number of respondents will be 20

3.6 Study variables

3.6.1 Independent variables
Challenges

3.6.2 Dependent variable

Caregivers of Children with autism

3.7 Data collection tools

Both structured and unstructured questionnaires will be used by the respondents who will be able
to read and write. Interviewer guided interviews.

3.8 Data collection procedures

I will provide questionnaires to the caregivers in the inpatient department receiving treatment
and ask them to read, tick and respondents will be given a chance to inquire more information
where they will not find it clear for them.

3.9 Data analysis and presentation

Data collection will be analyzed using scientific calculators and relevant computer packages and
will be presented in form of descriptive statistics such as tables, graphs and pie- charts.

11
3.10 Pre testing/ piloting
The pre testing of this study will be carried out at Kiambu Hospital where by the caregivers of
children with autism disorder will be given questionnaires as a method of collecting data.

3.11 Reliability
According to Golafshani (2013), reliability is the proportion of variance attribute to the time
measurement of a reliable and estimates the consistency of such measurement overtime from
research instrument. A pilot study will be carried out at using 5% of the respondents and a
questionnaire will be used as a pretest.

3.12 Validity
Preliminary data will be collected during study which will determine the validity of the
questionnaires. I will ensure that, the questions will be brief which will ensure that, the
respondents will provide the adequate feedback.

3.13 Ethical consideration

The Research will be carried out after permission from National Commission for science
Technology and innovation (NACOSTI) through the principal Kenya Medical Training College
Mombasa Campus, the Department of Occupational therapy and the director of Kisumu level (v)
Hospital, granting the permission to use data in their facility and also to execute pre formed
questionnaire.

12
REFERENCE
Ambikile JS, Outwater A (2012). Challenges for caring for a child with mental disorders:
Experiences and views of caregivers attending the outpatient clinics at Muhimbili National
Hospital, Dar es Salaam- Tanzania. Child and Adolescent Psychiatry and mental Health.

Anyanwu JI, Obiyo NO, Ugwuanyi LT, Adikwu V, Ubah Jc, Obata MI, et al (2018). Age and
birth order as factors for parental stress of children with autism and coping strategies.

Autism Spectrum Disorder, (2020). Centers for Disease Control and Prevention.
Brown HK, Ouellette-Kuntz H, Hunter D, Kelly E, and Cobigo V (2012) Unmet needs of
families of school-aged children with an autism spectrum disorder.

Campisi L, Imran N, Nazeer A, Skokauskas N(2018).  Autism spectrum disorder. 

Caregiver Burden in Autism Spectrum Disorder (2017) A Review of the Literature." Journal of
Autism and Developmental Disorders, Springer,

Cloete LG, Obaigwa EO (2019). Lived experience of caregivers of children autism spectrum
disorder in Kenya.

Gona JK, Newton CR, Rimba KK, Mapenzi R, Kihara M, Vijver FV, et al (2017). challenges
and copping with strategies of parents of children with autism in Kenya coast.

Kamau LZ (2017). Autism spectrum disorders (ASD) in Kenya. Barriers encountered in

diagnosis, treatment and management. J Res Pharm Sci. 

Karimi P, Kamali E, Mousavi SM, Karahmadi M (2017). Environmental factors influencing the
risk of autism. J Res Med Sci. 

Monz BU, Houghton R, Law K, Loss G (2019). Treatment patterns in children with autism in the
United States. Autism Res. 

Oluwole, O. B., Adebayo, T. A., & Adebayo, B. A. (2016). Caregiver burden and coping
strategies of mothers of children with autism in Nigeria. Journal of Child Neurology

13
Sangare M, Dembele B, Toure A, Diakite S, Awandare G, Kouyate M, et al (2019). Autism
seminary for public engagement: Evaluation of knowledge and attitudes of traditional medical
practitioners in Mali. AAS Open Res. 

Springer (2013). Stress and Coping in Mothers of Children with Autism Spectrum Disorder
Journal of Autism and Developmental Disorders

The Isolation of Parents of Children with Autism Spectrum Disorder (2014) A Qualitative
Study." Journal of Child Neurology, SAGE Publications,

Upoma TF, Moonajilin S, Rahman E, Ferdous MZ (2020). Mothers initial challenges having
children with autism spectrum disorders in Bangladesh. Bangladesh J Med Sci 

Weitlauf AS, McPheeters ML, Peters B, Sathe N, Travis R (2014). Therapies for children with
autism spectrum disorder: Behavioral interventions update. Healthc Res Qual. 

WHO. Autism Spectrum Disorders (2020). Geneva: World Health Organization;

Springer (2014). Work-Family Conflict and Coping Strategies among Mothers of Children with
Autism Spectrum Disorder." Journal of Autism and Developmental Disorders,

14
APPENDIX
APPENDIX I: QUESTIONNAIRE
I am an occupational therapy student at Kenya medical training college Mombasa campus. I am
carrying out a research on the negative impact faced by caregiver of children with autism
attending Kiambu hospital. In addition the study is a partial requirement in my qualification for
the award of diploma in occupational therapy. The information provided will be confidential.
The information will be only used for research purpose. I have identified you as one of my
respondents; to make the study a success your response will be highly appreciated.

INSTRUCTIONS

 Use a tick ( √ ) or a cross (X) for the desired choice

 In some questions, please fill the blank space
 Do not indicate your name
 In some questions you can choose more than one answer where applicable

1) What is your age bracket?

A) 15-25 years [ ]

b) 26-35 years [ ]

C) 36-35 years [ ]

d) Above [ ]

2) Indicate your gender

a) Male [ ]

b) Female [ ]

3) What is your marital status?

a) Married [ ]

b) Single [ ]

15
 c) Widow/widower [ ]
4) What is your occupation?

5) What your relationship with the child?

a) Mother [ ]
b) Father [ ]
c) Others (state) [ ]
6) Educational level
a) Primary level [ ]
b) Secondary level [ ]
c) College/University level [ ]
d) Other [ ]
7) When did you start noticing characteristics of Autism Spectrum Disorder on the child?
a) Between 12months -18 months [ ]
b) Between 18months -24 months [ ]
c) Between 2.5years -3 years [ ]
8) What health services did you seek?
a) Rehabilitative [ ]
b) Counseling [ ]
c) Traditional means [ ]
d) No services [ ]
e) If any other, specify
9) Are you able to pay for services offered?
a) Yes [ ]
b) No [ ]
c) Sometimes [ ]
d) Not applicable [ ]
10) Do you find it discouraging when seeking and following up health services for the child?
a) Yes [ ]
b) No [ ]

16
 If yes please state reasons
11) Which type of medical insurance covers you?
a) Private insurance [ ]
b) NHIF [ ]
c) If private, state the covers name [ ]
12) How far is it from your home to where you seek health services?
a) 1km [ ]
b) 3km [ ]
c) 5km [ ]
d) More than 5km [ ]
e) Less than 1km [ ]
13) Do you encounter any challenges while seeking transportation to the health center?
a) Yes [ ]
b) No [ ]
If yes, explain
14) Is it easy to navigate to the hospital through the means of transport?
a) Yes [ ]
b) No [ ]
If no, explain
12 Are there any beliefs about ASD in your community?
a) Yes [ ]
b) No [ ]
If yes, explain
13) Does your family experience any discrimination from the community?
a) Yes [ ]
b) No [ ]
If yes, explain
14) Do you receive any support from your family members or any members of the
community?
a) Yes [ ]
b) No [ ]

17
 If no explain
APPENDIX II: BUDGETING
Items Quantity Approximate Total amount
amount per item (ksh)
(ksh)
Printing 34 pages 10 340
Internet services 5mbps 1-month 2500 2500
package
Flash disc 1 (4gb) 450 450
Foolscaps 1 realm 350 350
Stapler/ pins I piece 375 375
Typing 34 pages 5 170
Binding 2 copies 150 300
Photocopying 34 pages 5 170
Accommodation 3 months 3500 10,500
Miscellaneous 2500 2500
Total 17,655

18
APPENDIX III: WORK PLAN
TIME September October November December January
ACTIVITY 2022 2022 2022 2022 2023
Topic
identification
and
Approval
Research
proposal:
Chapter 1
Research
proposal:
Literature
review
Chapter 3
Proposal
printing,
submission
and defense

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