PSYCHOLOGICAL DISTRESS, COPING MECHANISMS AND SUPPORT

SYSTEMS FOR THE CAREGIVERS OF CHILDREN LIVING WITH CEREBRAL

PALSY IN NAIROBI COUNTY

BY

DORCAS NASIMIYU KANYI

639811

A Thesis Submitted to the School of Humanities and Social Sciences in partial

fulfillment of the Requirement for the Master’s Degree in Marriage and Family

Therapy (MFT)

UNITED STATES INTERNATIONAL UNIVERSITY- AFRICA

FALL 2021
 STUDENT’S DECLARATION

I, the undersigned, declare that this is my original work and has not been submitted to any

other institution or University other than the United States International University- Africa in

Nairobi for academic credit.

Signed____________________________ Date_________________________

Dorcas Nasimiyu Kanyi (639811)

This proposal has been presented for examination with my approval as the appointed

supervisor.

Signed______________________________ Date_________________________

Dr. Josephine Arasa

Signed______________________________ Date________________________

Dean, School of Humanities and Social Sciences

ii
 COPYRIGHT PAGE

All rights reserved. No part of this thesis report may be photocopied, recorded or otherwise

reproduced, stored in retrieval system or transmitted in any electronic or mechanical means

without prior permission from USIU-Africa or the author.

Dorcas Kanyi © 2021

iii
 ABSTRACT

Caregiver burden is composed of multiple physical, psychological, social, and financial

stressors associated with caregiving when dealing with children with cerebral palsy. The

primary objectives of the study were to explore psychological distress experienced by the

caregivers of children living with cerebral palsy, identify their coping mechanisms and the

existing support systems. The study adopted a descriptive research design and convenience

sampling was used to sample a total of 73 caregivers from Gertrude’s children hospital in

Nairobi County Kenya. The mean age of children was 8.2 years. Kessler psychological

distress scale, COPE inventory instrument and interpersonal support evaluation questionnaire

were used to collect data. The results levels of psychological distress established that 74% of

the caregiver severe levels of psychological with a mean of 36.54 (SD = 8.72). On the support

systems for the caregivers, the results showed that highest supporting system was the

appraisal support with a mean of 7.99 (SD = 2.25) followed belonging support system with a

mean of 6.84 (SD = 1.86) and tangible with a mean of 6.73 (SD = 2.01) which showed low

levels of support system. Generally, the results showed that the respondents had low levels of

supporting systems. On coping mechanism, the study established that majority 86.3% of the

respondents had approach coping mechanism which implied that most of the caregivers had

active coping, positive reframing, planning, acceptance, seeking emotional support, and

seeking informational support. This study recommended that Gertrude’s Children Hospital

should engage marriage and family therapists in helping caregivers with psychological

support/intervention in order to reduce cases of psychological distress. The hospital should

carry out periodic workshops and trainings for caregivers in order to sensitize and create

awareness on Cerebral Palsy (CP).

iv
 ACKNOWLEDGEMENTS

I would like to thank my thesis supervisor, Dr. Josephine Arasa, for her unwavering support.

I have no doubt that I owe my success to her guidance, encouragement, and dedication. I

count myself fortunate to have had her experience and wisdom shaping me into a confident

and upcoming scholar. Her presence as my mentor has been a gift for which I am so very

grateful. I also would like to thank Dr. Michelle Karume for demonstrating how hard one can

work while always remaining generous with her time, kindness, and compassion she offered.

I also would like to thank my husband, Professor Wamuyu for all his love, support and

encouragement. I have battled with health issues the longest time, but he was present all the

time, giving me hope amidst adversity. Last but certainly not least, thank you to my friend

and colleague Onga’re George who has remained an encouraging colleague, very supportive

and authentic with me.

v
 DEDICATIONS

To all the brave mothers who have dedicated their time and resources in order to provide a

more comfortable and fulfilling life to children living with cerebral palsy.

vi
 TABLE OF CONTENTS

STUDENT’S DECLARATION ............................................................................................ ii

COPYRIGHT PAGE ........................................................................................................... iii
ABSTRACT .......................................................................................................................... iv
ACKNOWLEDGEMENTS .................................................................................................. v
DEDICATIONS .................................................................................................................... vi
LIST OF TABLES ................................................................................................................ ix
LIST OF FIGURES ............................................................................................................... x
ABBREVIATIONS............................................................................................................... xi
CHAPTER ONE .................................................................................................................... 1
INTRODUCTION AND BACKGROUND OF THE STUDY........................................... 1
1.1. Introduction ............................................................................................................... 1
1.2. Background to the Study........................................................................................... 1
1.3. Statement of the Problem .......................................................................................... 7
1.4. Purpose of the Study ................................................................................................. 9
1.5. Objectives of the Study ............................................................................................. 9
1.6. Research Questions ................................................................................................... 9
1.7. Significance of the Study .......................................................................................... 9
1.8. Limitations and Delimitations ................................................................................ 11
1.9. Scope of the Study .................................................................................................. 11
1.10. Justification of the Study ..................................................................................... 11
1.11. Operational Definition of Terms ......................................................................... 12
1.12. Chapter Summary................................................................................................ 13
CHAPTER TWO ................................................................................................................. 15
LITERATURE REVIEW ................................................................................................... 15
2.1 Introduction ............................................................................................................. 15
2.2 Theoretical Framework ........................................................................................... 15
2.3 General Review....................................................................................................... 16
2.4 Level of Psychological Distress among Caregivers ............................................... 18
2.5 Support Systems of Care Givers ............................................................................. 26
2.6 Caregivers Coping Mechanisms ............................................................................. 29
2.7 Conceptual Framework ........................................................................................... 39
2.8 Chapter Summary ................................................................................................... 40
CHAPTER THREE............................................................................................................. 41
RESEARCH METHODOLOGY ....................................................................................... 41

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 3.1 Introduction ............................................................................................................. 41
3.2 Research Design ..................................................................................................... 41
3.3 Site of Study............................................................................................................ 41
3.4 Population ............................................................................................................... 42
3.5 Sampling Design ..................................................................................................... 42
3.6 Data Collection Method .......................................................................................... 44
3.7 Research Procedures ............................................................................................... 45
3.8 Data Analysis Method ............................................................................................ 47
3.9 Ethical Considerations ............................................................................................ 48
3.10 Chapter Summary ................................................................................................... 49
CHAPTER FOUR ............................................................................................................... 50
DATA PRESENTATION AND ANALYSIS .................................................................... 50
4.1 Introduction ............................................................................................................. 50
4.2 General Information ................................................................................................ 50
4.3 Levels of Psychological Distress that Caregiver Experiences ................................ 52
4.4 Support Systems Available to the Caregiver .......................................................... 52
4.5 Coping Mechanisms by Caregivers. ....................................................................... 54
4.6 Chapter Summary ................................................................................................... 55
CHAPTER FIVE ................................................................................................................. 56
SUMMARY, DISCUSSION, CONCLUSION, AND RECOMMENDATIONS............ 56
5.1 Introduction ............................................................................................................. 56
5.2 Summary of the Results .......................................................................................... 56
5.3 Discussion of Results .............................................................................................. 57
5.4 Conclusions ............................................................................................................. 60
5.5 Recommendations ................................................................................................... 61
REFERENCES .................................................................................................................... 63
APPENDICES...................................................................................................................... 71
APPENDIX I: PARTICIPANT CONSENT FORM ......................................................... 71
APPENDIX II: PARTICIPANT QUESTIONNAIRE ....................................................... 72
APPENDIX III: NACOSTI PERMIT................................................................................ 77
APPENDIX IV: IRB APPROVAL.................................................................................... 78

viii
 LIST OF TABLES

Table 4. 1 Demographic Information ............................................................................... 51

Table 4. 2 Levels of Psychological Distress ..................................................................... 52
Table 4. 3 Means of Support System Subscales ............................................................... 53
Table 4. 4 Subscales Levels of Support Systems ............................................................. 53
Table 4. 5 Coping Mechanism .......................................................................................... 54

ix
 LIST OF FIGURES

Figure 2. 1 Conce ptual Framework ................................................................................ 39

x
 ABBREVIATIONS

CP Cerebral Palsy

CPSK Cerebral Palsy Society of Kenya

NACOSTI National commission for science, technology and innovation

USIU-A United States International University-Africa

ZCBI Zarit Caregiver Burden Interview

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 CHAPTER ONE

INTRODUCTION AND BACKGROUND OF THE STUDY

1.1. Introduction

This chapter introduces the research area and the rationale for the present study. The

chapter contains the background to the study, statement of the problem, objectives, and the

research questions. The chapter subsequently describes the significance and justification of

the study, its limitations, scope, operational definition of terms, and finally chapter

summary.

1.2. Background to the Study

Psychological distress is “a state of emotional suffering associated with stressors and

demands that are difficult to cope with in daily life” (Arvidsdotte, Marklund , Kylen, Taft, &

Ekman , 2016, p. 687). Psychological distress has been associated with the caregiving burden

(Lam, Ng, & Tori, 2013). Literature has established that caregivers experience burden when

caring for family members and loved ones (Liu, Heffernan, & Tan, 2020). According to

Mirowsky and Ross (2002), suffering psychological distress and burden during care, not only

affect the quality of life and health of the caregiver, but will also affect their productivity as

an individual, and their ability to provide quality care for the ill relative, therefore worsening

the health of the mentally ill relative and decreasing the likelihood of their possible recovery

or improved health. Using Kessler psychological distress scale (K10) to measure

psychological distress and the moderating effects of social support among 267,041 carers from

New South Wales, Australia, George, Kecmanovic, Meade and Kolt (2020) found that full

time caregivers had higher psychological distress compared to part time caregivers. George,

Kecmanovic, Meade and Kolt (2020) indicated that about one-third of caregivers have been

shown to experience psychological distress associated with other mental health problems as

compared with the general population. Moreover, they reported that the level of psychological

1
distress with caregiving varies, and this can be influenced by the level of care required, the

physical or cognitive impairment experienced by the care recipient, or the duration of the

caring relationship.

A caregiver is an individual who belongs to a patient’s informal support system and is

responsible for the patient, and who commits most of his or her time to that task without

receiving any economic retribution (Nana & Ndukwu , 2019). Caregiver burden is defined as,

“the strain or load borne by a person who cares for a chronically ill, disabled, or elderly family

member" (Swezey, 2020, p. 1; Liu, Heffernan, & Tan, 2020, p. 439). It is the physical, mental,

social, and financial impact of caring for someone who is ill or who has functional

impairments (Fauth, 2008). Caregiver burden encompasses all of the challenges felt by

caregivers with respect to their physical and emotional well-being, family relations, and work

and financial status (Sherman, Burgio, & Kowalkowski, 2008). Caregiver burden is also as a

result of multiple physical, psychological, social, and financial stressors associated with

caregiving (Lindenberger & Meier, 2013). An important aspect of caregiver’s burden is the

demands of caring. Different studies have shown that caring demands can directly contribute

to both the caregiver’s psychological well-being and physical health (Han, Diwan, Chang,

Comfort, & Forward, 2017; Lam, Ng, & Tori, 2013; Raina, et al., 2005). Caregivers have been

found to experience psychological disorders such as depression, anxiety, anger and hostility

(Vitaliano, et al., 2002). Predictors of the caregiving burden have also been identified as the

degree of disability, depression and self-efficacy (Marrón, et al., 2013).

Cerebral Palsy (CP) is “a chronic condition defined as a set of functional limitations

due to alterations in the development of the central nervous system” (Marrón, et al., 2013, p.

768). Although motor malfunction is the cardinal limitation of CP, “the severity of disability

is also determined by the presence of sensory, cognitive and social impairments” (Marrón, et

al., 2013, p. 768). This, however, then leads to significant limitations in self-care functions

2
related to food, personal hygiene and mobility. For these reasons, CP can be taken as a

prototype of childhood disability (Marrón, et al., 2013). The limitations of those affected by

the CP can result in demands and requirements for long-term care, which can greatly exceed

the normal requirements associated with the early stages of child development. “Impaired

motor function is the hallmark of CP” (Gorter, Noorduyn, Obeid, & Timmons, 2012, p. 1),

although many children “with the disorder also experience sensory, communicative, and

intellectual impairments and may have complex limitations in self-care functions” (Raina, et

al., 2005, p. 626).

Caregiving is a normal part of being the parent of a young child, “but this role takes

on an entirely different significance when a child experiences functional limitations and

possible long-term dependence” (Raina, et al., 2005, p. 626; Olawale, Deih, & Yaadar, 2013).

While care is part of parenting, it “can often generate a significant burden when the

requirements are excessive and long-lasting” (Marrón, et al., 2013, p. 768). This excessive

responsibility may adversely affect the physical and psychological health of caregivers,

affecting their social, cultural, and professional lives and possibly reducing their quality of

life. The empirical evidence suggests that there is a wide variation in how caregivers adapt to

the specific demands of care, which has led to a large number of researchers seeking to

ascertain the determinants of burden and stress among caregivers (Marrón, et al., 2013).

Parents of a child with CP often experience higher levels of stress than other parents

who have a normal child. Coping with the psychological effects of CP could be very difficult

because children with CP need long-term care. The impact of CP on parenting stress is usually

influenced by factors such as increased caregiving demands (Olawale, Deih, & Yaadar, 2013).

Attitudes of people towards a child with CP and the family also add up to the psychological

trauma; hence, the attitudes and stigmatization could be very disturbing. A child with CP can

be deprived of educational opportunities, recreational facilities, and opportunities to develop

3
friendships. Typically, in the African society, conditions such as CP are normally associated

with witchcraft and sorcery; hence most families perceive it as a punishment from “gods” for

a wrongful act committed by a family member, most especially the mother who eventually

ends up as the caregiver. Normally the blame is shifted to the women, thereby initiating and

causing familial and marital breakdown. Quality of life can be significantly lower in caregivers

of a child with CP than in that of a normal child. The caregiver may have to experience one

problem or another as a result of having a child with CP. The problems include loss of job,

lack of concentration at work, loss of family joy, and derangement of family income, all of

which might contribute to a lower quality of life of the caregiver (Olawale, Deih, & Yaadar,

2013) .

Therefore, it is important to note that a child experiencing this kind of challenge could

be ill, or not ill (well) at given times and continue to function normally. Nevertheless, the child

would always be living with these conditions or challenges of illness or a disability for as long

as they are alive. The family members of a child with this severe illness are subjected to

stigmatization. Therefore, appropriate interventions targeting the general public and the

family members, need to be developed to reduce the harmful influence associated with family

stigma (Yin, Li, & Chenxi, 2019). The responsibilities of caregiving added to the routine

pressure of maintaining a family of professional life can naturally lead to stress. This stress in

return creates a ripple effect on the health and well-being of not only the caregiver, but

everyone from family members to friends and co-workers (Han, Diwan, Chang, Comfort, &

Forward, 2017).

Most children enjoy healthy childhoods with little need for specialized health care

services. However, some children experience difficulties in early childhood and require access

to and utilization of considerable health care resources over time. Although impaired motor

function is the hallmark of the cerebral palsy (CP) syndromes, many children with this

4
development disorder also experience sensory, communicative, and intellectual impairments

and may have complex limitations in self-care functions. Although caregiving is a normal part

of being the parent of a young child, this role takes on an entirely different significance when

a child experiences functional limitations and possible long-term dependence. One of the main

challenges for parents is to manage their child's chronic health problems effectively and juggle

this role with the requirements of everyday living. Consequently, the task of caring for a child

with complex disabilities at home might be somewhat daunting for caregivers (Raina, et al.,

2005).

Raina, et al., 2005 developed a stress process model and applied structural equation

modeling with data from a large cohort of caregivers of children with CP in Canada. The

design allowed the examination of the direct and indirect relationships between a child's

health, behavior and functional status, caregiver characteristics, social supports, and family

functioning and the outcomes of caregivers' physical and psychological health. Families (n =

468) of children with CP were recruited from 19 regional children's rehabilitation centers that

provide outpatient disability management and supports in Ontario, Canada (Raina, et al.,

2005).

Data on demographic variables and caregivers’ psychological health were assessed

using standardized, self-completed parent questionnaires as well as a face-to-face home

interview. The results showed the most important predictors of caregivers' well-being were

child behavior, caregiving demands, and family function. A higher level of behavior problems

was associated with lower levels of both psychological (beta = -.22) of the caregivers, whereas

fewer child behavior problems were associated with higher self-perception (beta = -.37) and

a greater ability to manage stress (beta = -.18). Self-perception and stress management were

significant direct predictors of caregivers' psychological health but did not directly influence

their physical well-being. Caregivers' higher self-esteem and sense of mastery over the

5
caregiving situation predicted better psychological health (beta = .23). The use of more stress

management strategies was also associated with better psychological health of caregivers (beta

= .11). Gross income (beta = .08) and social support (beta = .06) had indirect overall effects

only on psychological health outcome, whereas self-perception (beta = .22), stress

management (beta = .09), gross income (beta = .07), and social support (beta = .06. Caregiving

demands contributed directly to both the psychological and the physical health of the

caregivers. The practical day-to-day needs of the child created challenges for parents. The

influence of social support provided by extended family, friends, and neighbors on health

outcomes was secondary to that of the immediate family working closely together (Raina, et

al., 2005).

A qualitative study done in Zambia utilized a phenomenological approach with open-

ended items. This method that was employed in the study attempted to gain a broader

understanding of the caregivers’ perspective when caring for a child with CP. The study was

carried out at the University Teaching Hospital (UTH), Department of Pediatrics; thus, the

center was instituted to rehabilitate children with disabilities the most common being CP and

other related conditions. UTH is located in the capital in Lusaka and it is the biggest referral

hospital in Zambia offering health services at tertiary level. An interview questionnaire was

adapted by the researcher from validated questions from literature to gather social

demographic information of parents/caregivers. A total of 25 respondents participated in the

study of which 8% (n = 2) were males and 92% (n = 23) were females. The median age of

respondents was 33.56 with ages ranging from 27 to 50 years (Chiluba & Moyo, 2017).

The Zarit Caregiver Burden Interview (ZBI) is an assessment tool for evaluating the

caregiver burden that is widely used around the world. The tool helps to support interventions

and actions proposed by health professionals aimed at reducing the caregiver burden, thereby

contributing to the physical and psychological health of caregivers (Gratão A. M., et al., 2019).

6
The tool helps to support interventions and actions proposed by health professions. The

purpose of the present study was to assess levels of distress that a caregiver experiences while

caring for a child living with cerebral palsy (CP), determine support systems available to the

caregiver, and identify ways of coping for the caregiver of a child living with cerebral palsy.

In a study to measure psychological distress and burden of care in Edo State Nigeria using the

General Health Questionnaire (GHQ-12) and the Zarit Burden Interview, it was established

that about 15% of the respondents experienced no-to-mild burden, 51.3% of the respondents

experienced mild-to-moderate burden and 34.0% of the respondents experienced high-or-

severe burden but 49.0% of participants experienced psychological distress (Udoh et al.,

2021).

Caregivers of children with intellectual disabilities have a great responsibility that may

be stressful. The psychological well-being of the caregiver may affect the quality of care given

to children with intellectual disabilities. The objective of the study was to determine the risk

of depression in caregivers of children with intellectual disabilities. The study was conducted

at Gachie Catholic Parish, Archdiocese of Nairobi (Kenya). The study was conducted among

114 caregivers registered at the Gachie Parish program (in Kenya) for intellectually disabled

children. A researcher-designed social demographic questionnaire and the Beck depression

inventory were administered to those that met the inclusion criteria. Seventy-nine percent

(79%) of the caregivers were at risk of clinical depression. Majority of the caregivers of

children with intellectual disabilities were at risk of developing clinical depression (Mbugua,

Kuria, & Ndetei, 2011).

1.3. Statement of the Problem

Most children enjoy healthy childhoods with little need for specialized services in the

health care system. However, a certain percentage of children experience difficulties during

their developing years and require access to and utilization of extensive health care resources

7
over time. Cerebral palsy (CP) is one such developmental disorder that begins in early

childhood as a set of functional limitations that stem from disorders of the developing central

nervous system. One of the main challenges for parents is to manage the child's chronic health

problems effectively in addition to that of coping with the requirements of everyday living

(Olawale, Deih, & Yaadar, 2013). Consequently, the task of caring for a child with complex

disabilities at home might be somewhat daunting for caregivers. The provision of such care

may prove detrimental to both the physical health and the psychological well-being of the

caregivers of children with chronic disabilities such as CP. Children with cerebral palsy have

also been reported to exhibit psychological problems, which increases the burden of care

(Olawale, Deih, & Yaadar, 2013).

A chronic illness has a monumental impact not only on the development of the child

suffering from it but also on the caregiver, family members and relationships. Based on this

fact, it is imperative for therapists working in helping the caregiver to gain a more

comprehensive understanding of how a chronic illness continuously affects the child and the

family structure as a whole. The study shows that caregivers of a child with CP are likely to

be at risk of depression due to psychological distress. There is, therefore, a need to avail a

support system to prevent or reduce the risk of distress in the caregivers of cerebral palsy

children as well as help them find coping mechanisms. Despite, previous studies showing

challenges that caregivers are going through, there is limited empirical literature in Kenya on

the study topic. Most of the literature is from Western countries which could have been done

with a different population to Kenyan based on cross-cultural differences. More cases of

children with cerebral palsy will still be reported in hospitals and the burden of caregiving left

to parents. Based on the above premise, it is important to provide relevant

information/literature about cerebral palsy caregiving, coping mechanisms and psychological

support to future parents and scholars.

8
1.4. Purpose of the Study

This study aimed to explore the psychological distress experienced by the caregivers

of children living with cerebral palsy, their coping mechanisms, and the existing support

systems.

1.5. Objectives of the Study

The study was guided by the following objectives:

i. To assess levels of distress that a caregiver experiences while caring for a child living

with Cerebral Palsy (CP).

ii. To determine support systems available to the caregiver of a child living with Cerebral

Palsy (CP)

iii. To identify ways of coping for the caregiver of a child living with Cerebral Palsy.

1.6. Research Questions

This research was guided by the following questions: -

i. What are the levels of psychological distress experienced by caregivers while caring

for a child who is affected by Cerebral Palsy (CP)?

ii. What are the available support systems, either at home, school, or places of worship

both for the ailing child and the caregiver?

iii. What are the available coping mechanisms that could be used to mitigate anger, fear,

grief anxiety for the caregiver?

1.7. Significance of the Study

The main beneficiary of this study will be Gertrude’s Children Hospital. The hospital

would use the findings of this study to develop structures and frameworks for supporting

caregivers of children with Cerebral Palsy. Moreover, they could use this information obtained

from the study to sensitize and create awareness to the community on the importance of care

9
support for the caregivers. The findings of this study would also be used by community

organizations and non-governmental organizations in creating advocacy or championing for

service delivery and support for caregivers of children with Cerebral Palsy. This research

targeted caregivers especially mothers who were raising children with cerebral palsy. While

care is part of parenting, it can often generate a significant burden when the requirements are

excessive and long-lasting. This excessive responsibility may adversely affect the physical

and psychological health of caregivers affecting their social, cultural and professional lives

and possibly reducing their quality of life. The study’s recommendations would be valuable

to the families of children living with CP and the therapists working with the caregivers who

are experiencing distress in providing care to an ill child. Caregivers play an essential role in

the lives of children living with CP. It is therefore necessary that good care is provided to the

caregivers of children living with CP to enhance the caregivers’ lives and reduce the long-

term effects of the caregiver burden.

Cerebral Palsy does not just affect those living with it but among the families and

caregivers as well; hence, the Cerebral Palsy Society of Kenya (CPSK) uses a holistic

approach to ensure that the parents/guardians and caregivers are trained to understand, accept

and provide better care for the children. Additionally, CPSK also trains the caregivers on

different economical projects to help individual families cope with the hardship of the

condition. CPSK provides highly subsidized therapy session for the children and caregivers

afflicted caregiver (Geere, Omondi, Gona, & Newton, 2012)

Caregiving is a challenging task that requires a lot of support if it is to be effectively

accomplished. The caregiver needs to possess appropriate knowledge and skills to address the

various challenges of psychological distress, caregivers coping mechanism and access to

social support. This study is therefore aimed at assisting caregivers accomplish the critical role

of caregiving through the approaches it addresses. It strived to fill gaps in existing associations

10
of cerebral palsy that address caregiving as well as promote positive attitudes and practices

among caregivers.

1.8. Limitations and Delimitations

The results of this study would be considered with caution. A small convenience

sample of caregivers of children living with CP was involved in the study and this may limit

generalizability of the results to entire population. The results cannot affirm that the

experiences were peculiar to mothers of children with CP only, as the study did not include

other mothers of children with different disability or mothers of normal children as a control

group. However, this study provides preliminary information which may help policy makers

and health care providers in providing family-centered care to mothers of children with CP.

1.9. Scope of the Study

The study was carried out among families with children living with cerebral palsy,

with data collected from one primary caregiver per household who were selected for this

study. The primary caregiver in this case was the person who was most responsible for the

day-to-day decision making and care of the child living with cerebral palsy. A convenience

sample of caregivers of children with cerebral palsy (CP) was selected for this study through

Gertrude's Children's Hospital in Nairobi.

1.10. Justification of the Study

Several factors are known or thought to influence the health outcomes of caregivers

who raise a child with a developmental disability such as CP. The psychological and physical

health of caregivers is strongly influenced by child behavior and caregiving demands. Thus,

in planning interventions for the child and the family, therapists need to consider children’s

behavioral issues as an important determinant of the well-being of both the child and the

caregiver. Therapists need to assess how caregivers are affected by behavioral as well as

functional aspects of the child’s disability in the provision of comprehensive family-oriented

11
services. It is also necessary for the therapists to understand the predictors of caregiver’s

burden and other challenges associated with caregiving to implement support structures to

alleviate caregiver burden on caregivers. This might contribute to reducing the long-term

effects on the caregiver burden and improve the quality of life among the caregivers of

children living with CP.

1.11. Operational Definition of Terms

Psychological distress – Psychological distress is defined as “a state of emotional

suffering associated with stressors and demands that are difficult to cope with in daily life”

(Arvidsdotte, Marklund , Kylen, Taft, & Ekman , 2016, p. 687). In this study, psychological

distress is defined as the state of depression, stress, and anxiety experienced by the caregiver.

Psychological distress is the study’s dependent variable and was measured using the Kessler

psychological distress scale (K10) (Kessler et al., 2003). K10 is a widely used self-reporting

measure of psychological distress, designed for use in the general population but also serves

as a useful and reliable clinical tool.

Cerebral Palsy (CP) – CP is defined as “a chronic condition represented as a set of

functional limitations due to alterations in the development of the central nervous system”

(Marrón, et al., 2013, p. 768).In this study, CP was defined as the chronic condition limits the

functioning of a child due to impairment of the central nervous system.

Caregiver – A family caregiver is broadly defined as a person belonging to the

patient’s informal support system who takes the care, and is responsible for the patient, and

who commits most of his or her time to that task without receiving any economic retribution

(Nana & Ndukwu , 2019). In this context, caregiver was a responsible person taking care of a

child with CP for a period not less than six months.

12
 Well-being – According to (Kun, 2016, p. 45) well-being “refers to the integration of

a person's physical, mental, emotional and social characteristics. In this study, it refers to

integration of a person’s physical, mental, emotional, and social wellness.

Support System- According to (Kun, 2016, p. 45). defines a support system as the

systems and individuals that provide help, support, respect, and care during challenging time.

In this study, it refers to any systems available to support an individual cope with difficult

situations. Support system is an independent variable and was measured using the

Interpersonal Support Evaluation List (Cohen, Mermelstein, Kamarck & Hoberman, 1985).

The Interpersonal Support Evaluation List is a widely used self-reporting measure of

perceived availability of social support.

Coping Mechanism- Coping mechanism includes behavioral strategies that the

caretaker uses to reduce the effect or demands of stress (Khan & Alam, 2016). In this study,

they refer to behavioral strategies that assist caretakers to reduce the effect of psychological

distress. Coping mechanism is one of the two independent variables in this study, and was

measured using the COPE Inventory (Carver, Scheier, & Weintraub, 1989). COPE is a widely

used 28-item self-reporting questionnaire designed to measure effective and ineffective ways

to cope with a stressful life event.

1.12. Chapter Summary

From the African context, the caregiver of a child with CP demonstrates certain

psychological problems associated with caring for their child. They adopt different strategies

to cope with the problems and enjoy some level of support from members of the extended

family in caring for the children. This study examined the psychological distress in the

caregiver who has and cared for a child with CP, their ways of coping, and any available

support systems. In the context of this study, the impact of CP on the caregiver was assumed

to denote impact on the family because of the central role played by the mother in a traditional

13
African family. The study participants were parents of children with CP who were the main

caregivers of the children. This chapter has provided a detailed background of the study.

Chapter 2 discusses the theoretical framework and gives an overview of CP; in addition to

highlighting the caregivers’ burden in relation to the psychological distress implicated on them

through various stressors such as the financial burden, the impacts it has on the other child

/children in the family. Lastly, this chapter also intends to find ways of how the caregiver

copes with and obtains the necessary support with the situation of having a child living with

the condition of Cerebral Palsy. The next chapter will focus on the literature review.

14
 CHAPTER TWO

LITERATURE REVIEW

2.1 Introduction

This chapter covers the literature review in relation to the objectives of the study. The

chapter entails the theoretical framework, general and empirical literature reviews, and the

conceptual framework.

2.2 Theoretical Framework

Solution Focused Therapy

Solution Focused Brief Therapy [SFBT] developed by Steve de Shazer (1940-2005),

and Insoo Kim Berg (1934-2007) will be considered as the theoretical framework of the study.

It is a goal-oriented therapy that focuses on helping clients change by finding solution to the

problems rather than dwelling and focusing on the problem. Solution Focused Brief Therapy

is brief therapy that last about three to five sessions holding the assumptions that individuals

have the capacity to make rational choices and to construct solutions that improves their lives

(Siedlecki, 2015). Therefore, clients are guided through the process of recognizing what is

working for them, helping them explore how best to continue practicing those strategies, and

encouraging them to acknowledge and celebrate success.

Therapists who treat people with CP need to optimize their limited therapy time

therefore they should focus on those approaches or treatment that would provide a solution to

the presented need. Additionally, therapists need to identify more ways to help their patient’s

incorporate activity into their lifestyles. The promotion of activity is not in conflict with

ecological approaches, because activity can and should occur in natural, everyday settings

whenever possible. McIntyre (2013) proposes that the paradigm for physical therapist

management of cerebral palsy needs to shift from traditional or “packaged” approaches to a

more focused and proactive approach of promoting activity through more intense active

15
training protocols, lifestyle modifications, and mobility-enhancing devices. Increased motor

activity has been shown to lead to better physical and mental health and to augment other

aspects of functioning such as cognitive performance, and more recently has been shown to

promote neural and functional recovery in people with damaged nervous systems. Although

the benefits of fairly intense physical exercise programs such as strength training are becoming

increasingly well recognized, few studies on the positive effects of generalized activity

programs have been conducted in individuals with cerebral palsy (McIntyre, Morgan, Walker,

& Novak, 2013).

It is important to note that the caregivers carry a huge burden in the form of distress,

depression, and anxiety. All these emotions may reduce the effectiveness of any interventions

for the child bearing the challenge of the illness. Therefore, solution-focused therapy may help

the caregiver in establishing quick and realistic goals to solve the immediate need.

More than the combination of individual functioning the whole is greater than the sum

of its parts; instead of treating “the problem individual” using the given theories in MFT, the

therapist will dissect the communication and functioning dynamics between the family

members to examine how the illness (CP) has influenced caregiver’s attitudes and behaviors

and how that affects the ill child, and facilitate either promotion or prohibition of certain

attitudes and behaviors that lead to changes in the family system. Marriage and Family

Therapists may endorse diverse theoretical approaches and utilize different therapeutic

techniques, despite sharing similar theoretical foundations (Tao & Randall, 2017).

2.3 General Review

Cerebral Palsy is “a chronic condition defined as a set of functional limitations due to

alterations in the development of the central nervous system” (Marrón, et al., 2013, p. 768). It

is a neurodevelopmental condition beginning in early childhood and continues throughout the

lifetime of an individual. CP affects 2 to 2.5 children per 1,000 born in the United States

16
(Krigger, 2006). CP is a chronic disabling condition resulting from permanent damage to the

immature brain, which contributes significantly to the poor health status of the child. A child

with CP suffers from several problems such as spastic paralysis, cognitive impairment, chronic

pain, speech and visual impairment, and gastrointestinal and feeding problems. A child with

CP also has several limitations in self-care functions such as feeding, dressing, bathing, and

mobility; hence, these limitations can result in the requirement for long-term care that far

exceeds the usual needs of a normal child. A study by Krigger (Krigger, 2006, p. 91) indicates

that “complications of cerebral palsy include spasticity and contractures; feeding difficulties;

drooling; communication difficulties; osteopenia; osteoporosis; fractures; pain; and functional

gastrointestinal abnormalities contributing to bowel obstruction, vomiting, and constipation”.

The difficulties faced by a child with CP result in their caregiver (s) experiencing a higher

level of stress which harms their physical health and social well-being” (Marrón, et al., 2013,

p. 768).

Once a child is discharged from the hospital and sent home for rehabilitation, the

responsibility of caregiving rests with the caregiver. In most families, the greatest

responsibility for care often rests with the mother. These mothers’ experiences and problems

are different due to cultural and economic status and the health services they receive.

Caregiving for patients with cerebral palsy is often extremely taxing and exhausting; the

caregiver often faces the prospect of social isolation, lack of time for self, family, and friends,

career interruptions, financial drain, and unrelieved heavy physical labor in the caregiving.

These and other problems contribute to a subjective sense of burden experienced by many

caregivers (Johnson & Mendoza, 2018).

Psychological distress in caregivers contributes significantly to behavioral and

emotional problems among chronically ill children as observed by Canning (1996, p.736). The

demands of caring for the children with the challenging conditions, may often cause symptoms

17
of depression and other general psychological distress. According to research by (Gugala et

al., 2019). a study was carried out among 301 caregivers taking care of children with CP in

Poland revealed that the level of anxiety and depression was clearly higher in the parents of

children with CP; the mean levels of anxiety and depression in the study group and the controls

amounted to 8.1 and 6.8 respectively. The levels of anxiety were measured using the Hospital

Anxiety and Depression Scale (HADS) scale.

2.4 Level of Psychological Distress among Caregivers

According to research by (McIntyre, Morgan, Walker, & Novak, 2013) 86% of

parents know something is wrong with their child before a description of CP is given, and

leading up to this point in time, most parents experience being told by their medical team that

the plan is to “wait and see.” When health professionals use the term “wait and see,” the

intention is to use this time to rule out other diagnoses, delay the delivery of bad news or

provide time for the child to grow out of it. Cerebral palsy (CP) is one of the commonest

causes of childhood disability in Africa.

The condition is associated with neuromuscular spasticity, cognitive dysfunction,

behavioral abnormalities, speech, visual problems, and problems in feeding and

gastrointestinal functions. Therefore, children with CP are highly dependent on caregivers,

who in most cases happen to be mothers; they are the most common caregivers of children

with cerebral palsy. In low- and middle- income settings these mothers are often burdened

with the care of the family, earning a livelihood as well as caring for the child with CP. This

puts substantial burden and stress on the caregiver due to the intersection between gender

norms, poverty, social stigma and caregiving for a child with a disability (Vadivelan, P, Shri

Sruthi, & Gopichandran, 2020). The goal of management of cerebral palsy is not to cure or to

achieve normalcy but to increase functionality, improve capabilities, and sustain health in

terms of locomotion, cognitive development, social interaction, and independence.

18
 The incidence of CP varies significantly across different geographical zones; thus,

parents of children with cerebral palsy have severally been reported to present with varying

psychosocial problems as reported in studies from western cultures. The term psychosocial

refers to the interaction between a person, the social environment, and the influence on their

behavior, i.e., the social environment includes family members, friends, co-workers,

employers, compensation system and health professionals. A high proportion of caregivers

report negative psychological effects in connection with the diagnosis, including symptoms

of post-traumatic stress.

There are four main types of cerebral palsy reflecting abnormalities in different parts

of the brain and resulting in various kinds of symptoms (Jansheski, 2020). The effects can

differ from one child with cerebral palsy to the next, and this is generally due to the type and

extent of the disorder each child has. They include: - Spastic Cerebral Palsy, Dyskinetic

Cerebral Palsy, Ataxic Cerebral Palsy, and Mixed Cerebral Palsy. The National Institutes of

Health states that specific cerebral palsy is the most common form of the disorder, affecting

around 80% of all diagnosed cases of cerebral palsy (Jansheski, 2020).

Spastic cerebral palsy causes children to have exaggerated reflexes (spasticity) and

stiff, sometimes painful muscles. The majority of children will experience some degree of

difficulty walking, depending on the type and extent of spasticity they have. Spastic cerebral

palsy is broken down into three different subtypes, that include: Spastic diplegia – involves

muscle stiffness, generally in the leg area but the arms may be mildly affected too and can

cause difficulty walking. Spastic hemiplegia – when primarily one side of the body is

involved, with movement difficulties mainly in the arm on the affected side. Spastic

quadriplegia – characterized by motor dysfunction all over the body, is the most severe type

of spastic cerebral palsy, and usually comes with other associated disorders (Jansheski, 2020).

19
 Dyskinetic cerebral palsy is the second most common type of cerebral palsy after

spastic forms. It is marked by abnormal movements in the arms, hands, and legs, making it

difficult to control body movements and coordination. Children with this form of cerebral

palsy can exhibit slow, writhing-type movements or quick, jerking movements. In turn,

walking and sitting down can be difficult. Muscle tone can be variable and change from tight

to loose from day to day.

Many have trouble controlling their face and tongue movements, resulting in

difficulties with speech. There are several types of movement disorders seen in dyskinetic

cerebral palsy: - Dystonia – where movements are twisting and repetitive, this can be present

in one part of the body, or the entire body and the movements are unplanned and involuntary,

usually stimulated by initiating a voluntary movement. Athetosis– characterized by slow,

writhing movements with extreme fluctuations causing difficulty maintaining a posture.

Chorea – which are abrupt, fidgety unpredictable movements that make the child appear

uncoordinated and clumsy (Jansheski, 2020).

Children born with a type of ataxic cerebral palsy often exhibit some form of

uncoordinated jerk or movements. This is the least common type of CP. The movements are

initiated by a voluntary effort, which then becomes interrupted and uncontrolled, causing a

lack of balance or coordination. There can be difficulties in walking and writing due to

instability, effects on speech, and swallowing, as well as eye movements (Jansheski, 2020).

Mixed cerebral palsy is when sometimes children do develop some sort of a mix of all

the types of CP. A combination of dyskinetic and spastic cerebral palsy is the most common,

but children can create a blend of any CP. Symptoms will depend on which types of cerebral

palsy the child has. Mixed cerebral palsy can also result in additional associated medical

problems and disorders. Common symptoms and medical problems experienced by children

20
with mixed cerebral palsy include: - seizures, cognitive issues, issues with speaking and

swallowing, hearing problems, drooling and facial grimaces, vision problems, including “lazy

eye” and cortical blindness (Bass, 2020).

Official Kenyan statistics for CP are unavailable as the Government is yet to collect

data on those living with it. In Nairobi, only Kenyatta National Hospital and Mama Lucy

Hospitals have clinics for children with CP. To add to the challenges, these facilities can only

provide therapy sessions for children aged five and below, meaning that parents of older

children have to seek services at private centers that are often expensive. Unfortunately, for

children living with CP, very few facilities and Government schools have programmes that

can cater for their condition. The sad scenario persists even as the CP community celebrated

World Cerebral Palsy Day on October 6. Ms. Dorothy Mwangi, chairperson of CPSK says the

government could have taken advantage of the last census to capture data on the number of

people living with CP (Donald, Samia, Mwesige, & Bearden, 2014).

One of the greatest burdens on family members of a child with CP is the financial cost

to the family; this can include the treatment costs, transport to the appointments at the hospital,

and adapting their home environments. Transporting a child with cerebral palsy to regularly

scheduled physical therapy sessions can cause significant family stress. The financial strains

felt by the family members of the ill child often lead to stress and worry (Golics, Basra, Finlay,

& Salek, 2013). Since the focus is on the child’s care, the caregivers are not able to sustain

their employment; hence, both medical and non-medical expenses are major contributors to

the financial impact and financial stress with difficulty accessing any valuable support. The

caregivers experience financial and social instability in addition to physical and psychological

fatigue, which then leads to many of the caregivers being forced to adjust their work schedules

or reduce working hours. If this happens, then the care responsibilities that might have just

increased in ensuring that they now have to focus more on giving appropriate and good care

21
for their ill or disabled child. The majority of the caregivers and especially the working parents

or guardians spend their savings to take care of the child with the challenging condition

leading them down to a path of poverty. This causes a lot of distress on the caregivers (Collins

& Swartz, 2011).

Caring for a family member diagnosed with a chronic illness or a disability that has an

indefinite duration such as cerebral palsy is a significant source of psychological distress that

can significantly affect the caregiver’s life. Psychological distress is “a state of emotional

suffering associated with stressors and demands that are difficult to cope with in daily life”

(Arvidsdotte, Marklund , Kylen, Taft, & Ekman , 2016, p. 687). Psychological distress has

been associated with the caregiving burden (Lam, Ng, & Tori, 2013). Literature has

established that caregivers experience a burden when caring for family members and loved

ones (Liu, Heffernan, & Tan, 2020).

Caregiver burden is defined as, “the strain or load borne by a person who cares for a

chronically ill, disabled, or elderly family member" (Swezey, 2020, p. 1; Liu, Heffernan, &

Tan, 2020, p. 439). It is the physical, mental, social, and financial impact of caring for someone

who is ill or who has functional impairments (Fauth, 2008). Caregiver burden encompasses

all of the challenges felt by caregivers concerning their physical and emotional well-being,

family relations, work, and financial status (Sherman, Burgio, & Kowalkowski, 2008). The

caregiver burden is also as a result of multiple physical, psychological, social, and financial

stressors associated with caregiving (Lindenberger & Meier, 2013). An important aspect of

the caregiver’s burden is the demands of caring.

Different studies have shown that caring demands can directly contribute to both the

caregiver’s psychological well-being and physical health (Han, Diwan, Chang, Comfort, &

Forward, 2017; Lam, Ng, & Tori, 2013; Raina, et al., 2005). Caregivers have been found to

experience psychological disorders such as depression, anxiety, anger, and hostility

22
(Vitaliano, et al., 2002). Predictors of the caregiving burden have also been identified as the

degree of disability, depression, and self-efficacy (Marrón, et al., 2013).

Caring for a family member with a long-term illness is a significant source of chronic

stress that might significantly accelerate the cognitive aging of informal caregivers. Some

authors have hypothesized that psychological distress would accelerate aging because it would

produce an all static load or deregulation of the autonomous, endocrine, and immune systems

for prolonged periods of time (Martinez, Moreno, & Albiol, 2018).

Typically, in African societies, conditions such as cerebral palsy are normally

associated with witchcraft and sorcery. Most families perceive it as a punishment from “gods”

for a wrongful act committed by a family member, most especially the mother. Normally the

blame is shifted to the vulnerable group i.e., the women, thereby initiating and causing family

and marriage breakdown. The caregivers of a child with CP in most communities are mainly

mothers and grandmothers; hence, they have often reported feelings of discrimination, stigma,

and exclusion in so many domains of their lives. The caregivers are usually subjected to stress

in the form of physical ailments, isolation, and insufficient time for other household chores.

According to Gona et al., (2011) existing research has shown that the caregivers of the

children with special needs undergo strain because of unusual demands that include disrupted

family and social relationships, financial difficulties, guilt, and parenting distress. Families of

children who have challenging conditions have reported heavy costs that they have incurred

due to the treatment of their children. The outpatient clinics, for instance, account for most of

the expenditure by the families; hence, the caregivers of children with CP are more likely to

experience depression and distress than parents of children without disabilities or prolonged

illness. In many communities living in Kenya by and large, disability or chronic illness is still

perceived as a curse by the majority of the ethnic tribes. Some however perceive disability or

chronic illness as a punishment from God for wrongdoing, or just the work of the evil spirit.

23
This has resulted in most caregivers hiding their children with the condition for fear of

isolation, segregation or discrimination. The community members have a tendency to

speculate on what the cause of the illness might be, and as such, engage in rumormongering

with assumptions that the caregiver could be associated with evil spirits or witchcraft (Gona,

Odera, Newton & Hartle, 2011).

Psychological stress associated with cerebral palsy (CP) is known to be one of the most

depressing conditions in families. Parents of children with cerebral palsy (CP) often

experience higher levels of stress than other parents; hence, the disabled child's reliance on

others in daily activities has a significant effect on the mother's (caregiver) psychological

distress; and the more dependent the child, the greater the caregiver's distress. Stress is a non-

specific response of the body to any excessive environmental request; hence, the family with

a child who is suffering from CP also suffers a significant burden of care, thus, increasing the

demands and reorganization of the roles. Each caregiver’s perception of their psychosocial

situation, as well as their reactions to it, may affect the parent-child relationship and the child’s

functioning. Therefore, the caregiver may need better support structures put in place to help

them cope with the difficulties encountered during all the stages of their child’s illness

(Khanna, Prabhakaran, Patel, Ganjiwale, & Nimbalkar, 2015)

The age of a child is significantly associated with parents’ feelings of distress; thus,

parental stress in many cases has been reported to be less when the child is older. The type of

work done by fathers has also been predicted as one of the triggers to parental stress indicating

that fathers who do not have formal or good employment, have their level of stress higher than

fathers who were working and in good employment (Jafar, et al., 2014).

Anxiety is the most frequently occurring physical disorder among family caregivers of

children with CP; hence, the caregivers exhibit behaviors that may pose a risk to their physical

health, personal well-being and mental health. When a child is ill, a family caregiver actively

24
participates in different areas of the child’s care and development; including assisting the child

with biomedical, physical, rehabilitation and coordination of health services (Rina, et al.,

2005). Carrying out these responsibilities is necessary so as to provide the chronically ill child

with the attention that they so need and to also mitigate in the lack of autonomy. These

activities however do come with repercussions for the family caregiver. Several studies have

demonstrated that anxiety in family caregivers is associated with being a female caregiver and

living in the same home as the ill child. Therefore, using interventions focused on evaluating

and treating cases of anxiety, promoting positive coping styles, increasing self- esteem in

family caregivers that have a child with CP is recommended (Toledano-Toledano & Moral de

la Rubia, 2018).

Meeting the high care demands of the affected child requires much time, effort, and

patience. The huge impact of having a child with CP is apparent in both the severity and

breadth of parent domains that seem to be influenced. One of the areas of subjective burden

among families of children with CP is parenting stress which derives from the demands that

parenting implies. The effects of having a child with CP on parents and families as observed

by Picardi, et al (2018), are like the disorder itself, i.e., multifaceted and pervasive. In addition

to experiencing levels of stress, the caregiver or parent are at high risk for mental health

concerns due to the display of high-level depression symptoms (Picardi, et al., 2018).

Certain problems are experienced by the caregivers while caring for the child. One of

the problems experienced is the over-dependence of the children on the mothers due to the

inability of the child to attain successive developmental milestones which if attained would

have reduced the extent of dependence of the child. The caregivers usually express these kinds

of sentiments to show how they feel about the ill child, e.g. “I know that at a particular age, a

child should be sitting but my child can't sit until I support him on a chair, even to bath him, I

have to hold him with my left hand to do that. I have to carry him on my back whenever I

25
want to go out because he cannot sit or stand”; “I have to be with him every time even when

he is sleeping”; and “I am the only one that carries him and this hinders me from going out”.

The over-dependence of the child also restricts the movement of the caregivers, and as such,

they cannot maintain a regular job nor manage their businesses. Inability to work reduces their

capacity to earn a living leading to reduced financial resources. This is seen in comments from

caregivers like; - “I have not been able to go to work” “taking her to crèche is very expensive

and I cannot afford it” “I am not free”. Another problem reported is the frequent sleep

disturbance experienced by the caregivers. This sleep disturbance is said to be directly and

indirectly associated with the children’s health status. The caregiver may not sleep well,

because, when they hear the child cry, they wake up and check, because the child can't turn

over by him / herself, they have to stand up and turn him/ her over. Therefore, sometimes

when they think of the problem, they don't sleep well especially when they can't work and it's

only the father bringing money to feed the family, it then affects them psychologically

(Ogunlana , et al., 2019).

2.5 Support Systems of Care Givers

Caregivers undergo pain and devastation upon realizing that their future dreams and

expectations would never be met, simply because of their child’s condition. Most families rely

on their children for future prosperity and well-being. It is evident that most caregivers

struggle with physical, emotional, financial, and social issues; hence, the lack of long-term

care for a child with CP form part of the caregiver burden. Although there are specialized

schools that could be accessed by the caregiver for the child, the main worry for them is

actually when the child grows older and is past the school-going age. This worry about the

future of the grown child is a major risk that truly makes the caregiver more scared and

anxious; this affects their mental health especially when depression kicks in manifested in

them asking themselves the question, “what would become of their child if they got ill or

passed on due to health issues or otherwise?”

26
 Childhood chronic illness often results in worry, stress, disruptions in routine change,

financial constraints and more; these types of effects notably manifest themselves in the

physical, social, financial, emotional spheres (Olwale et al., 2013).

Most parents eagerly anticipate the birth of a healthy child; but, when the diagnosis

reveals otherwise, this news is viewed as shattering. The parents and other family members

may experience a range of feelings once they have been confronted with the significant

change, stemming from their loved one having to put up with this challenge for the rest of

their lives. Parents are not the only ones who must adjust to what is in the present moment;

thus, the child’s illness causes life change for the entire family and once this has happened,

the family routines and dynamics naturally change and this confuses and distresses the healthy

siblings (East, 2010).

During the period when parents take care of their ill child, the exhaustion, the stress,

and even the uncertainty about how to respond to the needs of the child might cause them to

downplay how the impact of this illness might have on the brothers or sisters. This is because,

as already mentioned, the challenges may take a tremendous toll on the whole family and the

siblings are no exception. They begin having fear and anxiety over the illness, worrying that

their brother or sister could die (Singer, Ethridge, & Sandra, 2007). The siblings also tend to

feel guilty because, they are healthy and can enjoy activities that the ill sibling cannot; thus,

experiencing generalized worry or anxiety about an uncertain future.

Siblings also tend to become angry at parents because of feelings that they devote most

of their time and energy to take care of the ill sibling leaving them out; and so, they feel

neglected that no one in the family cares. These feelings often lead to jealousy among the

siblings and so they wish that they could become the center of the family’s attention just like

their ill brother or sister. This can also be evident when they resent the additional

responsibilities they are tasked with, such as more household chores than their sibling with a

27
health problem. Siblings also feel embarrassed and angry especially when strangers stare at

their brother or sister probably in a wheelchair, or being carried on the caregiver’s back, or

when other children tease their sibling because he or she looks different (La Clare, 2013).

Caregivers deal with the loss of the belief that their child would grow up to be healthy

and strong and that nothing would happen to their new born child. Nonetheless, different

members of the family suffer loss and may be processing it in different ways and experiencing

at different stages. This impacts the family dynamics; hence, it is common for one person in

the family to accept the illness, while others may view such an adjustment as a form of betrayal

(Ward, 2011).

Attachment describes the nature of the relationships that exists between the infants and

their caregivers, because, early attachment influences one’s social experiences in the society

(Ward, 2011, p. 42). It is important to note that attachment theory has gained great interests

among researchers in the field of Marriage and Family Therapy (MFT). As a result, many

researchers have examined the different attachment styles in relation to the child’s illness and

the grief that come with it thereof. Examining through the caregiver’s lens of attachment

styles, Ward (2011) demonstrates that the caregivers experience ambiguous loss of their ill or

disabled child in various unique ways. In a longitudinal study using interpersonal support

evaluation list (ISEC-12) with 69 males with autism spectrum disorder to establish social

support, depression, and suicidal ideation in adults with autism spectrum disorder in Australia,

it was established that most of the respondents had tangible support with a mean of 8.03(3.08)

followed by appraisal 6.79 (2.91) and belonging support 5.41(3.11) (Hedley et al., 2017).

Further the study showed that tangible support and not appraisal or belonging were directly

associated with depression and suicidal ideation.

In a study carried out by Burgette et al (2019) among 250 mothers of 1- to 6-year-olds

in Northern Appalachia, USA, to find out mother’s perceived social support and children’s

28
dental caries, it was established that there was no difference in the levels of support system

among the subscales of tangible, appraisal and belonging with each scoring and average of 20.

Caregivers engage in the overprotection of their ill child upon learning how vulnerable

the ill child is. They grieve at this; but, in regard to their expression of grief, the caregiver does

not hide their grief completely. The expression of grief and the intense grieving is done when

the child is not around. Loss does not only occur in the situations of a child dying, but also at

the time a child is diagnosed with the illness. The caregiver suffers the loss of a normal healthy

child that they were expecting; thus, they grieve the image, the dreams, the hopes, and even

the plans that they had for the child. In other words, the caregivers mourn the individual they

thought their child would grow to be (Ward, 2011).

The burden of having an illness in the family produces strain in all areas of life:

financial, physical, emotional, social, behavioral, and personal domains. the family may not

be getting enough sleep each night or not have their normal routine with all members present

in the home at a given time. Emotionally, the stress and uncertainty about the future, an

upcoming procedure, or extensive worry about the ill child may dominate each member’s

thoughts. Socially, families may either feel isolated and alone from extended family members

and friends or be overburdened by the extra attention that they are receiving. Behaviorally,

family members may be pulled in different directions than normally expected, such as going

to the hospital or picking up the siblings from school early and missing work. Each member

of the family is affected in some way by childhood illness whether he or she is the patient,

mother, father, grandparent, or brother or sister.

2.6 Caregivers Coping Mechanisms

This study will identify and describe, from the African perspective, the psychological

impact of CP on the caregiver and determine the strategies adopted by families in coping with

it. Coping with the psychological effects of cerebral palsy (CP) could be very difficult. This

29
is because children with CP need long-term care. The impact of cerebral palsy on parenting

stress is usually influenced by factors such as increased caregiving demands, low maternal

education, and ethnic background. Hence, coping strategies should be directed at easing the

burden of daily care, minimizing hospital re-admissions, and targeting appropriate

psychosocial support at specific subgroups to change parental perception and expectations.

Some of the caregivers try to cope with the problem of having a child with CP in their families

by resorting to religious/spiritual intervention as an alternative or complementary mode of

treatment for their children; however, some male caregivers’ resort to dependence on extended

family system support, to alcoholism and others to hopelessness (Khan & Alam, 2016).

Coping includes behavioral strategies that the caretaker uses to reduce the effect or

demands of stress. This is done through increasing one’s resources, changing one’s beliefs, or

perception, improving one’s control over the surroundings, taking help or reducing one’s

emotional reaction to stress. According to Khan and Alam (2016), coping efforts serves two

main functions: - i.e., management of the person-environment relationship and regulation of

associated stressful emotions. Khan and Alam (2016) define coping as “the cognitive and

behavioral efforts made to master, tolerate or reduce external and internal demands appraised

as taxing or exceeding the resources of the caregiver”.

The concept of coping is primarily a function of cognitive appraisal and thus highlights

the stress perceived by the caregiver and their person-environment transactions. The three

distinct features of coping in the definition given by Khan and Alam (2016), may be

summarized as; - coping is a process-oriented approach, coping is contextual, and coping can

be successful or unsuccessful depending on the many other factors other than the caregiver’s

perception of coping efforts. The coping actions can be of the following types; -

1. Problem Focused vs Emotional Focused Coping. According to these authors, if an

individual engages in activities that directly change the elements of the stressful situation, then

30
it is considered problem focused coping style. On the other hand, if the individual engages in

behaviors that are aimed at reducing the emotional reactions like soothing oneself, crying,

denial of the problem, blaming others or self for the problem, among other coping

mechanisms, then it is considered as an emotion focused coping style.

2. Engaged vs Disengaged coping style. The authors suggest that engaged coping involves

dealing with stress directly. Such examples of coping include: - acceptance, support seeking

and cognitive reappraisal. On the other hand, disengaged coping is one in which the caregiver

uses denial and wishful thinking. Disengaged form of thinking is usually maladaptive in

nature.

3. Proactive vs Reactive Coping. The authors continue to imply that reactive coping occurs

after a stressful episode has occurred. Thus, the aim of the coping is to compensate for the loss

or decrease the harm that has already happened.

On the other hand, proactive coping aimed to reduce the threat or harm in anticipation

of stressful situation stigma (Khan & Alam, 2016). Several previous studies have established

that most fathers of children with disabilities often lack coping strategies to solve real

problems; instead, many of them use emotional discharge or avoidant coping styles, which

lack effectiveness and lead to higher levels of stress (Raphael et al., 2010; Zablotsky et al.,

2013). A study with 144 fathers of children living with disabilities in Valencia Spain, Plaza,

Rico and Sevilla (2020) established that most of the fathers use avoidant coping. The coping

strategy was measured using Adult coping response inventory (CRI-A). The study also

showed that fathers of children with Autism Spectrum Disorders who used avoidant coping

styles, such as cognitive avoidance, had higher levels of stress and emotional problems than

fathers who used positive reappraisal strategies. Using Coping Orientation to Problems

Experienced Inventory (Brief COPE) to measure coping strategies among 339

parents/guardians in the USA, Hickey et al. (2021) revealed that Hispanic families in the study

31
reported low avoidant coping, approach coping, and negative family impact compared with

non-Hispanic families.

Research has shown that caring for a child with CP can create anxiety and stress for

the caregiver and may affect their wellbeing; hence, putting them at risk for stress, anxiety

and depression, difficulties in marriage and in extreme cases, leading to separation and adverse

impact on physical health. In addition, if the child’s disability is severe, the family tend to feel

more socially isolated and greater stigma (Khan & Alam, 2016, p. 41). This experience could

make the caregiver to have loss of control and the lack of support from either the spouse, and

or professional help. The caregiver most often is engaged full time taking care of their ill child

which affects their social life. Caregivers are more likely to turn towards religion; engaging

in prayer for assurance and increased religious activities to feel less stress. Most caregivers

have to make changes in their social life because of the demands a child with developmental

disorder, which could lead to high levels of frustration and dissatisfaction. Such a negative

impact has been seen to be moderated by majority of caregivers by expressing belief in the

child, having an optimistic attitude about their child’s life and by realistically appraising and

accepting the disability of the child (Khan & Alam, 2016, p. 43).

Mothers usually take the larger burden of care for the ill child and consciously make

an effort to be with the child most of the time; leading to them experiencing stress the child’s

father or siblings. The mothers as the caregiver also develop negative attitudes towards the

child’s disability. This is characterized by feelings of low self-esteem, guilt, self-blame,

sadness, denying the existence of disappointments, excess worry and disappointments.

Feelings of disappointment increase especially when a comparison amongst the child’s peers

on their achievements. Fathers’ difficulty on handling the stressful situation at home may feel

the need to put the blame on their wife and this will slowly create distance between them and

the family (Khan & Alam, 2016).

32
 Coping affects caregivers’ psychological functioning through many ways. Coping can

have a direct impact on psychological well-being or act as a moderator between psychological

well-being and the stressor. In their study, Khan and Alam (2016) show that the use of problem

focused coping strategies result in lesser psychological distress and better mother-child

interaction. While the use of negative emotion focused coping increases the possibility of

parents experiencing depression and stress related problems (Khan & Alam, 2016). Quality of

life of parents with an ill child can be affected by the degree of disability, associated problems

and amount of time spent on caregiving and the presence of adequate social support. The

illness of the child affects most of the parents in a negative way and indulgence in coping

strategies like blaming, emotional regulation coping, worrying, withdrawing, and feeling of

hopelessness leads to experiencing of negative moods on a daily basis which increases

parental stress and reduces psychological well-being (Khan & Alam, 2016).

Many parents/caregivers of children with CP try to believe in their child’s capabilities

by remaining optimistic and being realistic and accepting of the disability to cope with their

child’s illness. Such a coping strategy is effective as it allows an individual to take proactive

initiatives to accept or change stressful situations rather than to focus on negative feelings.

Positive coping strategies like acceptance, positive reinterpretation and growth, planning and

seeking social support can be used by caregivers to cope with heightened stress (Khan &

Alam, 2016).

There are considerable variations on how caregivers can adapt to their caregiving

demands, because caring for an ill child has several benefits that include one’s fulfillment and

satisfaction from helping to relieve the child’s suffering. A majority of the caregivers lack the

leisure time for hangouts with family and friends due to having increased emotional stress and

neglecting self-care. Personal self-care could include doing simple stuff such as having a

healthy sleep which is highly recommended, and simple exercising that does not involve going

33
to the gym and other expenses that could be involved that would increase the stress level in

the absence of it. This is key to the caregiver because the decline in their health will most

definitely compromise their ability to provide good care for their ill child (Murphy, Christian,

Caplin & Young, 2006).

Spousal support or satisfaction with marital relationships is associated with lower

levels of stress in caregivers of children with CP. High levels of family cohesion and

togetherness have been identified also as an important coping mechanism. Include the siblings

in the treatment and care of the ill child by having the healthy children accompany them to the

doctor’s visits or hospital sessions. This activity will, by all means, demystify the illness and

enhance the feelings of the caregiver and the healthy siblings feeling important and a part of

the treatment process. Encouraging their involvement and allowing them to lead the way will

help the caregiver feel less alone (Murphy, Christian, Caplin & Young, 2006).

Building relationships with others in a similar situation has been identified as a key

indicator of coping abilities among caregivers, i.e., their participation in community-based

peer support networks may bring belonging to the lives of the caregivers of the ill child.

Caregivers of all stripes need to meet their own needs to effectively care for their needy

children. This is especially important when providing care for a very young child as they may

be less able to compensate for themselves. Caregivers who do not take care of themselves may

find that they are eventually unable to take care of their ill child (Murphy, Christian, Caplin,

& Young, 2006).

Expectations by the caregivers from the health care staff are always just for them to

give accurate or appropriate information about the child’s condition, but this information has

always been scanty and sometimes, unavailable. The caregivers in this situation are always

left feeling lonely and hopeless. A majority of caregivers feel inadequately trained for the

skills that they will need to perform these tasks, having never received any formal education

34
in caregiving. In this day and era, the caregiver has access to information via the internet, and

what matters to them at this point is knowledge on how to cope with the child’s challenge.

They need more information about support services and therefore, they are likely to use the

internet to obtain any helpful information. One main issue emerges though; thus, the

caregivers of children with long- term illness such as CP in this perspective consider

themselves to have often lost dreams and aspirations literally. This is because in a familial

context, the caregivers expect their children to provide and support them during old age.

However, when a child is born ill, the future becomes uncertain (Gona, Odera, Newton, &

Hartle, 2011).

The effect of chronic life-threatening illness on the family is one of the major problems

confronting the healthcare system today. It is believed that beyond the practical care processes

with the child, the family needs a type of support that can meet the interdependence needs of

individuals. Increasingly, parents have a major responsibility for the daily management of

their child's condition. Family support processes are often dependent on the availability of

family members, and usually highlight the responsibility of the mother as the major caregiver.

Such support is frequently located at the core of the family, and especially expected from older

children; whereas other family members, such as grandparents, husband, aunts, and mothers-

in-law, interact only in occasional opportunities in order to provide the necessary care (Dezoti,

Alexandre, Freire, Mercês, & Mazza, 2015).

Families of children with cerebral palsy experience the transformations in their

realities, which lead them to seek help in social support networks in order to overcome the

difficulties they face in the child's development process. Such support may originate in the

elements that compose the network in which the family seeks help to care for their children.

Social support networks are deemed to be the structure of relationships among subjects that

are tied by affective bonds, a locus where subjective and objective exchanges take place,

35
turning networks into real entities. Due to the intensity of the care imposed by cerebral palsy,

the mother takes on the whole care for her child, causing her to carry a heavy burden. The care

demanded by this child leads the mother, the child's major caregiver, to seek support in her

closest relational system, especially her other children and other women in the family, such as

grandmothers and aunts, with whom she shares the care. Mothers believe that family members

are more likely to provide support and attention. As such, these members are usually chosen

to help major caregivers (Skok, Harvey, & Reddihough, 2006).

Dezoti, Alexandre, Freire, Mercês, and Mazza (2015) point out that in order to

overcome negative feelings and thoughts about the ill child and to face the dark future

promoted by cerebral palsy, caregivers seek to call upon God, as spirituality, most of the times,

becomes a strong support toward accepting the child's chronic condition.

This study examines the caregivers’ distress from a Kenyan perspective. Typically, in

the African society, conditions such as cerebral palsy are normally associated with witchcraft

and sorcery. Most families perceive it as a punishment from “gods” for a wrongful act

committed by a family member, most especially the mother. Normally the blame is shifted to

the vulnerable group i.e. the women, thereby initiating and causing family and marriage

breakdown. The caregivers of a child with CP in this community are mainly mothers and

grandmothers; hence, they have often reported feelings of discrimination, stigma, and

exclusion in so many domains of their lives. The caregivers are usually subjected to stress in

the form of physical ailments, isolation, and insufficient time for other household chores.

According to Gona, (2011) existing research has shown that the caregivers of the

children with special needs undergo strain because of unusual demands that include disrupted

family and social relationships, financial difficulties, guilt, and parenting distress. Families of

children who have challenging conditions have reported heavy costs that they have incurred

due to the treatment of their child.

36
 Families of children who have challenging conditions have reported heavy costs that

they have incurred due to the treatment of their children. The outpatient clinics, for instance,

account for most of the expenditure by the families; hence, the caregivers of children with CP

are more likely to experience depression and distress than parents of children without

disabilities or prolonged illness. In many communities living in Kenya by and large, disability

or chronic illness is still perceived as a curse by the majority of the ethnic tribes. Some

however perceive disability or chronic illness as a punishment from God for wrongdoing, or

just the work of the evil spirit. This has resulted in most caregivers hiding their children with

the condition for fear of isolation, segregation or discrimination. The community members

have a tendency to speculate on what the cause of the illness might be, and as such, engage in

rumormongering with assumptions that the caregiver could be associated with evil spirits or

witchcraft (Gona, Odera, Newton & Hartle, 2011).

Expectations by the caregivers from the health care staff is always just for them to give

accurate or appropriate information about the child’s condition; but this information has

always been scanty and sometimes, unavailable. The caregivers in this situation are always

left feeling lonely and hopeless. A majority of caregivers feel inadequately trained for the

skills that they will need to perform these tasks, having never received any formal education

in caregiving. In this day and era, the caregiver has access to information via the internet, and

what matters to them at this point is knowledge on how to cope with the child’s challenge.

They need more information about support services and therefore, they are likely to use the

internet to obtain any helpful information. One main issue emerges though; the caregivers of

children with long term illness such as CP in this perspective consider themselves to have

often lost dreams and aspirations literally. This is because in a familial context, the caregivers

expect their children to provide and support them during old age. However, when a child is

born ill, the future becomes uncertain (Gona, Odera, Newton, & Hartle, 2011).

37
Resilience involves the ability to adapt in the face of hardship and ongoing significant life

stressors in applying social resources and spirituality, which may be associated with

reductions in distress and increased positive wellbeing. Parents invest huge amounts of energy

in childrearing, but at the same time enjoy their parenting role. When faced with caring for a

child with developmental disability, families confront a number of additional issues such as

emotional, physical, and financial challenges over a long period of time. In relation to family

caregivers after the birth of chronic ill child such as CP, initial studies have found that

resilience was positively associated with positive affect and had inverse relationships to

caregiver burden. The relationship between resilience and hope in influencing psychosocial

distress was examined, although a small number of qualitative studies have identified “hope”

as a theme in positive caregiver orientation (Krstic, Mihic, & Mihic, 2015).

Caregivers’ cognitive and emotional processing of the experience of learning the

child’s diagnosis is pivotal when coping. Cognitively, the caregiver is supposed to understand

the meaning and implications of their child’s diagnosis; additionally, and even emotionally,

they need to experience, accept, and express their feelings of disappointment, grief, sorrow,

anger and guilt in order to be able to comprehend the meaning of the information concerning

their child having a serious impairment. With the help of a therapist in highlighting several

underlying issues that might have developed following the intense negative emotions,

caregivers who are able to accept their child’s condition can experience satisfaction, reward,

enjoyment, and a sense of being connected to their child. This does not imply that they would

no longer feel distressed, but simply that those feelings would not be so strong or

overwhelming as they used to be at the time of becoming informed of the child’s health

problems (Kritic, Mihic, & Mihic, 2015)

38
2.7 Conceptual Framework

The aim of this study was to explore the psychological distress experienced by the

caregivers of children living with cerebral palsy, their coping mechanisms, and the existing

support systems. The conceptual framework shows the connection between various variables

in the study.

Independent Variable Intervene Variable Dependent Variable

Coping
Mechanisms
Psychological
Distress

Support
Systems

Cultural factors
Gender
Financial stability
Societal attitude

Figure 2. 1 Conceptual Framework Author (Researcher, 2021)

As indicated in Figure 2.1, the independent variables of the study were the coping

mechanism and support systems while the dependent variable was psychological distress. The

conceptual framework indicates how coping mechanisms influence the psychological distress

experienced by the caregiver and what were the support systems available to the caregiver in

reducing psychological distress. However, it was noted that coping mechanisms and support

systems were not the only variables that could influence psychological distress. Therefore,

39
some of the intervening variables that could influence the study and variables include cultural

factors such as the cultural beliefs regarding CP, the gender of the caregiver, financial status

of the caregiver, and the attitude of society towards the caregiver.

2.8 Chapter Summary

Caregivers of a child with CP experience psychological, existential, physical, and

social struggles. During this season of their life, the caregivers find themselves in an

emotionally unstable situation and focus their attention on caring for and protecting their child,

resulting in neglect of their own psychological needs. After the birth of the child with CP, the

caregiver experiences challenges when trying to transition back to life as it was before the

diagnosis and experience a shift in focus from caring for their child to dealing with their own

emotional scars and fears. The findings suggested a need for future research that investigates

satisfaction with information from healthcare professionals and how to support parents to be

able to successfully return to work after the discharge from the hospital. The findings

illustrated the importance of adequate clinical routines that aim to screen for psychological

distress among caregivers who have a child diagnosed with CP, so that parents in need of

psychological support may be identified and successfully treated. The findings highlighted

various aspects of psychological distress that such support should address, which may aid in

the development of relevant interventions.

This chapter covered the literature review based on the objectives of the study. Chapter

three will focus on the research methodology.

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 CHAPTER THREE

RESEARCH METHODOLOGY

3.1 Introduction

This chapter covers the methodology that was used in the study. It shall look into the

research design, population, sampling design, data collection, data analysis, ethical

considerations, and ends with the summary of the chapter.

3.2 Research Design

The study was conducted using a descriptive research design. A descriptive design is

defined as a research study that seeks to shed light on current issues through a process of data

collection that enabled the research to describe the situation more completely (Gravetter &

Forzaro, 2012). The study sought to shed light on the levels of psychological distress among

caregivers and to describe the support systems and the coping mechanisms available to

caregivers of children with CP.

3.3 Site of Study

The site of study was the Gertrude’s Children Hospital in Muthaiga. Gertrude’s

Children’s Hospital is a not-for-profit children’s hospital established in 1947 with the donation

of some land by Colonel Ewart Grogan, in memory of his beloved wife, Gertrude Edith.

Gertrude’s Children’s Hospital is the most established paediatric hospital in Eastern and

Central Africa, providing healthcare to children in Kenya as well as those referred from

neighboring countries. The hospital attends to over 300,000 outpatients annually through a

network of 15 facilities in and around Nairobi and admits over 9,000 patients annually at its

100-bed facility located at Muthaiga, Nairobi.

Gertrude’s Children’s Hospital is licensed to provide healthcare to children and teens

up to 21 years and provides the full range of healthcare services including preventive care,

41
accident and emergency, outpatient care, inpatient medical and surgical care, and

rehabilitation services. The hospital provides specialist care covering more than 20 aspects of

paediatric specialization, and also runs a teens’ clinic providing comprehensive healthcare to

teenagers and young adults. Gertrude’s Children’s Hospital is licensed and recognized as a

Level 5 Healthcare Facility, a Tertiary Referral and Teaching Children’s Hospital. The

hospital operates on a self-sustaining financing model through charging fee for services.

The hospital, through the Gertrude’s Hospital Foundation, works with different

partners to provide much needed care to children from less privileged families especially in

informal settlements. The hospital also works with local and international partners to establish

highly specialized services, provide specialized training, and improve the quality of paediatric

care in sub-Saharan Africa.

3.4 Population

The target population for this study was parents of children with CP who regularly

attend health physiotherapy clinics at the Gertrude’s Children’s Hospital in Muthaiga.

According to Gertrude’s Hospital Registry Department, there are approximately 300 parents

who are registered to have children with CP and they attend weekly physiotherapy sessions at

the facility. These 300 parents formed the targeted population for the study. The Gertrude’s

Children Hospital Cerebral Palsy Register contains information on the patients both in

physical and electronic formats.

3.5 Sampling Design

3.5.1 Sampling Technique

Due to the impact of COVID-19, restriction of movement of individuals and person to

person engagement were limited. Therefore, it was difficult to ascertain the attendance of the

parents/caregivers at the Gertrude’s physiotherapy. In order to adjust to the challenge, a non-

42
probability sampling technique was adopted. According to Mugenda and Mugenda (2014)

non-probability sampling technique is form of sampling technique that does not give each

participant an equal chance of selection. This study considered convenience sampling in

selecting the participants for the study whereby any caregivers who were available during the

data collection at the facility were eligible to participate in the study. Convenience sampling

is a non-probability sampling where participants are selected based on their availability and

convenience to the study.

3.5.1.1 Inclusion and Exclusion

For inclusion criteria in the study, only caregivers of children with cerebral palsy were

included in the study. Additionally, the child with cerebral palsy should have been less than

18 years old and not younger than 6 months whilst the caregiver should have had the

undertaking for not less than 6 months. Six months was considered an ideal period because it

was believed to be sufficient time for the caregiver to have had good caregiving experience.

3.5.2 Sample Size

Based on the targeted population of 300 caregivers, the sample size was calculated

using the Cochran formula as follows.

Where:

e = desired level of precision (i.e. the margin of error),

p = (estimated) proportion of the population which has the attribute in question,

q = 1 – p.

z = Z score value

Therefore, for this study p = 10% with 95% confidence, and at least 5 percent—plus or

minus—precision. A 95 % confidence level gives us Z values of 1.96.

43
So the we= (1.96)2(0.1) (0.9)/0.052 =138

However, because the population was small, we modify the Cochran formula to

no is Cochran’s sample size recommendation,

N is the population size,

n is the new, adjusted sample size.

We get: (138)/ [(138-1)/300) +1] = 94

Therefore, the sample size for this study was 94 but in consideration of attrition rate of 10%,

the total sample size shall be103 participants.

3.6 Data Collection Method

Propose to rewrite this to: Data collection was carried out through a questionnaire,

which was adopted from several existing questionnaires. Questionnaires were used due to the

limited physical interactions due to the COVID-19 pandemic. The adopted questionnaires

were the Kessler psychological distress scale (10), the COPE inventory instrument, and the

interpersonal support evaluation questionnaire to measure the support system. These

instruments are available for free access for academic purposes.

To measure the levels of psychological distress Kessler psychological distress scale

(K10) (Kessler et al., 2003) was used. The tool is a 10-item questionnaire that is measured in

a Likert manner with scoring ranging from “all of the time = 5 score to none of the time =1

score. The total scoring of the tool ranges from a minimum of 10 to a maximum of 50. The

interpretation shows that ƒ 10 - 19 Likely to be well, 20 - 24 likely to have a mild disorder, 25

- 29 likely to have a moderate disorder, and 30 - 50 Likely to have a severe disorder.

44
 To measure coping mechanisms, the COPE inventory instrument by Carver, (2013)

was used. The instrument is 28-item questionnaire using Likert measurement which ranges

from “I haven’t been doing this at all =1” to “I have been doing this a lot = 4.” The scores

range from 28 to 112. A score less than 54 indicates avoidant coping which is associated with

poorer physical health among those with medical conditions, and a score higher than 55

indicates approach coping which is associated with active coping, positive reframing,

planning, acceptance, seeking emotional support, and seeking informational support.

To measure support systems, interpersonal support evaluation questionnaire by Cohen,

Mermelstein, Kamarck, & Hoberman, (1985) was adopted. The instrument is a 12- item tool

that measures the perceptions of social support. The questionnaire has three different subscales

designed to measure three dimensions of perceived social support which are appraisal support,

belonging and tangible. Items 2, 4, 6, 11 make up the Appraisal Support Subscale. Items 1, 5,

7, 9 make up the Belonging Support Subscale, and items, 3, 8, 10, 12 make up the Tangible

Support subscale. The tool is measured on a 4-point Likert scale ranging from definitely true

= 4 to definitely false =1. The interpretation of the score indicates that a score less than 11 in

each subscale shows low levels of perceived social support and scores greater than 12-16 in

each subscale is an indication of high levels of perceived social support.

For other general information such as the demographic information, the researcher

developed a self-administered instrument.

3.7 Research Procedures

3.7.1 Pre-Testing

Due to geographical and cross-cultural differences, the researcher undertook pre-

testing to ascertain the validity and reliability of the research instrument. The pre-testing was

undertaken at Mathari hospital in Nairobi. Mathari Referral hospital has a physiotherapy unit

that is used by caregivers of children with CP. The site was chosen because the participants

45
might be having similar characteristics as the targeted participants within the selected health

facility. The pre-testing targeted 20 participants; however, the pre-testing participants did not

take part in the final research. The results of the pre-testing indicated that Kessler

psychological scale had a Cronbach’s alpha 0.78, Brief COPE inventory had 0.81, and

Interpersonal support evaluation list (ISEC-12) 0.77.

3.7.2 Reliability of the Instruments

In a study carried out among 6700 regular forces personnel within the Canadian Armed

Forces established that Kessler psychological distress scale (K10) had a higher internal

consistency of Cronbach’s alpha 0.88 (Sampasa-Kanyinga, Zamorski, & Colman, 2018).

Similarly, in testing the reliability and validity of Kessler psychological distress (K10) among

public employees in Palestine, the study showed that K10 had an internal consistency of

Cronbach’s alpha 0.81 (Easton, Safadi, Wang & Hasson (2017).

For the reliability of COPE inventory, a study carried out among 423 female nurses in

the United Arab Emirates to show that the instrument had internal consistency Cronbach’s

alpha ranging from 0.81 to 0.88. Similarly, in a study to investigate the reliability and

structural and convergent validity of interpersonal support evaluation list -12 using 5313

Hispanics/Latinos in the United States established that the instrument had an internal

consistency reliability of Cronbach’s alpha 0.84 (Merz et al., 2014).

3.7.3 Validity of the Instruments

For validity of the instrument, Le et al. (2017) argued that instrument validated in one

setting may not be valid when applied in another due to differences in language expression,

cultural and social characteristics, development, values and beliefs. Therefore, the pre-testing

of the instrument helped the researcher to determine the content validity and the face validity

of the questionnaire which were really sufficient to help undertake the study.

46
3.7.4 Administration of the Instruments

For the administration of the research instrument, a letter of request for the

authorization was written to Gertrude’s Children’s Hospital administration. Upon receiving

the authorization for the data collection, the researcher carried out a training for the research

assistants, with the objective of sensitizing the research assistants on the best protocol of

seeking informed consent from the respondents, effective methods of data capture using the

research tool, and the best practices of assisting illiterate participants. For the actual data

collection, the researcher and the research assistants were based at the physiotherapy

department for a minimum of two weeks. A target of 10 caregivers per day was set. When a

caregiver visited the physiotherapy clinic, they would be engaged in conversation by the

researcher and research assistants while their children would be going through their

physiotherapy sessions. Completed questionnaires were then submitted to the researcher.

3.8 Data Analysis Method

Due to the fact that all of objectives were based on descriptive research design, data

analysis was undertaken based on descriptive statistics. For the first objective, which was to

measure the levels of psychological distress, descriptive analysis was employed where

measures of central tendencies such as the mean, mode, and media were developed. Similarly,

a measure of dispersion was also undertaken to understand the standard deviation and

percentile in the data.

Likewise, for the second and the third objectives, descriptive analyses were

undertaken. Measures of central tendencies and measures of dispersion were developed.

Additionally, other statistical graphical representations such as frequencies, tables, pie chart,

bar chart and other were developed for graphical visualization of the data.

47
3.9 Ethical Considerations

The research proposal was submitted to institutional review board (IRB) for

determination if it met the ethical standards. Upon, validation and approval by the IRB

(Appendix IV), the proposal was submitted to the National Commission of Science,

Technology and Innovation (NACOSTI), the Government agency charged with offering

authorization for carrying out a study in Kenya. Once all the authorization had been obtained,

(See Appendix III, the NACOSTI Permit) the researcher proceeded to data collection. Each

of the questionnaires had an informed consent section. The informed consent detailed the

purpose of the study, the benefit of the study to the community including to the participants.

had the right to voluntarily participate in the study without coercion, in addition to also having

the right to drop out of the study whenever they felt uncomfortable. After the participant had

read the Consent form, they were required to give their consent to participate in the study.

In order to protect the participants’ identity, all the questionnaires were filled in

anonymously in order to enhance the participants’ privacy and ensure their confidentiality in

the study. At the end of the study, there was a debriefing form detailing the places for

psychological support in case of any psychological distress that might have been caused

during data collection.

All the information obtained during the data collection was solely under the care of

the researcher. Upon completion of data analysis, only the relevant information for

presentation to the University was left in store, while the rest of the materials were disposed

through incineration. It is important to note that all the relevant information regarding this

study was only shared with USIU-Africa as part of the academic work.

48
3.10 Chapter Summary

This chapter entailed the discussion o the research methodology. A descriptive

research design was used with a sample size of 103 participants targeted for the study. Chapter

four will discuss the data presentation and analysis.

49
 CHAPTER FOUR

DATA PRESENTATION AND ANALYSIS

4.1 Introduction

This chapter entails the data presentation and analysis based on the information

obtained from the field and analyzed according to research questions.

4.2 General Information

4.2.1 Response Rate

The aim of this study was to explore the psychological distress experienced by the

caregivers of children living with cerebral palsy, their coping mechanisms, and the existing

support systems. In the administration of the research tool, a total of 103 questionnaires were

distributed to the targeted sample size of which 73 were successfully filled and returned.

About 16 of the respondents dropped out of the study for personal reasons whilst 14 did not

return their questionnaires. Based on the questionnaires received, this study had a response

rate of 71% and the discussion that follows shall be based on the 73 respondents.

4.2.2 Respondents Demographic Information

Table 4.1 shows the demographic information of the respondents.

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Table 4. 1 Respondents Demographic Information

Description Frequency Percentage

Mother 45 61.6
Position in the family Father 9 12.3
Guardian 19 26.0
Age of Parent Below 20 3 4.1
21-30 17 23.3
31-40 33 45.2
41-50 16 21.9

Age of the Child 2-5 years 20 27.4

6-10 32 43.8
11-17 21 28.8

Condition of the Child Cerebral Palsy 59 71.1

Cerebral Palsy & other
14 28.9
conditions

According to Table 4.1, the results showed that 61.6% of the sampled participants were

mothers and 26 % were guardians who could be either a brother a grandmother or any relative.

On the age of parents, the results showed that 45% were between 31-40 years old and 23.3%

were between 21-30 years old. Moreover, looking at the age of the child living with cerebral

palsy, 43.8% of them were between 6-10 years old, 28.8% were between 11-17 years old, and

27.4% were between 2- 5 years old whilst the mean age of children was 8.2 years (SD = 3.88).

Despite the study primarily focusing on the cerebral palsy, the study also wanted to understand

if there existed other comorbidities to cerebral palsy and the results established that 71.1% of

the children had cerebral palsy whilst 28.9% had cerebral palsy and comorbidity of other

conditions.

51
4.3 Levels of Psychological Distress that Caregiver Experiences

In determining the levels of psychological distress experienced by the caregiver, the

Kessler psychological distress scale was used. The scoring of the tool ranges from a minimum

of 10 to a maximum of 50. Table 4.2 shows the distribution of the results in relation to levels

of psychological distress.

Table 4. 2 Levels of Psychological Distress

Frequency Percent

Not indicated 6 8.2

Mild 5 6.8

Moderate 5 6.8

Severe 54 74.0

Well 3 4.1

Total 73 100

As shown in Table 4.2, 74% of the caregiver showed severe levels of psychological

distress, 6.8% had moderate levels and only 4.1% could be considered being having no sign

of psychological distress. On average, the respondents had a mean of 36.54 (SD = 8.72) of

which according to Kessler psychological distress scale, implied that the sampled population

had a severe level of psychological distress.

4.4 Support Systems Available to the Caregiver

For the support systems available to the caregivers, support systems, the Interpersonal

Support Evaluation questionnaire was used. The support system was measured based on three

subscales which have capitalized these to reflect similarity to how they have been captured in

52
the methodology section. Table 4.3 shows the results of the study based on the mean of each

of the support subscales.

Table 4. 3 Means of Support System Subscales

Appraisal support Belonging support Tangible support

N 73 67 73
Not indicated 0 6 0
Mean 7.99 6.84 6.73
Std. Deviation 2.252 1.864 2.016

As indicated in Table 4.3, the respondents had more of appraisal support with a mean

of 7.99 (SD = 2.25) as compared to the other support systems. Belonging support system had

a mean of 6.84 (SD = 1.86) and tangible had a mean of 6.73 (SD = 2.01). On average, the

results imply that the caregivers had low levels of support systems. Table 4.4 shows the level

of support on each of the subscales.

Table 4. 4 Levels of support system for each subscale.

Levels Frequency Percent

High level 5 6.8
Appraisal Support
Low level 68 93.2
Total 73 100

Belonging Support Not Indicated 6 4.1 6 6

High 1 1.4 1 1
Low 66 94.5 66
66
Total 73 100
Tangible Support High 3 4.1
Low 70 95.9
Total 73 100

53
 According to Table 4.4, 93.2% of the respondents had low levels of Appraisal Support,

90.4% had low levels of Belonging Support, and 95.9% had low levels of Tangible Support.

Generally, the results showed that there were low levels of support systems in all of the

subscales.

4.5 Coping Mechanisms by Caregivers.

Coping mechanisms by caregivers was measured using the COPE inventory

instrument. The interpretation of the result indicates that scores of less than 54 percent imply

avoidant coping and scores more than 55 percent is approach coping mechanism. Table 4.5

shows the results of the study.

Table 4. 5 Coping Mechanism

Frequency Percent

Approach coping 63 86.3

Avoidant coping 10 13.7

Total 73 100.0

As indicated in Table 4.5, a majority of the respondents (86.3%) had active coping

mechanisms and only 13.7% of the respondents had avoidant coping mechanisms. This

implied that most of the caregivers had active coping, positive reframing, planning,

acceptance, seeking emotional support, and seeking informational support.

The researcher carried out correlational analyses to understand the relationship between the

main study variables and the results are shown in Table 4.6.

54
Table 4. 6 Relationship between psychological distress, Support and Coping

PSY Distress Social Support Coping

Pearson Correlation 1 .111 -.075
PSY Distress Sig. (2-tailed) .351 .530
N 73 73 73
Pearson Correlation .111 1 .010
Social Support Sig. (2-tailed) .351 .935
N 73 73 73
Pearson Correlation -.075 .010 1
Coping Sig. (2-tailed) .530 .935
N 73 73 73

As shown in Table 4.6, the results of the study indicated that there was no significant

relationship between psychological distress and social support (r = 0.11, p = 0.35). Similarly,

there was no significance relationship between psychological distress and coping mechanism

(r = -0.08, p, 0.53). There was also no significant relationship between support and coping

mechanisms (r = 0.01, p =0.935).

4.6 Chapter Summary

This chapter focused on the data presentation and analysis. A total of 73 respondents

participated in the study of which 61.6% were mothers. The results showed that most of the

caregivers had severe psychological distress and low levels of appraisal, belonging, and

tangential support system. Additionally, the results indicated that most of the respondents had

active coping mechanisms which implied positive reframing, planning, having acceptance

including seeing informational support. Chapter Five will cover the summary of the results,

discussion, conclusions and recommendations from the study.

55
 CHAPTER FIVE

SUMMARY, DISCUSSION, CONCLUSION, AND RECOMMENDATIONS

5.1 Introduction

This chapter highlights the summary, discussion, conclusion, and recommendations of

the study based on the data presentations and analysis.

5.2 Summary of the Results

The primary objective of the study was to explore psychological distress experienced

by the caregivers of children living with cerebral palsy, their coping mechanisms, and the

existing support systems. Based on the data presentation and analysis, the results of the study

indicated that the response rate was 71% which was derived out of the 73 respondents who

participated in the study. Of the total respondents, 61.6% were mothers and 26 % were

guardians. On the age of the parents, 45% were between 31-40 years old and 23.3% were

between 21-30 years old. Likewise, on the age of the children, 43.8% of them were between

6-10 years old, 28.8% were between 11-17 years old, and 27.4% were between 2-5 years old.

This gave a mean age of the children to 8.2 years (SD = 3.88). In regard to the condition of

the children, 71.1% of the children had cerebral palsy whilst 28.9% had cerebral palsy and

comorbidity of other conditions.

In regard to the levels of psychological distress among the caregivers, the results

established that 74% of the caregivers had severe levels of psychological distress, 6.8% had

moderate levels and only 4.1% had no symptoms of psychological distress. On average, the

respondents had psychological distress mean of 36.54 (SD = 8.72) which implied a severe

level of psychological distress.

In determining the support systems for the caregivers, the results showed that highest

supporting system was the Appraisal Support with a mean of 7.99 (SD = 2.25) followed by

Belonging Support system with a mean of 6.84 (SD = 1.86) and Tangible Support with a mean

56
of 6.73 (SD = 2.01). Additionally, on the different levels of supporting system based on the

subscales, it was noted that 93.2% of the respondents had low levels of Appraisal Support,

90.4% had low levels of Belonging Support, and 95.9% had low levels of Tangible Support.

Generally, the results showed that the respondents had low levels of supporting systems.

In regard to the coping mechanisms of the respondents, the study established that

86.3% of the respondents had approach coping mechanisms and only 13.7% had avoidant

coping mechanisms. This implied that most of the caregivers had active coping, positive

reframing, planning, acceptance, seeking emotional support, and seeking informational

support.

5.3 Discussion of Results

5.3.1 Levels of Psychological Distress that a Caregiver Experiences

The finding of this study on the levels of psychological distress revealed that 74% of

the caregivers experienced severe levels of psychological distress, with 6.8% of the caregivers

experiencing moderate levels of psychological distress, and only 4.1% had no symptoms of

psychological distress. Overall, the caregivers had severe levels of psychological distress

having a mean of 36.54 (SD = 8.72) which implied a severe level of psychological distress.

Similar results were obtained by Gugala et al., (2019) in a sample of 301 caregivers in Poland

which showed that the levels of psychological distress especially anxiety and depression

among the caregivers were very high with a mean of 8.1 and 6.8 respectively using Hospital

Anxiety and Depression Scale (HADS) scale. Marrion et al., (2013) found that caregivers of

children with CP experienced high levels of stress which adversely affected their physical

health and social well-being. Ogunlana et al. (2019) established that caregivers of children

with physical disability had high psychological distress related to sleeping problems where

they had to wake up and check on the child, because they could not stand up or turn over by

themselves, and the caregiver had to help turn them over.

57
 George et al. (2020), using the Kessler psychological distress scale (K10) among

267,041 carers from New South Wales, Australia, found that full-time caregivers had higher

psychological distress compared to part-time caregivers.

Gona et al. (2011) established that the caregivers of the children with special needs undergo

strain because of unusual demands that include disrupted family and social relationships,

financial difficulties, guilt, and parenting distress. High levels of psychological distress among

parents of children living with CP were established by Khanna et al. (2015), who showed that

the high reliance of the disabled child on the caregiver for daily activities has a significant

effect on the caregiver’s psychological distress, and the more dependent the child, the greater

caregiver’s psychological distress. Picardi et al. (2018) showed that families with children

living with CP experience high parenting stress and high levels of depression. Despite all the

previous studies being carried out in different cultures, with different cross-cultural factors,

they had similar results to the current study. However, the researcher did not find any empirical

study whose results contradicted those of the current study.

5.3.2 Support Systems Available to the Caregiver

The current study adopted the Interpersonal Support Evaluation list (ISEC-12) to

measure the support system available to the caregivers and the results showed that highest

supporting system was the Appraisal Support with a mean of 7.99 (SD = 2.25) followed

Belonging Support system with a mean of 6.84 (SD = 1.86) and Tangible Support with a mean

of 6.73 (SD = 2.01). A review of the different levels of supporting system based on the

subscales indicated that 93.2% of the respondents had low levels of Appraisal Support, 90.4%

had low levels of Belonging Support, and 95.9% had low levels of Tangible Support. A similar

result was achieved by Burgette et al. (2019) in a study among 250 mothers of 1 to 6 years in

Northern Appalachia USA. The study established that there were no differences in the levels

of support system among the subscales of tangible, appraisal and belonging with each having

58
a low score of support system. Both studies used the ISEC-12 to measure the support and

reported the same result despite the two studies being conducted in different socio-cultural

backgrounds.

In another longitudinal study using interpersonal support evaluation list (ISEC-12)

among 69 males with autism spectrum disorder showed that respondents had tangible support

with a mean of 8.03(3.08) followed by appraisal 6.79 (2.91) and belonging support 5.41(3.11)

(Hedley et al., 2017). Despite both studies employing the same research tool, the results were

different. Perhaps the difference was as a result of population difference where the current

study targeted caregivers of children living with CP while, Hedley et al. (2017) dealt with

males with autism spectrum disorder.

5.3.3 Coping Mechanisms by Caregivers.

Coping mechanism in this study was looked into in terms of approach coping which

more adaptive and avoidant coping which is considered maladaptive. The current study

showed that 86.3% of the respondents had approach coping mechanisms and only 13.7% had

avoidant coping mechanisms. This implied that most of the caregivers had active coping,

positive reframing, planning, acceptance, seeking emotional support, and seeking

informational support. The results of this study were different from the results of other

previous empirical studies. Despite using Brief COPE scale to measure coping mechanism

among 339 parents/guardian in the USA, Hickey et al. (2021) revealed that Hispanic families

in the study reported low avoidant coping, approach coping, and negative family impact

compared with non-Hispanic families. The difference in the result could be because of the

cross-cultural differences.

Similarly, Zablotsky et al. (2013) found that fathers of children living with disability

had high levels of avoidant coping which led to higher levels of stress. Plaza et al. (2021), in

a study among 144 fathers of children with disabilities in Spain showed that most fathers had

59
high levels of avoidant coping and low levels of approach coping. The study also showed that

that fathers of children with Autism Spectrum Disorders who used Avoidant Coping styles,

such as Cognitive avoidance, had higher levels of stress and emotional problems than fathers

who used positive reappraisal strategies. However, the difference in the results could be

because of use of different research instruments where Plaza et al. used Adult Coping

Response Inventory (CRI-A) and the current study adopted the Brief COPE Scale. Other

differences could be as result of the cross-cultural differences. In another study, Khan and

Alam (2016) established that some caregivers of children with cerebral palsy resort to

religious/spiritual intervention as an alternative coping strategy whilst some fathers turn to

dependence on extended family system support or alcoholism.

5.4 Conclusions

The main objective of this study was to explore psychological distress experienced by

the caregivers of children living with cerebral palsy, their coping mechanisms and the existing

support systems. It could be concluded that most of the caregivers of children living with CP

do experience severe levels of psychological distress, and therefore measures should be

undertaken to reduce the severity of their psychological distress. In regard to supporting

systems, the study showed that majority of the caregivers had low levels of supporting

systems, be it the appraisal, belonging or tangible. These low levels of supporting systems

could exert a lot of pressure and stress on the caregiver which might result to psychological

distress. Nonetheless, it was evident that majority of the caregivers (86.3%) had approach

coping mechanisms which implied that the caregivers had active coping, positive reframing,

planning, acceptance, seeking emotional support, and seeking informational support.

Nonetheless, these coping mechanisms could be avoided by the affected in order to provide

protection on the caregiving stressors that might be experienced.

60
5.5 Recommendations

5.5.1 Suggestions for Improvement

The study has established important findings which will contribute to the overall

knowledge in the field under study. Most importantly, the study has also identified and laid

out suggestions for improvement and other areas for more study in relation to the findings.

5.5.1.1 Levels of Psychological Distress Experienced by Caregivers

On the levels of psychological distress, the current study revealed that most of the respondents

had severe levels of psychological distress. Therefore, this study recommends that:

i. Gertrude’s Children Hospital should engage marriage and family therapists to provide

caregivers with psychological support/interventions in order to reduce cases of

psychological distress.

ii. The management of Gertrude’s Children’s Hospital should carry our periodic

workshops and trainings for caregivers in order to sensitize and create awareness on

the impact of psychological distress among caregivers.

5.5.1.2 Support Systems Available to the Caregiver

The findings of the study showed that majority of the caregivers had low levels of support

system available. To this end, this study recommends that:

i. Gertrude’s Children Hospital should engage caregivers in periodic trainings/workshop

on the importance of having a support system especially for CP caregivers.

ii. The hospital in collaboration with USIU-Africa could work towards providing free

support systems courtesy of the students in the Marriage and Family Therapy program.

This will present an opportunity for USIU-Africa’s students to gain professional

experience, while at the same time helping caregivers in promoting support systems.

61
 iii. The Gertrude’s Children’s Hospital should engage the caregiver’s families and friends

and offer them training on the importance of support system in order to reduce the

stigma related to having a child living with CP.

5.5.1.3 Coping Mechanisms by Caregivers.

On the ways of coping mechanism, the results of the study showed that approach coping was

the most preferred method by the majority of the caregivers. This study recommends that:

i. Gertrude’s Children’s Hospital should engage their counseling department in

supporting caregivers in order to increase their approach coping.

ii. The Hospital should engage in community sensitization and creating awareness on CP

and the importance of support systems.

5.5.2 Suggestions for Further Research

It is important to note that this study highlighted vital findings in relation to the

objectives of the study. However, there were some challenges that were encountered which

might have had some influence on the results. To begin with, this study was carried during the

COVID-19 pandemic and such, some restrictions such as the limiting of in-person meetings

had an impact on the data collection and the selection of the participants. Therefore, future

studies should consider carrying out the study during a time which interruption such as the

pandemic may not be experienced. Future studies should also consider adopting probability

sampling and using a larger sample size compared to the one was used in the study.

The findings of the study showed that most of the caregivers had experienced severe

psychological distress and had low support systems. However, this study did not indicate the

cause and effect of such findings, hence, future studies could focus on establishing some of

the factors that lead to severe psychological distress and low support systems among

caregivers.

62
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 APPENDICES

APPENDIX I: PARTICIPANT CONSENT FORM

Hello. My name is Dorcas Kanyi. I am currently a student at the United States

International University –Africa pursuing a Masters degree in Marriage and Family Therapy.

I am carrying out a research study as part of my degree program and I would like you to

participate in my study. You have the freedom to decline or discontinue your participation at

any time during the study if you wish to do so. All the information that will be collected in

this study will be kept confidential. The aim of this study is to explore the psychological

distress experienced by the caregivers of children living with cerebral palsy, their coping

mechanisms and the existing support systems.

By signing below, you do show your acceptance to participate in this study. I fully understand

what the research study involves and what is required of me.

________________________________ _____________

Signature of Participant Today’s Date

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APPENDIX II: PARTICIPANT QUESTIONNAIRE

A. Demographic Information

1. Position in the family

 Mother  Father  Guardian

2. Age

 Below 20
 21-30
 31-40
 41-50
 50+

3. Age of the
child___________________________________________________________

4. What is the condition of the child

___________________________________________

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B Psychological Distress

Kindly rate the following statement as it applies to you considering the rating shown below.

Please tick the answer that is All of Most of Some of A little None of
correct for you: the time the time the time of the the time
(score 5) (score 4) (score 3) time (score 1)
(score 2)
1. In the past 4 weeks, about
how often did you feel
tired out for no good
reason?
2. In the past 4 weeks, about
how often did you feel
nervous?
3. In the past 4 weeks, about
how often did you feel so
nervous that nothing could
calm you down?
4. In the past 4 weeks, about
how often did you feel
hopeless?
5. In the past 4 weeks, about
how often did you feel
restless or fidgety?
6. In the past 4 weeks, about
how often did you feel so
restless you could not sit
still?
7. In the past 4 weeks, about
how often did you feel
depressed?
8. In the past 4 weeks, about
how often did you feel that
everything was an effort?
9. In the past 4 weeks, about
how often did you feel so
sad that nothing could
cheer you up?
10. In the past 4 weeks, about
how often did you feel
worthless?

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C. Social Support

This scale is made up of a list of statements each of which may or may not be true
about you. For each statement circle "definitely true" if you are sure it is true about you and
"probably true" if you think it is true but are not absolutely certain. Similarly, you should
circle "definitely false" if you are sure the statement is false and "probably false" if you
think it is false but are not absolutely certain.

Please circle the answer that is correct for Definitely Probably Probably Definitely
you: False =1 False =2 True =3 True = 4
1 If I wanted to go on a trip for a day (for
example, to the country or mountains), I
would have a hard time finding someone
to go with me.
2 I feel that there is no one I can share my
most private worries and fears with.
3 If I were sick, I could easily find someone
to help me with my daily chores.
4 There is someone I can turn to for advice
about handling problems with my family
5 If I decide one afternoon that I would like
to go to a movie that evening, I could
easily find someone to go with me.
6 When I need suggestions on how to deal
with a personal problem, I know someone
I can turn to.
7 I do not often get invited to do things with
others.
8 If I had to go out of town for a few weeks,
it would be difficult to find someone who
would look after my house or apartment
(the plants, pets, garden, etc.).
9 If I wanted to have lunch with someone, I
could easily find someone to join me.
10 If I was stranded 10 miles from home,
there is someone I could call who could
come and get me
11 If a family crisis arose, it would be
difficult to find someone who could give
me good advice about how to handle it.
12 If I needed some help in moving to a new
house or apartment, I would have a hard
time finding someone to help me.

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D. Coping Mechanism

Kindly rate the following statement as it applies to you considering the rating shown below.

I haven’t been doing this at all = 1 A little bit = 2, A medium amount = 3

I have been doing this a lot = 4

No. Kindly rate the following statement as it applies to you 1 2 3 4

1 I have been turning to work or other activities to take my

mind off things.

2 I have been concentrating my efforts on doing something

about the situation I'm in.

3 I have been saying to myself "this isn't real "

4 I have been using alcohol or other drugs to make myself feel

better
5 I have been getting emotional support from others.

6 I have been giving up trying to deal with it.

7 I have been taking action to try to make the situation better.

8 I have been refusing to believe that it has happened.

9 I have been saying things to let my unpleasant feelings

escape
10 I have been getting help and advice from other people

11 I have been using alcohol or other drugs to help me get

through it.
12 I have been trying to see it in a different light, to make it
seem more positive.

13 I have been criticizing myself.

14 I have been trying to come up with a strategy about what to

do.
15 I have been getting comfort and understanding from
someone.
16 I have been giving up the attempt to cope.

17 I have been looking for something good in what is

happening.

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18 I have been making jokes about it.

19 I have been doing something to think about it less, such as

going to movies, watching TV, reading, daydreaming,
sleeping, or shopping.

20 I have been accepting the reality of the fact that it has

happened.
21 I have been expressing my negative feelings

22 I have been trying to find comfort in my religion or spiritual

beliefs.
23 I have been trying to get advice or help from other people
about what

24 I have been learning to live with it.

25 I have been thinking hard about what steps to take.

26 I have been blaming myself for things that happened

27 I have been praying or meditating

28 I have been making fun of the situation.

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APPENDIX III: NACOSTI PERMIT

77
APPENDIX IV: IRB APPROVAL

78