development of a self care inventory for children with cerebral palsy living in poorly resourced ...

296 Pages·2016·5.5 MB·English

by  Julia Burg

DEVELOPMENT OF A SELF
CARE INVENTORY FOR
CHILDREN WITH CEREBRAL
PALSY LIVING IN POORLY
RESOURCED CONTEXTS IN
SOUTH AFRICA

JULIA BURG

A dissertation submitted to the Faculty of Health Sciences, School of
Therapeutic Sciences, University of the Witwatersrand, Johannesburg, in
fulfilment of the requirements for the degree of Master of Science in
Occupational Therapy.

Johannesburg 2016
Declaration

I, Julia Simone Burg, hereby declare that this thesis is my own work. It is being
submitted for the degree of Master of Science in Occupational Therapy of the
University of the Witwatersrand, Johannesburg. It has not been submitted
before for any degree or examination at this or any other university.

12th Day of May 2016
.

i
Dedication
I dedicate my dissertation work to all the children with cerebral palsy, that I have
worked with, together with their families. They are an inspiration to me.

ii
Acknowledgments
I wish to thank my supervisors, Denise Franzsen and Gillian Saloojee, for their
continued knowledge, support and encouragement. I would like to thank my research
assistants, Lydia Ngwana and Fundi Ziqubu for their assistance throughout the
research process. I would also like to acknowledge and thank Malamulele Onward
and Isibindi Project for allowing me access to complete my research, through use of
contacts and workspace.

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Abstract
Children with cerebral palsy (CP) struggle to participate within activities of daily living
(ADLs), especially self-care. Occupational therapists need to consider many factors
that influence self-care for intervention to be clinically significant. There is little
documentation regarding culturally appropriate assessment tools for African children
with CP. The purpose of this study was to determine criteria for items of the Self
Care Inventory for Children with Cerebral Palsy (SCICP) against which dysfunction
within the CP population can be measured.
The study included initial development of the items and content validity of the SCICP
was determined. Field-testing of the items of the SCICP was done to evaluate the
administration and the item appropriateness.
Age, hand function and cognition play a role in self-care skills. The SCICP is able to
determine what a child’s actual self-care performance is and differentiate between a
typically developing child and a child with delayed self-care skills.
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Table of Contents
Declaration ............................................................................................................................. i
Dedication ..............................................................................................................................ii
Acknowledgments ................................................................................................................. iii
Abstract................................................................................................................................. iv
Table of Contents .................................................................................................................. v
List of Tables ........................................................................................................................ ix
List of Figures ....................................................................................................................... x
Abbreviations ...................................................................................................................... xiv
CHAPTER 1 INTRODUCTION ................................................................................... 1
1.1 Introduction to the Subject ....................................................................................... 1
1.2 Statement of the Problem ........................................................................................ 2
1.3 Purpose of the Study ............................................................................................... 3
1.4 Aims and Objectives of the Study ............................................................................ 3
1.4.1 Aims ..................................................................................................................... 3
1.4.2 Objectives ............................................................................................................ 4
1.5 Justification for the Study ........................................................................................ 4
1.6 Organisation of the Dissertation .............................................................................. 5
1.6.1 Layout of the Study ............................................................................................... 5
1.6.1.1 Chapter 1: Introduction ...................................................................................... 5
1.6.1.2 Chapter 2: Literature Review ............................................................................. 5
1.6.1.3 Chapter 3: Methodology .................................................................................... 5
1.6.1.4 Chapter 4: Results ............................................................................................. 5
1.6.1.5 Chapter 5: Discussion ....................................................................................... 6
1.6.1.6 Chapter 6: Conclusion ....................................................................................... 6
CHAPTER 2 ............................................................................................................... 7
LITERATURE REVIEW .............................................................................................. 7
2.1 Introduction ............................................................................................................. 7
2.2 History and Definition of Cerebral palsy ................................................................... 7
2.2.1 Prevalence of Cerebral Palsy ............................................................................... 9
2.2.2 Socioeconomic Status and Cerebral Palsy in the South African Context ............ 11
2.3 Classification Systems of Cerebral Palsy to Complement Assessments ................ 13
2.3.1 Condition based classifications ........................................................................... 14
2.3.2 Other Classification Systems used in Cerebral Palsy ......................................... 15
2.3.3 Activity and Participation based Framework ..................................................... 17
2.3.4 Relationship between Classifications used in Cerebral Palsy and Occupational
Performance ................................................................................................................ 17
2.4 Occupational Performance in Cerebral Palsy ........................................................ 19
2.4.1 Factors affecting Occupational Performance of Children with Cerebral Palsy ..... 22
2.4.2 Factors affecting Occupational Performance of Children with Cerebral Palsy in the
resource-constrained South African Context ............................................................... 23
2.5 Occupational Performance Assessment Tools for Children with Disabilities .......... 24
2.5.1 Assessment tools for occupational performance in Children with Disabilities ...... 25
2.5.1.1 The Pediatric Evaluation of Disability Inventory (PEDI) .................................... 26
2.5.1.2 Functional Independence Measure for Children (WeeFIM) .............................. 27
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2.5.1.3 Activities Scale for Kids (ASK) ......................................................................... 28
2.5.1.4 Life Skills Inventory .......................................................................................... 28
2.5.1.5 Bayley Scales of Infant and Toddler Development – Third Edition (Adaptive
Behavior Questionnaire) .............................................................................................. 29
2.5.1.6 Oregon Project - Sixth Edition.......................................................................... 30
2.5.1.7 The Primary Progress Assessment Chart of Social Development .................... 30
2.6. Development of Standardised Assessments ........................................................ 31
2.6.1 Factors to be considered in applying an already standardised assessment within
an African Context ....................................................................................................... 31
2.6.2 Steps in the Development of a Standardised Assessment .................................. 35
2.6.2.1 Content validity ................................................................................................ 36
2.6.2.2. Item Analysis .................................................................................................. 36
2.7 Summary ............................................................................................................... 37
CHAPTER 3 ............................................................................................................. 39
METHODOLOGY ..................................................................................................... 39
3.1 Introduction to Methodology .................................................................................. 39
3.2 Research Design ................................................................................................... 39
3.2 Stage 1 .................................................................................................................. 40
3.2.1 Stage 1.1: Defining the construct and domains of the tool .................................. 40
3.2.1.1. Factors considered in determining the Self-Care Inventory for Children with
Cerebral Palsy ............................................................................................................. 40
3.2.2 Stage 1.2: Preparing and formatting items .......................................................... 43
3.2.2.1 Format of items ............................................................................................... 43
3.2.2.2 Item generation ............................................................................................... 43
3.3 Stage 2 .................................................................................................................. 46
3.3.1 Stage 2.1: Content Validity – Subject Matter Expert (SME) Survey and Review. 46
3.3.1.1. Selection of SME Participants: Occupational Therapists ................................. 47
3.3.1.2 Procedure ........................................................................................................ 47
3.3.2 Data Analysis for Subject Matter Expert (SME) Survey and Review ................... 48
3.3.3 Translation of the Self Care Inventory for Children with Cerebral Palsy .............. 48
3.4 Stage 3: Content validity: Content validity - Caregivers of Children Living in a
Resource-Constrained Area of Kwa-Zulu Natal (Discussion Groups) .......................... 48
3.4.1 Study Site ........................................................................................................... 49
3.4.2 Selection of participants...................................................................................... 49
3.4.3 Procedure ........................................................................................................... 50
3.4.4 Data Analysis for Content validity - Caregivers of Children Living in a Resource-
Constrained Area of Kwa-Zulu Natal (Discussion Groups) .......................................... 51
3.5 Stage 4.1: Evaluation of the Self Care Inventory for Children with Cerebral Palsy on
Child Participants with and without Cerebral Palsy. ..................................................... 52
3.5.1 Study Site ........................................................................................................... 53
3.5.2 Selection of child participants ............................................................................. 53
3.5.3 Research Procedure ........................................................................................... 54
3.5.4 Assessment of child participants ......................................................................... 55
3.7 Ethical Considerations ........................................................................................... 61
3.7.1 Ethical clearance for the study ............................................................................ 61
3.7.2 Ethical Considerations for SME Content Validity Survey .................................... 61
3.7.3. Ethical considerations for Content Validity Discussion Groups .......................... 61
3.7.4 Ethical Considerations for Field Test .................................................................. 62
CHAPTER 4 RESULTS ............................................................................................ 63
4.1 Introduction ........................................................................................................... 63
4.2 Development of the items ...................................................................................... 63
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4.2.1 Mapping to the ICF ............................................................................................. 63
4.3 Content validity ...................................................................................................... 65
4.3.1 Subject Matter Expert Survey Results ................................................................ 65
4.3.2 Discussion groups with expert caregivers of children living in Nquthu, Kwa-Zulu
Natal. ........................................................................................................................... 68
4.4 Item Analysis ......................................................................................................... 70
4.4.1 Item appropriateness .......................................................................................... 70
4.4.2 Item difficulty for typical children aged 2 to 5 years ............................................. 72
4.4.2.1 Participants demographics .............................................................................. 72
4.4.2.2 Percentage Independence of typically developing children according to age ... 72
4.4.3 Item discrimination for child participants with cerebral palsy aged 2 to 7 years ... 76
4.4.3.1 Participants’ demographics .............................................................................. 76
4.4.3.2 Percentage Independence of participants with cerebral palsy compared to that
of typically developing participants according to age ................................................... 77
4.4.3.3 Percentage Independence of participants with cerebral palsy according to
severity of cerebral palsy based on GMFCS levels ...................................................... 82
4.4.3.4 Individual factors affecting Eating and Functional Mobility Associated with
Eating .......................................................................................................................... 85
4.4.4 Review of administration and scoring ................................................................. 88
4.4.4.1 Analysis of Scoring .......................................................................................... 90
4.4.4.2 Time to administer ........................................................................................... 91
4.4.5 Review of age of independence.......................................................................... 91
4.4.5.1 Comparison of age of independence of discussion group of caregiver
participants and that reported by caregivers of child participants during the field-testing
.................................................................................................................................... 92
4.4.5.2 Comparison of age of independence of discussion group caregiver participants
and the actual performance of child participants .......................................................... 92
4.5 Summary ............................................................................................................... 93
CHAPTER 5 DISCUSSION ...................................................................................... 95
5.1 Introduction ........................................................................................................... 95
5.2 Item and Domain Generation ................................................................................. 95
5.3 Content validity and item appropriateness ............................................................. 97
5.3.1 Content validity and item appropriateness from Subject Matter Experts (SMEs) . 97
5.3.2 Content validity and item appropriateness from expert caregivers ...................... 98
5.4 Item difficulty and ability to distinguish dysfunction .............................................. 102
5.4.1 Typically developing children aged 2 to 5 years ................................................ 102
5.3.2 Child participants with cerebral palsy aged 2 to 7 years ................................... 103
5.4.2.1 Differentiation between children with cerebral palsy and typically developing
children ..................................................................................................................... 104
5.4.2.2 Distinguishing factors that affect self-care in children with cerebral palsy ...... 106
5.5 Parent report vs. observation of child participants on the Self Care Inventory for
Cerebral Palsy Children............................................................................................. 110
5.6 Review of administration and scoring .................................................................. 113
5.7 Limitations of the study ........................................................................................ 114
5.8 Summary ............................................................................................................. 115
CHAPTER 6 CONCLUSION .................................................................................. 117
6.1 Introduction to Conclusion ................................................................................... 117
6.2 The item selection, content validity and field test of the Self Care Inventory for
Children with Cerebral Palsy ..................................................................................... 117
6.3 Recommendations .............................................................................................. 118
APPENDICES ........................................................................................................ 127
vii
Appendix A: Scoring .................................................................................................. 127
Appendix B: SME Content Validity Survey on Survey Monkey .................................. 128
Appendix C: Tools used for Field Testing .................................................................. 154
Appendix D: Items observed ..................................................................................... 158
Appendix E: Ethical Clearance Certificate and Amendments ..................................... 167
Appendix F: Expert Occupational Therapist consent for participation in survey ......... 173
Appendix G: Discussion Group Consent to Participate .............................................. 174
Appendix H: Consent Form for Field Test .................................................................. 177
Appendix I: Items prior to ICF Mapping ..................................................................... 180
Appendix J: ICF Mapping to the items ....................................................................... 189
Appendix K: Final items validated through survey ..................................................... 206
Appendix L: Items modified post expert survey ......................................................... 212
Appendix M: Items modified post discussion groups ................................................. 217
Appendix N: Items modified post field test ................................................................. 223
Appendix O: Items’ scoring modified post field test .................................................... 226
Appendix P: Individual differences detailed for all domains of SCICP except for eating.
.................................................................................................................................. 229
Grooming and Functional Mobility Associated With Grooming ............................... 231
Appendix Q: Self Care Inventory for Children with Cerebral Palsy (SCICP) with scoring
and administration instructions .................................................................................. 233
Appendix R: Comparison of age of independence as determined during discussion
groups and field test .................................................................................................. 244
Appendix S: Comparison of age of independence as determined during discussion
groups and field test actual performance ................................................................... 254
Appendix T: Final version of the Self Care Inventory for Children with Cerebral Palsy
(SCICP) with scoring and administration instructions ................................................ 264

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List of Tables
Table 4.1: Construct: Self-care: ICF Mapping .......................................................... 64
Table 4.2: Items for eating adjusted following SME survey ...................................... 65
Table 4.3: Items for all domains adjusted following SME survey .............................. 67
Table 4.4: Items adjusted for the eating domain following discussion groups .......... 69
Table 4.5: Items for all domains adjusted following discussion groups .................... 70
Table 4.6: Items adjusted for the eating domain following the pilot field test ............ 71
Table 4.7: Demographics of typically developing children ........................................ 72
Table 4.8: Reordering of items in the eating domain according to the difficulty for age
groups 2-5 years ............................................................................................... 74
Table 4.9: Demographics of participants living in an under resourced area of KZN
diagnosed with CP ............................................................................................ 77
Table 4.10: Items for eating adjusted during data analysis ...................................... 89
Table 4.11: Items for all domains adjusted during data analysis .............................. 90
Table 4.12: Number of items showing a difference between actual performance and
caregiver report ................................................................................................. 91
Table 4.13: Comparison of age of independence ..................................................... 93

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