EPIDEMIOLOGY OF SPINAL CORD INJURY

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The rehabilitation of people living with spinal cord injury

SCI presents a number of challenges to the injured person, the rehabilitation team, the family and society at large. For a person who has sustained PLWSCI and who has sustained a complete high lesion (i.e. cervical), the challenge becomes even greater because this person loses functioning of all four limbs; hence the extent of “disability” becomes greater. It is even worse when the person is from an economically disadvantaged area, where the physical surroundings may not be suitable for wheelchairs, and where members of the community regard “crippled people” as cursed (Rouland & Lyons, 1989). The challenge for the rehabilitation team in the case of a person with such a high lesion relates to prolonged rehabilitation periods and the management of health complications. These complications are discussed in detail in chapter 2.
The challenges for the family of a person with a high lesion are mainly related to the fact that such a person is more dependent on others for basic functions and family members have to change their roles to accommodate this individual. The medical and rehabilitative management of people who have sustained SCI has progressed dramatically over the centuries. The first medical records of SCI management are reported to have been documented in the Edwin Smith Papyrus by Imhotep, the father of Egyptian medicine (Hughes, 1988).
According to Lifshutz and Colohan (2004), Imhotep is reported to have documented the following regarding the first ever medical record of a SCI:
If thou examinest a man having a dislocation of his neck, shouldst thou find him unconscious of his two arms (and) his two legs on account of it while his phallus is erected on account of it, (and) urine drops from his member without his knowing it; his flesh has received wind: his two eyes are blood-shot; it is a dislocation of a vertebra of his neck extending to his backbone which causes him to be unconscious of his two arms . . . Thou shouldst say concerning him . . . an ailment not to be treated.
This nihilistic approach to SCI management persisted until the 1940s, during World War II. Post war advances in the emergency care and rehabilitation services under the leadership of Sir Ludwig Guttman in England and Donald Monroe in the USA enabled people to survive SCI (Lifshutz & Colohan, 2004).
In 1944, Guttman established the first spinal unit in Stoke Mandeville, United Kingdom. During the past three decades, further substantial improvements have been witnessed worldwide in the medical, technological, pharmacological and rehabilitative management of spinal cord injury (SCI) (Magasi, Heinemann & Whiteneck, 2008). As a result of these improvements, people with SCI are now living longer and achieving greater functional independence. Because of this increased lifespan, the focus of medical management and rehabilitation for people with SCI has shifted from medical management of the acute condition to issues that affect quality of life and community participation.

CHAPTER 1: INTRODUCTION 
1.1 INTRODUCTORY ORIENTATION
1.2 BACKGROUND TO THE STUDY
1.2.1 Disability and Spinal Cord Injury
1.2.2 The rehabilitation of people living with spinal cord injury
1.2.3 Stages/levels of rehabilitation
1.2.4 Spinal cord injury rehabilitation in South Africa
1.3 PROBLEM STATEMENT
1.3.1 The challenges faced by PLWSCI observed by the researcher
13.2 Limited research on SCI rehabilitation in RSA
1.4 JUSTIFICATION OF THE STUDY
1.4.1 The importance of research on participation
1.4.2 The unique context of PLWSCI in South Africa
1.5 RESEARCH QUESTIONS
1.6 RESEARCH FRAMEWORK
1.7 AIMS AND OBJECTIVES
1.7.1 Objectives of the study
1.8 STUDY METHODOLOGY
1.8.1 Research approach
I.8.2 Research setting
1.8.3 Participant selection
1.8.4 Data collection
1.8.5 Data analysis
1.9.1 The physiotherapy profession
1.9.2 The South African Department of Health
1.9.3 People living with Spinal Cord Injury
1.10 SCOPE OF THE STUDY
1.11 TERMINOLOGY
1.11.1 Disability
1.11.2 Spinal Cord injury
1.11.3 People Living with Spinal Cord Injury (PLWSCI)
1.11.4 Community participation
1.11.5 Rehabilitation
1.12 OUTLINE OF THESIS CHAPTERS
CHAPTER 2: LITERATURE REVIEW 
2.1 INTRODUCTION
2.2 EPIDEMIOLOGY OF SPINAL CORD INJURY
2.2.1 Incidence and prevalence of SCI
2.2.2 Aetiology of Spinal Cord Injury
2.2.3 Life expectancy of people living with Spinal Cord Injury
2.3 BACKGROUND TO THE CONCEPTAL FRAMEWORK
2.3.1 Evolution of the WHO model – International Classification
Functioning Disability and Health (ICF)
2.3.2 Components of the ICF
2.3.3 Summary – background to the conceptual framework
2.4 FACTORS INFLUENCING THE COMMUNITY PARTICIPATION
OF PEOPLE LIVING WITH SPINAL CORD INJURY
2.4.1 The influence of factors in the ‘body structure and function’
component on community participation
2.4.2 The influence of functional activities on community
Participation
2.4.3 The influence of personal factors on community participation
2.4.4 The influence of environmental factors on community
Participation
2.4.5 Summary – factors influencing community participation
2.5 SOUTH AFRICAN RESEARCH ON THE COMMUNITY
PARTICIPATION OF PLWSCI
2.6 MEASURING COMMUNITY PARTICIPATION FOR PLWSCI
2.6.1 Measurement instruments at body structure and function level
2.6.2 Measurement instruments at activity level
2.6.3 Measurement instruments at participation level
2.6.4 Instruments for measuring personal factors
2.6.5 Instruments for measuring environmental factors
2.7 SUMMARY OF THE LITERATURE REVIEW
CHAPTER 3: METHODOLOGY 
3.1 INTRODUCTION
3.2 SECTION A: METHODOLOGY AS ORIGINALLY PLANNED
3.2.1 Introduction
3.2.2 Research aim
3.2.3 Research Approach
3.2.4 Research Setting
3.2.5 Study Population
3.2.6 Phase 1 of the methodology as planned
3.2.7 Phase 2 of the methodology as planned
3.2.8 Phase 3 of the methodology as planned
3.2.8 Summary of the methodology as planned
3.3 SECTION B: PILOT STUDY
3.3.1 Phase 1- of the pilot study
3.3.2 Phase 2 – pilot study
3.3.3 Phase 3 of the Pilot study
3.3.4 Summary of methodological changes following the pilot study
3.4 METHODOLOGY AS IMPLEMENTED IN THE MAIN STUDY
3.4.1 Phase 1 – main study
3.4.2 Phase 2 – main Study
3.5 ETHICAL CONSIDERATIONS
3.6 SUMMARY
CHAPTER 4: RESULTS – PHASE 1 
4.1 INTRODUCTION
4.2 SECTION1: SOCIO-DEMOGRAPHIC AND INJURY PROFILE
OF PARTICIPANTS
4.2.1 Socio-demographic characteristics of the sample
4.2.2 Spinal cord injury and general health profile
4.2.3 Summary of the socio-demographic and Spinal Cord Injury data
4.3 SECTION 2: STATISTICAL ANALYSES OF THE INSTRUMENTS
4.3.1 Return to Normal Living Index (RNLI)
4.3.2 Spinal Cord Independence Measure (SCIM II)
4.3.3 Craig Hospital Inventory of Environmental Factors – short form
(CHIEF – SF)
4.3.4 Summary – instrument analysis
4.4 RELATIONSHIPS BETWEEN SOCIO-DEMOGRAPHIC DATA,
SCI DATA AND THE MEASURING INSTRUMENTS
4.4.1 Age, years of living with SCI, years of basic education and the
four instruments
4.4.2 Chi square tests of independence
4.4.3 Interrelationships among the measuring instruments
4.4.4 Mean comparisons across the measured variables
4.5 SUMMARY OF PHASE 1 RESULTS
CHAPTER 5: DISCUSSION OF PHASE 1 RESULTS 
5.1 INTRODUCTION
5.2 THE EPIDEMIOLOGY OF SCI
5.2.1 Socio-demographic profile
5.2.2 Spinal Cord Injury and general health profile
5.3 RELIABILITY AND VALIDITY OF THE MEASUR
INSTRUMENT
5.3.1 The Return to Normal Living Index (RNLI)
5.3.2 The Spinal Cord Independence Measure II (SCIM II)
5.3.3 The Craig Hospital Inventory of Environmental Factors – short form
(CHIEF-SF)
5.4 FACTORS ASSOCIATED WITH COMMUNITY PARTICIPATION
5.4.1 Personal factor
5.4.2 Disability Related Factors
5.4.3 Environmental factors
5.5 SUMMARY
CHAPTER 6: RESULTS AND DISCUSSION – PHASE 2 
CHAPTER 7: DISCUSSION OF THE STUDY FINDINGS, CONCLUSION, LIMITATIONS AND RECOMMENDATIONS 

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