Amyotrophic Lateral Sclerosis Severity Scale: Speech Scale

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INTRODUCTION

This chapter provides an orientation to the research. It encompasses background information, the purpose of the research, definitions of terms used within the context of the research, an explanation of the abbreviations used and, finally, an outline of the each of the chapters in the study.

BACKGROUND

The diagnosis of an acquired illness such as Motor Neuron Disease (MND) during adulthood has a dramatic effect on the physical and psychosocial well-being of the individual. Progressive muscular weakness experienced by the person with MND impacts on his/her ability to walk, perform activities of daily living, speak, to swallow and eventually to breathe independently. The performance of social roles and responsibilities therefore has to be greatly modified or abandoned by the individual, as these roles and duties formerly fulfilled with ease can no longer be performed. Relinquishing important life roles (such as breadwinner, homemaker, active family member, and spouse) inevitably create an imbalance among these roles. The resultant excessive commitment to one role may be detrimental to the feelings of psychosocial well-being of the individual. Depression, low self-esteem, anxiety and hopelessness are frequently reported in the literature as impacting on the psychological well-being of persons with MND. In addition, anecdotal reports by persons with MND highlight decreased satisfaction in social interaction as a result of declining communication abilities.

Marital communication

The positive relationship between communication and a good marital relationship has been established as marital communication involves the critical ability of both members of the couple to listen to and understand each other, and ultimately express themselves clearly and accurately (Beach & Arias, 1989; Kahn, 1970; Navran, 1967).

Motor Neuron Disease

Motor Neuron Disease (MND) is an adult onset, progressive, degenerative neurological disease of unknown etiology that affects the motor neurons of the brain and spinal cord. (Kotchoubey, Lang, Winter, & Birbaumer, 2003). The types of MND are categorized as either bulbar (brainstem and upper motor neurons), spinal (lower motor neurons) or mixed (bulbar and spinal cord involvement).

ACKNOWLEDGEMENTS
ABSTRACT
1. ORIENTATION
1.1 INTRODUCTION
1.2 BACKGROUND
1.3 DEFINITION OF TERMS
1.4 ABBREVIATIONS
1.5 CHAPTER OUTLINES
1.6 SUMMARY
2. LITERATURE REVIEW AND PROBLEM STATEMENT
2.1 INTRODUCTION
2.2 DESCRIPTION Of MND
2.3 THE IMPACT OF MND ON THE INDIVIDUAL
2.3.1 Physical abilities
2.3.2 Communication abilities
2.3.2.1 Speech intelligibility
2.3.2.2 Communication effectiveness
2.3.2.3 Speech intelligibility and communication effectiveness
2.3.3 Social roles
2.3.4 Psychosocial impact
2.4 IMPACT OF MND ON THE MARITAL RELATIONSHIP
2.4.1 Experiences of the spouses
2.4.2 Moderating effect of communication in marriage
2.4.3 Impact of negative life events on marital communication
2.5 SUMMARY
3. RESEARCH METHODOLOGY
3.1 INTRODUCTION
3.2 METHODOLOGY
3.2.1 Main research aim
3.2.2 Sub-aims
3.3 RESEARCH DESIGN
3.3.1 Research design
3.3.2 Research phases
3.4 DEVELOPMENTAL PHASE
3.4.1 Factor analysis: Primary Communication Inventory
3.4.2 Pilot Study
3.4.2.1 Objectives
3.4.2.2 Context and participants
3.4.2.3 Procedures
3.4.2.4 Results and recommendations
3.4.2.5 Summary
3.4.3 Participant selection and description
3.4.3.1 Participant selection
3.4.3.2 Selection criteria
3.4.3.3 Descriptive information on participants
3.5 MAIN STUDY
3.5.1 Equipment and Measuring instruments
3.5.1.1 Equipment
3.5.1.2 Measuring Instruments
i. Disease progression
a. Classification on MND
ii. Communication abilities and speech intelligibility
a. Amyotrophic Lateral Sclerosis Severity Scale: Speech Scale
b. Sentence Intelligibility Test
c. Modified Communication Effectiveness Index
iii. Marital relationship
a. Primary Communication Inventory
b. Inclusion of Others in the Self Scale
3.5.2 Data collection procedures
3.5.2.1 Ethical considerations
3.5.2.2 Specific considerations
3.5.2.3 Procedures
3.5.2.4 Data analysis and statistical procedures
3.6 SUMMARY
4. RESULTS AND DISCUSSION
4.1 INTRODUCTION
4.2 INTERRATER RELIABILITY
4.3 DISEASE PROGRESSION
4.4 COMMUNICATION ABILITIES ACROSS THE DISEASE PROGRESSION
4.4.1 ALSSS: Speech Scale
4.4.2 Speech intelligibility and speaking rate
4.4.3 Communication effectiveness
4.4.4 Speech intelligibility and communication effectiveness
4.4.5 Communication efficiency ratio and communication effectiveness
4.5 MARITAL COMMUNICATION
4.5.1 Primary Communication Inventory
4.5.2 Inclusion of Others in the Self Scale
4.6 SPEECH INTELLIGIBILITY AND MARITAL COMMUNICATION
4.7 CONCLUSION
5. CONCLUSIONS AND RECOMMENDATIONS
5.1 INTRODUCTION
5.2 OVERVIEW OF THE RATIONALE AND SUMMARY OF RESULTS
5.3 EVALUATION OF THE STUDY
5.4 CLINICAL IMPLICATIONS
5.5 RECOMMENDATIONS FOR FUTURE RESEARCH
5.6 SUMMARY