Communication Guide Support for Western Australians with Deafblindness: A Pilot Project

6 Chapter 1 Background. 7 Part 1: Understanding Deafblindness. 7 Definition of deafblindness. 7 Classifications of deafblindness. 8 Prevalence and incidence of deafblindness. 8 Impact of deafblindness. 14 Economic cost of deafblindness in Australia. 17 Funding and services available to adults who are deafblind in Western Australia. 17 Funding and services available to adults who are deafblind in Australia. 18 International deafblind services and training programs. 19 Recommendations for meeting the growing needs of the deafblind population. 25 Impact of specialist deafblind services. 25 Part 2: Quality of Life, Person-Centred Approaches and Occupational Justice. 27 Quality of life. 27 Person-centred approaches. 30 Occupational justice. 34 Chapter 2 Research Methodology . 40 Objective of the Study. 40 Case Study Research Method. 40 Key Stages of the Study. 42 Recruitment of the participants. 42 Recruitment of communication guides. 43 Implementation of the intervention. 45 Methods of Data Collection. 46 Quantitative assessments. 47 interRAI Community Health Assessment and Deafblind Supplement. 47 Canadian Occupational Performance Measure. 48 SF-36 Health Survey (Version 2) . 49 Data checking of quantitative assessments. 50 Data analysis of quantitative assessments. 50 Qualitative assessment. 51 Data checking of qualitative assessment. 52 Data analysis of qualitative assessment. 52 IMPACT OF COMMUNICATION GUIDE SUPPORT 4 Ethical Issues. 53 Storage and Security. 53 Chapter 3 Results. 54 Case Studies. 54 Case study A. 54 Case study B. 57 Case study C. 60 Case study D. 64 Case study E. 67 Case study F. 70 Case study G. 73 Case study H. 76 Case study I. 78 Case study J. 81 General Demographic Summary. 84 Age. 84 Residential status. 85 Age of onset of vision loss . 85 Diagnosis related to the vision loss . 85 Visual acuity range and visual field diameter . 86 Age of onset of hearing loss . 86 Diagnosis related to hearing loss . 86 Type of assistive devices or supports used by participants . 86 Analysis of Qualitative Findings. 87 Support provided by communication guides. 88 Connections and networks. 92 Quality of life. 95 Challenges. 98 Participant positive feedback on communication guide services. 102 Personal characteristics. 104 Goals and desires. 106 Occupation. 107 Person-centred approach. 109 Quantitative Assessment Results – average aggregate pre-post comparison. 109 interRAI Community Health Assessment and Deafblind Supplement. 110 Canadian Occupational Performance Measure . 111 SF-36 Health Survey (Version 2) . 111 IMPACT OF COMMUNICATION GUIDE SUPPORT 5 Chapter 4 Discussion. 112 How was the quality of life of the participants affected? 112 How was the occupational performance of the participants affected? 118 What aspects of the communication guide support did the participants value? 121 What aspects of the communication guide support did the participants not value? 123 Chapter 5 Conclusion. 126 Recommendations. 128 References. 130 Appendix 1. Competencies for Training Interveners to Work with Children and Students with Deafblindness – Standards . 141 Appendix 2. Participant Information Sheet. 142 Appendix 3. Consent Form. 143 Appendix 4. Approval memorandum from Curtin University Human Research Ethics Committee . 146 Appendix 5. Statistical analysis of the interRAI Community Health Assessment and Deafblind Supplement . 147 Appendix 6. Statistical analysis of SF-36. 150 Appendix 7. Statistical analysis of Canadian Occupational Performance Measure. 151 IMPACT OF COMMUNICATION GUIDE SUPPORT 6