Title of the Thesis

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A Mobile Augmented Memory Aid for People with Traumatic Brain Injury A thesis submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Computer Science at The University of Waikato by Su-Ping Carole Chang Department of Computer Science Hamilton, New Zealand January, 2017 © 2017 Su-Ping Carole Chang Dedicated to My Parents Abstract Traumatic Brain Injury (TBI) occurs when an external mechanical force traumatically injures the brain. The 2010/2011 population-based study shows that the total incidence of TBI in New Zealand has increased to 790 per 100,000 population. Memory impairment is the most common symptom and affects most TBI survivors. Memory impairments result- ing from TBI take many forms depending on the nature of the injury. Existing work to use technology to help with memory problems focuses predominantly on capturing all information digitally to enable ‘replaying’ of memories. Other software applications (like calendar that reminders) are designed to assist the average people tracking their schedules. Both are inadequate for supporting TBI survivors. The aim of this research is to build an augmented autobiographical memory system for a mobile device for supporting TBI survivors with their memory problems. I address the lack of information about TBI survivors’ use of digital aids through user studies and interviews. This research includes three studies. The first study is the interview user study, which aims to investigate TBI survivors’ use of their own memory aids/strategies to cope with difficulties caused by memory impairments. The results contribute to develop the conceptual design of the prototype. The second study is the interface user study, which aims to examine the usability of the conceptual design. Findings from this study provide the data and feedback for structuring the implementation of the MyMemory prototype on a mobile device. MyMemory is an augmented autobiographical memory aid specialized for TBI survivors with memory impairments. According to the results from the interface user study, we develop the implementation of the MyMemory prototype. v The third study aims to evaluate the effectiveness of MyMemory for improving autobiographical memory for people with TBI. This evaluation study is based on the ABAB case study used in psychology which can provide more accurate outcomes about the evaluation of MyMemory. vi Acknowledgements Firstly, I would like to express my sincere gratitude to my two main supervisors, Annika Hinze and Judy Bowen for the continuous support of my research, for their patience, motivation, and immense knowledge. Their guidance helped me all the time in this of research as well as writing of this thesis. Many thanks also to Nicola Starkey, the second member of my supervisory panel, for guiding my research and helping me to develop my background in psychology. Besides my supervisors, I would like to thank participants of my research, for their participation, suggestions and encouragement to im- prove my research from various perspectives. Without them this research would not be possible. Special thanks goes to Ella Scheepers and Marion Baird from Think! (the head injury society in Hamilton, NZ) for promoting this research and helping to recruit participants. I also thank everyone who discussed my research with me, in the Com- puter Science department and at conferences. Past and present members of the ISDB (Information System & Databases, University of Waikato) group through the years provided constructive criticism and opportuni- ties for discussion; thank you all. In particular I would like to thank Michael Rinck and Mumraiz Kasi: working with you guys has been a great experience. I also want to extend my special thanks to Margaret Lyn Carlyon, for her comments and suggestions on writing this thesis. My sincere thanks to all of my friends, especially to Celia Lai, Chris- tine Yang, Janet Chang and Mitty Liu for believing in me and remaining positive through all of the ups and downs of my research. Finally, I wish to express my heartfelt gratitude to my family. To my adorable parents; Ben and Amy who have the overwhelming love and vii support. To my siblings; Cindy, Coco and Benson who help and encourage me. To my lovely dog; Maggie which walks with me every morning to clear my mind. I could not have done this without you all. viii Contents 1 Introduction1 1.1 Motivation............................2 1.2 Objective and Hypothesis...................3 1.3 Research Questions.......................4 1.3.1 Question 1: What kind of memories do TBI survivors remember or forget?..................5 1.3.2 Question 2: How can a mobile system help TBI survivors remember?....................6 1.3.3 Question 3: What kind of special requirements do TBI survivors have for the design of an augmented memory aid?..........................7 1.3.4 Question 4: What kind of information display will TBI survivors accept?....................7 1.3.5 Question 5: Can memory training using a mobile system make a difference for TBI survivors?.......8 1.4 Structure of this Thesis....................8 2 Background 11 2.1 Cognitive Psychology...................... 11 2.1.1 The Structure and Function of the Brain....... 12 2.1.2 The Effects of Brain Damage on Cognition...... 15 2.2 Memory............................. 16 2.2.1 Memory Process..................... 16 2.2.2 Three Store Model of Memory............. 18 ix Contents 2.2.3 Sensory Memory..................... 20 2.2.4 Short-term Memory................... 22 2.2.5 Long-term Memory................... 26 2.2.6 Memory and TBI..................... 32 2.3 Traumatic Brain Injury..................... 33 2.3.1 Epidemiological Literature............... 34 2.3.2 Symptomatology..................... 37 2.3.3 Social Issues....................... 40 2.3.4 Treatment........................ 41 2.4 Comparing TBI with Alzheimer’s Disease.......... 42 2.5 Discussion............................ 43 2.5.1 Memory Box Concept.................. 44 2.5.2 Memory Box Concept with TBI............. 45 2.5.3 Memory Box Concept with AD............. 45 2.6 Summary............................. 47 3 Related Work 49 3.1 Research of Cognitive Psychology............... 49 3.1.1 Digital Aids for TBI................... 50 3.2 Research of Computer Science................ 53 3.2.1 Digital Aids for AD.................... 53 3.2.2 Digital Aids for TBI................... 58 3.2.3 Digital Aids for Augmented Autobiographical Memory 61 3.3 Discussion............................ 66 3.4 Summary............................. 67 4 Interview User Study 69 4.1 Goal of the Study........................ 70 4.2 Method.............................. 70 4.2.1 Recruitment....................... 71 4.2.2 Potential Participants.................. 72 4.2.3 Semi-structured Questionnaire............ 72 x Contents 4.3 Procedure............................ 74 4.4 Apparatus and Materials.................... 75 4.5 Participants........................... 76 4.5.1 TBI-participants..................... 76 4.5.2 Caregiver-participants................. 79 4.6 Results.............................. 79 4.6.1 Symptoms........................ 79 4.6.2 Particular Memory Problems.............. 80 4.6.3 Coping Strategies.................... 83 4.6.4 Factors of Memory.................... 88 4.7 Extra User Study........................ 90 4.8 Discussion............................ 91 4.8.1 Memory Impairments and other Symptoms and Issues 92 4.8.2 Memory Strategies................... 93 4.8.3 Technology Experience................. 94 4.8.4 Factors of Memory.................... 95 4.8.5 Features of Application................. 98 4.9 Summary............................. 99 5 Conceptual Design of MyMemory 105 5.1 Interaction Personas and Scenarios.............. 106 5.1.1 Personas......................... 106 5.1.2 Scenarios......................... 107 5.2 Concepts and Features of MyMemory............ 109 5.2.1 Concepts of MyMemory................. 109 5.2.2 Features of MyMemory................. 111 5.3 Paper Prototype of MyMemory................ 112 5.3.1 Memory.......................... 114 5.3.2 History.......................... 116 5.3.3 Display.......................... 117 5.3.4 Settings.......................... 118 5.4 Expert Walkthrough of MyMemory.............. 119 5.4.1 Using Activities to Describe Functions........ 120 xi Contents 5.4.2 Pagination vs Long List for Adding Memory..... 120 5.4.3 Pop-up Window for Confirmation........... 121 5.4.4 Save Button in Adding Memory............ 121 5.4.5 FlashCard Added as Training Option......... 121 5.5 Digital Paper Prototype of MyMemory............ 122 5.5.1 Main Screen....................... 122 5.5.2 Adding Memory..................... 122 5.5.3 My Memories....................... 125

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