1 Use of Q-methodology to identify clinical psychologists’ attitudes towards genetic research affecting people with intellectual and developmental disabilities A thesis submitted to the University of Manchester for the degree of Doctorate of Clinical Psychology in the Faculty of Medical and Human Sciences 2013 CATHERINE ANN VAHEY School of Psychological Sciences, Division of Clinical Psychology 1 The New Genetics and Clinical Psychology List of Contents List of Appendices ....................................................................................................... 7 List of Tables................................................................................................................ 8 List of Figures .............................................................................................................. 9 Abstract ...................................................................................................................... 10 Declaration ................................................................................................................. 11 Copyright Statement .................................................................................................. 12 Acknowledgements .................................................................................................... 14 Chapter 1: Introduction .............................................................................................. 15 1.1 Study Overview .................................................................................................... 15 1.2 A Note on Terminology/Definition of IDD ......................................................... 18 1.3 Genetic Advances................................................................................................. 19 1.3.1 Molecular genetic technology and concepts ..................................................... 20 1.3.2 Behavioural phenotypes and diagnosis ............................................................. 22 1.3.3 Genetic screening and testing ........................................................................... 26 1.3.4 Genetic advances: section summary ................................................................. 28 1.4 History of Intellectual and Developmental Disabilities ....................................... 28 1.4.1 People with IDDs in history .............................................................................. 28 1.4.2 Societal changes and the impact on people with IDDs ..................................... 30 1.4.3 History of IDD: section summary ..................................................................... 32 1.5 History of Eugenics .............................................................................................. 32 1.5.1 Legacy of eugenics ............................................................................................ 35 1.6 Clinical Psychology and Intellectual and Developmental Disabilities ................ 36 1.6.1 Origin of clinical psychology ........................................................................... 37 2 The New Genetics and Clinical Psychology 1.6.2 Clinical psychology and IDD ............................................................................ 38 1.6.3 Clinical psychology and IDD: section summary .............................................. 41 1.7 Q methodology ..................................................................................................... 42 1.7.1 Background of Q methodology ......................................................................... 42 1.7.2 Characteristics of Q methodology ..................................................................... 44 1.7.3 Rationale for use of Q methodology ................................................................. 44 1.8 Purpose of the Current Study ............................................................................... 47 Chapter 2: Method ..................................................................................................... 48 2.1 Method Overview ................................................................................................. 48 2.2 Ethical Approval .................................................................................................. 48 2.3 Study Design ........................................................................................................ 48 2.4 Exploration of the Q-concourse ........................................................................... 49 2.4.1 Themes from the literature ................................................................................ 50 2.4.2 Interviews .......................................................................................................... 50 2.5 Development of the Q-set .................................................................................... 51 2.5.1 Pilot of the Q-set ............................................................................................... 53 2.5.2 Personal reflection on the development of the Q-set ........................................ 54 2.6 Development of the Q-sort Task Materials .......................................................... 55 2.6.1 The Q-set ........................................................................................................... 55 2.6.2 Guide bar ........................................................................................................... 55 2.6.3 Score sheet ........................................................................................................ 55 2.6.4 Narrative instruction script ................................................................................ 56 2.6.5 Written explanation of terms ............................................................................. 56 3 The New Genetics and Clinical Psychology 2.7 Identification and Recruitment of Participants (P-set) ......................................... 58 2.7.1 Inclusion criteria................................................................................................ 58 2.7.2 Exclusion criteria .............................................................................................. 59 2.7.3 Sample size........................................................................................................ 59 2.7.4 Recruitment ....................................................................................................... 60 2.8 Conducting the Q-sorts ........................................................................................ 60 2.8.1 Venues and environmental conditions .............................................................. 60 2.8.2 Obtaining informed consent .............................................................................. 60 2.8.3 Initiating the Q-sort process .............................................................................. 61 2.8.4 Completing the Q-sort process .......................................................................... 61 2.8.5 Demographic details.......................................................................................... 63 2.9 Data Handling and Confidentiality ...................................................................... 64 2.10 Data Analysis ..................................................................................................... 65 Chapter 3: Results ...................................................................................................... 66 3.1 Participant Information ........................................................................................ 66 3.2 Q-sort Process ...................................................................................................... 66 3.3 Statistical Analysis ............................................................................................... 67 3.4 Factor Analysis .................................................................................................... 68 3.4.1 Factor loadings .................................................................................................. 69 3.4.2 Factor demographics ......................................................................................... 71 3.4.3 Factor arrays ...................................................................................................... 73 3.5 Distinguishing and Consensus Statements ........................................................... 78 4 The New Genetics and Clinical Psychology 3.6 Factor Descriptions and Interpretations ............................................................... 79 3.6.1 Factor 1: Integration of social and medical models of disability ...................... 80 3.6.2 Factor 1: Positive exemplary statements ........................................................... 81 3.6.3 Factor 1: Negative exemplary statements ......................................................... 83 3.6.4 Factor 2: Social model of disability is more helpful ......................................... 86 3.6.5 Factor 2: Positive exemplary statements ........................................................... 87 3.6.6 Factor 2: Negative exemplary statements ......................................................... 89 3.6.7 Factor 3: Genetic advances are positive but can create conflict with recognising the value of people with IDDs ................................................................................... 93 3.6.8 Factor 3: Positive exemplary statements .........................................................