Living with an Acquired Brain Injury

Living with an acquired brain injury Barriers and facilitators to developing community supports as a basis for independent living, the experiences and perceptions of people with acquired brain injury Dalton, C., Kingston, A., Martin, A. M., O’Riordan, J., Caples, M. and Edwards, C. December, 2014 Table of Contents Executive Summary .................................................................................5 Chapter 1: Introduction ...........................................................................7 Background ................................................................................................................... 7 Acquired brain injury .................................................................................................. 7 Project aim .................................................................................................................... 8 Chapter 2: A review of the knowledge base of experiences of people with ABI living in the community ........................................................ 10 Introduction ............................................................................................................... 10 Construction of self ................................................................................................. 12 Barriers to re-integration ....................................................................................... 13 Support networks and community integration .................................................. 15 Understanding gender interactions and differences .......................................... 16 Family support ........................................................................................................... 17 Conclusion ................................................................................................................. 18 Chapter 3: Methodology ....................................................................... 20 Introduction ............................................................................................................... 20 Research aim ............................................................................................................. 20 Ethics ........................................................................................................................... 20 Sampling ...................................................................................................................... 20 Focus group demographics ..................................................................................... 21 Individual interview demographics ........................................................................ 23 Access and recruitment .......................................................................................... 23 Data collection .......................................................................................................... 24 Stage 1: Focus group data collection and analysis ......................................... 24 Stage 2: Individual Interviews ............................................................................. 24 Data analysis .............................................................................................................. 25 Limitations .................................................................................................................. 25 Chapter 4: Living with an Acquired Brain Injury: experiences, meanings and accessing community supports ................................... 26 Introduction ............................................................................................................... 26 Experiences, meanings and significance of natural community supports as a basis for independent living .................................................................................... 27 Understanding independence and interdependence .................................... 27 The role of transport in promoting independence ....................................... 29 The role of carers and independence .............................................................. 31 1 The influence of state support .......................................................................... 32 Influence of living arrangements in supporting independence .................... 33 The ‘moment’ of ABI: The need for natural community supports ............ 35 Transitioning from acute care services ........................................................... 37 Professional Supports .......................................................................................... 37 Acceptance of ABI ............................................................................................... 38 Accepting and living with the new normal: the role of natural community supports ................................................................................................................. 39 Strengthening relationships ................................................................................ 40 Weakening Relationships ................................................................................... 42 Reforming and developing new relationships................................................. 43 Gender and age considerations ........................................................................ 43 Changes in personality and relationships ........................................................ 44 Supports required and feelings of guilt ............................................................ 46 Arriving at a crisis point and accessing community support networks .... 47 Extending the support network: getting the balance right? ............................. 47 Promoting self-advocacy ..................................................................................... 49 Meaningful engagement in the community ..................................................... 50 Developing coping strategies ............................................................................. 51 Post formal support services? ........................................................................... 51 Community supports- where is the balance? ................................................. 52 Engaging with the wider public: Identifying and meeting challenges .............. 54 Poor public awareness of ABI ........................................................................... 54 Engaging in sports and leisure ........................................................................... 56 Employment and learning new skills ................................................................ 59 Financial issues ...................................................................................................... 61 Chapter 5: Discussion ............................................................................ 64 Introduction ............................................................................................................... 64 Experiences, meanings and significance of natural community supports as a basis for independent living .................................................................................... 65 A new type of normal ......................................................................................... 67 Facilitating independent living ............................................................................ 68 Extending the support network: getting the balance right? ............................. 70 Barriers to reintegration ......................................................................................... 71 Natural community supports ............................................................................ 71 2 Lack of public awareness .................................................................................... 72 Sport and leisure Interests ................................................................................. 73 Financial and employment constraints ............................................................. 74 Conclusion ................................................................................................................. 75 Recommendations ................................................................................. 78 References .............................................................................................. 80 Appendices ............................................................................................. 84 Appendix A: Introduction to Headway ............................................................... 84 Background to community based rehabilitation services ............................ 84 Overall census of clients using Headway services ........................................ 85 Appendix B: Focus Group Interview Schedule .................................................. 88 Appendix C: Individual Interview Schedule ......................................................... 89 Glossary of Terms .................................................................................. 90 List of Figures Figure 1: Natural community supports ............................................................................... 9 Figure 2: Age Profile of Focus Group Participants ......................................................... 22 Figure 3: Age Profile of Interview Participants ............................................................... 23 Figure 4: Predominant Causes of ABI for Clients of Headway ..................................

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