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Aphasia and Communication in Everyday Life

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Aphasia and Communication in Everyday Life To my parents List of Papers This thesis is based on the following papers, which are referred to in the text by their Roman numerals. I Blom Johansson, M., Carlsson, M., & Sonnander, K. (2012). Communication difficulties and use of communication strategies: from the perspective of individuals with aphasia. International Journal of Language & Communication Disorders, 47(2), 144-155. DOI:10.1111/j.1460-6984.2011.00089.x II Blom Johansson, M., Carlsson, M., Östberg, P., & Sonnander, K. (2012). Communication changes and SLP-services according to significant others of persons with aphasia. Aphasiology, iFirst, 1-24. DOI:10.1080/02687038.2012.671927 III Blom Johansson, M., Carlsson, M., & Sonnander, K. (2011). Working with families of persons with aphasia: a survey of Swed- ish speech and language pathologists. Disability & Rehabilitation, 33(1), 51-62. DOI:10.3109/09638288.2010.486465 IV Blom Johansson, M., Carlsson, M., Östberg, P., & Sonnander, K. A multiple-case study of a family-oriented intervention practice in the early rehabilitation phase of persons with aphasia. Submitted. Reprints were made with permission from the respective publishers. Contents Prologue ........................................................................................................ 11 Introduction ................................................................................................... 13 Aphasia ..................................................................................................... 13 Definition, aetiology and natural course .............................................. 13 Psychosocial consequences of aphasia ................................................ 16 Communication ........................................................................................ 19 The importance of communication ...................................................... 19 Communication and its components .................................................... 20 Aphasia rehabilitation services ................................................................. 27 Different approaches of aphasia rehabilitation .................................... 27 Family-oriented SLP services .............................................................. 30 Current practice ................................................................................... 33 Rationale for this thesis ............................................................................ 35 Overall and specific aims .............................................................................. 36 Methods and materials .................................................................................. 37 Quantitative and qualitative research approaches .................................... 37 Research methods and designs ................................................................. 37 Study settings ........................................................................................... 38 Participants ............................................................................................... 39 Materials and procedure ........................................................................... 40 Study I .................................................................................................. 40 Study II ................................................................................................ 40 Study III ............................................................................................... 43 Study IV ............................................................................................... 44 Data analyses ............................................................................................ 47 Qualitative analyses (I, II, III, IV) ....................................................... 47 Statistical analyses (II, III) ................................................................... 48 Graphical analysis (IV) ........................................................................ 48 Ethical considerations .............................................................................. 48 Results ........................................................................................................... 50 Experiences of persons with aphasia (study I) ......................................... 50 Experiences of having conversations ................................................... 50 Managing communication difficulties ................................................. 50 Factors perceived to facilitate or hinder conversations........................ 52 Experiences of significant others (study II) ............................................. 52 Perceived changes in communication .................................................. 53 Experiences of SLP services ................................................................ 53 Opinions about SLP services ............................................................... 53 Differences between sub-groups .......................................................... 54 Experiences of speech-language pathologists (study III) ......................... 55 Family-oriented SLP services .............................................................. 55 Professional experience ....................................................................... 56 The intervention (study IV) ...................................................................... 56 Intervention format .............................................................................. 57 Material and measures ......................................................................... 57 Intervention content ............................................................................. 57 Intervention outcome ........................................................................... 58 Discussion ..................................................................................................... 60 Changes in everyday life conversations ................................................... 60 The use of communication strategies ....................................................... 63 Family-oriented SLP services .................................................................. 67 Significant others’ motivation to be involved in SLP services ............ 68 The intervention study ......................................................................... 69 Methodological considerations................................................................. 72 Rigour (II, III, IV) ................................................................................ 72 Trustworthiness (I, IV) ........................................................................ 74 Involving people with aphasia in research ........................................... 75 Conclusions and implications ................................................................... 76 Future research ......................................................................................... 78 Svensk sammanfattning (summary in Swedish) ........................................... 80 Bakgrund .................................................................................................. 80 Metod ....................................................................................................... 81 Resultat ..................................................................................................... 82 Slutsatser och förslag till åtgärder ............................................................ 84 Acknowledgement ........................................................................................ 85 References ..................................................................................................... 88 Abbreviations and definitions CP(s) Conversation Partner(s) CPT Communication Partner Training CS Communication Strategies DiK Participation in Conversation [Delak- tighet i Konversation] PwA(s) Person(s) with Aphasia SaS Estimation of Conversation Ability [Skattning av Samtalsförmåga] SLOF Svenska Logopedförbundet (the Swedish professional association and trade union) SiK Support in Conversation [Stöd i Konversation] SLP(s) Speech and Language Pathologist(s) SLP services Speech and Language Pathology services SO(s) Significant other(s) TPO Time post-onset (of aphasia) UAK Understanding of Aphasia and Com- munication [Uppfattning om Afasi och Kommunikation] VAS Visual Analogue Scale WHO World Health Organisation Communication strategies A generic term that includes Suppor- tive conversation strategies and Total communication strategies Supportive conversation strategies Communication strategies used by the conversation partner without aphasia Total communication strategies Communication strategies used by the person with aphasia Prologue In 1992, I took my first steps as a newly educated speech-language patholo- gist. Since then, I have been working with persons with aphasia in different settings and in different phases of rehabilitation. During all these years, I have met many significant others. Their importance for the everyday life of persons with aphasia has become increasingly evident to me. Professor Peter Währborg was a pioneer in the realm of family-oriented interventions of persons with aphasia1. During my pre-graduation studies, he emphasised the situation of family members of persons with aphasia and their need of sup- port. The everyday life situation of significant others of persons with aphasia and their need for knowledge and support became even
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