Addressing the long-term impacts of aphasia: how far does the Conversation Partner Programme go?

• Published in: Aphasiology Vol. 29; no. 8; pp. 889 - 913
• Main Authors: Mc Menamin, Ruth, Tierney, Edel, Mac Farlane, Anne
• Format: Journal Article
• Language: English
• Published: Abingdon Routledge 03-08-2015; Taylor & Francis Ltd
• Subjects: Aphasia; Conversation; conversation approaches; Data processing; emic; Emotions; impacts; insider; Interpersonal communication; Interpersonal relations; participatory health research; qualitative; Qualitative research; Research methodology; Social exclusion; Social factors; Stroke; Verbal communication; United Kingdom > UK; Ireland
• ISSN: 0268-7038; 1464-5041
• DOI: 10.1080/02687038.2015.1004155

Background: Approximately 176,000 new individuals in the United Kingdom and Ireland are diagnosed with stroke annually with up to one third experiencing aphasia. Qualitative research methods are increasingly used to capture the complexity of service users' experiences of health and illness; however, the voice of service users with aphasia continues to be limited in published healthcare literature. This participatory research study included people with aphasia as co-researchers in the exploration of aphasia and a Conversation Partner Programme (CPP).
Aims: To describe participants' insider (emic) experiences of (1) aphasia and (2) a CPP.
Methods & Procedures: Following a pilot study, the generation and analysis of qualitative data involved a Participatory Learning and Action (PLA) approach based on the interpretive paradigm. Using purposeful sampling, participants included people with aphasia (n = 5) who had experience of the CPP. Through (n = 5) 3-hr data generation sessions across 12 months using PLA techniques-Flexible Brainstorming and Card Sort-participants' unique perspectives of aphasia and the CPP were recorded. The principles of thematic analysis guided the co-analysis of data with participants. To explore transferability of findings, data generated in Ireland were presented to an international interstakeholder group in Connect UK.
Outcomes & Results: Participants identified eight themes describing the lived experience of aphasia including (1) Back to Pre-School, (2) Tiredness, (3) It's Like in Prison, (4) Emotions, (5) Not Able to Talk the Words, (6) Escape, (7) Changing and Adapting, and (8) Family. Five additional themes were co-generated capturing the value of the CPP. It appeared that because the CPP training and programme acknowledged the expertise of individuals with aphasia and provided opportunities for conversations with unfamiliar people, the negative feelings of communicative incompetence described in "Back to Pre-School" and "Not Able to Talk the Words" were minimised. Feelings of marginalisation captured in "Escape," "It's Like in Prison," and "Emotions" were reported to be reduced through the social aspects of the programme.
Conclusions: Aphasia changes communication situations and interpersonal relationships often resulting in psychosocial impacts and disempowerment. The CPP contributed to promoting successful communication and reducing social exclusion. Participants reported transformative experiences related to identity, independence, and confidence. These outcomes are encouraging as marginalisation and vulnerability to "secondary handicap" are recognised long-term risks of aphasia. Findings will be of interest to those living and working with people with aphasia and to those designing, delivering, and participating in CPPs.