Susie Parr

Living with severe aphasia: Tracking social exclusion

Background: Little is known about what happens to people with severe aphasia in the years after stroke when rehabilitation comes to an end, or about day‐to‐day life for this group. Aims: This study aimed to track the day‐to‐day life and experiences of people with severe aphasia, and to document levels of social inclusion and exclusion as they occurred in mundane settings. Methods and Procedures: Ethnography was chosen as the qualitative methodology most suitable for studying the experience of people with profoundly compromised language. 20 people who were judged to have severe aphasia following stroke agreed to be visited and observed three times in different domestic and care settings. The observer documented environments, protagonists, events, and interactions. Field notes were elaborated with personal, methodological, and interpretative notes. Written material (for example information leaflets) was also documented and described. Data were subject to thematic analysis. Outcomes and Results: The study revealed how social exclusion is a common experience for this group, played out in a variety of ways in a range of domestic and care settings. Social exclusion occurs at infrastructural, interpersonal, and personal levels. Conclusions: The study suggests that the social exclusion of people who struggle to communicate could be addressed through training, for professional and lay carers, that promotes support for communication; opportunity and access; respect and acknowledgment; and attention to the environment.

Psychosocial aspects of aphasia: whose perspectives?

This paper reviews some different meanings of the term ‘psychosocial’ and identifies the different ways in which the social and psychological sequelae of aphasia can be explored. These include qualitative methods, which seem well suited to addressing such complex issues. Having outlined some features of qualitative research, the paper describes a study in which fifty people talked about the consequences and significance of their long-term aphasia. Their ‘insider perspective’ on aphasia suggests its impacts are extensive, complex, direct and indirect, interconnected, systemic, dynamic and diversely experienced. The paper discusses the various implications of the study for clinicians and researchers concerned with the psychosocial aspects of aphasia and outlines how some of the issues raised in the interviews might be addressed.

The Communication Partner Scheme: A project to develop long‐term, low‐cost access to conversation for people living with aphasia

Background: People with long‐standing aphasia and other stroke‐related impairments have difficulty accessing opportunities for conversation and social inclusion. This paper outlines the first 3 years of an ongoing project that has provided an innovative service for people with long‐standing aphasia who would not typically be accessing therapy or local support networks. We are grateful to the Henry Smith Charity who funded the first three years of this project. We would also like to thank the people with aphasia, referring therapists, and volunteers who contributed to the scheme and the ideas developed in this paper. Finally we acknowledge the work of the Aphasia Institute, Toronto, and Jon Lyon in inspiring the original idea for the project. Aims: The project aimed to set up, deliver, and evaluate a home‐based Conversation Partner Scheme to individuals with long‐term aphasia. Methods and Procedures: The paper reports on the processes involved in generating referrals, and recruiting, training, matching, and supporting the volunteer conversation partners who took part in the project. We report findings from 72 pairs of conversational partners who met for a period of 6 months. One member of each pair was a trained volunteer and the second was a partner with aphasia. Outcomes and Results: Informal evaluation of the project from the perspective of people with aphasia, referring therapists, and participating volunteers revealed a range of positive outcomes. These included changes in confidence and communication for people with aphasia, extension of long‐term service options for therapists, and development of communication and life skills for volunteers. Conclusions: This project shows how trained and supported volunteers can extend the services and opportunities for people living with ongoing aphasia. It offers an exciting means of implementing healthcare policy for people living with long‐term conditions.

Communication access to organisations: Inclusionary practices for people with aphasia

Background: When speech and language therapists/pathologists talk about inclusion, they are usually referring to a client being included in events outside the clinic or the organisation that provides the speech and language therapy services. This article describes ways in which those providing services for and with people with aphasia can work to involve service users in their own organisations. A communication access pathway to inclusion and user involvement in organisations is presented. This draws on established methods in the field, as well as on methods and underpinning frameworks that require a shift in views about the nature of service provision. The pathway involves (1) targeting situations in which the “business” of the organisation takes place and then (2) designing ways of achieving communication access to those situations. Aims: The overall aim is to present ways in which an organisation can become more communicatively accessible to service users with aphasia and communication disabilities. We describe a range of involvement contexts and communication access conditions at Connect, a charity in the UK, where we have attempted to increase the engagement and power of people with aphasia in our organisations business. Main contribution: In order to show how organisations can create more inclusive practice, we present some of our own projects. We describe four different contexts in our organisation that we targeted for inclusion: (1) making therapy choices, (2) delivering therapy services, (3) providing courses to service providers, and (4) employment practices. For each of these contexts we present methods used to support the involvement of people with aphasia. Some types of support are tried and tested methods arising out of established theories, others are newer to the field and require a shift in thinking and values. Conclusions: In order to attain authentic communication access for people with aphasia, service providers need to look beyond established theories and practices. The result, judging from anecdotal evidence as well as evidence from qualitative evaluation, suggests that creating communication access in a service organisation can serve as a powerful means for involving people with aphasia and in so doing can improve on the services provided to them.

Communication Access to Health and Social Services.

This article describes the efforts of a group of people in the United Kingdom at Connect—the communication disability network—to make health and social services more communicatively accessible to people with aphasia. The project involved listening to people with aphasia talk about their experiences with health and social care services and working with them to design a training program to promote communication access. The result is a communication access tool-kit that offers an organized way for service providers, together with their service users, to go about auditing and changing their services to make them more communicatively accessible.

Using partners' autobiographical reports to develop, deliver, and evaluate services in aphasia

Four women whose husbands had aphasia were asked to talk about their lives in several in-depth interviews. Themes from their accounts were used to plan, deliver, and evaluate a support course. Themes from their initial interviews were used to create a course plan containing skill training, provision of information, and discussion topics. Themes emerging from their reports during course discussions provided a means for participants to explore and problem-solve their current issues. Evaluation of the course was based on themes drawn from two post-course interviews. Findings suggest that (1) aphasia affected these four participants differently, (2) themes from autobiographical reports were useful in planning content of a course to assure its relevance, (3) issues raised by participants during the course served to assure course relevance in its delivery, and (4) autobiographical descriptions offered a way of discovering whether and how the course experience had an ongoing impact on the lives of the participants. It is concluded that the collection and analysis of autobiographical reports provide an effective way to design, deliver and evaluate learning in a support course for partners of those with aphasia.

‘Pick me up and not a down down, up up’: how are the identities of people with aphasia represented in aphasia, stroke and disability websites?

Suddenly acquiring a permanent impairment means a person must learn to think differently (Frank, 1995), and he or she does so partly by telling stories. The most commonly told illness narratives are ‘restitution’ narratives. People with aphasia (a communication impairment commonly following stroke) surfed aphasia, stroke and disability websites, read the personal stories attached to them, and created their own narratives in response. Charitable and disability‐related websites excluded people with aphasia through their tone, content and narrative ‘voice.’ Engagement with some websites was contingent on subscribing to a specific perspective on aphasia. Personal narratives attached to charitable websites were seen to reflect the organisational stance. In particular, idiosyncracies of aphasic language were often eliminated. When participants constructed their own web pages they replicated the stylistic traits that had previously been criticised. Identities are mercurial and difficult to pinpoint. Further work with people with aphasia using videoclips, soundclips and other non‐text‐based techniques to create illness narratives is planned.

The Science or Sciences of Aphasia

Publisher Summary This chapter explores the question of whether qualitative methodologies can make a contribution to science of Aphasia. It suggests that there is a wide range of sciences that is drawn upon the exploration of the causes and nature of aphasia, its impacts, and the issues faced by those who live with it. It also discusses the methodologies required by these sciences, emphasizing its role, alongside quantitative methods, of qualitative research methods in exploring some aspects of aphasia and the issue of judging the quality and rigor of all research methods, and the implications of new, explicit standards for judging the quality of research. Based on this understanding, it indicates that the methodologies used by researchers may need to respond to the research questions being prioritized by the consumers of that research. Furthermore, it illustrates the use of qualitative research by demonstrating how the outcomes of qualitative research that are undertaken have challenged the concepts of intervention in aphasia. Finally, it illustrates a case study to describe how a man with aphasia uses therapy to challenge the concepts of intervention, highlighting the critical relationship between identity, language, and communication for people with aphasia.

Working from a modus operandi: Themes, changes, and parallels in research and clinical practices

Researchers and clinicians in the field of speech-language therapy/pathology are continuously making choices about what to do and how to do it. These choices, made by individuals at different times about different methods, are not likely to be isolated from one another. Rather, it should be possible to discern strong parallels that reveal an identifiable working style or pattern. Indeed, commonly experienced intuitions support this view. It is not unreasonable, for example, to think about the working style or interests of a particular researcher or clinician. Such considerations about a person’s way of working would suggest that there exists a commonality across that person’s activities that could be identified as their “modus operandi”. Although there has been considerable attention paid to examining and evaluating isolated research and clinical methods, the modus operandi of particular researchers, clinicians, or agencies has yet to be studied. We might expect that we could find someone’s research modus operandi by examining what questions are addressed over time and how he or she has gone about answering them. We could also expect that a clinician’s modus operandi could be discernable by examining the person’s choices of methods and how they are implemented. Finally, judging from our knowledge of service provided in group practices we might even expect to find a modus operandi operating when members of service agencies make group decisions about what sorts of services