Psychosocial Aspects of Aphasia: Whose Perspectives?

Parr, Susie

doi:10.1159/000052681

Cited by 67 publications

(90 citation statements)

References 25 publications

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“…14,66,67 Patients have also been reported to experience uncertainty about the expected trajectory of recovery and possible implications. 46,63,68 Similar findings have been reported in relation to aphasia 69 and eating disabilities following stroke. 43,70 Other studies have focused on the specific problems of loss of ability to drive, 71 and the problems of returning to the work force, particularly for younger people.…”

Section: Life After the Acute Eventsupporting

confidence: 81%

Qualitative Studies of Stroke

McKevitt

Redfern

Mold

et al. 2004

Stroke

212

204

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Background and Purpose-Qualitative studies are increasingly used to investigate social processes and phenomena influencing health behaviors and service provision. We aimed to identify the scope of published qualitative studies of stroke, consider their relevance to development and delivery of services for people with stroke, and make recommendations for future work. Methods-Literature review of published articles was identified by systematically searching online literature databases using keywords from the start of each database until 2002. Articles were reviewed by 2 authors, using a standardized matrix for data extraction. The 2003 European Stroke Initiative recommendations for stroke management were used to categorize the literature for consideration of its contribution to stroke research. Results-We included 95 articles. Their empirical contribution includes an emphasis on recording the "human" experience of stroke; identification of needs as perceived by patients and their families, differences in priorities between patients and professionals, and barriers to best-quality care. We identified 12 papers that were specifically undertaken to develop or evaluate interventions. Conclusions-Qualitative studies have addressed a wide range of issues related to the impact of stroke on individuals and caregivers, and to the organization and delivery of services. Significant problems remain in ensuring the delivery of best-quality stroke care, which such studies have the potential to address. Maximizing this potential requires greater collaboration between nonclinical and clinical scientists, service providers, and users to formulate research questions of interest as well as new research strategies, such as meta-analysis, to pool qualitative research findings and multisited investigations. Key Words: qualitative research Ⅲ caregivers Ⅲ delivery of health care Ⅲ evaluation studies Ⅲ quality of health care Ⅲ stroke T he relevance of social science research for medical practice has long been recognized. 1 Studies conducted using qualitative methods, which are drawn from the social sciences, are now commonly advocated and used in health and healthcare research. 2 The aim of qualitative research is to understand social processes and behaviors (such as responses to disease or the organization of health services) in natural rather than experimental settings, and from the perspective of participants. Specific methods used include unstructured or semistructured interviews, focus group interviews, and ethnographic observation. These methods tend to generate textual rather than numerical data, and their analysis entails identifying meanings and developing concepts, but not measuring frequency. Studies using a variety of qualitative research methods have investigated social factors that influence the delivery and uptake of a wide range of health services.Qualitative research is undertaken by researchers from a variety of disciplines, and reports may be published in journals not widely read outside the discipline concerned. The aim...

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Section: Life After the Acute Eventsupporting

confidence: 81%

Qualitative Studies of Stroke

McKevitt

Redfern

Mold

et al. 2004

Stroke

212

204

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“…Investigations using qualitative designs have been regarded as having insufficient precision, objectivity, and rigour. However, qualitative research designs are attracting interest within aphasiology and may prove to be better suited to capture the complexity of communication processes and the contexts in which they occur (Damico & SimmonsMackie, 2003;Kearns, 1999;Lyon, 1999;Parr, 2001). This paper has suggested that the qualitative case study design is a viable research tool to study the psychosocial consequences of aphasia.…”

Section: Implications and Conclusionmentioning

confidence: 99%

Discussion The case for qualitative case study methodology in aphasia: An introduction

Sorin-Peters

2004

Aphasiology

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Background: Qualitative research methods are still largely untapped, but research has shown that they are appropriate for capturing the complexity of the psychosocial consequences of aphasia. While``single case'' research in various guises has been widely utilised, the qualitative case study research design has had quite limited application to the study of aphasia. Aims: The aim of this paper is to outline the characteristics of the qualitative case study research design and to discuss potential applications of this methodology to research of the psychosocial consequences of aphasia. Main Contribution: An overview of the qualitative case study design is presented. The aspects described include case selection, data collection, data analysis, and methods to enhance trustworthiness. Conclusions: It is concluded that qualitative case study research allows the study of complex communication behaviours in context. Its end product is a holistic and intensive description and interpretation of communication. It can answer questions related to how and why communication changes after intervention programmes that address the psychosocial consequences of aphasia. This methodology appears to offer great promise in making significant contributions to the knowledge base and practice of speech-language pathology with adults and families with aphasia.

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“…Leisure and recreation activities are often described as the most disturbed activities after stroke and aphasia (Dalemans et al, 2008;Hinckley, 2002;Le Dorze & Brassard, 1995;Parr, 2001), both in terms of affected social activities and contacts, as well as interactions and social relationships. All participants reported restricted activities, which have important implications for stroke and aphasia long-term recovery given the role of social engagement in healthy living and wellbeing (Cruice et al, 2003).…”

Section: Activities Limitations / Participation Restrictionsmentioning

confidence: 99%

Consequences of stroke and aphasia according to the ICF domains: Views of Portuguese people with aphasia, family members and professionals

2014

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This is the accepted version of the paper.This version of the publication may differ from the final published version. Background: Addressing the long-term consequences of stroke is a top-ten research priority (Pollock, St George, Fenton, & Firkins, In Press), and understanding the views of different stakeholders is essential in designing appropriate patient-centred multidisciplinary rehabilitation. Permanent repository linkAims: This study reports on the perspectives of 38 individuals who live with or work with aphasia: people with aphasia (PWA), family members and friends (FM), and speech and language therapists (SLTs), about its consequences in the daily lives of people with aphasia. Method & Resources:Fourteen PWA, 14 FM, and 10 SLTs participated in the study. All participants were interviewed about the consequences of stroke and aphasia. Small focus groups were used with some participants. In-depth semi-structured interviews were used with other participants. Interviews were carried out in groups or individually in order to accommodate severe aphasic impairments, or respondents with fewer years of education. Interviews were video or audio-recorded. Verbal and non-verbal communication was transcribed and analysed qualitatively using content analysis. Data was coded and mapped onto the ICF framework. Outcomes & Results:All three groups reported consequences in Body Functions and Body Structures, primarily in Mental Functions (Specific Mental Functions and Global Mental Functions) Conclusions: PWA, FM and SLTs reported a considerable range of stroke and aphasia consequences in the daily life of those who live with it. They were concerned to different degrees with language, physical, and emotional changes, and impact on communication, mobility, self-care, relationships, leisure and work. Professionals' practices in Portugal need to be changed in order to consider these findings.Keywords: aphasia; consequences; ICF; family members; clinicians. INTRODUCTION BackgroundStroke is considered the third leading cause of death and permanent disability in developed countries (Direcção Geral de Saúde (DGS) -Portuguese "Central Health Agency" 2010). In Portugal, stroke is the first cause of death (DGS, 2008) and disability (DGS, 2010;Martins, 2006) and is therefore one of the most frequent diseases causing hospitalisation (Ferro & Pimentel, 2006). Aphasia is a common consequence of stroke, affecting one third of the stroke population (Darrigrand et al., 2011;Kelly, Brady, & Enderby, 2010), and has a significant onward impact on people's lives (Martin, Thompson, & Worrall, 2008). Addressing the long-term consequences of stroke is a top-ten research priority, and includes helping stroke survivors and their families cope with speech problems (Pollock et al., In Press).Qualitative interview-led research of the 1990s revealed diverse consequences of aphasia and stroke. People reported obvious difficulties associated with impaired language, including effort in communicating, and difficulties with speaking, speaking in a grou...

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Psychosocial Aspects of Aphasia: Whose Perspectives?

Cited by 67 publications

References 25 publications

Qualitative Studies of Stroke

Qualitative Studies of Stroke

Discussion The case for qualitative case study methodology in aphasia: An introduction

Consequences of stroke and aphasia according to the ICF domains: Views of Portuguese people with aphasia, family members and professionals

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