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Social participation through the eyes of people with aphasia
Abstract
Background Little is known about the way people with aphasia perceive their social participation and its influencing factors. Aims To explore how people with aphasia perceive participation in society and to investigate influencing factors. Methods & procedures In this qualitative study thirteen persons with aphasia and twelve central caregivers kept a pre-structured diary over two weeks, followed by a semi-structured interview. Diaries and interviews were transcribed verbatim and analysed by two researchers independently using codes, categories and central themes inductively. Plausibility of the analyses was discussed several times with a third independent senior-researcher. In a focus group interview, the results were discussed with the participants. Outcomes & results The number of social activities and the character of these activities are not as important as the perceived engagement in the social activities for the participants. People with aphasia feel isolated but want to feel engaged. They feel burdensome to others and wish to function in an ordinary way. Extracting information from conversations is difficult but they want to know what is going on. Often they are not able to work and they wish to contribute to the community in other ways. Although they often feel stigmatized, they wish to be respected. Often they do not reach that goal. Perceived factors influencing engagement in social participation can be divided into personal, social and environmental factors. The f…
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“Additionally, Dalemans et al. (2010) reported not video-recording interviews to avoid intimidating the participant; the study instead recruited an interview-assistant to note down non-verbal data and ask questions to clarify discrepancies.”
From “Giving yourself some breathing room…”: an exploration of group meditation for people with aphasia (2021) · cites this paper as Dalemans et al. (2010)
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“Previous qualitative explorations of the lived experiences of PwA (Dalemans, Wade, van den Heuvel, & de Witte, 2010;Luck & Rose, 2007;Tomkins, Siyambalpitiya, & Worrall, 2013) have found that modifications to traditional qualitative interview approaches have been required to account for the vulnerability of the population and their communication difficulties.”
From “Giving yourself some breathing room…”: an exploration of group meditation for people with aphasia (2021) · cites this paper as Dalemans, Wade, van den Heuvel, & de Witte, 2010
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Metadata
- Authors
- Dalemans, R. J. P., de Witte, L., Wade, D., & van den Heuvel, W.
- Affiliations
- Zuyd University of Applied Sciences (NL)
- Maastricht University (NL)
- Corresponding author
- Dalemans, Ruth J. P.
- Venue
- International Journal of Language & Communication Disorders
- Publisher
- Wiley
- Published
- 2010-09-10
- Volume
- 45
- Issue
- 5
- Pages
- 537-550
- ISSN
- 1368-2822 (ISSN-L)
- 1460-6984
- OpenAlex
- W2028547584
- Cited by
- 206
- References
- 27
- Citations by year
- 2026: 10 · 2025: 18 · 2024: 24 · 2023: 15 · 2022: 20 · 2021: 12 · 2020: 14 · 2019: 15 · 2018: 8 · 2017: 11 · 2016: 14 · 2015: 10 · 2014: 11 · 2013: 9 · 2012: 5
- FWCI
- 5.02
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- International Journal of Language & Communication Disorders (publishedVersion)
- PubMed (publishedVersion)
- Research Publications (Maastricht University) (publishedVersion)
- Research Publications (Maastricht University) (submittedVersion)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Health Professions › Occupational Therapy › Assistive Technology in Communication and Mobility
- Health Sciences › Health Professions › Physical Therapy, Sports Therapy and Rehabilitation › Medical Practices and Rehabilitation
- Keywords
- aphasia, social participation (health and rehabilitation), perceived engagement, social isolation, stigma, caregivers, communication partners, communication skills, sense of belonging, environmental factors, personal factors
- MeSH terms
- Stroke Rehabilitation, Activities of Daily Living, Adaptation, Psychological, Aged, Aphasia, Attitude, Communication, Female, Humans, Interpersonal Relations, Longitudinal Studies, Male, Middle Aged, Motivation, Netherlands, Social Support, Speech Perception, Caregivers, Focus Groups
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