Signs of aphasia: Online identity and stigma management in post-stroke aphasia

Taubner, Helena; Hallén, Malin; Wengelin, Åsa

doi:10.5817/cp2017-1-10

Cited by 9 publications

(7 citation statements)

References 40 publications

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“…As a result, there were also some indications, however small, about feelings of been stigmatized because of the social perceptions that were attributed to stroke among young adults. Studies assert that in order to avoid been stigmatized most stroke sufferers were likely not to disclose their condition because of the likelihood of been viewed in a negative manner ( 49 – 53 ) by members of a social group.…”

Section: Discussionmentioning

confidence: 99%

Why Me?: A Qualitative Study on the Experiences of Young Stroke Survivors in the Accra Metropolis of Ghana, West Africa

Opoku¹,

Eliason

Akpalu

2020

Journal of Patient Experience

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Young stroke survivors are affected gravely when diagnosed with stroke between the ages of 18 to 45 years. The psychological and social effects of young stroke require stringent coping factors geared toward recovery and regeneration of self. A qualitative exploratory design was used to explore coping experiences and purposive sampling technique was employed to recruit 10 participants. Data were collected using tape recorded interviews which lasted between 45 minutes to 1 hour 30 minutes and guided by a semistructured interview guide which was informed by the research objectives and literature review. Thematic content analysis was used to analyze the transcribed data and 6 themes namely: psychological disruption, disruption to social identity, spiritual practices and beliefs, self-determination, support, and herbal medicine were derived. These themes gave insight into how these young stroke victims experienced and coped with physical signs and symptoms which negatively impacted their activities of daily living and resulted in social isolation, fear, anxiety, depression, guilt, and suicidal ideations. Provision of continuity of care for young adults living with stroke is highly recommended.

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Section: Discussionmentioning

confidence: 99%

Why Me?: A Qualitative Study on the Experiences of Young Stroke Survivors in the Accra Metropolis of Ghana, West Africa

Opoku¹,

Eliason

Akpalu

2020

Journal of Patient Experience

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“…On the other hand, she sometimes conceals her disabilities. She previously had an account on a dating site, in which she says she did not display any signs of aphasia or of having had a stroke (see also Taubner et al, 2017) Frida is 41 years old (33 at onset), but feels tired and unable to do things in the same way as before, which makes her feel "like an old lady". Thus, Frida expresses simultaneously being and not being the same as other stroke survivors, and also being young but feeling old.…”

Section: Sameness Versus Differencementioning

confidence: 99%

Still the same? – Self-identity dilemmas when living with post-stroke aphasia in a digitalised society

2019

Self Cite

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Background: Self-identity construction through "stories of self" is highly relevant for people with aphasia, not only because the onset entails a "biographical disruption" but also since their ability to keep their "stories of self" going is reduced. Three dilemmas (constancy/change, sameness/difference and agency/dependency) are known to be central to identity. In a digitalised society like Sweden, self-identity construction, including the navigation of these dilemmas, takes place both online and offline. Nevertheless, research combining aphasia, identity and online issues is scarce. Aim: This qualitative study aims, in terms identity dilemmas, to investigate self-identity construction in working-age persons living with post-stroke aphasia in a digitalised society (i.e. Sweden). Are the dilemmas relevant to the participants, and if so, how do they navigate them online and offline? Methods and Procedures: Nine individuals (three men and six women, aged 24-54 at onset) with mild or moderate post-stroke aphasia participated. The data comprises nine individual audiorecorded interviews and 1,581 screenshots from online observations. Qualitative analyses were performed (vertically and horizontally), combining inductive and deductive approaches. Outcomes and Results: All three dilemmas are relevant to the participants. They construct their self-identity as both the same as they were pre-stroke and changed. They are both the same and different in relation to other stroke survivors (with or without aphasia), i.e. both "disabled" and "normal". They display both dependency and agency. Thus, they navigate the dilemmas by constantly negotiating what to include in their stories of self. In addition, telling one story of self offline does not imply telling the same story online. Conclusion: The dilemmas are intertwined and highly relevant to the participants. Offline and online settings evoke different ways for them to navigate the dilemmas. Increased awareness of the possible struggle with self-identity dilemmas in people with aphasia, and the possible difference between their online and offline self-identities, should be of value to family members, clinicians and researchers. Further research based on a larger sample is suggested.

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“…The research and promotion of mental health help-seeking behaviour (e.g., Mojtabai, et al, 2016) will be a key component to the minimisation of stigma associated with depression in post-stroke aphasia. Further research is required to investigate mental health stigma and programs to increase mental health literacy for people with aphasia (Corrigan, Patrick, Benjamin, & Deborah, 2014;Taubner et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

“…Mental health stigma is a major cause of discrimination and exclusion, negatively impacting on a person's selfesteem, relationships, housing and employment (WHO, 2013). People with aphasia may experience stigma related to disabilities (i.e., communication, psychological, physical), as evidenced in emerging research (e.g., Taubner, Hallén, & Wengelin, 2017). Clement and colleagues (2015) detail the impact of mental-health-related stigma on help-seeking in neurotypical mental health populations and the wider population.…”

Section: What Do People With Aphasia Experience Regarding Mood Changementioning

confidence: 99%

“…Overcoming mental health stigma is an area of priority in preventing mental health conditions (Clement, et al, 2015). Further research is warranted to examine effective ways of overcoming mental health stigma for people with aphasia and their families (Taubner et al, 2017). Interestingly, a contrast between two focus groups was found in the acceptability and uptake of psychology service by inpatients.…”

Section: What Are the Barriers And Facilitators To Implementing Steppmentioning

confidence: 99%

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Translating stepped psychological care to aphasia rehabilitation

Baker¹

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Stroke rehabilitation needs more psychological services to address mood changes and depression after aphasia. An evidence-practice gap exists that can be minimised through implementation of stepped psychological care-an evidence-based framework offering multidisciplinary intervention after stroke. However, stepped psychological care has not been adapted for the communication disability associated with aphasia. Further, there is a lack of research exploring the perspectives of key stakeholders in managing depression after post-stroke aphasia. The overarching aim of this research was to describe the evidence-practice gap in managing mood changes and depression after post-stroke aphasia. Chapter one of this thesis comprises: an introduction, including a review of the literature, the aims of the thesis, and an overview of the methodology and the thesis structure. The thesis then reports on three research studies investigating the management of mood changes and depression after poststroke aphasia: 1) a systematic review of rehabilitation interventions to prevent and treat depression after post-stroke aphasia; 2) a description, from the perspective of stroke health professionals, of: a) current practice; and b) the identification of barriers and facilitators to implementing stepped psychological care to clinical practice; and 3) a description, from the perspective of people with aphasia, of: a) experiences of mood changes, depression and current practice; and b) preferences within a stepped psychological care approach. Study 1 systematically reviewed the research evidence for rehabilitation interventions to prevent and treat depression after post-stroke aphasia. It followed the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. A total of 45 studies were eligible for inclusion. It is not clear which interventions may prevent depression. A range of interventions that may enhance mood or treat mild depression after post-stroke aphasia were identified and described within the stepped psychological care framework. Study 2 described, from the perspectives of stroke health professionals: a) current practice for the management of depression after post-stroke aphasia; and b) the barriers and facilitators to implementing stepped psychological care for depression after post-stroke aphasia. Thirty-nine stroke health professionals participated in qualitative focus groups. Five focus groups within acute, rehabilitation and community settings were divided into two parts: 1) a discussion about current practice; and 2) information provision about the stepped psychological care framework, followed by a discussion of the barriers and facilitators to implementing this framework to clinical practice. Four core components of current practice were derived from an interpretive description analysis: 1)

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Signs of aphasia: Online identity and stigma management in post-stroke aphasia

Abstract: This study aimed to investigate online strategies for re-negotiating identity, in terms of

Cited by 9 publications

References 40 publications

Why Me?: A Qualitative Study on the Experiences of Young Stroke Survivors in the Accra Metropolis of Ghana, West Africa

Why Me?: A Qualitative Study on the Experiences of Young Stroke Survivors in the Accra Metropolis of Ghana, West Africa

Still the same? – Self-identity dilemmas when living with post-stroke aphasia in a digitalised society

Translating stepped psychological care to aphasia rehabilitation

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