Longer-term needs of stroke survivors with communication difficulties living in the community: a systematic review and thematic synthesis of qualitative studies

Wray, Faye; Clarke, David

doi:10.1136/bmjopen-2017-017944

Cited by 89 publications

(109 citation statements)

References 138 publications

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“…It is not to say that these are not important, and indeed, our participants reported a sense of hope from seeing others’ progress and from seeing others living happily even in the context of significant impairment. However, these findings support the call of previous researchers, that clinicians need to focus on supporting people to develop and maintain their social and relational networks .…”

Section: Discussionsupporting

confidence: 83%

“…Reconstruction of self is aided by respecting personhood , social connectedness , engaging in meaningful activities (including identifying new meaningful, valued activities and roles) , amidst other things. These are also the things that help people develop and maintain hope for the future, but which are also affected by aphasia . Developing cohesive narratives of the past, present and future helps people in identity reconstruction .…”

Section: Discussionmentioning

confidence: 99%

“…They have identified that hope is important for life after stroke and have suggested that relationships with others, being engaged in meaningful activities, and seeing progress can be key in fostering hope . However, the literature is clear that people with aphasia are more likely to be socially isolated after stroke , struggle to continue to participate in meaningful activities and are more likely to have severe strokes, restricting possible impairment‐related recovery . All of these might influence their experience of hope.…”

Section: Introductionmentioning

confidence: 99%

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Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke

Bright

McCann

Kayes

2019

Scandinavian Caring Sciences

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Scand J Caring Sci; 2020; 34: 428-435 Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke Background: Hope is a critical resource for people with aphasia after stroke, sustaining people though times of distress and uncertainty and providing motivation. In the first months after stroke, hope is vulnerable to different influences, and people can struggle to identify and work towards hopes for the future. We have little knowledge about how people with aphasia experience hope in the longer term after stroke. Objectives: To identify how people with aphasia experience hope 1 year after stroke and how hope may change in the year after stroke. Methods: The study used an Interpretive Description methodology. Interviews were conducted with four people with aphasia who had been interviewed 1 year previously. These were analysed using content analysis. Results: All people reported a broad sense of hope for the future. They described an active process of recalibrating their early poststroke hopes through a process of reflecting on past progress, current function and what they considered might be possible and desirable in the future. People were able to develop 'new' hopes that were meaningful and seemingly achievable when they had a sense of a possible, desirable future. Those who struggled to see a possible future maintained a hope that things will be good. Social supports, a sense of progress, engagement in meaningful activities and interactions appeared crucial in helping people (re)develop hopes for their future. Conclusions: Hope and hopes for the future gradually changed after stroke. Hope, identity and social connectedness were closely entwined and could enable people to both dwell in the present and move towards desired futures. This research suggests clinicians should prioritise creating hope-fostering environments which support people to develop hope for their future.

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Section: Discussionsupporting

confidence: 83%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke

Bright

McCann

Kayes

2019

Scandinavian Caring Sciences

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“…Qualitative studies also highlight the persistent difficulties faced by this population in adjusting to and managing life with a communication difficulty. This is not limited to the immediate aftermath of stroke; those who are several years post‐stroke also express significant challenges, for example, in maintaining their social networks and participating in meaningful activity (Wray and Clarke ).…”

Section: Introductionmentioning

confidence: 99%

“…Given the underrepresentation of stroke survivors with aphasia in RCTs to date, and the unique challenges to participation posed by post‐stroke communication difficulties, it is important to consider how stroke survivors with communication difficulties may be better supported to adjust to and manage their condition in the longer term. A systematic review by Wray and Clarke (), exploring the views and experiences of stroke survivors with communication difficulties following hospital discharge, found few qualitative studies in the first year post‐stroke (Brady et al . , Grohn et al .…”

Section: Introductionmentioning

confidence: 99%

How do stroke survivors with communication difficulties manage life after stroke in the first year? A qualitative study

Wray

Clarke

Forster

2019

Intl J Lang & Comm Disor

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Background: Interest in how stroke survivors might be better supported to manage life after stroke has grown rapidly in recent years, with a particular emphasis on enabling 'self-management'. Post-stroke communication difficulties may pose a unique barrier to longer term adaptation and adjustment. It is important to understand how stroke survivors with communication difficulties manage life after stroke and what support may be needed to facilitate this process. Aims: To explore how stroke survivors with communication difficulties manage life after stroke in the first year. Methods & Procedures:A cross-sectional qualitative study involving in-depth semi-structured interviews with stroke survivors with communication difficulties (aphasia, dysarthria or apraxia of speech) and/or their family members at single time points during the first year post-stroke. A total of 21 participants (14 stroke survivors and seven family members) took part in interviews for the study. Interview data were analysed using thematic analysis. Outcome & Results: A total of six themes were identified: (1) strategies to manage changes to communication; (2) testing communication outside of the home; (3) balancing support and independence; (4) hope for recovery; (5) obtaining support from healthcare professionals; and (6) adapting activities and keeping busy. Stroke survivors with communication difficulties and their family members undertook significant work (practical, relational, emotional) to manage their condition. Adaptation and adjustment was often facilitated by 'doing'; testing out which activities could be managed independently and which required additional support. Some stroke survivors and their family members demonstrated considerable resourcefulness and creativity in developing strategies to manage their communication difficulties. Despite the work undertaken, many expressed a lack of confidence in their ability and feelings of powerlessness and abandonment at the point of discharge from community services. Conclusions & Implications: Stroke survivors and their family members develop personally meaningful and contextspecific strategies to adjust to and manage life after stroke. Future interventions should recognize, support and build upon the active work already undertaken by stroke survivors with communication difficulties and their families. Further support before and around the point of discharge from community services may be needed to help build confidence and skills to manage in the longer term. The benefit of a supported self-management approach for stroke survivors with communication difficulties should be further investigated. What this paper addsWhat is already known on the subject Few qualitative studies have explored how stroke survivors with communication difficulties and their family members manage life after stroke in the first year. Considering the poor longer term outcomes experienced by this population, it is important to understand how stroke survivors with communication difficulties manage during this time and w...

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Association Between Communicative Participation and Psychosocial Factors in Patients With Voice Disorders

Nguyen-Feng

Asplund

Frazier

et al. 2021

JAMA Otolaryngol Head Neck Surg

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IMPORTANCECommunicative participation can be conceptualized as taking part in life situations in which people are socially engaged. Communicative participation is an important aspect in the lives of patients with voice disorders, although it has not been formally assessed among a broad sample of patients with voice disorders. The associations between communicative participation and associated concepts (vocal impairment, psychosocial distress, and voice-specific perceived control) are unknown yet important for integrated treatment approaches.OBJECTIVE The primary objective was to examine the associations between communicative participation and vocal impairment, psychosocial distress, and voice-specific perceived control. The secondary objective was to examine whether perceived control moderates the association of distress with communicative participation and vocal impairment, the latter of which would replicate previous research. The hypotheses were that communicative participation would be associated with lower vocal impairment, lower distress, and higher perceived control and that higher perceived control would moderate the association between communicative participation and both vocal impairment and psychosocial distress. DESIGN, SETTING, AND PARTICIPANTS This cross-sectional study was conducted from June 2014 to May 2017 among a consecutive sample of adult patients with voice disorders at an academic voice clinic affiliated with the University of Minnesota. Of the 744 patients approached to participate in the survey study, 590 patients agreed. Data analysis was performed from January to June 2020. MAIN OUTCOMES AND MEASURES Communicative participation (measured by the 10-item general short form of the Communicative Participation Item Bank), vocal impairment (measured by the 10-item version of the Voice Handicap Index), psychosocial distress (measured by the 18-item version of the Brief Symptom Inventory), and voice-specific perceived control (measured by the 8-item present control subscale of the Perceived Control Over Stressful Events Scale). RESULTSThe sample comprised 590 patients (mean [SD] age, 51.9 [17.1] years; 390 women [66.1%]) with voice disorders. Communicative participation was associated with lower vocal impairment (r = −0.73; 95% CI, −0.77 to −0.69), lower overall psychosocial distress (r = −0.22; 95% CI, −0.30 to −0.14), and higher voice-specific perceived control (r = 0.30; 95% CI, 0.23-0.37). Moderation analyses indicated that communicative participation was negatively associated with distress at all levels of perceived control and, replicating previous findings, greater vocal impairment was associated with higher psychosocial distress only in patients with lower perceived control. CONCLUSIONS AND RELEVANCEIn this study, communicative participation was associated with, but distinct from, vocal impairment and was also associated with psychosocial distress and voice-specific perceived control. The study's results suggest that communicative participation is an important addition to voice research...

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Longer-term needs of stroke survivors with communication difficulties living in the community: a systematic review and thematic synthesis of qualitative studies

Cited by 89 publications

References 138 publications

Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke

Recalibrating hope: A longitudinal study of the experiences of people with aphasia after stroke

How do stroke survivors with communication difficulties manage life after stroke in the first year? A qualitative study

Association Between Communicative Participation and Psychosocial Factors in Patients With Voice Disorders

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