64 research outputs found
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The impact of stroke: are people with aphasia different to those without?
Purpose. Stroke rehabilitation programmes aim to improve functional outcomes and quality of life. This study explored long-term outcomes in a cohort of people admitted to two acute stroke units with stroke. Comparisons were drawn between people with aphasia (PWA) and people without aphasia.
Methods. People admitted to hospital with a first stroke were assessed at 2-weeks, 3-months and 6-months post-stroke. Measures included: the Barthel Index for Activities of Daily Living (ADL), the Frenchay Aphasia Screening Test, the General Health Questionnaire-12 for emotional well-being and the Stroke and Aphasia Quality of Life Scale-39g. Extended ADL and social support were also measured at 3 and 6 months, with the Frenchay Activities Index and the Social Support Survey, respectively.
Results. Of 126 eligible participants, 96(76%) took part and 87(69%) were able to self-report. Self-report data are reported here. Although outcomes improved significantly across time, at 6 months people continued to experience substantial functional limitations (16% aphasic; 32% dependent on basic ADL); participation limitations (79% ≤30 on the FAI); high psychological distress (45%) and compromised quality of life (54% ≤4 on the SAQOL-39g). Levels of social support remained relatively stable. Though at 3-months post-stroke PWA were significantly more likely to experience high psychological distress (93% versus 50% for those without), across time, there were no significant differences between PWA and those without on psychological distress and also ADL and social support. There were, however, significant differences on extended ADL (F(1,68) = 7.80, p < 0.01) and quality of life (F(1,69) = 6.30, p < 0.05).
Conclusion. PWA participated in fewer activities and reported worse quality of life after stroke than people without aphasia, even when their physical abilities, well-being and social support were comparable. Implications for clinical practice and future research are discussed
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Psychometric properties of the Stroke and Aphasia Quality of Life Scale (SAQOL-39) in a generic stroke population
Background: We previously developed the Stroke and Aphasia Quality of Life scale (SAQOL-39) and tested it with people with chronic aphasia. A scale allowing comparisons of quality of life between people with versus without aphasia post-stroke would be of value to clinicians.
Objectives: To evaluate the psychometrics of the SAQOL-39 in a generic stroke sample. Should this process result in a generic-stroke version of the scale (SAQOL-39g), a further aim is to compare the latter and the SAQOL-39 as tested in chronic aphasia.
Design and subjects: Repeated measures psychometric study, evaluating internal consistency, test—retest reliability, construct validity and responsiveness to change. People admitted to hospital with a first stroke were assessed two weeks, three months and six months post stroke.
Measures: SAQOL-39, National Institutes of Health Stroke Scale, Barthel, Frenchay Aphasia Screening Test, General Health Questionnaire-12 and Frenchay Activities Index.
Results: Of 126 eligible participants, 96 (76%) participated and 87 (69%) were able to self-report and are presented here. Testing the SAQOL-39 in generic stroke resulted in the SAQOL-39g, which has the same items as the SAQOL-39 but three domains: physical, psychosocial, communication. The SAQOL-39g showed good internal consistency (α = 0.95 overall score, 0.92—0.95 domains), test—retest reliability (interclass correlation (ICC) = 0.96 overall, 0.92—0.98 domains), convergent (r = 0.36—0.70 overall, 0.47—0.78 domains) and discriminant validity (r = 0.26 overall, 0.03—0.40 domains). It differentiated people by stroke severity and visual analogue scale (VAS)-defined quality of life. Moderate changes (d = 0.35—0.49; standardized response mean (SRM) = 0.29—0.53) from two weeks to six months supported responsiveness.
Conclusions: The SAQOL-39g demonstrated good reliability, validity and responsiveness to change. It can be used to evaluate quality of life in people with and without aphasia post stroke
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Information needs after stroke: What to include and how to structure it on a website. A qualitative study using focus groups and card sorting
Background: Use of the Internet to obtain health and other information is increasing. Previous studies have identified the specific information needs of people with stroke but not in relation to the Internet. People with aphasia (PwA) may face barriers in accessing the Internet: Navigating websites requires an ability to categorise information and this ability is often impaired in PwA. The website categorisation preferences of people with stroke and with aphasia have not yet been reported.
Aims: This study aimed: (a) to determine what information people who have had a stroke would like to see on a website about living with stroke; (b) to determine the most effective means of structuring information on the website so that it is accessible to people with stroke; and c) to identify any differences between people with and without aphasia in terms of preferences for structuring information on the website.
Methods & Procedures: Participants were recruited from a hospital's Stroke Database. Focus groups were used to elicit what information participants wanted on a website about living with stroke. The themes raised were depicted on 133 cards. To determine the most effective way of structuring information on the website, and whether there were any differences in preferences between PwA and PwoA, participants used a modified closed card-sorting technique to sort the cards under website categories.
Outcomes & Results: A total of 48 people were invited, and 12 (25%) agreed to take part. We ran three focus groups: one with PwA (n = 5) and two with people without aphasia (PwoA) (n = 3, n = 4). Participants wanted more information about stroke causes and effects (particularly emotional issues), roles of local agencies, and returning to previous activities (driving, going out). All participants completed the card-sorting exercise. Few cards (6%) were categorised identically by everyone. Cards relating to local agencies and groups were not consistently categorised together. Cards relating to emotions were segregated. The categorisation preferences for PwA were more fragmented than those for PwoA: 60% of PwA agreed on the categorisation of 51% of the cards, whereas 60% of PwoA agreed on the categorisation of 76% of the cards.
Conclusions: Information needs covered all stages of the stroke journey. The card sorting was accessible to everyone, and provided evidence of structuring preferences and of some of the categorisation difficulties faced by PwA. More research is needed on what an accessible website looks like for PwA
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“Struggling to stay connected”: comparing the social relationships of healthy older people and people with stroke and aphasia
Background: Having a stroke and aphasia can profoundly affect a person’s social relationships. Further, poor social support is associated with adverse post-stroke outcomes such as psychological distress, worse quality of life, and worse recovery. To date, no study has used complex measures of social network and perceived social support to compare stroke survivors with aphasia, without aphasia, and the general older population. A better understanding of which aspects of social support are most affected by stroke and aphasia may inform stroke services.
Aims: To compare the social networks and perceived functional social support of people following a stroke, with and without aphasia, and healthy older adults.
Methods & Procedures: Cross-sectional interview-based study. People with a first stroke were recruited from two acute stroke units and interviewed 6 months post onset. We recruited 60 stroke participants without aphasia, average age 69.8 (SD = 14.3), and 11 stroke participants with aphasia, average age 66.5 (SD = 13.7). One hundred and six healthy older adults were recruited via the community, average age 62.8 (SD = 9.5). All participants completed the Medical Outcomes Study Social Support Survey (SSS) and the Stroke Social Network Scale (SSNS). One-way independent groups ANOVAs were used to compare stroke participants with aphasia, stroke participants without aphasia, and healthy older adults. Outcomes &
Results: After adjusting for multiple comparisons (p < .004), there was a significant difference on overall social network between the three groups (p < .001), with those with aphasia scoring significantly lower than healthy older adults (p < .001). The difference between healthy older adults and people with aphasia on the friends domain of the social network scale was also significant (p = .002). There was no significant difference between the three groups on overall perceived functional social support.
Conclusions: People with aphasia have less diverse social networks than healthy older adults, with friendships particularly affected. Stroke services should monitor for social isolation, and consider ways to support people following a stroke in maintaining or establishing diverse social networks
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Efficacy of Elaborated Semantic Features Analysis in Aphasia: a quasi-randomised controlled trial
Background: Word finding difficulty is one of the most common features of aphasia. Semantic Features Analysis (SFA) directly aims to improve word finding in people with aphasia. Evidence from systematic reviews suggests that SFA leads to positive outcomes, yet the evidence comprises single case studies and case series. There is a need to evaluate the efficacy of SFA in controlled group studies/trials.
Aims: To evaluate the efficacy of Elaborated Semantic Feature Analysis (ESFA) for word finding in people with aphasia. We investigated: (a) the efficacy of ESFA versus a delayed therapy/control, (b) the efficacy of two therapy approaches– individual versus a combination of individual and group therapy.
Methods and procedures: We ran a multi-centre, quasi-randomised controlled trial, nested in a larger study (Thales-Aphasia). Participants were recruited from community settings. They had to be people with aphasia due to stroke at least four months post-onset. Participants were randomized to individual vs combination vs delayed therapy/control groups. Both therapy groups had three hours of ESFA per week for 12 weeks. Delayed therapy/control group had no intervention for 12 weeks and were then randomized to either individual or combination therapy. The primary outcome was confrontation naming. Secondary outcomes were the Boston Naming Test, Discourse, the Functional Assessment of Communication Skills for adults (ASHA–FACS), the Stroke and Aphasia Quality of Life scale (SAQOL-39g), the General Health Questionnaire-12 item, and the EQ-5D.
Outcomes and Results: Of the 72 participants of the Thales-Aphasia project, 58 met eligibility criteria for speech-language therapy and 39 were allocated to ESFA. The critical p-value was adjusted for multiple comparisons (.005). For the therapy versus control comparison, there was a significant main effect of time on the primary outcome (p<.001, η2p=.42) and a significant interaction effect (p=.003, η2p=.21). An interaction effect for the SAQOL-39g (p=.015, η2p=.11) and its psychosocial domain (p=.013, η2p=.12) did not remain significant after Bonferroni adjustment. For the individual versus combination ESFA comparison, there were significant main effects of time on the primary outcome (p<.001, η2p=.49), the BNT (p<.001, η2p=.29) and the ASHA-FACS (p=.001, η2p=.18). Interaction and group effects were not significant.
Conclusion: Though underpowered, this study provides evidence on the efficacy of ESFA to improve word finding in aphasia, with gains similar in the two therapy approaches.
Trial registration: ISRCTN71455409, https://doi.org/10.1186/ISRCTN7145540
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What are the important factors in health-related quality of life for people with aphasia? A systematic review
Objective: To determine factors associated with or predictive of poor health-related quality of life (HRQL) in people with aphasia poststroke. Better understanding of these factors can allow better targeting of rehabilitation programs.
Data Sources: Electronic databases, covering medical (eg, Medline, Excerpta Medica Database, Evidence-Based Medicine Reviews, Cumulative Index to Nursing and Allied Health Literature, Ovid, Allied and Complementary Medicine Database) and social sciences (eg, PsycINFO) were searched and key experts were approached.
Study Selection: Studies including specific information on the HRQL of people with aphasia poststroke using validated HRQL measures or established ways of analyzing qualitative data were included. Two reviewers independently screened studies against the eligibility criteria.
Data Extraction: This was undertaken independently by 2 reviewers. Discrepancies were resolved by consensus. Quantitative studies were assessed for quality with Counsell and Dennis' critical appraisal tool for systematic review of prognostic models in acute stroke; qualitative studies with the Critical Appraisal Skills Program tool for qualitative research.
Data Synthesis: Fourteen research reports met the eligibility criteria. Because of their high heterogeneity, the data synthesis was narrative. The evidence is not strong enough to determine the main predictors of HRQL in people with aphasia. Still, emotional distress/depression, severity of aphasia and communication disability, other medical problems, activity limitations, and aspects of social network and support were important factors.
Conclusions: Emotional distress, aphasia severity, communication and activity limitations, other medical problems, and social factors affect HRQL. Stroke HRQL studies need to include people with aphasia and report separately on them, in order to determine the main predictors of their HRQL and to identify what interventions can best address them
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“I’ve got somebody there, someone cares”: what support is most valued following a stroke?
Purpose: There is often a need for increased support following a stroke. This study explored what types of support are provided by different network members, and what support functions are most valued.
Methods: Adults with first stroke were recruited from a stroke unit, and participated in in-depth interviews 8-15 months post stroke. Framework Analysis was used to build thematic and explanatory accounts of the data.
Results: Twenty-nine participants took part. Main themes to emerge were: the spouse was the most important provider of support; children were a relatively stable source of support, although many participants expressed reservations about worrying a child; relatives and friends typically provided social companionship and emotional support rather than on-going practical support. The only universally valued support function was the sense that someone was concerned and cared. Other valued functions were: social companionship including everyday social ‘chit chat’; practical support provided sensitively; and, for many, sharing worries and sensitive encouragement. The manner and context in which support was provided was important: support was easiest to receive when it communicated concern, and was part of a reciprocal, caring relationship.
Conclusions: As well as measuring supportive acts, researchers and clinicians should consider the manner and context of support
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Aphasia blog talk: How does stroke and aphasia affect a person’s social relationships?
Background: Stroke and aphasia can negatively affect a person’s ability to maintain healthy social relationships, both within the family and also with friends and the wider network. To date, this has been explored predominantly through qualitative interviews and questionnaires. Blogs written by people with aphasia constitute a novel source of data, comprised of people’s own voices on issues that are of concern to them.
Aims: To explore the impact of stroke and aphasia on a person’s relationships with family, friends and the wider network through analysing blogs written by people with aphasia.
Methods & Procedures: Blog search engines were used to identify blogs sustained by a sole author who had aphasia following a stroke, and which reflected on their social network. The data were analysed qualitatively using framework analysis.
Outcomes & Results: The systematic search resulted in 10 relevant blogs. Participants were aged between 26 and 69 years old, lived in the community, were at least 1 year post stroke and included six women and four men. Aphasia was a consistent thread running through the blogs affecting conversations with all parts of a person’s network and impacting on participants’ sense of self. They found it more difficult to take part in family activities and described higher degrees of dependence and changed family dynamics. Contact with friends was reduced, partly due to communication and physical difficulties. While some participants became motivated to become members of groups post stroke, contact with the wider network sometimes diminished, in part because of loss of work and community activities. An additional factor impacting on social relationships was other people’s positive or negative reaction towards the person with aphasia. Finally, the blogs reflected on the importance of support they had received, both from close family and also from the wider community.
Conclusions: This study found that social relationships played a crucial role in people’s lives following a stroke and aphasia. Nonetheless, family relationships, friendships and social exchanges within the wider social network were all substantially affected. Exploring this area through online narratives offered a rich and highly authentic source of data. The findings suggest that clinicians should incorporate social approaches in rehabilitation and consider ways to foster the maintenance of social networks. The use of social media by people with aphasia should be further explored, both as a therapeutic outlet and also as a way for people with aphasia to feel connected to a wider community
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Quality of life after stroke: Evaluation of the Greek SAQOL-39g
Background/Aims: Stroke and aphasia rehabilitation aims to improve people’s quality of life. Yet, scales for measuring health-related quality of life in stroke typically exclude people with aphasia. They are also primarily available in English. An exception is the Stroke and Aphasia Quality of Life scale (SAQOL-39g). This scale has been tested with people with aphasia; it has been adapted for use in many countries including Greece. The aim of this study was to examine the psychometric properties of the Greek SAQOL-39g.
Methods: An interview-based psychometric study was carried out. Participants completed: receptive sub-tests of Frenchay Aphasia Screening Test, Greek SAQOL-39g, General Health Questionnaire-12, Frenchay Activities Index, Montreal Cognitive Assessment and Barthel Index.
Results: 86 people took part; 26 provided test-retest reliability data. The Greek SAQOL-39g demonstrated excellent acceptability (minimal missing data; no floor/ceiling effects), test-retest reliability (ICC= 0.96 scale, 0.83-0.99 domains) and internal consistency (Cronbach’s alpha 0.96 scale, 0.92-0.96 domains). There was strong evidence for convergent (r=0.53-0.80 scale; 0.54-0.89 domains) and discriminant validity (r=0.52 scale; 0.04-0.48 domains).
Conclusion: The Greek SAQOL-39g is a valid and reliable scale. It is a promising measure for use in stroke and aphasia treatment prioritization, outcome measurement and service evaluation
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Does mode of administration affect health-related quality-of-life outcomes after stroke?
Telephone interviews and postal surveys may be a resource-efficient way of assessing health-related quality-of-life post-stroke, if they produce data equivalent to face-to-face interviews. This study explored whether telephone interviews and postal surveys of the Stroke and Aphasia Quality of Life Scale (SAQOL-39g) yielded similar results to face-to-face interviews. Participants included people with aphasia and comprised two groups: group one (n =22) were 3-6 months post-stroke; group two (n =26) were ≥1 year post-stroke. They completed either a face-to-face and a telephone interview or a face-to-face interview and a postal survey of the SAQOL-39g. Response rates were higher for group two (87%) than for group one (72-77%). There were no significant differences between respondents and non-respondents on demographics, co-morbidities, stroke severity, or communication impairment. Concordance between face-to-face and telephone administrations (.90-.98) was excellent; and very good-excellent between face-to-face and postal administrations (.84-.96), although scores in postal administrations were lower (significant for psychosocial domain and overall SAQOL-39g in group two). These findings suggest that the SAQOL-39g yields similar results in different modes of administration. Researchers and clinicians may employ alternative modes, particularly in the longer term post-stroke, in order to reduce costs or facilitate clients with access difficulties
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