Social support in people with chronic aphasia

Background & Aims : Stroke and aphasia can have a profound impact on people's social activities, and family and social relationships. This study looked at patterns of social support in people with chronic aphasia following stroke. It examined the relationship between social support and quality of life, exploring which aspects of social support (social network versus perceived social support) were most associated with health-related quality of life (HRQL). Methods & Procedures : A cross-sectional interview-based survey study was conducted. A cluster-sampling framework was used to recruit participants with chronic aphasia following stroke (> 1 year) from three different sites in the south-east of England. Measures included the Stroke and Aphasia Quality of Life Scale-39 item version (SAQOL-39), the MOS Social Support Survey (SSS), and a social network questionnaire. Descriptive statistics, correlation, t -tests, and ANOVAs were used as appropriate. Outcomes & Results : The results of those able to self-report (83 out of 95 participants, 87%) are reported here. In terms of social networks, the mode of the size of network was 4. Size of network was associated with HRQL for women only. Most participants (71%) reported they had the same amount of contact with their children following the stroke, while 64% reported they saw their friends less. Those who had the same level of contact with their family as before the stroke had the highest HRQL scores; those who saw them either less or more than before the stroke had lower HRQL. In terms of perceived social support, the SSS scores were negatively skewed with a mean (SD) of 3.69 (.95), suggesting that participants felt overall well supported. Two types of support were significantly correlated with HRQL: social companionship and informational support. Clinical implications : Therapy services for people with aphasia could consider ways to enhance social companionship and informational support as this may positively impact on HRQL. Implications could include complementing and supporting existing social networks, and facilitating access to information and social participation

Health-related quality of life in people with severe aphasia

Background: Health-related quality of life (HRQL) measures are increasingly used to help us understand the impact of disease or disability on a person's life and to measure the effectiveness of interventions. A small number of studies have looked at perceived HRQL in people with mild or moderate aphasia. They report that reduced HRQL is associated with low psychological well-being and depression, reduced activity levels and high levels of communication disability. Still, very little is known about the quality of life of people with severe aphasia. Aims: This study aimed to evaluate the HRQL of people with severe aphasia as rated by their proxy respondents. To increase our understanding of these proxy evaluations, the findings were compared with those of two other studies of HRQL in people with moderate or mild aphasia, using proxy and self-report respondents. Methods & Procedures: A questionnaire-based cross-sectional survey was carried out where proxies of people with severe aphasia reported on their HRQL. The people with severe aphasia who took part in this study were part of a larger cohort of people with aphasia who were able to self-report on their HRQL. Aphasia was assessed with the American Speech and Hearing Association Functional Assessment of Communication Skills for Adults (ASHA-FACS) and the Frenchay Aphasia Screening Test (FAST) and HRQL with the Stroke and Aphasia Quality of Life (SAQOL) scale (proxy-reported). SAQOL-39 scores were derived from the SAQOL. Results & Results: People with severe aphasia's quality of life, as measured by their proxies (n = 12), was low and more than one standard deviation below that of the standardization sample of the SAQOL. The overall mean score for the SAQOL-39 and the means for its physical and communication domains were below the 20th centile. They were also significantly lower that those of the comparison studies of self-reports (n = 83) and proxy ratings (n = 50) of people with mild or moderate aphasia (p0.003). In the comparison studies there were no significant differences between the self-report and proxy ratings of people with mild or moderate aphasia. Conclusions & Implications: This small study suggests that the HRQL of people with severe aphasia, as reported by their proxies, is severely compromised. Further research, using a wide range of methodologies, is needed in order to address the challenge of understanding better the quality of life of people with severe aphasia

Proxy and self-report agreement on the Stroke and Aphasia Quality of Life Scale-39

Background and purpose: Health related quality of life outcomes are increasingly used to measure the effectiveness of stroke interventions. People with severe aphasia after stroke may be unable to self-report on such measures, necessitating the use of proxy respondents. We explored the level of agreement between people with aphasia (PWA) and their proxies on the Stroke and Aphasia Quality of Life Scale (SAQOL-39) and whether this agreement is influenced by demographic variables and proxy levels of depression and carer strain. Methods: People with chronic aphasia (≥6 months post stroke) were recruited through the UK national charity for PWA. They were interviewed on the SAQOL-39 and their nominated proxies were interviewed on the SAQOL-39, the General Health Questionnaire and the Caregiver Strain Index. Proxy respondents had to be ≥18 years of age, see the person with aphasia at least twice a week and have no known severe mental health problems or cognitive decline. Results: 50 of 55 eligible pairs (91%) took part in the study. Proxies rated PWA as more severely affected than PWA rated themselves. The SDs of the difference scores were large and the difference was significant for three of the four SAQOL-39 domains and the overall mean (p≤0.01). However, the bias as indicated by effect sizes was small to moderate (0.2–0.5). The strength of the agreement was excellent for the overall SAQOL-39 and the physical domain (intra-class correlation coefficient ICC 0.8), good for the psychosocial and communication domains (0.7) and fair for the energy domain (0.5). Demographic variables and proxy’s mood and carer strain did not affect the level of agreement. Conclusions: For group comparisons, proxy respondents who are in frequent contact with people with chronic aphasia can reliably report on their health related quality of life, using the SAQOL-39. Although there are significant differences between PWA and proxy responses, the magnitude of this difference is small to moderate

Q-Rapids: Quality-Aware Rapid Software Development: an H2020 Project

This work reports the objectives, current state, and outcomes of the Q-Rapids H2020 project. Q-Rapids (Quality-Aware Rapid Software Development) proposes a data-driven approach to the production of software following very short development cycles. The focus of Q-Rapids is on quality aspects, represented through quality requirements. The Q-Rapids platform, which is the tangible software asset emerging from the project, mines software repositories and usage logs to identify candidate quality requirements that may ameliorate the values of strategic indicators like product quality, time to market or team productivity. Four companies are providing use cases to evaluate the platform and associated processes.Peer ReviewedPostprint (author's final draft

Simplification of UML/OCL schemas for efficient reasoning

Ensuring the correctness of a conceptual schema is an essential task in order to avoid the propagation of errors during software development. The kind of reasoning required to perform such task is known to be exponential for UML class diagrams alone and even harder when considering OCL constraints. Motivated by this issue, we propose an innovative method aimed at removing constraints and other UML elements of the schema to obtain a simplified one that preserve the same reasoning outcomes. In this way, we can reason about the correctness of the initial artifact by reasoning on a simplified version of it. Thus, the efficiency of the reasoning process is significantly improved. In addition, since our method is independent from the reasoning engine used, any reasoning method may benefit from it.Peer ReviewedPostprint (author's final draft

Das Spiel mit der neoliberalen Marktlogik

 Ein Gespräch mit Martin Schick (Schick/Gremaud/Pavillon) zu X Minutes. Durational Comed

Why do people lose their friends after a stroke?

Background: It is well-known that people lose friends after a stroke; what is less well understood is why this occurs. Aims: This study explored why people lose contact with their friends, and whether there are any protective factors. It also examined how friendship loss and change is perceived by the individual. Methods and Procedures: Participants with a first stroke were recruited from one acute stroke unit in the UK. In-depth qualitative interviews took place between 8 and 15 months post stroke. Outcomes and Results: 29 participants were recruited of whom 10 had aphasia. The main reasons given for losing friends were: loss of shared activities, reduced energy levels, physical disability, aphasia, unhelpful responses of others, environmental barriers, and changing social desires. The subset of participants who experienced the most extensive loss of friends were those who described a sense that they were ‘closing in’ on themselves leading to a withdrawal from social contact and a new preference for meeting only close friends and family. Those with aphasia experienced the most hurtful negative responses from others and found it more difficult to retain their friends unless they had strong supportive friendship patterns prior to the stroke. The factors which helped to protect friendships included: having a shared history, friends who showed concern, who lived locally, where the friendship was not activity-based, and where the participant had a ‘friends-based’ social network prior to the stroke. Conclusions and Implications: Given the link between depression and loss of friends post stroke, supporting an individual in maintaining a social network is likely to be beneficial. For intervention to be effective, however, it may need to take into account not only the impact of new physical and language disabilities, but also changing social desires

Gender differences in health-related quality of life following total laryngectomy

Background: The impact of a total laryngectomy on an individual's life has primarily been measured from a male viewpoint reflecting the demographics of a diagnosis of laryngeal cancer. A small number of studies have looked specifically at females, but very few are comparison studies. Consequently, there is little consistent research regarding any potential gender differences. Aims: To investigate whether there are gender differences in perceptions of health-related quality of life and functional abilities following total laryngectomy. Methods & Procedures: A total of 43 participants (22 males, 21 females), who had undergone a total laryngectomy procedure at least one year previously, took part in the study. They completed The European Organisation for Research and Treatment of Cancer Core Questionnaire Version 3.0 (EORTC QLQ-C30) in conjunction with the disease-specific Head & Neck Cancer Module (QLQ-H&N35). Outcomes & Results: There were no significant differences between males and females on demographic and disease-related variables, except for the following: significantly more females lived alone and changed their employment status following surgery. Males had a significantly higher global health status/quality of life than females (p < 0.05) and significantly higher levels of physical (p = 0.01), emotional (p < 0.01), cognitive (p < 0.05) and social functioning (p < 0.05). After adjusting for differences in living arrangements and change in employment status, differences in emotional and social functioning remained significant. There was a general trend for females to have higher symptom/impairment levels and to report more treatment-related problems, but the majority of these differences were not significant. Conclusions & Implications: Following total laryngectomy, females appear to be worsely affected in aspects of quality of life than males. Emotional and social functioning are particularly vulnerable. The findings imply that rehabilitation programmes after total laryngectomy need to evaluate quality of life and address these specific areas in order to improve patient-reported long-term outcomes