Katerina Hilari | City, University of London (original) (raw)
Research Projects by Katerina Hilari
by Marian Brady, Audrey Bowen, Andrew Elders, Ann Charlotte Laska, Brian Macwhinney, Evy Visch-Brink, Erin Godecke, Jon Godwin, Katerina Hilari, Linda Worrall, Simon Horton, and Tarja Kukkonen
Background Aphasia is a common consequence of stroke, but to date, we lack high quality data on r... more Background
Aphasia is a common consequence of stroke, but to date, we lack high quality data on recovery profiles, the individual and treatment characteristics that contribute to optimum recovery. The RELEASE study plans to use retrospective secondary analyses of aphasia research datasets to generate high quality data on the natural history of language recovery following stroke, the predictors of language recovery and the components of effective aphasia rehabilitation interventions.
Funding
RELEASE is funded by the National Institutes of Health Research (HS&DR - 14/04/22) for 2 years, and is supported by the activities of the Collaboration of Aphasia Trialists (CATs: www.aphasiatrials.org).
It aims to bring together many (53 at the last count) sets of aphasia research data involving more than 3000 individual participants. By pooling these various sources of data we will create a large dataset from which we plan to address some key aphasia research questions.
Our research questions
• What are the components of aphasia therapy that best facilitate recovery after stroke?
• What is the natural history of recovery from aphasia (with and without access to therapy)?
• What are the individual (demographic and stroke related) factors that contribute to recovery from aphasia?
Papers by Katerina Hilari
Stroke, Aug 1, 2003
Background and Purpose-Health-related quality of life (HRQL) is a key outcome in stroke clinical ... more Background and Purpose-Health-related quality of life (HRQL) is a key outcome in stroke clinical trials. Stroke-specific HRQL scales (eg, SS-QOL, SIS) have generally been developed with samples of stroke survivors that exclude people with aphasia. We adapted the SS-QOL for use with people with aphasia to produce the Stroke and Aphasia Quality of Life Scale (SAQOL). We report results from the psychometric evaluation of the initial 53-item SAQOL and the item-reduced SAQOL-39. Methods-We studied 95 people with long-term aphasia to evaluate the acceptability, reliability, and validity of the SAQOL and SAQOL-39 using standard psychometric methods. Results-A total of 83 of 95 (87%) were able to complete the SAQOL by self-report; their results are reported here. Results supported the reliability and validity of the overall score on the 53-item SAQOL, but there was little support for hypothesized subdomains. Using factor analysis, we derived a shorter version (SAQOL-39) that identified 4 subdomains (physical, psychosocial, communication, and energy). The SAQOL-39 demonstrated good acceptability, internal consistency (Cronbach's ␣ϭ0.74 to 0.94), test-retest reliability (intraclass correlation coefficientϭ0.89 to 0.98), and construct validity (corrected domain-total correlations, rϭ0.38 to 0.58; convergent, rϭ0.55 to 0.67; discriminant, rϭ0.02 to 0.27 validity). Conclusions-The SAQOL-39 is an acceptable, reliable, and valid measure of HRQL in people with long-term aphasia. Further testing is needed to evaluate the responsiveness of the SAQOL-39 and to investigate its usefulness in evaluative research and routine clinical practice.
Assessing health-related quality of life in people with aphasia.
http://isrctn.com/, 2018
Investigation of different therapy approaches for aphasia in the Greek language. (Unpublished Doc... more Investigation of different therapy approaches for aphasia in the Greek language. (Unpublished Doctoral thesis, City, Universtiy of London) This is the accepted version of the paper. This version of the publication may differ from the final published version.
AMRC open research, May 21, 2019
Around a quarter of people post stroke will experience Background: aphasia, a language disability... more Around a quarter of people post stroke will experience Background: aphasia, a language disability. Having aphasia places someone at risk of becoming depressed and isolated. There is limited evidence for effective interventions to enhance psychological well-being for this client group. A potential intervention is Solution Focused Brief Therapy (SFBT), which supports a person to build meaningful, achievable change through focusing on a person's skills and resources rather than their deficits. The SOFIA Trial aims to explore the acceptability of SFBT to people with varying presentations of aphasia, including severe aphasia, and to assess the feasibility of conducting a future definitive trial investigating clinical and cost effectiveness. The trial is a single-blind, randomised, wait-list controlled Methods: feasibility trial with nested qualitative research and pilot economic evaluation comparing SFBT plus usual care to usual care alone. The study will recruit 32 participants with aphasia who are ≥6 months post stroke. All participants will be assessed on psychosocial outcome measures at baseline, three, and six months post randomisation by assessors blinded to treatment allocation. Participants will be randomly assigned to intervention group (start intervention immediately post randomisation) or wait-list group (start intervention six months post randomisation). Wait-list group will additionally be assessed nine months post randomisation. The intervention consists of up to six SFBT sessions delivered over three months by speech and language therapists. Participants and therapists will also take part in in-depth interviews exploring their experiences of the study. The pilot economic evaluation will use the EQ-5D-5L measure and an adapted Client Service Receipt Inventory. People with aphasia have been involved in designing and monitoring the trial. Given the high levels of depression and isolation, there is a Discussion: need to investigate effective interventions that enhance the psychological 1 2 3 4
AMRC open research, Jul 15, 2019
Around a quarter of people post stroke will experience Background: aphasia, a language disability... more Around a quarter of people post stroke will experience Background: aphasia, a language disability. Having aphasia places someone at risk of becoming depressed and isolated. There is limited evidence for effective interventions to enhance psychological well-being for this client group. A potential intervention is Solution Focused Brief Therapy (SFBT), which supports a person to build meaningful, achievable change through focusing on a person's skills and resources rather than their deficits. The SOFIA Trial aims to explore the acceptability of SFBT to people with varying presentations of aphasia, including severe aphasia, and to assess the feasibility of conducting a future definitive trial investigating clinical and cost effectiveness. The trial is a single-blind, randomised, wait-list controlled Methods: feasibility trial with nested qualitative research and pilot economic evaluation comparing SFBT plus usual care to usual care alone. The study will recruit 32 participants with aphasia who are ≥6 months post stroke. All participants will be assessed on psychosocial outcome measures at baseline, three, and six months post randomisation by assessors blinded to treatment allocation. Participants will be randomly assigned to intervention group (start intervention immediately post randomisation) or wait-list group (start intervention six months post randomisation). Wait-list group will additionally be assessed nine months post randomisation. The intervention consists of up to six SFBT sessions delivered over three months by speech and language therapists. Participants and therapists will also take part in in-depth interviews exploring their experiences of the study. The pilot economic evaluation will use the EQ-5D-5L measure and an adapted Client Service Receipt Inventory. People with aphasia have been involved in designing and monitoring the trial. Given the high levels of depression and isolation, there is a Discussion: need to investigate effective interventions that enhance the psychological 1 2 3 4
PubMed, Mar 1, 2007
Aim: Health-related quality of life (HRQL) measures are becoming increasingly popular in evaluati... more Aim: Health-related quality of life (HRQL) measures are becoming increasingly popular in evaluating health care interventions and services. The stroke and aphasia quality of life scale-39 item (SAQOL-39) is an English questionnaire that measures HRQL in people with aphasia. There is currently no measure to assess the HRQL of Greek-speaking people with aphasia. This study began the cross-cultural adaptation of the SAQOL-39 into Greek, by translating and linguistically validating the instrument. Methods: The Mapi approach to linguistic validation was followed. The SAQOL-39 was forward translated into Greek and back-translated into English. The pilot version was produced by comparing the forward and backward translations. The resulting instrument was then reviewed by an expert professional and pilot tested with a sample of 10 people with aphasia. Results: Sixty-seven percent of back-translated items matched those in the original instrument. Only 20% of the items in the consensus version needed amendments for the pilot version. The pilot testing showed that the SAQOL-39 had good accessibility (no missing data), acceptability (maximum endorsement frequencies, MEF=or>70%; 9 out of 10 participants had no difficulty) and content validity (8 participants had nothing to add to the questionnaire). Conclusions: By employing the Mapi approach to linguistic validation, a close matching between the original and the Greek version of the SAQOL-39 was ensured. The Greek SAQOL-39 is accessible and acceptable to people with aphasia. Further research is needed on the psychometric properties of the Greek SAQOL-39 and on its appropriateness as a clinical outcome measure.
Aphasiology, Jun 19, 2014
Background: Stroke and aphasia can negatively affect a person's ability to maintain healthy socia... more 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: 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 was analysed qualitatively using Framework analysis. Outcomes and results: The systematic search resulted in 10 relevant blogs. Participants were aged between 26 to 69 years old, lived in the community, were at least one 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 were other people's positive or negative reactions towards the person with aphasia. Finally, the blogs reflected on the importance of support they had received, both from close family and also 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 3 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.
Journal of Neurology, Neurosurgery, and Psychiatry, Oct 1, 2007
Background and purpose: Health related quality of life outcomes are increasingly used to measure ... more 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.
Disability and Rehabilitation, 2011
Stroke rehabilitation programmes aim to improve functional outcomes and quality of life. This stu... more 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 three and six 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 six 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 three 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: People with aphasia participated in less 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. During the past week Did you
Clinical Rehabilitation, Aug 4, 2020
BMJ Open, Sep 1, 2013
To cite: Hilari K, Boreham L-D. Visual analogue scales in stroke: what can they tell us about hea... more To cite: Hilari K, Boreham L-D. Visual analogue scales in stroke: what can they tell us about health-related quality of life?.
Aphasiology, Apr 8, 2016
We are very grateful to all participating aphasia centres and the aphasic participants, and the b... more We are very grateful to all participating aphasia centres and the aphasic participants, and the bachelor SLT students at the HU University of Applied Sciences who were involved in the first stages of the development of this instrument.
Journal of Voice, Oct 1, 2022
J&R Press eBooks, 2011
Communication disorders are wide-ranging and extend across the entire lifespan. Yet research into... more Communication disorders are wide-ranging and extend across the entire lifespan. Yet research into speech and language impairment is relatively young, with the literature focusing primarily on the nature of the impairment and interventions to address it. As we discover more about speech-language disorder, the more important it becomes to investigate and report the impact of communication disorders on people's lives. Understanding this impact is the only way for clinicians to make their interventions relevant to their clients' lives and to incorporate their clients' perspective into clinical decision-making. Th e World Health Organization (WHO) has developed the International Classifi cation of Functioning, Disability and Health (ICF; WHO, 2001), which addresses the notion of impact in a number of diff erent areas. A key area is that entitled 'activity and participation'. Within this category, among other possible impacts the ICF lists communication, and others that are aff ected by communication such as learning, interpersonal interactions and relationships, community, social, and civic life and domestic life. Th is impact on life caused by communication impairment is the focus of the current text. We use 'impact' to encompass the ideas of quality of life (QoL)-a term which has gained ground in recent literature, particularly for adult populations, but without some of the conceptual diffi culties associated with this specifi c phrase. In 1995, Cummins reported that there were over 500 diff erent defi nitions of the term 'QoL'. Th us, we feel that 'impact' better describes the wide range of diff erent underlying causes, associations and eff ects of communication disability. In adult populations alone, a variety of diff erent challenges arise from diff ering sources. From the eff ects of laryngectomy (Lee, Chapter 15) and voice disorders (Oates, Chapter 14), through motor speech
The allied health professions and health promotion: a systematic literature review and narrative ... more The allied health professions and health promotion: a systematic literature review and narrative synthesis. Final report. NIHR Service Delivery and Organisation programme; 2011. Copyright information This report may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to NETSCC, SDO.
Child: Care, Health and Development
BackgroundThe COVID‐19 pandemic and response changed clinical service delivery and practice for s... more BackgroundThe COVID‐19 pandemic and response changed clinical service delivery and practice for speech and language therapists (SLTs) in the United Kingdom. SLTs work with children with neurodisability regarding both difficulties with their communication and eating and drinking skills (oropharyngeal dysphagia). This survey aimed to specifically explore the impact of the COVID‐19 pandemic on SLT practice for school‐aged children with dysphagia.MethodsUK‐based SLTs working with school‐aged children with neurodisability and oropharyngeal dysphagia were recruited to share their perceptions on the impact of COVID‐19 on practice. Four questions focusing on COVID‐19 impact were part of a larger online survey exploring SLT clinical practice regarding mealtime management of children with neurodisability and oropharyngeal dysphagia, which included demographic information, service delivery, assessment and intervention practices. COVID‐19 impact questions were a mixture of multiple choice and f...
International Journal of Language & Communication Disorders
BackgroundAfter total laryngectomy, surgical voice restoration is used to establish communication... more BackgroundAfter total laryngectomy, surgical voice restoration is used to establish communication via tracheoesophageal voice prosthesis. Once voice is established, there is a paucity of information on what speech and language therapists (SLTs) should do to improve tracheoesophageal voice quality to ensure functional communication. No existing surveys or studies investigate this specific question. There is also a disconnect between guidelines, knowledge and clinical practice, whereby clinical guidelines stipulate the requirement for SLT intervention, but do not detail what this entails in the rehabilitation context.Aims(1) To advance understanding of current clinical practice beyond voice prosthesis management and care. (2) To explore what approaches are implemented in clinical practice across the UK and Republic of Ireland to rehabilitate tracheoesophageal voice. (3) To investigate the barriers and facilitators to provision of tracheoesophageal voice therapy.Methods & ProceduresA s...
by Marian Brady, Audrey Bowen, Andrew Elders, Ann Charlotte Laska, Brian Macwhinney, Evy Visch-Brink, Erin Godecke, Jon Godwin, Katerina Hilari, Linda Worrall, Simon Horton, and Tarja Kukkonen
Background Aphasia is a common consequence of stroke, but to date, we lack high quality data on r... more Background
Aphasia is a common consequence of stroke, but to date, we lack high quality data on recovery profiles, the individual and treatment characteristics that contribute to optimum recovery. The RELEASE study plans to use retrospective secondary analyses of aphasia research datasets to generate high quality data on the natural history of language recovery following stroke, the predictors of language recovery and the components of effective aphasia rehabilitation interventions.
Funding
RELEASE is funded by the National Institutes of Health Research (HS&DR - 14/04/22) for 2 years, and is supported by the activities of the Collaboration of Aphasia Trialists (CATs: www.aphasiatrials.org).
It aims to bring together many (53 at the last count) sets of aphasia research data involving more than 3000 individual participants. By pooling these various sources of data we will create a large dataset from which we plan to address some key aphasia research questions.
Our research questions
• What are the components of aphasia therapy that best facilitate recovery after stroke?
• What is the natural history of recovery from aphasia (with and without access to therapy)?
• What are the individual (demographic and stroke related) factors that contribute to recovery from aphasia?
Stroke, Aug 1, 2003
Background and Purpose-Health-related quality of life (HRQL) is a key outcome in stroke clinical ... more Background and Purpose-Health-related quality of life (HRQL) is a key outcome in stroke clinical trials. Stroke-specific HRQL scales (eg, SS-QOL, SIS) have generally been developed with samples of stroke survivors that exclude people with aphasia. We adapted the SS-QOL for use with people with aphasia to produce the Stroke and Aphasia Quality of Life Scale (SAQOL). We report results from the psychometric evaluation of the initial 53-item SAQOL and the item-reduced SAQOL-39. Methods-We studied 95 people with long-term aphasia to evaluate the acceptability, reliability, and validity of the SAQOL and SAQOL-39 using standard psychometric methods. Results-A total of 83 of 95 (87%) were able to complete the SAQOL by self-report; their results are reported here. Results supported the reliability and validity of the overall score on the 53-item SAQOL, but there was little support for hypothesized subdomains. Using factor analysis, we derived a shorter version (SAQOL-39) that identified 4 subdomains (physical, psychosocial, communication, and energy). The SAQOL-39 demonstrated good acceptability, internal consistency (Cronbach's ␣ϭ0.74 to 0.94), test-retest reliability (intraclass correlation coefficientϭ0.89 to 0.98), and construct validity (corrected domain-total correlations, rϭ0.38 to 0.58; convergent, rϭ0.55 to 0.67; discriminant, rϭ0.02 to 0.27 validity). Conclusions-The SAQOL-39 is an acceptable, reliable, and valid measure of HRQL in people with long-term aphasia. Further testing is needed to evaluate the responsiveness of the SAQOL-39 and to investigate its usefulness in evaluative research and routine clinical practice.
Assessing health-related quality of life in people with aphasia.
http://isrctn.com/, 2018
Investigation of different therapy approaches for aphasia in the Greek language. (Unpublished Doc... more Investigation of different therapy approaches for aphasia in the Greek language. (Unpublished Doctoral thesis, City, Universtiy of London) This is the accepted version of the paper. This version of the publication may differ from the final published version.
AMRC open research, May 21, 2019
Around a quarter of people post stroke will experience Background: aphasia, a language disability... more Around a quarter of people post stroke will experience Background: aphasia, a language disability. Having aphasia places someone at risk of becoming depressed and isolated. There is limited evidence for effective interventions to enhance psychological well-being for this client group. A potential intervention is Solution Focused Brief Therapy (SFBT), which supports a person to build meaningful, achievable change through focusing on a person's skills and resources rather than their deficits. The SOFIA Trial aims to explore the acceptability of SFBT to people with varying presentations of aphasia, including severe aphasia, and to assess the feasibility of conducting a future definitive trial investigating clinical and cost effectiveness. The trial is a single-blind, randomised, wait-list controlled Methods: feasibility trial with nested qualitative research and pilot economic evaluation comparing SFBT plus usual care to usual care alone. The study will recruit 32 participants with aphasia who are ≥6 months post stroke. All participants will be assessed on psychosocial outcome measures at baseline, three, and six months post randomisation by assessors blinded to treatment allocation. Participants will be randomly assigned to intervention group (start intervention immediately post randomisation) or wait-list group (start intervention six months post randomisation). Wait-list group will additionally be assessed nine months post randomisation. The intervention consists of up to six SFBT sessions delivered over three months by speech and language therapists. Participants and therapists will also take part in in-depth interviews exploring their experiences of the study. The pilot economic evaluation will use the EQ-5D-5L measure and an adapted Client Service Receipt Inventory. People with aphasia have been involved in designing and monitoring the trial. Given the high levels of depression and isolation, there is a Discussion: need to investigate effective interventions that enhance the psychological 1 2 3 4
AMRC open research, Jul 15, 2019
Around a quarter of people post stroke will experience Background: aphasia, a language disability... more Around a quarter of people post stroke will experience Background: aphasia, a language disability. Having aphasia places someone at risk of becoming depressed and isolated. There is limited evidence for effective interventions to enhance psychological well-being for this client group. A potential intervention is Solution Focused Brief Therapy (SFBT), which supports a person to build meaningful, achievable change through focusing on a person's skills and resources rather than their deficits. The SOFIA Trial aims to explore the acceptability of SFBT to people with varying presentations of aphasia, including severe aphasia, and to assess the feasibility of conducting a future definitive trial investigating clinical and cost effectiveness. The trial is a single-blind, randomised, wait-list controlled Methods: feasibility trial with nested qualitative research and pilot economic evaluation comparing SFBT plus usual care to usual care alone. The study will recruit 32 participants with aphasia who are ≥6 months post stroke. All participants will be assessed on psychosocial outcome measures at baseline, three, and six months post randomisation by assessors blinded to treatment allocation. Participants will be randomly assigned to intervention group (start intervention immediately post randomisation) or wait-list group (start intervention six months post randomisation). Wait-list group will additionally be assessed nine months post randomisation. The intervention consists of up to six SFBT sessions delivered over three months by speech and language therapists. Participants and therapists will also take part in in-depth interviews exploring their experiences of the study. The pilot economic evaluation will use the EQ-5D-5L measure and an adapted Client Service Receipt Inventory. People with aphasia have been involved in designing and monitoring the trial. Given the high levels of depression and isolation, there is a Discussion: need to investigate effective interventions that enhance the psychological 1 2 3 4
PubMed, Mar 1, 2007
Aim: Health-related quality of life (HRQL) measures are becoming increasingly popular in evaluati... more Aim: Health-related quality of life (HRQL) measures are becoming increasingly popular in evaluating health care interventions and services. The stroke and aphasia quality of life scale-39 item (SAQOL-39) is an English questionnaire that measures HRQL in people with aphasia. There is currently no measure to assess the HRQL of Greek-speaking people with aphasia. This study began the cross-cultural adaptation of the SAQOL-39 into Greek, by translating and linguistically validating the instrument. Methods: The Mapi approach to linguistic validation was followed. The SAQOL-39 was forward translated into Greek and back-translated into English. The pilot version was produced by comparing the forward and backward translations. The resulting instrument was then reviewed by an expert professional and pilot tested with a sample of 10 people with aphasia. Results: Sixty-seven percent of back-translated items matched those in the original instrument. Only 20% of the items in the consensus version needed amendments for the pilot version. The pilot testing showed that the SAQOL-39 had good accessibility (no missing data), acceptability (maximum endorsement frequencies, MEF=or>70%; 9 out of 10 participants had no difficulty) and content validity (8 participants had nothing to add to the questionnaire). Conclusions: By employing the Mapi approach to linguistic validation, a close matching between the original and the Greek version of the SAQOL-39 was ensured. The Greek SAQOL-39 is accessible and acceptable to people with aphasia. Further research is needed on the psychometric properties of the Greek SAQOL-39 and on its appropriateness as a clinical outcome measure.
Aphasiology, Jun 19, 2014
Background: Stroke and aphasia can negatively affect a person's ability to maintain healthy socia... more 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: 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 was analysed qualitatively using Framework analysis. Outcomes and results: The systematic search resulted in 10 relevant blogs. Participants were aged between 26 to 69 years old, lived in the community, were at least one 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 were other people's positive or negative reactions towards the person with aphasia. Finally, the blogs reflected on the importance of support they had received, both from close family and also 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 3 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.
Journal of Neurology, Neurosurgery, and Psychiatry, Oct 1, 2007
Background and purpose: Health related quality of life outcomes are increasingly used to measure ... more 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.
Disability and Rehabilitation, 2011
Stroke rehabilitation programmes aim to improve functional outcomes and quality of life. This stu... more 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 three and six 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 six 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 three 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: People with aphasia participated in less 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. During the past week Did you
Clinical Rehabilitation, Aug 4, 2020
BMJ Open, Sep 1, 2013
To cite: Hilari K, Boreham L-D. Visual analogue scales in stroke: what can they tell us about hea... more To cite: Hilari K, Boreham L-D. Visual analogue scales in stroke: what can they tell us about health-related quality of life?.
Aphasiology, Apr 8, 2016
We are very grateful to all participating aphasia centres and the aphasic participants, and the b... more We are very grateful to all participating aphasia centres and the aphasic participants, and the bachelor SLT students at the HU University of Applied Sciences who were involved in the first stages of the development of this instrument.
Journal of Voice, Oct 1, 2022
J&R Press eBooks, 2011
Communication disorders are wide-ranging and extend across the entire lifespan. Yet research into... more Communication disorders are wide-ranging and extend across the entire lifespan. Yet research into speech and language impairment is relatively young, with the literature focusing primarily on the nature of the impairment and interventions to address it. As we discover more about speech-language disorder, the more important it becomes to investigate and report the impact of communication disorders on people's lives. Understanding this impact is the only way for clinicians to make their interventions relevant to their clients' lives and to incorporate their clients' perspective into clinical decision-making. Th e World Health Organization (WHO) has developed the International Classifi cation of Functioning, Disability and Health (ICF; WHO, 2001), which addresses the notion of impact in a number of diff erent areas. A key area is that entitled 'activity and participation'. Within this category, among other possible impacts the ICF lists communication, and others that are aff ected by communication such as learning, interpersonal interactions and relationships, community, social, and civic life and domestic life. Th is impact on life caused by communication impairment is the focus of the current text. We use 'impact' to encompass the ideas of quality of life (QoL)-a term which has gained ground in recent literature, particularly for adult populations, but without some of the conceptual diffi culties associated with this specifi c phrase. In 1995, Cummins reported that there were over 500 diff erent defi nitions of the term 'QoL'. Th us, we feel that 'impact' better describes the wide range of diff erent underlying causes, associations and eff ects of communication disability. In adult populations alone, a variety of diff erent challenges arise from diff ering sources. From the eff ects of laryngectomy (Lee, Chapter 15) and voice disorders (Oates, Chapter 14), through motor speech
The allied health professions and health promotion: a systematic literature review and narrative ... more The allied health professions and health promotion: a systematic literature review and narrative synthesis. Final report. NIHR Service Delivery and Organisation programme; 2011. Copyright information This report may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to NETSCC, SDO.
Child: Care, Health and Development
BackgroundThe COVID‐19 pandemic and response changed clinical service delivery and practice for s... more BackgroundThe COVID‐19 pandemic and response changed clinical service delivery and practice for speech and language therapists (SLTs) in the United Kingdom. SLTs work with children with neurodisability regarding both difficulties with their communication and eating and drinking skills (oropharyngeal dysphagia). This survey aimed to specifically explore the impact of the COVID‐19 pandemic on SLT practice for school‐aged children with dysphagia.MethodsUK‐based SLTs working with school‐aged children with neurodisability and oropharyngeal dysphagia were recruited to share their perceptions on the impact of COVID‐19 on practice. Four questions focusing on COVID‐19 impact were part of a larger online survey exploring SLT clinical practice regarding mealtime management of children with neurodisability and oropharyngeal dysphagia, which included demographic information, service delivery, assessment and intervention practices. COVID‐19 impact questions were a mixture of multiple choice and f...
International Journal of Language & Communication Disorders
BackgroundAfter total laryngectomy, surgical voice restoration is used to establish communication... more BackgroundAfter total laryngectomy, surgical voice restoration is used to establish communication via tracheoesophageal voice prosthesis. Once voice is established, there is a paucity of information on what speech and language therapists (SLTs) should do to improve tracheoesophageal voice quality to ensure functional communication. No existing surveys or studies investigate this specific question. There is also a disconnect between guidelines, knowledge and clinical practice, whereby clinical guidelines stipulate the requirement for SLT intervention, but do not detail what this entails in the rehabilitation context.Aims(1) To advance understanding of current clinical practice beyond voice prosthesis management and care. (2) To explore what approaches are implemented in clinical practice across the UK and Republic of Ireland to rehabilitate tracheoesophageal voice. (3) To investigate the barriers and facilitators to provision of tracheoesophageal voice therapy.Methods & ProceduresA s...
Disability and Rehabilitation
Purpose: This systematic review explored how virtual reality (VR) has been used to rehabilitate a... more Purpose: This systematic review explored how virtual reality (VR) has been used to rehabilitate aphasia. Materials and methods: Empirical studies were included where VR was used to target language, wellbeing, or quality of life in adults with acquired language impairment. Degenerative communication disabilities were excluded. Seven health databases were searched in October 2021. Risk of Bias was assessed using published checklists and completeness of intervention reporting evaluated. Narrative synthesis described forms of VR, rationales given, outcome measures, communication functions targeted, characteristics of interventions, and outcomes achieved within the framework of impairment, activity, and participation. Results: Fourteen studies, involving 229 participants, met the criteria. The studies employed four forms of VR with various rationales given. Interventions used published and novel protocols. Primary outcomes targeted language impairment (12/14), activity (1/14), and well-being (1/14) and achieved positive outcomes in impairment and activity. All studies were exploratory. Risk of bias was high. Findings are discussed in the context of gains achieved by VR in other health contexts and the multiuser gaming literature. Conclusions: Uses of VR in aphasia rehabilitation described in the literature are limited. Most applications target the remediation of language impairments. Opportunities to address activity, participation, and wider aspects of well-being are rare. � IMPLICATIONS FOR REHABILITATION � Research documenting the use of virtual reality (VR) to rehabilitate aphasia is limited and exploratory, so does not yet offer clear guidance for clinicians. � Many of the identified studies have used known published protocols (e.g., naming therapy or scripts therapy) delivered through the novel VR format and focus on language impairment outcomes. � VR offers clinicians a unique opportunity to address communication activity and participation through the use of multiuser virtual worlds, but this has only been explored by only two research teams.