Access G-AP: development of an accessible goal setting and action planning resource for stroke survivors with aphasia

Purpose: Goal setting is key to stroke rehabilitation, but access for people with aphasia is challenging. Based on the Goal setting and Action Planning (G-AP) framework, we developed an accessible goal setting resource (Access G-AP). Methods: Access G-AP was designed using a three-phase, user-centred design process. Phase 1: Access G-AP Draft A was designed using evidence-based recommendations. Phase 2: Draft A was reviewed by stroke survivors with aphasia (focus groups 1&2) and rehabilitation staff (questionnaire). Phase 3: Suggested recommendations informed Access G-AP Draft B, which was further reviewed by stroke survivors with aphasia (focus group 3). The final version of Access G-AP was approved by stroke survivors with aphasia at a debrief meeting. Data were analysed using content analysis. Results: Recommended design improvements included reducing text, adding bullet points, and diversifying images. Both participant groups highlighted that Access G-AP should be used collaboratively to support stroke survivor involvement. Staff recommended Access G-AP training and additional resources to support stroke survivors with severe aphasia. Conclusions: Access G-AP was co-developed to support people with aphasia to access and engage in stroke rehabilitation goal setting. Further research is required to establish the feasibility of Access G-AP in clinical practice

Drugs affecting the renin-angiotensin system and survival from cancer: a population based study of breast, colorectal and prostate cancer patient cohorts

BACKGROUND: Angiotensin-converting enzyme inhibitors (ACEIs) and angiotensin II receptor blockers (ARBs) are commonly prescribed to the growing number of cancer patients (more than two million in the UK alone) often to treat hypertension. However, increased fatal cancer in ARB users in a randomized trial and increased breast cancer recurrence rates in ACEI users in a recent observational study have raised concerns about their safety in cancer patients. We investigated whether ACEI or ARB use after breast, colorectal or prostate cancer diagnosis was associated with increased risk of cancer-specific mortality. METHODS: Population-based cohorts of 9,814 breast, 4,762 colorectal and 6,339 prostate cancer patients newly diagnosed from 1998 to 2006 were identified in the UK Clinical Practice Research Datalink and confirmed by cancer registry linkage. Cancer-specific and all-cause mortality were identified from Office of National Statistics mortality data in 2011 (allowing up to 13 years of follow-up). A nested case–control analysis was conducted to compare ACEI/ARB use (from general practitioner prescription records) in cancer patients dying from cancer with up to five controls (not dying from cancer). Conditional logistic regression estimated the risk of cancer-specific, and all-cause, death in ACEI/ARB users compared with non-users. RESULTS: The main analysis included 1,435 breast, 1,511 colorectal and 1,184 prostate cancer-specific deaths (and 7,106 breast, 7,291 colorectal and 5,849 prostate cancer controls). There was no increase in cancer-specific mortality in patients using ARBs after diagnosis of breast (adjusted odds ratio (OR) = 1.06 95% confidence interval (CI) 0.84, 1.35), colorectal (adjusted OR = 0.82 95% CI 0.64, 1.07) or prostate cancer (adjusted OR = 0.79 95% CI 0.61, 1.03). There was also no evidence of increases in cancer-specific mortality with ACEI use for breast (adjusted OR = 1.06 95% CI 0.89, 1.27), colorectal (adjusted OR = 0.78 95% CI 0.66, 0.92) or prostate cancer (adjusted OR = 0.78 95% CI 0.66, 0.92). CONCLUSIONS: Overall, we found no evidence of increased risks of cancer-specific mortality in breast, colorectal or prostate cancer patients who used ACEI or ARBs after diagnosis. These results provide some reassurance that these medications are safe in patients diagnosed with these cancers

How can medical schools contribute to bringing about health equity?

The role of medical schools is in a process of change. The World Health Organization has declared that they can no longer be ivory towers whose primary focus is the production of specialist physicians and cutting edge laboratory research. They must also be socially accountable and direct their activities towards meeting the priority health concerns of the areas they serve. The agenda must be set in partnership with stakeholders including governments, health care organisations and the public.<p></p> The concept of social accountability has particular resonance for the Bar Ilan Faculty of Medicine in the Galilee, Israel’s newest medical school, which was established with a purpose of reducing health inequities in the Region. As a way of exploring and understanding the issues, discussions were held with international experts in the field who visited the Galilee. A symposium involving representatives from other medical schools in Israel was also held to extend the discourse. Deliberations that took place are reported here.<p></p> The meaning of social accountability was discussed, and how it could be achieved. Three forms of action were the principal foci – augmentation of the medical curriculum, direct action through community engagement and political advocacy. A platform was set for taking the social accountability agenda forward, with the hope that it will impact on health inequalities in Israel and contribute to discussions elsewhere

Protocol for the development of the international population registry for aphasia after stroke (I-PRAISE)

Background: We require high-quality information on the current burden, the types of therapy and resources available, methods of delivery, care pathways and long-term outcomes for people with aphasia. Aim: To document and inform international delivery of post-stroke aphasia treatment, to optimise recovery and reintegration of people with aphasia. Methods & Procedures: Multi-centre, prospective, non-randomised, open study, employing blinded outcome assessment, where appropriate, including people with post-stroke aphasia, able to attend for 30 minutes during the initial language assessment, at first contact with a speech and language therapist for assessment of aphasia at participating sites. There is no study-mandated intervention. Assessments will occur at baseline (first contact with a speech and language therapist for aphasia assessment), discharge from Speech and Language Therapy (SLT), 6 and 12-months post-stroke. Our primary outcome is changed from baseline in the Amsterdam Nijmegen Everyday Language Test (ANELT/Scenario Test for participants with severe verbal impairments) at 12-months post-stroke. Secondary outcomes at 6 and 12 months include the Therapy Outcome Measure (TOMS), Subjective Index of Physical and Social Outcome (SIPSO), Aphasia Severity Rating Scale (ASRS), Western Aphasia Battery Aphasia Quotient (WAB-AQ), stroke and aphasia quality of life scale (SAQoL-39), European Quality of Life Scale (EQ-5D), lesion description, General Health Questionnaire (GHQ-12), resource use, and satisfaction with therapy provision and success. We will collect demography, clinical data, and therapy content. Routine neuroimaging and medication administration records will be accessed where possible; imaging will be pseudonymised and transferred to a central reading centre. Data will be collected in a central registry. We will describe demography, stroke and aphasia profiles and therapies available. International individual participant data (IPD) meta-analyses will examine treatment responder rates based on minimal detectable change & clinically important changes from baseline for primary and secondary outcomes at 6 and 12 months. Multivariable meta-analyses will examine associations between demography, therapy, medication use and outcomes, considering service characteristics. Where feasible, costs associated with treatment will be reported. Where available, we will detail brain lesion size and site, and examine correlations with SLT and language outcome at 12 months. Conclusion: International differences in care, resource utilisation and outcomes will highlight avenues for further aphasia research, promote knowledge sharing and optimise aphasia rehabilitation delivery. IPD meta-analyses will enhance and expand understanding, identifying cost-effective and promising approaches to optimise rehabilitation to benefit people with aphasia

Evaluating conversation partner programmes: perspectives of people with aphasia

Background Stroke is the most common cause of disability in the western World. Approximately 176,000 new individuals in the United Kingdom and Ireland are diagnosed with stroke annually with up to one third experiencing aphasia. Aphasia is a chronic language disorder impairing comprehension, expression, reading, writing and spelling. The majority of people living with aphasia are over 65 years and live in the community. One of the most disabling impacts of aphasia is the way that it excludes the person from everyday conversation. People with Aphasia (PWA) frequently experience social isolation and marginalisation. The Conversation Partner Programme (CPP) is a community based aphasia intervention that emphasises communicative competence and life participation. Currently there is no national or international system for evaluating CPPs. Following policy imperatives for Patient and Public Involvement (PPI) and the recommendations of the World Report on Disability (WHO) it is important to involve service users in service design and evaluation. However, PWA are often excluded because of their communication disability. To create a CPP evaluation system PWA and other key stakeholder groups must determine core evaluation criteria. Service Learning (SL), the pedagogical tool used to implement the CPP in this study must also be examined because the mode of delivery is central to stakeholders' perceptions and experiences. Aims The primary aim is to: (1) use a Participatory Learning and Action (PLA) approach to include PWA and other key stakeholders as co-researchers in identifying CPP evaluation criteria. A secondary objective is to: (2) examine the effectiveness of SL the pedagogical tool underpinning the CPP. Methods Following a pilot study, the generation and analysis of qualitative data using a PLA approach was conducted. Using purposeful sampling, participants (n=26) including PWA (n=5); Speech and Language Therapists (SLTs) (n=5); students (n=9); educators (n=6) and the CPP co-ordinator (n=1) were recruited and involved as co-researchers. Using PLA techniques to generate and analyse data (Flexible Brainstorming, Card Sort, Direct Ranking; Seasonal Calendar and PLA interviewing) in individual groups, or in interstakeholder groups (n=22), co-researchers explored the lived experience of aphasia and identified CPP evaluation criteria. The principles of thematic analysis guided the co-analysis of data generated with stakeholder groups. Data generated in Ireland were presented to a leading non-governmental organisation for PWA in the United Kingdom, as a preliminary exploration of the transferability of findings. The effectiveness of SL was explored with key stakeholder groups using: (1) qualitative methods (PLA focus groups; interviews; orthodox focus groups) and (2) through a critical review of the SL literature in pre-professional healthcare curricula. Results In response to the primary research aims, co-researchers with aphasia generated eight themes in their own words to capture the lived experience of aphasia, including: (1) Back to pre-school; (2) Tiredness; (3) It’s Like in Prison; (4) Emotions; (5) Not able to talk the words; (6) Escape; (7) Changing and Adapting; and (8) Family. The multi-perspectival analysis of the CPP resulted in the identification and prioritisation of evaluation criteria from the emic perspective of stakeholders including: (1) shared understanding of structure, (2) clarity about the programme, (3) agreed evaluation mechanism, (4) linking with other organisations and (5) feedback. PWA reported that feelings of communicative incompetence were minimised and social connectedness was increased through participation in the programme. In response to the secondary research objective, SL appears to be an appropriate pedagogical tool to underpin the CPP because it supports mutuality and reciprocity in university and community partnerships. However the inconsistency in terminology to describe SL internationally and the paucity of robust methodological studies to establish effectiveness warrant further research. Conclusion This study critically interrogated communication disability as a barrier to inclusion in research. Using participatory research methods, PWA and other key stakeholders meaningfully participated as co-researchers in the evaluation of a primary care conversation intervention and examined the impacts of SL. This novel collaborative work generated new empirical evidence about the lived experience of aphasia and resulted in agreed CPP evaluation criteria. This study also found that SL is a suitable pedagogical tool to embed the CPP in a University setting. These findings will directly impact the Galway CPP and may be transferable to other similar conversation interventions nationally and internationally. Findings and methods will be of interest to healthcare professionals; service users; educators and researchers seeking to involve marginalised groups, especially people with communication disabilities, in scholarship and research.2021-12-1

Exploration of cognitive and behavioural factors that influence the management of type 2 diabetes

Background The research was part of a large commissioned research project funded by the R&D Office Belfast, in relation to the Targeting Social Need (TSN) programme. Introduction The active management of diabetes requires adherence to a healthy diet and participation in physical activity, assisted by an array of treatment modalities. The aim of this research project was to explore a range of demographic, cognitive and behavioural factors that may explain the variation in an individual's management of Type 2 diabetes. Methods A cross-sectional sample of patients with Type 2 diabetes based on socio-economic deprivation was drawn from a hospital register. Patients were interviewed in their own homes on factors such as diabetes knowledge, barriers to physical activity, dietary intake and perceived mastery. Results A total of (n=446) patients participated (57% males, x age=64.7, sd =11.5 and a x duration of diabetes 11.2 years). Three types of dietary behaviour were identified those of a 'virtuous nature', those of a 'typical nature' and 'sinners'. Being a female signaled an increased risk of being in the 'sinners group' (OR= 2.267, CI=1.432-3.589). Females reported poorer mental health, greater barriers to participating in physical activity and adhering to a diet. Males (r=.205, p<O.Ol), those with a higher income (r= .187, p<O.Ol) and older patients (r= .161, p<O.Ol) tended to have a higher score on the mastery measure. Those participants in receipt of income support, with no educational qualifications and those who did not own their home were less likely to attain a high score in the knowledge test. Conclusion The influence of the socialisation role of women in chronic disease management could offer a possible explanation to poorer self-management behaviours. Recommendations Evidence that women face greater difficulties in adapting to the demands of diabetes will allow for more effective targeting of future educational and intervention based programmes.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Evaluating conversation partner programmes: perspectives of people with aphasia

Background Stroke is the most common cause of disability in the western World. Approximately 176,000 new individuals in the United Kingdom and Ireland are diagnosed with stroke annually with up to one third experiencing aphasia. Aphasia is a chronic language disorder impairing comprehension, expression, reading, writing and spelling. The majority of people living with aphasia are over 65 years and live in the community. One of the most disabling impacts of aphasia is the way that it excludes the person from everyday conversation. People with Aphasia (PWA) frequently experience social isolation and marginalisation. The Conversation Partner Programme (CPP) is a community based aphasia intervention that emphasises communicative competence and life participation. Currently there is no national or international system for evaluating CPPs. Following policy imperatives for Patient and Public Involvement (PPI) and the recommendations of the World Report on Disability (WHO) it is important to involve service users in service design and evaluation. However, PWA are often excluded because of their communication disability. To create a CPP evaluation system PWA and other key stakeholder groups must determine core evaluation criteria. Service Learning (SL), the pedagogical tool used to implement the CPP in this study must also be examined because the mode of delivery is central to stakeholders' perceptions and experiences. Aims The primary aim is to: (1) use a Participatory Learning and Action (PLA) approach to include PWA and other key stakeholders as co-researchers in identifying CPP evaluation criteria. A secondary objective is to: (2) examine the effectiveness of SL the pedagogical tool underpinning the CPP. Methods Following a pilot study, the generation and analysis of qualitative data using a PLA approach was conducted. Using purposeful sampling, participants (n=26) including PWA (n=5); Speech and Language Therapists (SLTs) (n=5); students (n=9); educators (n=6) and the CPP co-ordinator (n=1) were recruited and involved as co-researchers. Using PLA techniques to generate and analyse data (Flexible Brainstorming, Card Sort, Direct Ranking; Seasonal Calendar and PLA interviewing) in individual groups, or in interstakeholder groups (n=22), co-researchers explored the lived experience of aphasia and identified CPP evaluation criteria. The principles of thematic analysis guided the co-analysis of data generated with stakeholder groups. Data generated in Ireland were presented to a leading non-governmental organisation for PWA in the United Kingdom, as a preliminary exploration of the transferability of findings. The effectiveness of SL was explored with key stakeholder groups using: (1) qualitative methods (PLA focus groups; interviews; orthodox focus groups) and (2) through a critical review of the SL literature in pre-professional healthcare curricula. Results In response to the primary research aims, co-researchers with aphasia generated eight themes in their own words to capture the lived experience of aphasia, including: (1) Back to pre-school; (2) Tiredness; (3) It’s Like in Prison; (4) Emotions; (5) Not able to talk the words; (6) Escape; (7) Changing and Adapting; and (8) Family. The multi-perspectival analysis of the CPP resulted in the identification and prioritisation of evaluation criteria from the emic perspective of stakeholders including: (1) shared understanding of structure, (2) clarity about the programme, (3) agreed evaluation mechanism, (4) linking with other organisations and (5) feedback. PWA reported that feelings of communicative incompetence were minimised and social connectedness was increased through participation in the programme. In response to the secondary research objective, SL appears to be an appropriate pedagogical tool to underpin the CPP because it supports mutuality and reciprocity in university and community partnerships. However the inconsistency in terminology to describe SL internationally and the paucity of robust methodological studies to establish effectiveness warrant further research. Conclusion This study critically interrogated communication disability as a barrier to inclusion in research. Using participatory research methods, PWA and other key stakeholders meaningfully participated as co-researchers in the evaluation of a primary care conversation intervention and examined the impacts of SL. This novel collaborative work generated new empirical evidence about the lived experience of aphasia and resulted in agreed CPP evaluation criteria. This study also found that SL is a suitable pedagogical tool to embed the CPP in a University setting. These findings will directly impact the Galway CPP and may be transferable to other similar conversation interventions nationally and internationally. Findings and methods will be of interest to healthcare professionals; service users; educators and researchers seeking to involve marginalised groups, especially people with communication disabilities, in scholarship and research.2021-12-1

Training socially responsive healthcare graduates: Is Service Learning an effective educational approach?

Health care educators strive to train graduates who are socially responsive and can act as “change agents” for communities they serve. Service learning (SL) is increasingly being used to teach the social aspects of health care and develop students’ social responsiveness. However, the effectiveness of SL as an educational intervention has not been established