Making Healthcare Decisions: Is Your Voice Missing?

As part of Cafe Science Dundee, SDHI co-director Professor Thilo Kroll, will be giving a talk entitled ‘Making Healthcare Decisions: Is your Voice Missing? on Monday 26th May at 7pm in Avery & Co, 34 South Tay Street, Dundee.

Everyone has the right to receive the same health care quality and everyone should have the right to be involved in decisions about health care. These rights should also allow anyone to participate in the research that leads to improvements in health. But what if your voice is not heard, just because you are disabled? Come and find out about the barriers that people with disabilities face in making their voice heard and their views known in health care.

All welcome to attend this free event.

Making Healthcare Decisions Poster

Webinar recording on Human Rights, Violence, Spinal Cord Injury and Rehabilitation in Haiti Now Available

Fiona Stephenson, Clinical Nurse Specialist and founding member of the Haiti Spinal Cord Injury Working Group and Co-ordinator of the Haiti Spinal Cord Injury (SCI) Database presented an inspiring and insightful webinar on the context of violence as the leading cause of spinal cord injuries in Haiti. Fiona, who is also a Co-Founder of the International Network of Spinal Cord Injury Nurses and the International Spinal Cord Society (ISCoS), discussed in her webinar the challenges to providing basic life sustaining care and rehabilitation for gunshot injury survivors in a resource poor environment. Mortality and medical complications are extremely high, skill and extensive despite the great skill, creative mindsets and phenomenal willpower of the health care teams on the ground. The earthquake that shattered Haiti in 2010 has taken a further toll on a very rudimentary health care infrastructure. Gun violence is not abating. Despite much innovation and legislative changes, people who live with the disabling consequences of violence still find it difficult to find support, accessible environments and opportunities for full societal participation and inclusion. Many promising facilities are threatened by closure due to a lack of funding. But despite all adversity, there were many stories of hope, human spirit and resilience, of people pulling together and becoming advocates for their own life, against gun violence and for better support services and health care.

Fiona’s webinar presentation can be viewed here.  We will add an audiopodcast shortly.

Dr Damien Williams, School of Medicine, University of St Andrews gave a very nuanced and greatly reflective response to Fiona Stephenson’s presentation. 

If you would like to learn more about gun violence in Haiti and its disabling consequences, we recommend to purchase the book ‘Gun Violence, Disability and Recovery’, edited by Cate Buchanan, Director of the Surviving Gun Violence Project. The book is available as an ebook or paperback on the organisation’s website

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Strong SDHI representation at the American Public Health Association Annual Meeting and Expo in Boston

Like in the previous year, SDHI affiliated researchers had a substantial presence at this years largest academic and professional public health conference with an estimated 13000 delegates. SDHI Associate Director Professor Peter Donnelly (St Andrews) hosted a special session on the recent Sandy Hook School Shooting in Boston, which brought together different perspectives ranging from parents, criminologists to policy makers.

Damien Williams presented posters on the relationship between community and domestic violence and football matches in Glasgow as well as on alcohol use quantities and patterns among university students at St Andrews.  Thilo Kroll contributed to a special session organised by the Disability Chairs Forum of the APHA Disability Section on ‘The a Construction of Disability and Health: The Role of Spaces and Places’, a discussion which continues on Facebook, and to a presentation entitled ‘Addressing the psychosocial support needs of cancer co-survivors in low income communities’ as part of a session on ‘Social Determinants of Behavioral Health: Addressing Root Causes through Public Policy and Community Practice’ . The latter also introduced SDHI’s sister platform, FRED (family focused research, education and development), which aims to bring together researchers, practitioners and families globally to examine and tackle social deprivation and marginalisation issues related to health. At present researchers from the Unites States, Finland and the UK are engaged in this effort. Thilo also presented three posters relating to a recently completed study on outcome measurement after stroke. The posters focused on rehabilitation professionals’ attitudes to outcome measure use, rationale for selecting outcome measures, and engagement of stroke survivors with aphasia in the discussion about what matters after stroke.  Shiraz Sheriff, PhD student who is supported by SDHI team directors Ed Hall and Thilo Kroll presented his poster, entitled ‘Asthma, deprivation and the urban environment in Scotland: Evidences, challenges and directions‘. For the first time SDHI was also involved in the APHA Film Festival where Lisa Nicoll’s film ‘Wasteland’ was shown. A productive evening session with PhD students has further linked SDHI’s research portfolio and support for postgraduate researchers to a wider international group, which is part of the internationalisation ambitions of SDHI. The presence of SDHI at APHA was particularly poignant this year as the motto of the conference was ‘Think global, act local: Best practices around the world’.

Older people struggle with new hearing aids

A multi-method study by Tim Kelly and colleagues in Dundee and Glasgow has highlighted that approximately 50% of older people receiving hearing aids report that they did not receive sufficient information and preparation to use the device. Details from the study can be found in an article that was just published in the journal Health and Social Care in the Community. 

Multi-stakeholder event highlighted challenges in using standardised patient-reported outcome measures (PROMS) with low literacy and learning disabled populations

On Friday, 23 November hosted a well received dissemination event for a project funded as a Knowledge Transfer Project (KTP). The project was conducted in partnership between Healthcare Improvement Scotland and the Universities of Glasgow and Dundee. We have reported previously about this project and also presented a Webinar.
This project explored people’s views on ‘Patient Reported Outcome Measures’ (PROMs). These measures are health questionnaires patients complete in a clinic about their symptoms, health condition and current emotional Wellbeing. The NHS in England is using this set of very disparate measures to ascertain patient reported pre-post intervention effects for acute procedures such as knee and hip replacement surgery. The rationale is that these routinely collected data sources will inform decisions about health care improvement planning. Our project specifically focused on the accessibility of PROMs for people with low literacy and learning disabilities.
The research team has developed a guide that will help professionals to reflect about the appropriateness of using PROMS and how to administer them with assistance to avoid excluding people who may find it difficult to complete complex questionnaires. The guide is based on our discussions with patients and professionals about how PROMs could be made more accessible and easy to use. Eventually, the guide will be available on the NHS Knowledge Network website.
The event was used to launch the guide. We invited all stakeholders from many backgrounds, including service users with learning disabilities, health care practitioners, academics and policymakers. Around 30 people attended and listened and discussed four presentations, which were held by Richard Norris, Scottish Health Council; Deepa Jahagirdar, KTP Associate, Glasgow; Dr Eddie Duncan, University of Stirling; Dr Phyllis Easton, NHS Tayside and SDHI. The speakers focused on the role of PROMS in the context of Scottish Health Policy and Quality Improvement, the use of standardised outcome measures by clinical professionals, the invisibility of low literacy, and the PROMS project itself. We used several tools to ensure this event was accessible, inclusive and beneficial for everyone. For example, everyone had red and green cards. Attendees could use the red cards to stop speakers and ask questions and green cards to indicate the presentation was clear. Attendees were free to stop the presentations at any point, discuss the issues that were raised, and clarify points. This informality sparked interesting and informative discussion.
The dissemination event raised awareness about the NHS’ plans to use PROMs and the potential exclusion of people with low literacy and learning disabilities.

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Forthcoming Seminar – Employer practices in retention, advancement, and inclusion of people with disabilities

SDHI are delighted to announce our forthcoming seminar ‘Employer practices in retention, advancement, and inclusion of people with disabilities’ which will be led by Susanne Bruyère, Professor of Disability Studies, Director of Employment & Disability Institute, ILR School, Cornell University.  This seminar will be held in Room 2S17, Dalhousie Building, University of Dundee at 11am on Monday 17th September   For further information please see flyer Susanne Bruyere seminar 17 September 2012