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NMAHP Research Unit ebulletin Mar/Apr 2017
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A SMART consensus:

Standardising Measures in Arm Rehabilitation Trials


Julie Duncan MillarOver three quarters of people who survive a stroke have difficulties with movement and feeling in one arm. This can affect everything from looking after themselves (going to the toilet, washing, dressing) to everyday practicalities (cooking, working, driving) to hobbies (painting, playing an instrument, gardening). Not surprisingly, effective upper limb stroke rehabilitation is a research priority. However, lack of agreement about which outcomes are most important to measure makes it hard to compare studies in a way that helps clinicians such as physio and occupational therapists make decisions about how best to help their clients. Through her SMART PhD research (Standardising Measures in Arm Rehabilitation Trials), Julie Duncan Millar is working with stroke survivors, carers, health professionals and researchers to reach a consensus on what arm outcomes matter most. As the study moves into its final phase, Julie is looking forward to its impact: “In future, any researcher will be able to select the best outcome measures for their stroke upper limb rehabilitation trial, knowing that the available choices have come from a robust process involving people with the most experience and knowledge of the problem.”

In phase 1 of the project, Julie identified over 180 different assessment tools that had been used in randomised controlled trials. In phase 2 she used a nominal group technique with stroke survivors and their carers (and separately with healthcare professionals) as well as qualitative interviews to identify the diverse range of arm outcomes that mattered most to them. Phase 3 is underway, comprising two eDelphi rounds with upper limb researchers, leading to a final consensus meeting ahead of the European Forum for Research in Rehabilitation conference at Glasgow Caledonian University. 

The eDelphi involves researchers from all over the world, at the last count 16 countries. In round one, each participant will be asked how important each of 150 listed outcome measures is for inclusion in the SMART toolbox. In round two, they will also be shown how respondents as a whole ranked these outcome measures. Each participant will then be asked to re-score the list, this time taking the group consensus into account as well as their own views. The process will culminate on 24th May when stroke survivors, carers, health professionals and researchers are brought together to agree on the final content of the SMART toolbox. 

Julie hopes this will be a smaller and clearer group of outcome measures that are ultimately more relevant, meaningful and useful. She adds, “By generating and recommending a toolbox of robust outcome measures, we aim to make data from upper limb stroke rehabilitation trials more directly comparable. This is important because it will allow researchers to pool data and examine intervention effectiveness across different studies. Ultimately this will benefit patients, as rehabilitation clinicians will have better information on which to base decisions and plan improvements to their services.”
The Tavistock Trust for Aphasia

Supporting international Collaboration of Aphasia Trialists (CATs) network into its second phase


The future of a groundbreaking international multidisciplinary network of aphasia researchers has been secured for the next three years thanks to a grant from The Tavistock Trust for Aphasia (TTA). A full-time 3 year PhD studentship is also available to support the development of the next generation of aphasia trialists. Unit staff including Marian Brady have been active in the Collaboration of Aphasia Trialists (CATs) since it was established in 2013 through the EU Cooperation in Science and Technology (COST) framework. Marian, who chairs the group, says, “CATs has been a vital route to high quality aphasia research that is international, multidisciplinary, inclusive and fit for purpose. We have grown to 150 members from 26 countries, and The Tavistock Trust for Aphasia funding gives us a very welcome opportunity to expand the network and develop new grants and projects. This will make even more of a difference to people with aphasia, while at the same time building aphasia research capacity worldwide.” In choosing to fund the second phase of CATs, the TTA Trustees were particularly excited at the prospect of supporting an expansion of the network’s remit. This will now include aphasia research beyond stroke, and from additional countries including the United States and Canada. 

The first phase of CATs concluded with a conference in Rotterdam where Marian announced the TTA funding and Unit colleagues Myzoon Ali and Louise Williams presented on aphasia projects i-PRAISE and RELEASE. The second phase will rely more on technology to support collaborative activities among the increasingly international membership, with the network’s interactive website continuing to play a key role. The exact topic of the PhD studentship will be shaped by the successful applicant, but will be aligned to one of the CATs' working groups (assessment and outcomes; predictors and prognosis; effectiveness of interventions; societal impact and reintegration). The closing date is 17th April, with interviews on 4th May.

You can find out more about CATs and all the Unit's other stroke-related work by dropping in to our Life After Stroke Open Day at Glasgow Caledonian University on the afternoon of Friday 12th May.

Aphasia is an acquired difficulty with language following a stroke or other type of brain injury. It affects understanding of what is heard, speaking, reading and writing. CATs’ membership includes experts in neurology, stroke, rehabilitation, linguistics, neuropsychology, speech and language therapy, neuroscience, anthropology, audiology and statistics. They share a common goal of high quality aphasia research that addresses the needs of people with aphasia, their families, health and social care providers, and voluntary groups. 

The Tavistock Trust for Aphasia is the only grant-making trust in the UK that focuses solely on aphasia. It was founded in 1992 by Robin Tavistock (the late 14th Duke of Bedford) who had severe aphasia following a brain haemorrhage in 1988. The Trustees are committed to advancing the standard of aphasia research to help improve the quality of life of people with aphasia and their families and carers.

Helping women SKIP-IT:

Stopping smoking in pregnancy and beyond


Emma KingNearly a fifth of women in Scotland are recorded as smokers at their first antenatal appointment, with a much higher proportion in our most deprived areas. Although smoking during pregnancy carries serious risks for both mother and baby, giving up is really hard. Unfortunately, current interventions only help a small number of pregnant women to stop. Our new SKIP-IT study aims to find out how we can best test whether carefully crafted text messages are more effective in helping pregnant women stop smoking. Research Fellow Emma King explains, “As part of her PhD, Mary Steele had already developed and done some testing of an intervention which is delivered by automated text messages from 14 weeks of pregnancy until birth. It’s built around the story of a fictional young pregnant woman, Megan, who offers advice based on her own experience of trying to stop smoking. The messages women receive include images showing the size and developmental stage of their own growing baby, and there is an interactive self-help function. We’re now working with Aberlour Scotland’s Children’s Charity, and midwives and smoking cessation advisors in our two sites, to extend the intervention to six weeks after the birth and test it out with focus groups of women who have recent experience of smoking during pregnancy.”

Existing research suggests that self-help interventions have potential but that women who smoke during pregnancy often feel judged, so may be reluctant to take part in studies if asked by a midwife. In addition to extending the length of the intervention, the feasibility part of SKIP-IT (phase 1) will therefore also include working with smoking cessation services, midwives, mothers and local communities to find the best way of recruiting pregnant smokers to a pilot trial (phase 2).

The pilot trial will involve 70 pregnant women who smoke. Half will continue with their ‘usual care’, which is likely to be the standard NHS smoking cessation help, and the other half will also be offered the text-based intervention. This comparison will demonstrate whether the new intervention shows sufficient promise – both in its acceptability to women and its potential impact on smoking in pregnancy – to make it worthwhile investing in a full-scale trial.

SKIP-IT is funded by the Chief Scientist Office. Helen Cheyne, who leads the project, says, “Women from disadvantaged groups have poorer outcomes of pregnancy, and smoking adds considerably to this burden. Recorded rates of smoking in the most deprived areas have been as high as 38 per cent in pregnant women under the age of 20. We urgently need better interventions that will help reduce the number of preventable stillbirths and neonatal deaths, and improve the health of mothers and babies. SKIP-IT is vital preparatory work to get us to that stage.”

Developing research skills:

The benefits of an applied health MRes route


Fiona HarrisIf you are interested in developing your understanding of research methods and how they can be applied, why not consider a Masters by Research? In 2010 Stirling University introduced an interdisciplinary MRes in Health Research, which was an early pioneer of online learning. The Unit’s Fiona Harris (pictured), recently appointed as Course Director, has seen it grow to its current cohort of 47 national as well as international students from as far afield as China, the Middle East and Australia. They include Nicola Gillespie, a midwife who is completing the MRes part-time while working full-time as a research assistant in our Glasgow Caledonian University office, and Lynne Gilmour, the Unit’s first recipient of an Economic and Social Research Council 1+3 award. This prestigious scheme funds future research leaders for a full-time MRes year as well as a subsequent three year PhD. Fiona is the national Convenor of the ESRC Health, Families, Relationships and Demographic Change Pathway that allocates these awards.

So what does the MRes entail, and how do you know if it’s the right course for you? Nicola caught the research bug in the third year of her midwifery degree. She says that, although evidence based practice is the essence of what midwives do, 12 hour shifts left little opportunity to question or improve the way things were done, so when a research assistant post came up she decided to apply. Having enjoyed three years with the AnTIC trial (Antibiotic Treatment for Intermittent Bladder Cathererisation), Nicola was delighted when the BABI (Breast and Breast pump Incentives) project gave her the chance to go back to her midwifery roots. In seeking funding from the Glasgow Children’s Hospital Charity, lead researcher and former MRes lecturer Rhona McInnes had emphasised the opportunity to develop Nicola as a clinical academic, and a Cameron Carnegie Bursary is covering her MRes fees over two years. She says, “It’s intense – especially on a Sunday morning - and difficult to juggle with family life and full-time work. On the plus side, you learn a lot, the lecturers are approachable, and the course is organised logically to cover all aspects of the research process.”
 
Lynne has nearly twenty years’ experience working with children and young people who have experienced trauma. Her PhD and research interests lie in pathways of care for children who are suicidal, intervention for children who are suicidal, and more generally in supporting and understanding children who experience trauma and abuse. Following a competitive process, and with Unit Director Margaret Maxwell on board as first supervisor, Lynne was chosen for an ESRC award. She explains, “The MRes for me is the first leg of my academic journey, and is really helping to give me a grounding in research methods and design before I embark on my PhD this October.”

As Course Director, Fiona has a unique overview of the different routes into, through and beyond the MRes: “From the start it’s been designed with flexibility in mind to suit people joining from a distance and with other work and family commitments. Modules are also available as standalone continuing professional development opportunities. They’re not just academically challenging but give you valuable experience of real-world research skills. The research placement is particularly popular, and through that we’ve seen previous students gain their first experience as co-authors of papers.” 

Fiona welcomes enquiries from anyone who has an interest in developing their research skills, whether to enhance their clinical role or as a possible route to a research career.

Goal-setting with aphasia:

Accessible communication PhD opportunity


Lesley ScobbieHealthcare professionals regularly support patients to set goals by asking what is important to them now and in the future. But what if the person has the ability to set goals but is unable to communicate their wishes effectively? When Lesley Scobbie developed her community rehabilitation goal setting and action planning (G-AP) framework, it proved popular with stroke survivors and gave them more involvement and control in the goal setting process. However, G-AP was not fully accessible to the third of stroke survivors who have aphasia, a communication difficulty that affects speaking, reading, writing and understanding of what is said. When Lesley was awarded a Stroke Association fellowship to develop G-AP, it therefore included funding for a PhD studentship to create an accessible record for people with aphasia. With applications due in by 10th April, Lesley says, “I am excited about supervising this project with Marian Brady and Linda Worrall, as it links my passion for goal setting with their international expertise in the field of aphasia. The successful candidate will also have a fantastic opportunity to make a real difference to the participation of people with communication difficulties.”

The full-time PhD studentship at Glasgow Caledonian University is funded over three years to include tuition fees and an annual stipend. It will involve co-producing, evaluating and optimising accessible G-AP records with people with aphasia, their carers, and rehabilitation staff. By the end of the project, an evidence based, accessible G-AP record will be available to people with aphasia to ensure they can participate as fully as possible in the goal setting process for their rehabilitation. 

If you are interested in applying, see full details of the position here, and contact Lesley to discuss it further. The closing date for applications is Monday 10th April 2017.
Margaret MaxwellThe Nursing, Midwifery and Allied Health Professions Research Unit is based at the University of Stirling and Glasgow Caledonian University. Led by Director Margaret Maxwell, Unit staff work with practitioners, researchers and NHS patients and carers to produce research that can inform and improve healthcare. A key aim of the Unit is to contribute to the development of researchers across the nursing, midwifery and allied health professions. Contact us for more information.
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