Sarah L Skyrme
I have been awarded a British Academy grant and will be producing an animation based on my research on Duchenne Muscular Dystophy. Previously, I have received the Tilly Hale Award from Newcastle University's Medical Sciences Faculty, and used the funds as a starting off point for developing my animated film 'In Spate', which is animated by Jeremy Richard. The film is based on the lived experience of liver disease. It challenges stigma and encourages empathy and understanding. My MA researched the impact semi-privatised sites have on the democratic use of space. My PhD from Newcastle University was based on semi-structured interviews with boys with Duchenne muscular dystrophy. I explored with the boys how they thought they might make a decision to take part in medical research. I have worked at the University of Glasgow, Nottingham University, Leeds University and the University of Cumbria as part of HASCE (Health & Social Care Evaluation) and most recently, Manchester University. My research interests are in the fields of disability studies, health care provision, well-being, marginalised lives, and the use of animation to share research on the lived experience of illness and disability.
Supervisors: Professor Janice McLaughlin and Professor Simon Woods
Supervisors: Professor Janice McLaughlin and Professor Simon Woods
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Videos by Sarah L Skyrme
Transcript available here: sarahskyrme.uk/item/the-unseen-life-drawn-out-in-a-nutshell/
A presentation by Dr Sarah Skyrme
Animation by Jeremy Richard
Papers by Sarah L Skyrme
symptoms including joint pain and inflammation, stiffness, fatigue, anxiety, and low mood. Similar to patients with other long‐term conditions, they may have periods of time when their disease is under control, and times when their condition is less stable, requiring treatment adjustments. The REMORA2 feasibility study explored the implementation of an integrated symptom‐tracking system using a smartphone application (app), enabling patients to track day‐to‐day symptoms. The data was available in the electronic health record to be viewed at subsequent consultations.
Aims and Objectives: This paper explores patients' comments on living with RA, and how patient‐reported symptom data supports informed interactions as patients and clinicians work together to coproduce meaning from the data.
Method: Individual semi‐structured interviews were conducted with 21 patients and 7 clinicians, supplemented by nonparticipant observations of 5 clinical appointments. Thematic analysis was used to analyse data from the interviews, with an ethnographic approach used to analyse the observational data.
Results: Both clinicians and patients reported the benefits of reviewing the data in the clinic together. This helped inform decisions about pain management and identified patients who might otherwise have dismissed symptoms such as pain, because of their natural inclination to be stoical.
Conclusion: Improved insights on the care of RA were generated as patients and clinicians discuss symptom tracking data. This can assist the patient‐clinician dyad in the process of two‐way learning and shared decision‐making on the management of a long‐term condition
Methods: online survey to obtain nurses’ feedback and ratings of technologies
implemented and used to support patient care during the COVID-19 pandemic. Survey questions comprised fixed response and free-text questions and a rating of system usability (quantitative and qualitative data). Participants were recruited via nursing networks and social media.
Results: 55 respondents provided details on 85 separate technologies. The majority of technologies were used for patient monitoring/data sharing (n=39; 46%), online communication (n=22; 26%) virtual appointments (n=15; 18%). Other technologies included electronic patient records (n=5, 6%), e-Prescribing (n=3; 3%), and for PPE (n=1, 1%). Usability of systems varied significantly across types of technology. Barriers to successful use included accessibility to effective infrastructure.
Conclusion: there was a range and breadth of digital technologies adopted and used by nurses during the pandemic. There are ongoing issues with the availability of digital infrastructure to enable effective digital working, and poor usability of some systems that have been implemented.
Transcript available here: sarahskyrme.uk/item/the-unseen-life-drawn-out-in-a-nutshell/
A presentation by Dr Sarah Skyrme
Animation by Jeremy Richard
symptoms including joint pain and inflammation, stiffness, fatigue, anxiety, and low mood. Similar to patients with other long‐term conditions, they may have periods of time when their disease is under control, and times when their condition is less stable, requiring treatment adjustments. The REMORA2 feasibility study explored the implementation of an integrated symptom‐tracking system using a smartphone application (app), enabling patients to track day‐to‐day symptoms. The data was available in the electronic health record to be viewed at subsequent consultations.
Aims and Objectives: This paper explores patients' comments on living with RA, and how patient‐reported symptom data supports informed interactions as patients and clinicians work together to coproduce meaning from the data.
Method: Individual semi‐structured interviews were conducted with 21 patients and 7 clinicians, supplemented by nonparticipant observations of 5 clinical appointments. Thematic analysis was used to analyse data from the interviews, with an ethnographic approach used to analyse the observational data.
Results: Both clinicians and patients reported the benefits of reviewing the data in the clinic together. This helped inform decisions about pain management and identified patients who might otherwise have dismissed symptoms such as pain, because of their natural inclination to be stoical.
Conclusion: Improved insights on the care of RA were generated as patients and clinicians discuss symptom tracking data. This can assist the patient‐clinician dyad in the process of two‐way learning and shared decision‐making on the management of a long‐term condition
Methods: online survey to obtain nurses’ feedback and ratings of technologies
implemented and used to support patient care during the COVID-19 pandemic. Survey questions comprised fixed response and free-text questions and a rating of system usability (quantitative and qualitative data). Participants were recruited via nursing networks and social media.
Results: 55 respondents provided details on 85 separate technologies. The majority of technologies were used for patient monitoring/data sharing (n=39; 46%), online communication (n=22; 26%) virtual appointments (n=15; 18%). Other technologies included electronic patient records (n=5, 6%), e-Prescribing (n=3; 3%), and for PPE (n=1, 1%). Usability of systems varied significantly across types of technology. Barriers to successful use included accessibility to effective infrastructure.
Conclusion: there was a range and breadth of digital technologies adopted and used by nurses during the pandemic. There are ongoing issues with the availability of digital infrastructure to enable effective digital working, and poor usability of some systems that have been implemented.
(CDSS) are an increasingly important part of nurse
and allied health professional (AHP) roles in delivering
healthcare. The impact of these technologies on these
health professionals’ performance and patient outcomes
has not been systematically reviewed. We aimed to
conduct a systematic review to investigate this.
Materials and methods The following bibliographic
databases and grey literature sources were searched by
an experienced Information Professional for published
and unpublished research from inception to February
2021 without language restrictions: MEDLINE (Ovid),
Embase Classic+Embase (Ovid), PsycINFO (Ovid), HMIC
(Ovid), AMED (Allied and Complementary Medicine)
(Ovid), CINAHL (EBSCO), Cochrane Central Register of
Controlled Trials (Wiley), Cochrane Database of Systematic
Reviews (Wiley), Social Sciences Citation Index Expanded
(Clarivate), ProQuest Dissertations & Theses Abstracts &
Index, ProQuest ASSIA (Applied Social Science Index and
Abstract), Clinical Trials.gov, WHO International Clinical
Trials Registry (ICTRP), Health Services Research Projects
in Progress (HSRProj), OpenClinical(www.OpenClinical.
org), OpenGrey (www.opengrey.eu), Health.IT.gov, Agency
for Healthcare Research and Quality (www.ahrq.gov). Any
comparative research studies comparing CDSS with usual
care were eligible for inclusion.
Results A total of 36 106 non-duplicate records were
identified. Of 35 included studies: 28 were randomised
trials, three controlled-before-and-after studies, three
interrupted-time-series and one non-randomised trial.
There were ~1318 health professionals and ~67 595
patient participants in the studies. Most studies focused on
nurse decision-makers (71%) or paramedics (5.7%). CDSS
as a standalone Personal Computer/LAPTOP-technology
was a feature of 88.7% of the studies; only 8.6% of the
studies involved ‘smart’ mobile/handheld-technology.
Discussion CDSS impacted 38% of the outcome
measures used positively. Care processes were better
in 47% of the measures adopted; examples included,
nurses’ adherence to hand disinfection guidance, insulin
dosing, on-time blood sampling and documenting care.
Patient care outcomes in 40.7% of indicators were better;
examples included, lower numbers of falls and pressure
ulcers, better glycaemic control, screening of malnutrition
and obesity and triaging appropriateness.
Conclusion CDSS may have a positive impact on selected
aspects of nurses’ and AHPs’ performance and care
outcomes. However, comparative research is generally low
quality, with a wide range of heterogeneous outcomes.
After more than 13 years of synthesised research into
CDSS in healthcare professions other than medicine, the
need for better quality evaluative research remains as
pressing.
of boys with DMD living into adulthood. Parents and parent-led charities are raising funds to find effective treatments and a cure, and much of the medical research they promote requires the participation of those with DMD. This raises questions about children and young people’s involvement in research, including their role and approach to consent and how willing they are to be involved in the medical research
their parents and DMD charities advocate. Through qualitative interviews with nine boys and young men with DMD and one young woman with muscular dystrophy, I explored their thoughts on medical research and the broader issue of how they live and cope with their condition. As part of this discussion I examined how they might
make a decision to participate in medical research, focusing on the processes, interactions and individuals they consider important in helping them to decide. My approach privileges the participants’ thoughts and opinions, positioning them as able social actors (James & Prout 1997) who can provide insight into their experiences. Currently little is known about the lives of children and young people
with a significant, degenerative disability, particularly around their thoughts on medical research participation and decision-making (Dixon-Woods 2006). The views of my participants provide the basis for this research, with work from the sociology of childhood and from disability studies informing and contextualising it. The way in which parents are involved in daily life is discussed to gain an understanding of how
the participants work with those they trust. This relationship may provide
understandings of how decisions are influenced by family input and how support assists those who are young and have a degenerative condition. It is possible that this model of working with the significant people in their lives promotes agency and independence, aiding the participants towards, rather than away from autonomy.
This is the 12-month evaluation report of the Morecambe Bay PACS Vanguard, conducted by HASCE at the University of Cumbria.
Follow the link for an updated version of this poster: https://sarahskyrme.uk/item/living-with-dmd-and-decision-making/