Sarah L Skyrme | The University of Manchester (original) (raw)

Videos by Sarah L Skyrme

Video presentation highlighting the lived experience of having hepatitis C, with extracts from th... more Video presentation highlighting the lived experience of having hepatitis C, with extracts from the upcoming film In Spate.

An abridged version of a video presentation highlighting the lived experience of having hepatitis... more An abridged version of a video presentation highlighting the lived experience of having hepatitis C: The Unseen Life Drawn Out (vimeo.com/659119341)

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

The role of patient reported symptom data in co‐producing meaning in rheumatoid arthritis, 2024

Rationale: Patients with rheumatoid arthritis (RA) experience a range of symptoms including joint... more Rationale: Patients with rheumatoid arthritis (RA) experience a range of
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

Health and Social Care Delivery Research

Background Computerised decision support systems (CDSS) are widely used by nurses and allied heal... more Background Computerised decision support systems (CDSS) are widely used by nurses and allied health professionals but their effect on clinical performance and patient outcomes is uncertain. Objectives Evaluate the effects of clinical decision support systems use on nurses’, midwives’ and allied health professionals’ performance and patient outcomes and sense-check the results with developers and users. Eligibility criteria Comparative studies (randomised controlled trials (RCTs), non-randomised trials, controlled before-and-after (CBA) studies, interrupted time series (ITS) and repeated measures studies comparing) of CDSS versus usual care from nurses, midwives or other allied health professionals. Information sources Nineteen bibliographic databases searched October 2019 and February 2021. Risk of bias Assessed using structured risk of bias guidelines; almost all included studies were at high risk of bias. Synthesis of results Heterogeneity between interventions and outcomes necess...

Shame and stigma can cloud medical appointments for some patients; a video presentation highlight... more Shame and stigma can cloud medical appointments for some patients; a video presentation highlighting issues in the lives of those with hepatitis C. This is an accompanying piece to the upcoming film In Spate (https://sarahskyrme.uk/item/seeing-the-patient/).

Nursing Standard

The adoption of digital technology by nurses accelerated during the coronavirus disease 2019 (COV... more The adoption of digital technology by nurses accelerated during the coronavirus disease 2019 (COVID-19) pandemic. However, not all nurses were familiar with the various digital systems used in their organisations and there were reports of digital technology not being fit for purpose. This article describes a service evaluation that used an online survey to obtain nurses’ feedback on the digital systems used to support patient care during the pandemic. Fifty-five respondents provided details about 85 separate digital systems. The usability of these systems varied significantly across technology types, while barriers to their use included nurses’ lack of digital literacy and inadequate access to IT infrastructure. However, most of the nurse respondents felt that digital technology had supported effective patient care during the COVID-19 pandemic.

Media Practice and Education

Digital Arts-Refugee Engagement (DA-RE) is an exploratory research partnership between refugee yo... more Digital Arts-Refugee Engagement (DA-RE) is an exploratory research partnership between refugee youth, academics, practitioners and community activists. Arts-based activities were combined with digital literacy to develop the capabilities of refugee youth in Turkey and Bangladesh. DA-RE's participants cocreated digital arts and connected with one another across the two settings in a digital third space to share narratives from their situated perspectives and lived experiences. In these ways, they developed skills of engagement and agency through the project, but at the heart of DARE was the intention to explore the links between refugee youths' own creative agency, harnessed in new contexts enabled by the project, and their existing digital literacies. DARE sought to identify, with a theory of change, potential opportunities for refugee youth to both use this capability in the host community and provide a platform for their digital arts to offer a counter-narrative to 'othering' discourses at work in both their host communities and in the UK, where the project was coordinated, in so doing converting (digital) literacy into capability with positive consequences for social good.

Nursing Standard, 2023

Media Practice and Education, 2023

Creative Arts in Education and Therapy – Eastern and Western Perspectives, 2022

This article explores the particular benefits of arts-based interventions with refugee women and ... more This article explores the particular benefits of arts-based interventions with refugee women and girls and the potentialities for enhancing social justice. This truncated review of literature makes reference to arts-based communication, notions of female empowerment, symbolism and metaphor, and expressions of identity and agency and then moves on to explore a number of primarily participatory arts-based interventions with women and girl refugees, looking at the particular affordances yielded.

Research decisions: Living with Duchenne muscular dystrophy Duchenne muscular dystrophy (DMD) is ... more Research decisions: Living with Duchenne muscular dystrophy Duchenne muscular dystrophy (DMD) is a severe form of muscular dystrophy that affects males. Muscle deterioration leads to increasing levels of disability during childhood and adolescence, with death commonly occurring in the late teens or early twenties, although changes in care and treatment are leading to increasing numbers I wish to acknowledge the outstanding support and advice given by my supervisors,

Frontiers in Sociology, 2021

The issues of health, illness, stigma and inequalities in healthcare provision, areas that in my ... more The issues of health, illness, stigma and inequalities in healthcare provision, areas that in my role as a social researcher were already of interest and concern, shifted to a different perspective when I was diagnosed with hepatitis C. From this altered position, my body and lifeworld were a nexus point for a range of ongoing challenges around staying as well as possible, and the struggle to get my healthcare needs met. There is a gap between the support provided for some ill and disabled people, and the help that they actually require. This is particularly so for conditions that are not well understood, that have a low public profile, limited funding, and/or are in some way stigmatised due to perceived differences to social norms. Hepatitis C is one such condition, it is a viral disease that is transmitted through blood-to-blood contact and it causes ongoing damage to the liver. Because of the systemic nature of the disease, individuals may struggle to cope with the demands of wor...

Global Studies of Childhood, 2016

Duchenne muscular dystrophy is a progressive muscle-wasting condition that only affects boys, mos... more Duchenne muscular dystrophy is a progressive muscle-wasting condition that only affects boys, most use a wheelchair by the age of 12 and increasing levels of support and medical intervention are needed as they mature into young adulthood. Medical research is working to find treatments and an eventual cure for Duchenne muscular dystrophy, and this research can require the participation of those with the condition. Therefore, boys and young men who have Duchenne muscular dystrophy were invited to discuss their thoughts on how they might make a decision to take part in medical research, and to explore issues impacting their daily lives. Their accounts highlight experiences of agency and contextualised competence, challenging assumptions of vulnerability and immaturity in those who are young and severely disabled. The findings, based on fieldwork in England, enrich understandings of how such lives have meaning, wherein agency, independence and decision-making capabilities are present an...

Child Care in Practice, 2016

ABSTRACT Semi-structured interviews were conducted with boys and young men who have Duchenne musc... more ABSTRACT Semi-structured interviews were conducted with boys and young men who have Duchenne muscular dystrophy (DMD), a severe, degenerative condition that only affects boys. The main focus of the interviews was to explore how the participants thought they might make a decision to take part in medical research. To better understand this, aspects of the participants’ lives were discussed; they talked about the impact of discomfort and declining mobility, and the social issues they experienced, such as discrimination and a sense of difference. Their observations indicate that living with a degenerative condition has physical and social impacts, and that there are limited opportunities for them to talk about these issues. It was also apparent that parents are key figures who provide care for their child, often in the absence of comprehensive support services. Raising these matters privileges the experiences of severely disabled children and young people, who live with increasing muscle weakness, disablist attitudes and intensifying support needs. Their contributions build on understandings of life with a degenerative condition, highlighting the intersection of impairment and social issues in their lived experience.

Children & Society, 2015

Interviews were conducted with boys and young men who have Duchenne muscular dystrophy, exploring... more Interviews were conducted with boys and young men who have Duchenne muscular dystrophy, exploring their thoughts on making a decision to participate in medical research. This article focuses on one of the key findings, discussing how the participants identified their parents as carers, spokespersons and advisors. The term ‘relational autonomy’ encapsulates these co-operative relationships, illustrating how they can help young people living with a degenerative disability to exercise some agency and autonomy. The boys and their families have demonstrated how disabled children who are physically dependent can be supported by their parents, without compromising independence.

vii  Assess the economic impact of the new respiratory model (the scope of this assessment will ... more vii  Assess the economic impact of the new respiratory model (the scope of this assessment will be determined by the availability of input data; the evaluation team will continue to explore how time spent on respiratory care has been affected by the new model in the staff interviews). By addressing each of these objectives, the evaluation's overarching aim will be achieved: to determine what context, mechanism and outcome configurations explain what works for who and in what circumstances.

Nursing Standard, 2022

Aim: to explore nurses’ adoption and use of digital technologies during the COVID-19 pandemic Me... more Aim: to explore nurses’ adoption and use of digital technologies during the COVID-19 pandemic

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.

Childhood, 2018

Issues relating to qualitative research with disabled children and young people will be discussed... more Issues relating to qualitative research with disabled children and young people will be discussed. Semi-structured interviews with boys who have Duchenne muscular dystrophy were conducted to explore their thoughts on how they might make a decision to take part in medical research. Assumptions about disabled children’s vulnerability can impact how researchers conduct qualitative research, and how they are involved in significant decision-making. Working reflexively and in partnership with children illustrates their competence, supporting reconsideration of their vulnerability.

Gender based refugee experiences, 2021

The United Nations High Commissioner for Refugees (UNHRC) has identified that refugee children's ... more The United Nations High Commissioner for Refugees (UNHRC) has identified that refugee children's participation in mainstream schooling in many refugee host countries (RHCs) is substantially lower than their settled peers and that for girls the gap is even more significant. Furthermore, the gap between refugee girls, their settled peers and refugee boys widens, as girls get older. This is often attributed to social and cultural traditions that under-value girls' education and limit their participation in activities outside the home or immediate community setting. This project has explored the literature around arts-based interventions aimed at girls and young women and the particular affordances and ethical complexities of these.

Transcript available here: sarahskyrme.uk/item/the-unseen-life-drawn-out-in-a-nutshell/

A presentation by Dr Sarah Skyrme
Animation by Jeremy Richard

The role of patient reported symptom data in co‐producing meaning in rheumatoid arthritis, 2024

Health and Social Care Delivery Research

Nursing Standard

Media Practice and Education

Nursing Standard, 2023

Media Practice and Education, 2023

Creative Arts in Education and Therapy – Eastern and Western Perspectives, 2022

Frontiers in Sociology, 2021

Global Studies of Childhood, 2016

Child Care in Practice, 2016

Children & Society, 2015

Nursing Standard, 2022

Childhood, 2018

Gender based refugee experiences, 2021

BMJ Open, 2021

Objective Computerised clinical decision support systems (CDSS) are an increasingly important par... more Objective Computerised clinical decision support systems
(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.

Duchenne muscular dystrophy (DMD) is a severe form of muscular dystrophy that affects males. Musc... more Duchenne muscular dystrophy (DMD) is a severe form of muscular dystrophy that affects males. Muscle deterioration leads to increasing levels of disability during childhood and adolescence, with death commonly occurring in the late teens or early twenties, although changes in care and treatment are leading to increasing numbers
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.

Local evaluation of Morecambe Bay PACS Vanguard: final report September 2018 , 2018

Health and Social Care Evaluations (HASCE) at the University of Cumbria was commissioned by Bay H... more Health and Social Care Evaluations (HASCE) at the University of Cumbria was commissioned by Bay Health and Care Partners, through NHS England Vanguard funding, to evaluate new models of care in Morecambe Bay. The local evaluation focused on understanding the context of the programme, the changes it has brought about, and which components of the care model really make a difference. The evaluation began in October 2016 and was completed in September 2018. This report summarises the findings of the second stage of evaluation, which focused on the Morecambe Bay Respiratory Network (MBRN). In addition to the data presented in the Stage 2 Early Findings Report, this report is informed by data from interviews with patients, further staff interviews and an economic analysis of resource use. The evaluation demonstrates that the MBRN has so far been a successful new model of care, with the potential to become a self-funding initiative which reduces secondary care activity, improves self-care amongst patients and enhances the learning and upskilling of staff. The model has developed ways of overcoming a number of problems and tensions identified with the implementation of NCMs, which were documented in HASCE’s 12 Month Report focusing on the BCT Vanguard programme: in particular, its model of leadership and its emphasis on communication. From the data that is available for this evaluation, the running cost of the MBRN has been calculated as amounting to approximately £1.9m pounds year, or £160k per month. Possible tariff reductions in secondary care from reduced NEL admissions and NEL beddays as well as reduced outpatient clinic capacity amount to over £2.6m per year, or £221k per month. This would arrive at a net savings to the health system of approximately £745k per year, or £60k per month. In summary, all indications point to the MBRN being a cost-effective step change in delivering respiratory services in the Morecambe Bay area.

Between January and September 2015, 50 vanguards were selected to take a lead on the development ... more Between January and September 2015, 50 vanguards were selected to take a lead on the development of new care models which would act as the blueprints for the NHS moving forward and the inspiration to the rest of the health and care system. Through the new care models programme, complete redesign of whole health and care systems were being considered.
This is the 12-month evaluation report of the Morecambe Bay PACS Vanguard, conducted by HASCE at the University of Cumbria.

Boys and young men with Duchenne muscular dystrophy were interviewed to explore their thoughts on... more Boys and young men with Duchenne muscular dystrophy were interviewed to explore their thoughts on making a decision to take part in medical research. During discussions they described life with a severe disability, experiences of isolation and difference, and explained how they would approach decision-making.

Follow the link for an updated version of this poster: https://sarahskyrme.uk/item/living-with-dmd-and-decision-making/

A presentation for the Faculty of Medical Sciences, Newcastle University on Patient and Public In... more A presentation for the Faculty of Medical Sciences, Newcastle University on Patient and Public Involvement and Engagement given on the 12th of November 2020.

Sarah Skyrme has received the 2019 Tilly Hale Award from Newcastle University’s Faculty of Medica... more Sarah Skyrme has received the 2019 Tilly Hale Award from Newcastle University’s Faculty of Medical Sciences (FMS) Engagement team. Sarah is working with Jeremy Richard, an animator, who will be developing a short film based on Sarah’s experience of poor health due to liver disease. Animation is now being used more widely to explore social issues, and the film will be used as a focal point for discussion with patient groups, members of the public, clinicians, and academics. It will highlight some of the challenges and fears that serious illness can bring, and depict the need for compassion and understanding.