Work in this theme responds to current national and international agendas and includes supporting care practices for all people and their families who have a health condition.
This broad spectrum of research spans the life cycle, including pre hospital care and acute surgery. It also includes the care of people with long term conditions such as diabetes, Motor Neurone Disease, persistent frozen shoulder and a range of chronic respiratory diseases.
Respiratory research encompasses a spectrum of lung conditions including bronchiectasis, where the team is leading the field in developing and extending the evidence base through a series of Cochrane Collaboration systematic reviews and exploring new ways of supporting care.
Palliative and end of life care is the most established stream of work, which includes symptom control, effective models of care such as Hospice at Home and the transition of young people with life limiting conditions into adult services.
A particular achievement in this theme centres on the development of an intervention to support family carers of people in the last year of life, which is being adapted for carers of stroke survivors and young carers who providing care to family members.
Researchers from Edge Hill University have been funded by the NIHR Health Services and Delivery Research Programme (HS&DR) to investigate respite care and short breaks for young adults with complex healthcare needs due to a life-limiting condition and/or physical disability.
Researchers from Edge Hill University have been funded by the NIHR Health Services and Delivery Research Programme (HS&DR) to investigate respite care and short breaks for young adults with complex healthcare needs due to a life-limiting condition and/or physical disability.
Carers’ Alert Thermometer (CAT)
The CAT is an evidence-based alert tool designed to identify and triage the needs of people who are providing support to a family member or friend at home as an unpaid carer. Originally developed for use with unpaid carers providing end of life care at home it is now being used with carers who are providing support to patients with a range of long-term and progressive conditions, as well as those receiving palliative and end of life care.
The Patients Concerns Inventory (PCI) is a simple tool to help patients highlight their concerns and needs for discussion in their clinical interactions / consultations. The premise is based on the literature around question prompt lists. Initially designed for head and neck cancer survivors in an outpatient setting it is now being developed for use in a wide range of clinical settings. Developed by Professor Simon Rogers (Edge Hill University and Aintree University Hospitals NHS Trust), and in close collaboration with patients, the PCI improves consultations, targets symptoms, facilitates referrals and improves patient care.
Professor Sally Spencer and Dr Carol Kelly coordinate research predominantly in long-term chronic respiratory conditions.
Asthma is a condition characterised by inflammation of the airways and affects 300 million people worldwide, in up to 16% of the population (GINA 2017). Its prevalence and management in the prison system are unknown and we are supporting research exploring this question.
Chronic Obstructive Pulmonary Disease (COPD) is a degenerative airways disease largely associated with smoking, which affects 384 million people globally, around 11% of the population, and attributable to 1 in 3 deaths in the US alone (GOLD 2018). We are supporting research investigating the causes of poor adherence to pulmonary rehabilitation and the role of behavioural change techniques in exercise rehabilitation.
Bronchiectasis is characterised by chronic infection and permanent dilation of the airways. It is a relatively under-researched condition but recent reports estimate a prevalence of 53 to 566 cases per 100 000 people (Polverino 2017), giving a global estimate of up to 2 billion people affected worldwide. Antibiotics are the main treatment for this life-threatening condition and we are reviewing the evidence base for these treatments in a series of Cochrane reviews. In addition, following completion of a Cochrane review of self-management for bronchiectasis, we are developing an intervention to help people manage their condition at home.
Acute Respiratory Infections are common, especially in winter months and many people are prescribed antibiotics to eradicate the infection. However, these are only effective for bacterial infections and it is important that prescribing practices are well managed in the face of rising antibiotic resistance (O’Neill 2016). In collaboration with an out-of-hours urgent care service we are evaluating the feasibility and acceptability of a point-of-care test for bacterial infection that has the potential to inform antibiotic seeking and prescribing behaviour.
Collaborative Research
We work with a broad range of respiratory clinicians and other academics, both nationally and internationally. Dr Kelly is Chair of the RNRC (Respiratory Nurse Research Consortium), a collaborative venture between ARNS (Association of Respiratory Nurse Specialists) & the Postgraduate Medical Institute (PGMI) at EHU. This organisation champions and supports respiratory nurses to lead research and has just published the findings from a Delphi survey which identified consensus research priorities for respiratory nurses.
Supporting Care team
Professor Barbara Jack
Barbara’s research interests have particularly focused around End of Life Care. Externally funded projects include a National Institute for Health Research, RfPB grant focusing on the Optimisation of services for patients with Motor Neurone Disease, a systematic review of Best Supportive Care for patients with lung cancer, an evaluation of the Queenscourt Hospice at Home Service. Ongoing research includes the needs of family carers of patients with cancer & advanced progressive illness, especially during the final year of life funded by a National Institute for Health Research RfPB grant.
The resulting Carers Alert Thermometer (CAT) is currently being used in different setting across the UK and internationally. She is a Visiting Professor with Hospice Africa Uganda and studies have included: exploring the Impact of Nurses Prescribing Morphine (which informed a World Health Organisation report); an evaluation of the Community Volunteer Worker scheme and a THET funded project to support the development of a degree in palliative care. In 2010 Barbara became chair of the Palliative Care Research Society.
Supporting care, linked to national and international agendas, is a key focus of research conducted within the Faculty of Health, Social Care & Medicine. Mary’s general interests within this theme centre on end-of-life and palliative care research, including the needs of family carers. Her background as a Nurse Specialist in motor neurone disease (MND) has fuelled her specific focus on patient and family carer needs in MND; she has a growing interest in how MND family carers are supported through their bereavement. She was part of the team, led through EHU, who developed the Carers’ Alert Thermometer (CAT),funded by the NIHR Research for Patient Benefit (RfPB) programme.
Current studies include evaluating the impact of the CAT, funded by Liverpool Clinical Commissioning Group (CCG) and piloting it with Clatterbridge Cancer Centre and the MND Association. As a member of the UK MND Clinical Studies Group (CSG), Mary helps oversee and develop a national portfolio of research in MND and as a member of the MND Association Healthcare Research Advisory Panel (HRAP) she guides the MND Association on applications for research funding, advises on future research directions and helps monitor progress of funded studies. Additionally, Mary is experienced in supervising PhD students researching a range of topics, including those related to MND and carers’ needs, and has particular expertise in the use of qualitative methodologies.
My main research interests focus on the measurement of health-related quality of life in clinical trials and the systematic review of interventions in healthcare. I am an editor for two Cochrane Collaboration review groups (Cochrane Airways Group; Cochrane Dementia and Cognitive Improvements Group) and a member of the board for the North West Coast Academic Health Science Network. She is currently a co-investigator on a number clinical trials and lead investigator of a complex systematic review funded through the NIHR Health Service and Delivery Awards scheme.
Simon’s research is based around patient reported outcomes, more specifically quality of life and the Patient Concerns Inventory. Since the publication of version 4 of the University of Washington Head and Neck Quality of Life questionnaire in 2002, with Simon as the lead author, it has become one of the most widely used measures across the world. The data gleaned from this questionnaire has helped evaluation of head and neck cancer treatments and contributed to changes in practice. It has also given some insight into the patients’ perspective and had led to the ‘what will I be like’ resource. This resource was created in partnership with the Aintree Head and Neck patient and carer Research Forum. It forms a basis for patients and their families to discuss possible outcomes of various cancer treatments. From an understanding of the limitations of quality of life questions in terms of shaping individual patient care, the team developed the Patient Concerns Inventory (PCI). Published in 2009 and 2010 the PCI won the E-Health Insider best use of IT in patient and citizen involvement in healthcare. The PCI was included in the 2013 national head and neck cancer audit as an indicator of care quality. The PCI is being developed in other cancers and chronic conditions. Research shows it improves doctor-patient communication, makes more efficient use of limited time in consultations, streamlines multi-professional support and fits well within the financial constraints of the NHS. Further research aims to explore impact on quality of life, emotional-social function, and levels of distress when used routinely in follow-up clinics.
Research interests include the needs and care provided to respiratory patients, and the impact that training, education and knowledge have on the provision and quality of that care. Current research projects include the prevalence of respiratory symptoms and diagnoses in a UK prison; models of self-management for bronchiectasis patients; and identification of national research priorities for respiratory nursing.
I am a Senior Research Fellow based in the Evidence-based Practice Research Centre (EPRC) in the Faculty of Health, Social Care & Medicine. My research area is supportive and palliative care with a special interest in family carers, and children and young adults with life-limiting conditions and complex healthcare needs.
My research interests developed from my desire to find out the fundamental aspects of diabetes self-management. The factors contributing to diabetes self-management include the knowledge and understanding of people with diabetes and the support they get regarding the management of their condition.
Her research interests focus on clinical outcomes and cost effectiveness in cardiothoracic surgery patients. She has completed ten clinical trials and published in high impact journals. She is a national educational chair for association of cardiothoracic practitioners and lead educational chair for allied health professionals in society of cardiothoracic surgery. She is currently working on developing a structured training programme for keyhole conduit harvesting in cardiac surgery.
My PhD research is exploring the nutritional strategies of ultra-endurance athletes and the challenges to optimum nutritional status. I have previously been involved in two research projects at the University Hospital of South Manchester. The aim of these projects was to assess the effectiveness of an intermittent fasting diet on weight management for two groups of women. Firstly, B-Ahead 2, which was conducted with women with breast cancer receiving chemotherapy treatment. Weight gain during chemotherapy is a common occurrence and this is associated with increased risk of recurrence. Secondly, Procas Lifestyle, which recruited overweight and obese women of breast screening age to engage in a weight loss project, reduce their risk of breast cancer and other non-communicable diseases.
I am a stroke nurse with fourteen years experience of working with stroke survivors and their families. My research interests include understanding and supporting the needs of stroke survivors and their families following discharge from acute care settings. My current PhD project is developing an alert tool to identify and support the needs of family caregivers of stroke survivors based on the principles of the Carers Alert Thermometer (CAT).
Other members of the Supporting Care Team include Robert Deighton, Janet Micallef, Angela Pritchard, Cheryl Wayne-Kevan, Paul Cairns, James Ridley, Barry Williams, Jenny Kirton and Dave Lynes.
