Postgraduate study

Body-Mind approaches for living better with chronic breathlessness

Funder: The University of Hull/UKRI
Supervisors: Professor Miriam Johnson and Dr Mark Pearson

Aim

Following a realist approach, to develop the theoretical groundwork for a body-mind intervention (BMi) enabling patients with advanced disease to self-manage frightening/disabling breathlessness.

Summary

To understand the links between emotion (dys) regulation and breathlessness-related distress in people with advanced chronic lung disease. Building on clinical experience as a therapist in palliative care, to develop a Body-Mind self-management intervention to support emotion self-regulation for patients and a training/support tool for healthcare professionals.

Roles and experiences of informal carers of adults living with HIV/AIDs in Sub-Saharan Africa

Funder: University of Hull
Supervisors: Dr Joseph Clark and Professor Fliss Murtagh

Aim

To explore the roles, challenges, and experiences of informal caregivers providing care to adults living with HIV/AIDS in Sub-Saharan Africa.

Summary

Sub-Saharan Africa was home to two-thirds of global new HIV infections and an estimated 470,000 AIDS-related deaths in 2020. In the absence of professional services, informal caregivers play a vital role in providing care to people living with HIV/AIDs. However, the challenges faced by carers and impact of providing care is poorly understood.

This mixed-methods project will develop understanding of the pivotal roles played by informal caregivers providing care to adults living with HIV/AIDS in Sub-Saharan African. A systematic review will be conducted to explore the roles, challenges, and experiences of informal caregivers. Findings from the systematic review will be used to develop research questions for qualitative data collection from caregivers and other stakeholders. By combining systematic review and primary research findings, the study will generate evidence to inform policy and intervention development to address the specific needs and challenges faced by these caregivers.

Exploring ‘the domestic’ in contemporary hospice architecture: a critical examination of the architecture and design of in-patient palliative care facilities in England

Funder: Wellcome Trust
Supervisors: Dr Ruth Slatter, Professor Miriam Johnson and Dr Elsbeth Robson

Aim

To examine the palliative care facilities currently in use in England and develop recommendations for policy makers on inclusive hospice design

Summary

Although 40 million people worldwide need palliative care annually, there is a lack of understanding about how the architecture and design of palliative care environments helps or hinders this care. This study will examine English hospice architecture and explore how palliative care design affects the experiences of patients, visitors and staff.

Recent publications

Bayley Z, Crowther L. “Hospice topophilia and topophobia as experienced by a local population: Implications for equity of access”. Health & Place, Volume 90, 2024,103381.

Study dissemination

Research study photography exhibition: “What do hospices in England look like?” Brynmor Jones Library, University of Hull. November 2024 – January 2025.

Dissemination event and stakeholder consultation workshop: “Hospice Architecture and Design in the UK”. University of Hull. January 2025.

Values and value-based healthcare: what do these mean in advanced illness?

Funder: The Healthcare Improvement Studies Institute
Start date: September 2023
Supervisors: Professor Fliss Murtagh and Professor Jonathan Koffman

Aim

To co-produce a conceptual model of value-based palliative care through exploring understanding and prioritisation of patient and carer values and their influence on healthcare and choices.

Summary

People with advanced illness often do not seek technological interventions with limited benefit to themselves, they frequently value quality-of-life over quantity, yet this may be overlooked or unheard because they are older, ill, or frail. Healthcare providers need to focus on providing services which accord more closely with the values and priorities of people with advanced illness and their families. However, there is limited empirical evidence regarding the personal values which different patient populations hold in relation to their healthcare.

This PhD will therefore explore personal values and value-based healthcare in the context of advanced illness and determine whether a value-based framework can be developed to improve care.

The development of cancer pain education resources for patients from ethnically diverse communities in Humber and North Yorkshire and the health professionals caring for them

Funder: University of Hull PhD scholarship
Start date: September 2023
Supervisors: Professor Jonathan Koffman, Dr Jamilla Hussain

Aim

To create a logic model for cancer pain education resource for ethnicity diverse communities with advanced cancer.

Summary

This study is aimed at specifically examining the ethnic minority population in England suffering from cancer pain to understand their palliative care needs and develop an educational program for both patients and healthcare professionals caring for them.

Person-centred care for people with dementia: Improving recognition of symptoms and needs in the acute geriatric environment

Funder: Office and technical support is being provided by Zurich University of Applied Sciences (ZHAW), along with self-funding by the student. Further funding applications are currently under review.
Supervisor: Professor Fliss Murtagh

Aim

The aim of this PhD project is to provide a validated person-centred outcome measure to assess and monitor symptoms and needs in people with advanced dementia, which is acceptable and feasible to use for nurses and relatives in the acute geriatric setting.

Summary

Symptom assessment and recognition of needs is challenging in people with advanced dementia. Symptom and needs recognition can be aided and improved by using a person-centred outcome measure, completed by nurses and relatives in the primary care setting.

However, a holistic and easy to use person-centred outcome measure is not yet available for people with advanced dementia in Switzerland. Therefore, the IPOS-Dem, as the only holistic and person-centred outcome measure available for people with advanced dementia, will be fully validated following testing its acceptability in the acute-geriatric setting to inform implementation.

IPOS-Liver Validation Study

Funder: University of Huddersfield
Supervisors: Professor Fliss Murtagh and Dr Lynsey Corless

Aim

To develop and validate an Integrated Palliative Care Outcome Scale (IPOS) that is tailored to meet the unique needs of patients with Advanced Liver Disease.

Summary

The IPOS is widely used in palliative care to support all patients at the end of their lives. It supports patients with advanced disease to express their symptoms, or needs, to healthcare professionals. However, the symptoms and needs of patients with Advanced Liver Disease are still being researched. This is because patients with Advanced Liver Disease are often referred late (or not at all) to palliative services, despite the increasing prevalence of Advanced Liver Disease in the UK. Development of a liver specific IPOS (the IPOS-Liver) will facilitate and support care for this unique set of patients and reduce the health inequalities that they currently face.

 No One Talks About Death and Dying: Developing and Evaluating a Serious Game to Facilitate Conversations Around Death and Explore Beliefs Among Non-Religious Individuals

Start date: September 2023
Funder: University of Hull PhD scholarship
Supervisors: Dr Mark Pearson (primary) and Dr Steven Forrest (secondary)

This PhD research focuses on developing and evaluating a serious game designed to facilitate conversations about death and dying among non-religious adults in England. Non-religious individuals often face unique challenges when engaging in conversations about death and dying, as they typically lack the structured support and belief systems provided by religious frameworks. This research aims to address these gaps by developing and evaluating a serious game designed to facilitate discussions about death among non-religious adults. Grounded in the Theory of Planned Behaviour (TPB) and Self-Determination Theory (SDT), and informed by public advisory input, the study employs a Realist Evaluation approach to explore how the game can effectively reduce death anxiety and encourage engagement with end-of-life conversations across diverse contexts. The effectiveness of the serious game will be evaluated using a mixed-methods research design. Quantitative surveys will assess changes in death anxiety and attitudes towards death, while qualitative interviews will explore participants' experiences with the game.

Social Connectedness and Identity in Advanced Illness

Funder: University of Hull
Supervisors: Professor Fliss Murtagh and Professor Liz Walker

More people are living with advanced illness for long periods of time. Several factors including deteriorating health and caring responsibilities may negatively impact social interactions, connections, and participation in social activities. Literature and interventions have majorly focused on interaction with health and social care systems, with little attention on the social wellbeing.

Details to follow.

Details to follow.

Details to follow.

Details to follow.

• Tim Ayers – PhD Student (primary supervision University of Exeter)
• Joanna Davies – PhD Student (registered at Kings College London, primary supervisor Professor Fliss Murtagh)
• Simon Etkind – PhD Student (registered at Kings College London, primary supervisor Professor Fliss Murtagh)
• Imogen Featherstone – NIHR Doctoral Training Fellow (primary supervision University of York, co-supervisor Professor Miriam Johnson)
• Thandiwe Hara-Msulira – PhD Student (primary supervision University of Exeter)
• Rebecca Hardwick – PhD Student (primary supervision University of Exeter)
• Harriet Hunt – PhD Student (primary supervision University of Exeter)

CLinical OuTcomes, Symptoms and Quality of Life in cancer patients with i-PE. CLOTS-QoL study

Funder: Self-funded
Supervisor: Professor Antony Maraveyas (Clinical Sciences Centre) and Professor Miriam Johnson
Publications: View Naima's publications on ORCID

Aim

The overarching aim of the study is to investigate the relationship between incidental pulmonary embolism in cancer patients and performance status, symptoms, QoL and other key clinical outcomes such as venous thromboembolism (VTE) o(re)currence and haemorrhagic complications. A secondary aim is to identify clinical and demographic predictors of VTE o(re)currence, haemorrhage, QoL and PS.

Summary

Advances in medical technology have resulted in an increase in the detection of unexpected blood clots in the lung of patients with cancer. the study aiming to see the effects these blood clots may have on the survival and quality of life of these patients, when compared to cancer patients without blood clots. It is hoped that we can find a way to identify more quickly those patients who are deteriorating and are at greater risk of developing further clots.

Optimisation of the detection and assessment of malnutrition, cachexia and sarcopenia in the older cancer patient

Funder: Yorkshire Cancer Research
Supervisors: Professor Miriam Johnson and Professor Mike Lind (Clinical Sciences Centre)

Aim

To evaluate and improve the clinical diagnosis of malnutrition, to produce a single, validated, clinically relevant method of identifying elements of malnutrition, cachexia and sarcopenia in older cancer patients, to allow targeted and effective treatment.

Summary

This research aims to produce a screening tool to allow the medical team assess older cancer patients more effectively. The tool will help identify issues regarding poor nutrition and causes of weight loss, allowing the medical team to use the correct method of treatment to manage these symptoms.

Effect of physical activity on quality of life in cancer survivorship: an online delivered, tailored physical activity programme.

Funder: Yorkshire Cancer Research
Start date: October 2019
Supervisors: Dr Cindy Forbes (primary) and Dr Mark Pearson (secondary)

Aim

To develop and assess the feasibility of an online web-based tailored exercise program for lung cancer survivors.

Summary

Within the last 40 years lung cancer has shown little improvement with only 5% of individuals surviving more than 10 years.

Developing on online evidence-based tailored exercise program could improve functional capacity and quality of life while overcoming exercise related barriers within lung cancer survivors.

Psychological suffering and distress in women undergoing treatment for breast cancer in India.

Funding: Self-funded
Supervisors: Professor Miriam Johnson and Dr Chitra Venkateswaran
Publications: View Sunitha's publications on ORCID

Aim

• To determine the psychological concerns of Indian women undergoing breast cancer treatment.
• To explore the experience of distress/suffering in Indian women with breast cancer living in India with special focus on patients undergoing treatment.
• To investigate the cultural context of and general awareness of healthy volunteers about the impact of breast cancer on Indian women with the disease in the community.

• The project consists of 3 parts; systematic literature review on the psychological concerns of Indian women undergoing breast cancer treatment, qualitative interviews to assess the level of suffering women undergoing treatment for breast cancer in India and focus group discussion among healthy volunteers to investigate the cultural context of and general awareness of the impact of breast cancer on Indian women in the community.

Summary

The project consists of 3 parts; systematic literature review on the psychological concerns of Indian women undergoing breast cancer treatment, qualitative interviews to assess the level of suffering women undergoing treatment for breast cancer in India and focus group discussion among healthy volunteers to investigate the cultural context of and general awareness of the impact of breast cancer on Indian women in the community.

Publications

Daniel, S., Venkateswaran, C., Singh, C. et al. “So, when a woman becomes ill, the total structure of the family is affected, they can’t do anything…” Voices from the community on women with breast cancer in India: a qualitative focus group study. Support Care Cancer (2021)

Daniel, Sunitha, Chitra Venkateswaran, Ann Hutchinson, and Miriam J. Johnson. "‘I don’t talk about my distress to others; I feel that I have to suffer my problems...’Voices of Indian women with breast cancer: a qualitative interview study." Supportive Care in Cancer (2020): 1-10.

Daniel S, Clark J, Gnanapragasam S, et al. Psychological concerns of Indian women with breast cancer in different national contexts: a systematic review and mixed-methods synthesis. BMJ Supportive & Palliative Care Published Online First: 11 May 2020.

Details to follow.

Public perception of palliative care: A systematic review

Funder: NIHR
Supervisor: Professor Miriam Johnson

Aim

To ascertain:

1. what the public understanding and perception of palliative care is
2. whether this understanding and perception has changed over time
3. if there is evidence that understanding and perception impacts access to palliative care

Summary

There is misperception that palliative care is just care of the dying whereas it is an approach that improves the quality of life of people facing life-limiting illness. This misperception may impact access to cost saving, quality care. We will review the evidence of the perception of palliative care.

Outputs: Prospero systematic review protocol

Title: A complex intervention study evaluating the effect of a digitalised, patient-centered comprehensive geriatric assessment on clinical decision making and patient experience when utilised by a head and neck cancer multidisciplinary team.
Funder: Yorkshire Cancer Research
Supervisors: Professor Mike Lind (Clinical Sciences Centre) and Professor Miriam Johnson

Aim

To develop, validate and implement a digitalised, cross-platform and integrated web and mobile service for undertaking comprehensive geriatric assessment in head and neck cancer patients.

Summary

To develop a website and mobile app to enable older people with head and neck cancer to get a complete assessment of their day to day functioning and overall health.

After body donation for medical education: identifying good practice in the interactions between Medical School Anatomy Unit staff and families

Funder: University of Hull
Supervisors: Dr Trish Green, Dr Peter Bazira

Aim

To identify good practice in the interactions between Medical School Anatomy Unit staff and the families of body donors

Summary

Zivarna gained an integrated masters (MAnth) in Biological Anthropology from Durham University. Her thesis concerned engagement with the dead in public contexts. She has interests in public engagement with human remains, what is hidden and hidden work, death and the dead, and body donation for medical education.

Details to follow.

Details to follow.

Mike is a Clinical Research Fellow in Nutrition, within the TRANSFORM group, for Transforming Cancer Outcomes in Yorkshire - funded by Yorkshire Cancer Research.

Mike is currently undertaking a PhD focusing on parenteral nutrition and gastrointestinal decompression in malignant bowel obstruction.

Supporting bereaved children and their families following the death of a parent.

Funder: Yorkshire Cancer Research
Supervisors: Dr Jason Boland and Professor Fliss Murtagh
Outputs and resources: ORCID

Aim

To explore the experiences and psychosocial needs of parentally bereaved children and their surviving parent to explain how they can be best supported by each other and their existing networks following the death of a parent

Summary

All bereaved children require a supportive response from their existing networks. Through a systematic literature review and qualitative interviews, the PhD will explore how children and their families are supported following the death of a parent by each other and those within their existing networks. The findings will help to develop a theory to describe a supportive response for children families following the death of a parent.

Film

This powerful animation describes Alex Wray’s PhD findings exploring support experiences for children and families following the death of a parent.

The research would not have been possible without the incredible families who took part and funding from Yorkshire Cancer Research.