Medicine

The lived experience of Multi-morbidities research

Multi-morbidity, or living with two or more chronic conditions, is a rapidly growing feature of health care both globally and in the UK where there are ageing populations.

In addition to having significant socio-economic impacts, multi-morbidity reduces quality of life and physical functioning, increases mortality rates, hospital admissions, psychological distress and polypharmacy. It also affects the quality of life of the families and carers of those affected. This research programme recognises the importance of undertaking research on multi-morbidity challenging the orientation of single disease models, which dominate healthcare worldwide.

The University of Hull has invested £180,000 in three full-time PhD Scholarships into this programme of research.  We have prioritised the collection of voices of people living with multi-morbidities and their families and carers through focusing on three specific areas of research (1) multi-morbidity and dementia (2) multi-morbidity and mental health in midlife (3) multi-morbidity and social inequality.

Projects

StudyFull titleTypeAreaFunder

Staying on the job: barriers to maintaining employment with systemic lupus erythematosus

Staying on the job: barriers to maintaining employment with Systemic Lupus Erythematosus

Survey

 

 University of Hull

Employment support in the NHS for complex long-term conditions : Phase 0 study

Employment support in the NHS for complex long-term conditions – what is available from NHS Occupational Health and NHS managers, and what more do they think is needed? A phase 0 study

Interview based

Long-term conditions, employment

Addenbrookes Charitable Trust

New visibilities of death, dying and bereavement

 

Online Survey

 

Qualitative interviews

Death, Dying and Bereavement

Open University Health and Wellbeing Research Fund, 


Wellcome Trust

Bridging the Divide: Living with Multi-Morbidities PhD Cluster

 

 

 

University of Hull 

Long term conditions and employment

Many people are living longer with incurable illness. For many people their health will fluctuate making it difficult to manage the same amount of work every day and they may also experience extreme tiredness that does not get better with rest. This pattern is unpredictable, forcing people to give up work which can result in poorer mental health outcomes and poverty. This research programme has two ongoing research projects exploring these issues.

Staying on the job: barriers to maintaining employment with systemic lupus erythematosus

SLE is associated with high levels of workplace disability and unemployment. The objective of this study was to understand the reasons for this and describe the barriers and facilitators of employment identified by people with SLE in order to develop appropriate solutions. This research explored the experiences of people living with SLE and other fluctuating long-term conditions with a particular focus on the UK welfare benefits system.

More information

Lupus / SLE is often associated with high levels of workplace disability, absenteeism, increased levels of ill-health retirement and unemployment. Yet, work is critical to psychosocial functioning, providing economic security and social interaction - unemployment, as well as unsuitable work has adverse health outcomes. Adults with SLE completed an online survey, through the lupus UK website. The survey was designed to find out more about the challenges and successes that people with lupus have maintaining employment. The survey was predominantly qualitative to understand participant’s employment experiences with a view to generating possible solutions. 

Outputs
Project team

Dr Sara Booth

Dr Liz Price

Professor Liz Walker

CONTACT

Liz Walker e.walker@hull.ac.uk.

Employment support in the NHS for complex long-term conditions:  A Phase 0 study

This study is looking to develop practical solutions for employees with fluctuating long-term conditions with constitutional symptoms. These can include autoimmune diseases in which disabling fatigue can be a prominent symptom. Many of these conditions are treatable but not curable and affect the ability to work consistently and are associated with early workforce exit. Earlier work (see above) has demonstrated that retention strategies for people with SLE working in the NHS for example, were inconsistent, leading to potentially unnecessary departures from work. This study will investigate the experiences and concerns of occupational health clinicians and NHS managers supporting NHS employees with long-term conditions and explore the options they have for retaining employees with long-term conditions.

More information

The NHS is the fifth largest global employer with over 1.3 million employees.  It has an acute skills shortage and problems retaining and recruiting staff.  NHS sickness absence rates are higher across the year (4% in 2017) than other public sector organisations (2.9% in 2016) and the private sector (1.9% in 2016).  As a large employer which promotes flexible working and with the potential to institute sophisticated adjustments, redeployment and retraining, it might be expected that the NHS could lead the way in retaining people with fluctuating chronic conditions. This study aims to explore NHS occupational health services and clinical managers’ attitudes and knowledge of strategies available for retaining employees’ living with long-term conditions, particularly those with fluctuating, constitutional symptoms. The study will utilise semi-structured online interviewing with NHS occupational health and management staff in three sites. The data collection scheduled to commence in May 2021.


 

Funder

Addenbrookes Charitable Trust

Project team

Dr Sara Booth (PI)

Professor Liz Walker

Dr Jen Remnant

Dr Liz Price

Dr Moira Kelly

Caroline White

New visibilities of death, dying and bereavement

This multi-disciplinary research collective aims to capture the affordances of the internet and digital technology for enabling new ways of grieving and talking about death dying and bereavement. Collectively, it tackles a question that is often taken-for-granted: ‘what is the nature and lived experience of these taboos?’ Through this exploration it grounds the research within a wider context, namely; the natural death movement, the hospice movement and the death positive movement. By taking a granular approach to analysing how our visibilities of death on/offline construct new ritual practices, linguistic approaches to storytelling, creative interventions, sociological, and psychological phenomena in the 21st century – it shifts how we talk about death and dying. In turn, it explores how the media presents new ways of democratising but also sanitising the public’s perception of death, led predominantly by the development of new audiences and/ or markets. 

More information

This work approaches the study of death-related practices online with a focus on lived experiences. For example how bereaved individuals engage with the digital remains of their deceased loved ones and how experiences of death dying and grief are shaped by evolving digital media technology and services. It also encompasses enquiry into changing attitudes towards death and the management of death, dying and bereavement which include important questions about agency, privacy, ownership and control.

AIMS

The aims are to contribute theoretically and methodologically in the field of death and dying (and in related subfields of media and communication, cultural studies, sociology, psychology, and sociocultural linguistics) and to public discourses and practices around death and dying, and bereavement through creative explorations of these issues with relevant organisations, charities and the public.

FUNDERS

The project has received funding from the Open University Health and Wellbeing Research Fund and support from the Wellcome Trust.

Outputs

Hård af Segerstad, Y., Bell, J., and Yeshua-Katz. D. (forthcoming 2021). Designed to Die: On the ephemerality and obsolescence of digital remains. AoIR Selected Papers of Internet Research (accepted for publication May 2020). 

Hård af Segerstad, Y., Bell, J., Giaxoglou, K., Pitsillides, S., Yeshua-Katz. D., Cumiskey, K., and Hjorth, L. (forthcoming 2020) Taboo or not taboo: (in)visibilities of death, dying and bereavement. Panel discussion at Association of Internet Researchers (AoIR) 21st annual conference (forthcoming, Dublin Ireland / now online October 2020).

Project team

PROJECT TEAM

Ylva Hård af Segerstad (PI)

Jo Bell

Korina Giaxoglou

Stacey Pitsillides

Dorthe Refslund Christensen

CONTACT

Dr Jo Bell – J.Bell@hull.ac.uk 

Bridging the divide: Living with Multi-morbidities PhD Cluster

“She’s my memory; he’s my legs!” An interpretive phenomenological exploration of couples’ experiences living with dementia and multiple health conditions -  Rosie Dunn

The aim of this research is to explore the prevalence and lived experiences of couples living with dementia and multimorbidity. The research will involve a mixed methods approach consisting of a cross-sectional scoping survey and semi-structured interviews complemented with photographic diaries. It is hoped that insights gleaned from the research will inform health and social care practitioners, policy makers and clinical guidelines on how to best provide support to couples living with dementia and multimorbidity.

Narratives of Multimorbidity at Midlife - Justine Krygier

This research will explore the lived experiences of individuals at midlife with multiple health issues to better understand the impact of multimorbidity at this stage of the life course. It will aim to consider elements such as identity, emotional resources and mental health implications from an Existential and Humanistic perspective.

Multimorbidity and the workplace: How work shapes multimorbidity in struggling coastal communities - Edward Hart

Adopting a phenomenological approach, this research shall endeavour to elicit the felt experience of multimorbidity by exploring the critical influence of both working conditions and the ‘work imperative’.  The research seeks to ascertain specific factors pertinent to coastal communities that have been subject to persistent economic decline and how this influences the intersectionality between multimorbidity and work.

Exploring the needs and priorities of individuals living with dementia and multiple health conditions within general practice, using co-methodology -  Ellie Clayton

The aim of this research is to firstly explore experiences of general practice for individuals living with dementia and multiple health conditions, their family members and staff within general practice. The research will then focus on understanding the needs and priorities of primary care, namely general practice for these individuals, using co-methodology. It is hoped that insights gained throughout this research will aid in care provided within general practice, with possible practice solutions to improve care co-produced.

Supervisory Team

Prof. Liz Walker, Professor of Health and Social Work Research and Senior Lecturer in Social Work

Dr Moira Graham, Lecturer in Public Health / Graduate Research Director in the School of Health and Social Work

Dr Emma Wolverson, Senior Lecturer Ageing and Dementia. MSc Dementia programme co-director.

Dr Andrea Hilton, Senior Lecturer and Programme director, Non-Medical Prescribing

Dr Liz Price

Dr Jo Bell, Senior Lecturer

Dr Tim Buescher, Lecturer - Mental Health

Cluster Lead: Prof Liz Walker

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