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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

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 

The Mouth in Scleroderma: Improving Pathways to Care

     

Scleroderma and Raynaud’s UK (SRUK)

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.

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 lived experiences of couples living with dementia and multiple health conditions. The research will be conducted from an interpretive phenomenological perspective, utilising creative methods such as photographic diaries and photo and object-elicitation techniques within interviews with couples.  The findings from this research will help to educate health and social care practitioners the best ways to support couples living with dementia and multiple health conditions, as well as lead to the development of evidence-based, relationship-centred care interventions, in the hope that couples can continue to live well at home for as long as possible.

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

Cluster Lead: Prof Liz Walker

The Mouth in Scleroderma: Improving Pathways to Care

We have been awarded funding from SRUK to undertake a study into the oral manifestations of the autoimmune condition, scleroderma. Many people living with scleroderma experience dental problems caused by things like dry mouth, thinning of the lips, and restriction in the opening of the mouth which significantly impact on people’s quality-of-life, causing pain and discomfort, eating and sleeping problems and even a higher risk of hospitalisation. Although these problems are very common, when assessing and treating people with scleroderma, rheumatologists tend to focus on the ways in which the condition affects the internal organs and, sometimes, this means that problems with the mouth and teeth can be overlooked. Also, when people seek advice from their dentist, there’s relatively little awareness of scleroderma and the effects it can have on people’s dental health. This means there is a ‘referral gap’ between rheumatologists and dentists. The aim of this research is to develop guidelines to address this referral gap as early referral may significantly improve dental outcomes for people with scleroderma and therefore their quality-of-life.

Project team

University of Hull

Liz Walker

Liz Price

Tyler Mills

University of Leeds

Vishal Aggarwal 

Francesco Del Galdo

 

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