The lived experience of Multi-morbidities research

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.

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. 

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.

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.