Wordless intervention for epilepsy in learning disabilities (WIELD):study protocol for a randomized controlled feasibility trial

Epilepsy is the most common neurological problem that affects people with learning disabilities. The high seizure frequency, resistance to treatments, associated skills deficit and co-morbidities make the management of epilepsy particularly challenging for people with learning disabilities. The Books Beyond Words booklet for epilepsy uses images to help people with learning disabilities manage their condition and improve quality of life. Our aim is to conduct a randomized controlled feasibility trial exploring key methodological, design and acceptability issues, in order to subsequently undertake a large-scale randomized controlled trial of the Books Beyond Words booklet for epilepsy

Navigating the everyday crisis of multimorbidity: an ethnographic study of working-age adults with multiple long-term health conditions

Multimorbidity, commonly defined as the co-occurrence of two or more long-term health conditions, is considered a major challenge to contemporary care services. Why multimorbidity poses such a challenge and what kind of challenge it is, is not straightforward. Working-age adults with multimorbidity often deal with a combination of mental and physical illnesses in the context of social adversity. For many patients, the problem of multimorbidity is not located in the body, but in the gap between medical policy and everyday life. In this PhD thesis, I explore the experiences of working-age adults living with multimorbidity in an East London borough. I conducted a multimodal ethnographic study following 11 people living with multimorbidity, encompassing narrative interviews, ethnographic observations, and a participatory film and photography project. I argue that the everyday lives of people with multimorbidity constitute a chronic crisis. This endemic - rather than episodic - kind of crisis forms the context in which people with multimorbidity make their lives. Understanding crisis as chronic shifts the focus of attention from the onset to the everyday life unfolding after the emergence of illness. To understand how people make lives in the context of chronic crisis, I describe participants’ navigations through complex care systems. I argue that multimorbidity often brings about “existential stuckness”. I explore the existential anxiety and everyday work involved in living with multiple health conditions. I draw on the notion of "flourishing" rather than "cure" as the guiding principle for good care for people with multimorbidity. A flourishing life encompasses growth and development as well as decay, and ultimately death, and requires being radically open to the possibilities of life with illness. Finally, I imagine what the diagnostic process could look like if care revolved less around nosology and focused on particular stories instead

Multimorbidity as chronic crisis: 'Living on' with multiple long-term health conditions in a socially disadvantaged London borough.

Contemporary health services are primarily designed around single diseases. People with multimorbidity (multiple long-term health conditions) often become burdened by accumulated treatments. Through multimodal fieldwork in a socially disadvantaged London borough, we explore how people living with multimorbidity navigate conditions of 'chronic crisis', encompassing ill-health, overmedicalisation, polypharmacy and social exclusion. Participants in our study frequently experience 'existential stuckness', exacerbated by processes of social exclusion. We argue that diagnoses and treatments should account for people's unique aetiologies, and prioritise the notion of 'flourishing' over 'cure' as the absence of disease is not always achievable. To foster this emphasis on flourishing, we advocate for a dialogical turn in diagnostic processes that better support patients' existential needs in the context of long-term illness