Experiences of long term, life-limiting conditions amongst patients and carers: a systematic review, qualitative meta-synthesis and conceptual modelling study

Theme 6

Complexity at End of Life

Over the last one hundred years the number of people who have one or more long term, life-limiting, conditions has grown. Living with diseases, such as heart attacks and strokes, cancer, diabetes and respiratory diseases (e.g. chronic obstructive pulmonary disease (COPD) asthma) can affect a person’s quality of life and general well-being.

Many people with long term conditions attend numerous appointments in a variety of hospital departments and with their GP. They can have frequent stays in hospital, and often having been discharged find they have to return again became their symptoms get worse and cannot be managed at home. While all of this places pressure on healthcare services, it is often difficult, complicated and costly work for patients and carers. Increasingly they are responsible for organising and coordinating their care, taking multiple medications, and making lifestyle changes to manage their conditions, all of which have to be carried out alongside the other demands of everyday life.

This systematic review of the literature will bring together evidence of patient and carer experiences of three long term conditions: COPD, chronic heart failure and chronic kidney disease. It will enable us to better understand patient experiences of multiple long term conditions, their interactions with healthcare services and journeys through care. Findings from the review will contribute to the development of a model of patient journeys from which we can derive theories to inform new interventions, to improve the coordination and delivery of care, and ultimately the patient experience of healthcare and accessing healthcare services.

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Partners on this project
  • University of Southampton