Patient-centred care from the people's perspective
Research type
Research Study
Full title
What does patient-centred care mean? The experiences of people with long-term conditions
IRAS ID
254497
Contact name
Joanne Reeve
Contact email
Sponsor organisation
University of Hull
Clinicaltrials.gov Identifier
Duration of Study in the UK
1 years, 10 months, 31 days
Research summary
Summary of Research
In the UK, people with long-term conditions, whose numbers are rising, and who would greatly benefit from a patient-centred approach, are receiving care that does not meet their needs for supporting self-management, with inefficient use of contact time, scarce focus on information and education, and poor outcomes. Furthermore, patient surveys have reported that healthcare professionals are not delivering nor implementing patient-centred care in a meaningful way.After conducting a systematic review of qualitative studies, we have identified the aspects of patient-centred care that matter to people with long-term conditions. These aspects have been divided into three domains: epistemic (relating to knowledge), human (related to relationships), and organizational (related to access). We aim to enrich and refine this knowledge by exploring the direct experiences of people with long-term conditions in primary care settings. This will be done through a qualitative study, involving focus groups and one-to-one interviews as the main methods of data collection. Data will be analysed using thematic analysis (focus groups) and interpretative phenomenological analysis (one-to-one interviews). Then, we aim at triangulating these data with those previously emerging from our systematic review. Our final aim is that of developing a model of patient-centred primary care based on the experiences of those very people for whom it is meant, and that could eventually inform healthcare professional training and facilitate the delivery of more patient-centred approaches.
Summary of Results
Person-centred care is care that aims to involve people in the treatment of their conditions and takes into account the patient's subjective experiences. Although person-centred care is a policy priority in the United Kingdom, people with long-term conditions report a deficiency in person-centred healthcare relative to their wishes and expectations. Whilst several factors contribute to this problem, recent work recognises a persisting reported failure of healthcare staff to give adequate credence to patients’ knowledge work, which may contribute to worsening person-centred care. Therefore, we set out to answer the following research question: “What does an analysis of the knowledge work done by adults with chronic conditions in the context of their healthcare experiences tell us about changes needed to strengthen person-centred primary care?”REC name
East Midlands - Nottingham 1 Research Ethics Committee
REC reference
19/EM/0056
Date of REC Opinion
5 Mar 2019
REC opinion
Further Information Favourable Opinion