EB investigation into the lived experience of chronic disease
Research type
Research Study
Full title
An empirical bioethics investigation into how better understanding the subjective disruption brought by chronic illness can contribute to the normative discussion on how to improve equity in health outcomes for chronic diseases in England
IRAS ID
242301
Contact name
J Wilson
Contact email
Sponsor organisation
University College London
Clinicaltrials.gov Identifier
Z6364106/2018/04/100, UCL Data Protection Registration Number
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
This study focuses on the challenge raised by the large burden of disease of chronic diseases worldwide and in the UK. Its main research question is how can the experience of chronic illness contribute to the normative discussion on how to improve equity in health outcomes for chronic diseases in England?
Thus, this study’s purpose is to contribute to the normative discussion on how to improve equity in health outcomes for chronic diseases by shedding light on the problem of low chronic treatment adherence rates that currently lead to high rates of morbidity and mortality.
The methodology of this study is empirical bioethics. More specifically, this is a normative case study that collects qualitative data through semi-structured interviews and participant observation of the patient-healthcare professional relationship from a purposive sample of chronically ill individuals and sets up a dialogue between this empirical data and bioethics discourses on chronic disease and its treatment. These techniques offer access to illness narratives that can help to understand the subjective disruption brought by illness, clarify the challenge that chronic treatment adherence and self-care poses to the chronically ill, and provide insights that can help to characterise the particularities of the patient-healthcare professional relationship for the particular case of chronic disease. From this methodological perspective, this is considered valuable information for normative thinking.
Because the main risk factors for chronic disease are considered to be individual risk factors or lifestyle choices, the social determinates of health play a significant role in how these diseases are distributed across populations. Thus, by exploring patients’ lived experience of disease, healthcare delivery, and ethical theorising, this research will contribute to the normative discussion on how to improve equity in health outcomes for chronic diseases.REC name
London - Bromley Research Ethics Committee
REC reference
18/LO/1548
Date of REC Opinion
25 Oct 2018
REC opinion
Further Information Favourable Opinion