Non-visible disease, the hidden disruptive experiences of chronic illness in adversity

ABSTRACT

Objective: This study’s principal aim was to describe the lived reality for people with cardiovascular disease (CVD) and other chronic health conditions, who live in economically deprived neighbourhoods in a city in North West England.

Methodology: This is a qualitative, exploratory study based on in-depth, semi-structured interviews with participants experiencing compromised cardiovascular health, conducted in August 2017. The study sample comprised 14 adults (3 females) aged 54 to 76. Thematic analysis was used for data analysis, and the biographical disruption concept was used as theoretical reference to explore the results. Wider health inequalities literature supplemented the individual experiences of chronic illness.

Results: Four main themes were developed from the data: (1) chronic illness as a disruptive experience; (2) struggling for money; (3) lifestyle and health risks; and (4) reflections on current inequalities. The varied nature of participants’ narratives about their chronic illness indicated that the experience of biographical disruption depends on the wider socioeconomic and cultural factors of the individual.

Discussion: This study suggests that biographical disruption theory combined with health inequalities contexts highlights the role of hidden suffering and enhances the understanding of chronic illness experiences and thus informs clinical management, service and public health planning.

KEYWORDS:

• Chronic illness experience
• cardiovascular disease
• biographical disruption
• health inequalities
• disruptive experience
• adversity

Acknowledgments

Ana Porroche Escudero for helping to shape the conceptual framework. This is a summary of independent research funded by the National Institute for Health Research (NIHR) CLAHRC NWC Programme. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care.

Contributions to the work

S.E.Q. and M.G. conceived the original idea. S.E.Q. and P.C. performed the data collection. L.S. and J.H. helped supervise the project. M.G. and P.C. contributed to the analysis of the results. S.E.Q. wrote the manuscript. All authors discussed the results and contributed to the final manuscript.

Disclosure statement

No potential competing interest was reported by the authors.

Data availability statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

Ethics approval details

Reference number 1815 University of Liverpool.

Additional information

Funding

This work was supported by the National Insitute for Health Research NIHR200182.

Notes on contributors

Sara Estecha Querol

Sara Estecha Querol is a PhD student in Health Science at the University of Warwick, UK. Her research areas include food insecurity, health inequalities, and malnutrition using participatory action research methods and mixed-methods.

Pam Clarke

Pam Clarke is a research assistant and research adviser with interest and experience in health, welfare and social equality.

Elisabeth Lilian Pia Sattler

Elisabeth Sattler is an Assistant Professor with a dual appointment in Clinical and Administrative Pharmacy and Foods and Nutrition at the University of Georgia, USA. Her research focuses on the role of nutrition and food insecurity in cardiovascular health.

Jason C. G. Halford

Jason Halford is Head of School of Psychology, University of Leeds, and the President Elect of the European Association for the Study of Obesity (EASO).

Mark Gabbay

Mark Gabbay is Professor of General Practice at the University of Liverpool, a GP in Liverpool and Director of the NIHR Applied Health Collaboration NWC. He is a mixed-methods researcher with a particular interest in Health Inequalities.