Patients and caregivers’ experiences of long-term life-limiting conditions: what can we learn from a meta-review of systematic reviews of qualitative studies of chronic heart failure; chronic obstructive pulmonary disease and chronic kidney disease?

Talk Code: 
Carl May
Carl May, Amanda Cummings, Michelle Myall, Jonathan Harvey, Catherine Pope, Peter Griffiths, Paul Roderick, Mick Arber, Kasey Boehmer, Frances S Mair, Alison Richardson
Author institutions: 
University of Southampton, NIHR CLAHRC Wessex, University of York, Mayo Clinic, University of Glasgow


We aimed to build a better understanding of the interactions between structural, healthcare system, relational and interactional factors that shape patient and caregiver experiences of long-term life-limiting conditions, towards the end of life, and to build a robust theoretical model of their interactions and outcomes. This is important because it will help us to understand the limits of self-care strategies, and shift attention away from a deficit model of patient adherence to self-management.


Meta-review of qualitative systematic reviews, meta-syntheses and meta-ethnographies of patient experience in chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD), and chronic kidney disease (CKD). We included 53 reviews (representing 559 primary studies), and used attribution analysis to understand the way in which they constructed causal relations between healthcare services, patient and caregiver experiences, and participation in healthcare interventions.


Patients’ and caregivers’ help seeking and decision-making were shaped by their degree of structural advantage (socioeconomic status, spatial location, health service quality); their degree of interactional advantage (cognitive advantage, affective state, and interaction quality), and their degree of structural resilience (adaptation to adversity, competence in managing care, and caregiver response to demands).


To our knowledge this is the first synthesis of qualitative systematic reviews that has focused on life-limiting aspects of long-term conditions from this perspective. An important outcome of this overview is an emphasis on what patients and caregivers value and on attributes of healthcare systems, relationships and practices that affect the distressing effects and consequences of pathophysiological deterioration in CHF, COPD, and CKD. Interventions that seek to empower individual patients may have limited effectiveness for those who are most affected by the combined weight of structural, relational, and practical disadvantage identified in this overview. We identify potential targets for interventions that could address these disadvantages.

Submitted by: 
Carl May
Funding acknowledgement: 
This work was supported by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (NIHR CLAHRC) Wessex which is a partnership between Wessex NHS organizations and partners and the University of Southampton. The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health. Funders had no role in study design, data collection and analysis, decision to publish, or preparation of the abstract and presentation.