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Experiences of long-term life-limiting conditions among patients and carers: 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?
  1. Carl R May1,2,3,
  2. Amanda Cummings1,2,
  3. Michelle Myall1,2,
  4. Jonathan Harvey1,2,
  5. Catherine Pope1,2,
  6. Peter Griffiths1,2,
  7. Paul Roderick2,3,4,
  8. Mick Arber5,
  9. Kasey Boehmer6,
  10. Frances S Mair7,
  11. Alison Richardson1,2,3
  1. 1Faculty of Health Sciences, University of Southampton, Southampton, UK
  2. 2NIHR CLAHRC Wessex, University of Southampton, Southampton, UK
  3. 3University Hospital Southampton NHS Foundation Trust, Southampton, UK
  4. 4Faculty of Medicine, University of Southampton, Southampton General Hospital, Southampton, UK
  5. 5York Health Economics Consortium, University of York, York, UK
  6. 6Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, Minnesota, USA
  7. 7Department of General Practice and Primary Care, Institute of Health and Wellbeing, University of Glasgow, Glasgow, UK
  1. Correspondence to Professor Carl R May; c.r.may{at}


Objectives To summarise and synthesise published qualitative studies to characterise factors that shape patient and caregiver experiences of chronic heart failure (CHF), chronic obstructive pulmonary disease (COPD) and chronic kidney disease (CKD).

Design Meta-review of qualitative systematic reviews and metasyntheses. Papers analysed using content analysis.

Data sources CINAHL, EMBASE, MEDLINE, PsychINFO, Scopus and Web of Science were searched from January 2000 to April 2015.

Eligibility criteria for selecting studies Systematic reviews and qualitative metasyntheses where the participants were patients, caregivers and which described experiences of care for CHF, COPD and CKD in primary and secondary care who were aged ≥18 years.

Results Searches identified 5420 articles, 53 of which met inclusion criteria. Reviews showed that 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).

Conclusions To the best of our knowledge, this is the first synthesis of qualitative systematic reviews in the field. 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.

Systematic review registration number PROSPERO CRD42014014547.

  • long-term conditions
  • patient experience
  • burden of treatment
  • end of life
  • meta-review

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See:

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  • Twitter Follow Carl May at @CarlRMay and Frances Mair at @FrancesMair

  • Contributors CRM drafted this paper; CRM, AR, KB and FSM developed the conceptual framework informing this study; CRM, PG, MM, CP, PR and AR designed the review; MA performed database searches; AC, MM and CRM screened titles, abstracts and full papers with assistance from JH; CRM performed first-line content analysis; MA, KB, AC, PG, JH, FSM, MM, CP, AR and PR critically reviewed the manuscript for important intellectual content; all authors approved the final version of the paper. CRM is guarantor.

  • Funding 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 organisations and partners and the University of Southampton. Funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript.

  • Disclaimer The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

  • Competing interests CP declares consultancy payments from National Institute for Health and Care Excellence and the Department of Health.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement No additional data are available.