title: 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?
abstract: 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).
  
  
  
  Meta-review of qualitative systematic reviews and metasyntheses. Papers analysed using content analysis.
  
  
  
  CINAHL, EMBASE, MEDLINE, PsychINFO, Scopus and Web of Science were searched from January 2000 to April 2015.
  
  
  
  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.
  
  
  
  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).
  
  
  
  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.
  
  
  
  PROSPERO CRD42014014547.
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK University Hospital Southampton NHS Foundation Trust, Southampton, UK.
authors.forename: Carl R
authors.initials: CR
authors.lastname: May
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK.
authors.forename: Amanda
authors.initials: A
authors.lastname: Cummings
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK.
authors.forename: Michelle
authors.initials: M
authors.lastname: Myall
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK.
authors.forename: Jonathan
authors.initials: J
authors.lastname: Harvey
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK.
authors.forename: Catherine
authors.initials: C
authors.lastname: Pope
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK.
authors.forename: Peter
authors.initials: P
authors.lastname: Griffiths
authors.affiliation: NIHR CLAHRC Wessex, University of Southampton, Southampton, UK University Hospital Southampton NHS Foundation Trust, Southampton, UK Faculty of Medicine, University of Southampton, Southampton General Hospital, Southampton, UK.
authors.forename: Paul
authors.initials: P
authors.lastname: Roderick
authors.affiliation: York Health Economics Consortium, University of York, York, UK.
authors.forename: Mick
authors.initials: M
authors.lastname: Arber
authors.affiliation: Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, Minnesota, USA.
authors.forename: Kasey
authors.initials: K
authors.lastname: Boehmer
authors.affiliation: Department of General Practice and Primary Care, Institute of Health and Wellbeing, University of Glasgow, Glasgow, UK.
authors.forename: Frances S
authors.initials: FS
authors.lastname: Mair
authors.affiliation: Faculty of Health Sciences, University of Southampton, Southampton, UK NIHR CLAHRC Wessex, University of Southampton, Southampton, UK University Hospital Southampton NHS Foundation Trust, Southampton, UK.
authors.forename: Alison
authors.initials: A
authors.lastname: Richardson
mesh_terms: D017028:Caregivers / Q000523:psychology*; D002908:Chronic Disease / Q000523:psychology*; D003657:Decision Making; D015438:Health Behavior; D006297:Health Services Accessibility / Q000592:standards; D006333:Heart Failure / Q000523:psychology*; D006801:Humans; D015201:Meta-Analysis as Topic; D029424:Pulmonary Disease, Chronic Obstructive / Q000523:psychology*; D036301:Qualitative Research; D051436:Renal Insufficiency, Chronic / Q000523:psychology*; D055500:Resilience, Psychological; D012959:Socioeconomic Factors; D000078202:Systematic Reviews as Topic
keywords: burden of treatment; end of life; long-term conditions; meta-review; patient experience