title: Stigma-related experiences in non-communicable respiratory diseases: A systematic review.
abstract: The stigma of non-communicable respiratory diseases (NCRDs), whether perceived or otherwise, can be an important element of a patient's experience of his/her illness and a contributing factor to poor psychosocial, treatment and clinical outcomes. This systematic review examines the evidence regarding the associations between stigma-related experiences and patient outcomes, comparing findings across a range of common NCRDs. Electronic databases and manual searches were conducted to identify original quantitative research published to December 2015. Articles focussing on adult patient samples diagnosed with asthma, chronic obstructive pulmonary disease (COPD), cystic fibrosis, lung cancer or mesothelioma, and included a measurement of stigma-related experience (i.e. perceived stigma, shame, blame or guilt), were eligible for inclusion. Included articles were described for study characteristics, outcome scores, correlates between stigma-related experiences and patient outcomes and methodological rigor. Twenty-five articles were eligible for this review, with most ( n = 20) related to lung cancer. No articles for cystic fibrosis were identified. Twenty unique scales were used, with low to moderate stigma-related experiences reported overall. The stigma-related experiences significantly correlated with all six patient-related domains explored (psychosocial, quality of life, behavioral, physical, treatment and work), which were investigated more widely in COPD and lung cancer samples. No studies adequately met all criteria for methodological rigor. The inter-connectedness of stigma-related experiences to other aspects of patient experiences highlight that an integrated approach is needed to address this important issue. Future studies should adopt more rigorous methodology, including streamlining measures, to provide robust evidence.
authors.affiliation: School of Medicine and Public Health, University of Newcastle, Callaghan, New South Wales, Australia.
authors.forename: Shiho
authors.initials: S
authors.lastname: Rose
authors.affiliation: School of Medicine and Public Health, University of Newcastle, Callaghan, New South Wales, Australia.
authors.forename: Christine
authors.initials: C
authors.lastname: Paul
authors.affiliation: School of Medicine and Public Health, University of Newcastle, Callaghan, New South Wales, Australia.
authors.forename: Allison
authors.initials: A
authors.lastname: Boyes
authors.affiliation: School of Medicine and Public Health, University of Newcastle, Callaghan, New South Wales, Australia.
authors.forename: Brian
authors.initials: B
authors.lastname: Kelly
authors.affiliation: School of Medicine and Public Health, University of Newcastle, Callaghan, New South Wales, Australia.
authors.forename: Della
authors.initials: D
authors.lastname: Roach
mesh_terms: D001249:Asthma / Q000523:psychology*; D004651:Employment; D006304:Health Status; D006801:Humans; D008175:Lung Neoplasms / Q000523:psychology*; D008603:Mental Health; D010342:Patient Acceptance of Health Care; D029424:Pulmonary Disease, Chronic Obstructive / Q000523:psychology*; D011788:Quality of Life; D012752:Shame; D057545:Social Stigma; D014342:Truth Disclosure
keywords: Blame; chronic respiratory disease; guilt; non-communicable disease; patient care; patient outcomes; shame; stigma; systematic review