Figures
- FIGURE 1
PRISMA 2009 flow diagram for the database searches. Reproduced and modified from [145].
- FIGURE 2
Breathing space.
Tables
- TABLE 1
Search strategy (MEDLINE example)
Search terms Design 1 interview* 2 Qualitative 3 finding* Exposure 4 breathless* 5 dyspn* MeSH Dyspnea exp 6 (short* adj 3 breath) Population 7 patient* MeSH patient–physician relations 8 carer* MeSH caregivers 9 health* adj2 profession* 10 health personnel MeSH exp.health personnel Outcome 11 experience 12 interaction* 13 help seeking MeSH Primary Health Care 14 coping MeSH Adaptation, Psychological 15 belief* MeSH attitude 16 psychosocial 17 psycho-social 18 1 OR 2 OR 3 19 4 OR 5 OR 6 20 7 OR 8 OR 9 OR 10 21 11 OR 12 OR 13 OR 14 OR 15 OR 16 OR 17 22 18 AND 19 AND 20 AND 21 MeSH: Medical Subject Headings.
- TABLE 2
Characteristics of included studies
First author, year [reference] Setting Participants Theoretical approach Aasbø, 2016 [23] Norway Carers of patients with COPD (4 M, 6 F) Thematic analysis Aasbø, 2017 [24] Norway Carers of patients with COPD (4 M, 6 F) Thematic analysis Adams, 2006 [25] Denmark, the Netherlands and UK COPD patients (16 M, 7 F) Grounded theory Ahmadi, 2014 [26] Sweden COPD, CHF, aortic stenosis, anxiety and asthma patients (7 M, 9 F, disease split unspecified) Unspecified Apps, 2014 [27] UK COPD patients (6 M, 9 F) Unspecified Arnold, 2006 [28] UK COPD patients (9 M, 11 F) Unspecified Avşar, 2010 [29] Turkey COPD patients (11 M, 3 F) Phenomenological Bailey, 2001 [30] Canada COPD “family nurse units” (patient, 2 family members, 1 nurse)
10 family nurse unitsNarrative analysis Bailey, 2004 [31] Canada Clinicians (n=10, sex unspecified) Ethnographic narrative Bailey, 2004 [32] Canada COPD “family nurse units” (patient, 2 family members, 1 nurse)
10 family nurse unitsNarrative analysis Bajwah, 2013 [33] UK Progressive idiopathic fibrotic ILD patients (5 M, 3 F) and 4 spouses (3 F, 1 M) Unspecified Barnett, 2005 [34] UK COPD patients (n=10, sex unspecified) Phenomenological Bergs, 2002 [35] Iceland Carers of patients with COPD (0 M, 6 F) Phenomenological Booth, 2003 [36] UK COPD patients (6 M, 4 F) and cancer patients (6 M, 4 F)
Cancers: respiratory system (n=6), breast (n=1), non-Hodgkin's lymphoma (n=2), renal cell carcinoma (n=1)Unspecified Booth, 2006 [37] UK COPD, heart failure, cancer (colon n=1, myelofibrosis n=1) and other (ILD)
10 patients (4 M, 6 F) and 10 carers (sex unspecified)Unspecified Bove, 2016 [38] Denmark Carers of patients with COPD (9 M, 13 F) Framework method Boyle, 2009 [39] USA Carers of patients with COPD (0 M, 10 F) Phenomenological–hermeneutic Brandt, 2013 [40] USA COPD patients (19 M, 9 F) Naturalistic method Caress, 2010 [41] UK COPD patients (8 M, 6 F) and carers (3 M, 9 F) Unspecified Chang, 2016 [42] Taiwan COPD patients (12 M, 2 F) Phenomenological Cicutto, 2004 [43] Canada COPD patients (23 M, 19 F) Unspecified Clancy, 2009 [44] UK COPD patients (6 M, 4 F) and carers (2 M, 5 F) Longitudinal Heideggerian Cooney, 2013 [45] Ireland COPD patients (15 M, 11 F) Straussian grounded theory Dickinson, 2009 [46] UK COPD patients (n=12, sex unspecified) Framework approach Duck, 2015 [47] UK IPF patients (7 M, 10 F) and their carers (2 M, 4 F) Framework analysis Dunger, 2015 [48] Germany COPD patients (4 M, 6 F) and lung cancer patients (5 M, 3 F) Framework analysis Edmonds, 2005 [49] UK Heart failure patients (20 M, 7 F) Unspecified Ek, 2008 [50] Sweden COPD patients (3 M, 5 F) Phenomenological Ek, 2011 [51] Sweden COPD patients (1 M, 3 F) Phenomenological–hermeneutic Ek, 2011 [52] Sweden COPD patients and carers (4 couples) Phenomenological–hermeneutic Elkington, 2004 [53] UK Carers of patients with COPD (7 M, 18 F) Unspecified Elofsson, 2004 [54] Sweden COPD patients (4 M, 2 F) Phenomenological–hermeneutic Figueiredo, 2016 [55] Portugal Carers of patients with COPD (12 M) Thematic analysis Fotokian, 2017 [56] Iran COPD patients (n=15), their carers (n=4) and clinicians (n=5) (sex unspecified) Grounded theory Fraser, 2006 [57] USA COPD patients (5 M, 5 F) Phenomenological–hermeneutic Gabriel, 2014 [58] Portugal COPD patients (16 M, 4 F) and their carers (2 M, 18 F) Thematic analysis Gardiner, 2009 [59] UK COPD patients (13 M, 8 F) Thematic analysis Genoe, 2017 [60] Canada COPD patients (6 M, 2 F) Interpretive phenomenological analysis Goldman, 2017 [61] USA COPD patients (16 M, 23 F) Iterative immersion/crystallisation qualitative analysis process Gott, 2009 [62] UK 39 clinicians working with COPD patients Unspecified Guthrie, 2001 [63] UK COPD patients (8 M, 12 F) Unspecified Gysels, 2008 [64] UK COPD patients (7 M, 11 F) Grounded theory Gysels, 2009 [65] UK Carers (all female n=15)
Various conditions: lung cancer (n=1), COPD (n=2), heart failure (n=3), MND (n=8), palliative care (unspecified; n=1)Grounded theory Gysels, 2009 [66] UK COPD patients (7 M, 11 F) Grounded theory Gysels, 2010 [67] UK COPD patients (7 M, 11 F) Unspecified Gysels, 2011 [68] UK Patients
Various conditions: cancer (unspecified; 5 M, 5 F), COPD (5 M, 9 F), heart failure (7 M, 3 F), MND (9 M, 1 F)Unspecified Habraken, 2008 [69] The Netherlands COPD patients (8 M, 3 F) Unspecified Hallas, 2012 [70] UK Patients with various conditions (5 M, 7 F)
Respiratory conditions: IPF (n=5), cystic fibrosis (n=1), bronchiectasis (n=2), COPD (n=1), primary pulmonary hypertension (n=1), recurrent pneumothoraces (n=1);
Heart problems: Eisenmenger's syndrome (n=1)Phenomenological Harris, 2008 [71] UK COPD patients (12 M, 4 F) Interpretive phenomenological Hasson, 2008 [72] Northern Ireland COPD patients (10 M, 3 F) Unspecified Henoch, 2008 [73] Sweden Lung cancer patients (11 M, 9 F) Unspecified Jeng, 2002 [74] Taiwan COPD patients (7 M, 2 F) Constant comparison and content analysis Jones, 2004 [75] UK COPD patients (8 M, 8 F) Unspecified Kanervisto, 2007 [76] Finland COPD patients (n=5, sex unspecified) and spouses (n=4, sex unspecified) Content analysis Kerr, 2010 [77] UK COPD patients (6 M, 3 F) Grounded theory Korpershoek, 2016 [78] The Netherlands COPD patients (8 M, 7 F) Grounded theory Lai, 2007 [79] China Lung cancer patients (n=11, sex unspecified) Content analysis Leidy, 1999 [80] USA COPD patients (6 M, 6 F) Phenomenological Lewis, 2014 [81] UK COPD patients (n=25, sex unspecified) Phenomenological Lowey, 2013 [82] USA COPD and heart failure patients (proportion unspecified; 9 M, 11 F) Unspecified Maguire, 2014 [83] UK Lung cancer patients (4 M, 6 F) Interpretive phenomenological analysis Marx, 2016 [84] Germany COPD patients (10 M, 7 F) Grounded theory Mosher, 2015 [85] USA Lung cancer patients (n=21: 10 M, 11 F) and carers (n=21: 6 M, 15 F) Thematic analysis Nicholls, 2003 [86] New Zealand COPD patients (5 M, 5 F) Phenomenological Nicolson, 2000 [87] UK Chronic bronchitis patients (10 M, 10 F) Unspecified Nicolson, 2003 [88] UK COPD patients (10 M, 10 F) Symbolic interactionist theoretical framework O’Driscoll, 1999 [89] UK Lung cancer patients (30 M, 22 F)
Nonsmall cell (n=32), small cell (n=13), mesothelioma (n=4), suspected (n=3)Content analysis Oliver, 2001 [90] UK COPD patients (n=16, sex unspecified) Phenomenological O’Neill, 2002 [91] USA COPD patients (0 M, 21 F) Common sense concept Overgaard, 2016 [92] Denmark IPF patients (15 M, 10 F) and their carers (n=24) Framework method Paap, 2014 [93] The Netherlands COPD patients (13 M, 8 F) Grounded theory Pinnock, 2011 [94] UK COPD patients (14 M, 7 F)
Carers (13 informal, 18 professional)Unspecified Roberts, 1993 [95] Canada Cancer patients (4 M, 6 F), clinicians (all nurses; n=12, sex unspecified)
Cancers: lung (n=4), breast (n=2), throat (n=1), stomach (n=1), prostate (n=1), kidney (n=1)Unspecified Robinson, 2005 [96] UK COPD patients (6 M, 4 F) Qualitative phenomenological Ryan, 2009 [97] Ireland Heart failure patients (6 M, 3 F) Phenomenological Seamark, 2004 [98] UK COPD patients (9 M, 1 F) and carers (n=8) Interpretative phenomenological Shipman, 2009 [99] UK COPD patients (9 M, 7 F) Unspecified Simon, 2016 [100] Germany CHF patients, COPD patients, lung cancer patients and MND patients (n=51: 30 M, 21 F) Framework analysis Simpson, 2010 [101] Canada Carers of patients with COPD (3 M, 11 F) Attride-Stirling thematic network Small, 2012 [102] UK COPD patients (8 Devon, 13 Barnsley, sex unspecified)
Clinicians (19 Devon, 20 Barnsley, sex unspecified)Unspecified Spence, 2009 [103] Ireland Clinicians (7 M, 16 F) Unspecified Spence, 2008 [104] Ireland Carers of patients with COPD (1 M, 6 F) Thematic analysis Strang, 2014 [105] Sweden COPD patients (15 M, 16 F) Manifest and latent content analysis Stridsman, 2015 [106] Sweden COPD patients (5 M, 5 F) Latent qualitative content analysis Stull, 1999 [107] USA Heart failure patients (17 M, 4 F) Grounded theory Taylor, 2017 [108] UK Heart failure patients (11 M, 5 F) Framework method Wainwright, 2017 [109] Uruguay COPD patients (23 M, 14 F) Sensorial medical anthropology Walthall, 2017 [110] UK Heart failure patients (15 M, 10 F) Thematic analysis Walters, 2008 [111] Australia COPD patients (5 M, 9 F)
Clinicians (GPs; n=19, sex unspecified)Unspecified Willgoss, 2012 [112] UK COPD patients (5 M, 9 F) Thematic network analysis Williams, 1993 [113] UK COPD patients (n=24, sex unspecified) and their families Sociological approach Williams, 2007 [114] UK COPD patients (4 M, 2 F) Unspecified Williams, 2010 [115] UK COPD patients (6 M, 3 F) Grounded theory Williams, 2011 [116] UK COPD patients (12 M, 6 F) Grounded theory Wilson, 2007 [117] Ireland COPD patients (25 M, 7 F)
Clinicians (n=8, sex unspecified)Unspecified Wong, 2014 [118] Malaysia COPD patients (18 M) and their doctors (5 M, 13 F) Thematic analysis Wood, 2013 [119] UK Lung cancer patients (7 M, 2 F) Unspecified Wortz, 2012 [120] USA COPD patients (25 M, 22 F) Unspecified Young, 2012 [121] Canada Clinicians, caring for patients with COPD (10 family physicians, 8 respiratory specialists, sex unspecified) Unspecified Yu, 2007 [122] China COPD patients (5 M, 0 F) Thematic network analysis Zakrisson, 2010 [123] Sweden Clinicians, caring for patients with COPD (n=12, sex and speciality unspecified) Unspecified COPD: chronic obstructive pulmonary disease; M: male; F: female; CHF: congestive heart failure; ILD: interstitial lung disease; IPF: idiopathic pulmonary fibrosis; MND: motor neurone disease; GP: general practitioner.
- TABLE 3
Codes and themes from the synthesis
Themes Subthemes Codes Widespread effects of breathlessness Physical effects
Psychological effects
Social effects
Existential effectsBereavement, change in relationships, change in roles or identity, impact on carer, isolation, manner of death, restricted freedom, physical limitations, psychological effects, shrinking lifeworld, social limitations, stress of breathlessness, carers’ needs, hopelessness, loss, self-esteem, social embarrassment, spiritual or existential aspect Coping Disengaged coping
Engaged copingAcceptance, adaptation, communication, cooperation with patient needed, helplessness, importance of mobility, lack of understanding, comorbidities, breathing techniques, attitude to support groups, 1 day at a time, carer's own health, palliative care, sense of duty, smoking cessation, stagnation, stoicism, carer support needed, community support, pulmonary rehabilitation, self-management, autonomy, avoidance, being cared for, benefit of air movement, benefit of being outside, benefit of fan, benefit of fresh air, breathlessness as a way of life, connectedness, health within illness, hope, hopelessness, importance of mobility, increased activity post-pulmonary rehabilitation, increased self-efficacy, injustice, innovation, lack of knowledge, motivation to keep going, need for activity, own pace, perseverance, resignation, self-monitoring, breathlessness is normal, struggling, suicide, support from others, taking 1 day at a time, stigma, hiding Help-seeking behaviour Recognising breathlessness as a problem to be solved
Deciding to take action
Selecting a potential helper
Disclosing the problem
Consequences of help-seekingHelp-seeking, reluctance to present to healthcare professional, pride not asking for help, need for information, information seeking for self, lack of information, explaining it away, access to healthcare professional, lack of acknowledgement, consultation constraints Healthcare professional responsiveness to breathlessness Testimonial injustice
Hermeneutical injustice
Responses to breathlessnessEpistemic injustice, lack of understanding, nothing more can be done, palliative care, clinician distress, diagnosis, prognosis, holistic approach, management of breathlessness, future care, invisibility, continuity of care, where to present, waiting
Supplementary Material
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Supplementary material ERJ-01477-Supplement
Vol 51 Issue 2
Table of Contents
Living with breathlessness: a systematic literature review and qualitative synthesis
