Living with breathlessness: a systematic literature review and qualitative synthesis

Abstract

What is the experience of people living with breathlessness due to medical conditions, those caring for them and those treating them, with regard to quality of life and the nature of clinical interactions?Electronic databases (Ovid MEDLINE, Embase, CINAHL Plus and PsycINFO) were searched (January 1987 to October 2017; English language), for qualitative studies exploring the experience of chronic breathlessness (patients, carers and clinicians). Two independent reviewers screened titles, abstracts and papers retrieved against inclusion criteria. Disagreements were resolved with a third reviewer. Primary qualitative data were extracted and synthesised using thematic synthesis.Inclusion and synthesis of 101 out of 2303 international papers produced four descriptive themes: 1) widespread effects of breathlessness; 2) coping; 3) help-seeking behaviour; and 4) clinicians' responsiveness to the symptom of breathlessness. The themes were combined to form the concept of "breathing space", to show how engaged coping and appropriate help-seeking (patient) and attention to symptom (clinician) helps maximise the patient's quality of living with breathlessness.Breathlessness has widespread impact on both patient and carer and affects breathing space. The degree of breathing space is influenced by interaction between the patient's coping style, their help-seeking behaviour and their clinician's responsiveness to breathlessness itself, in addition to managing the underlying disease.

Control and Context Are Central for People With Advanced Illness Experiencing Breathlessness: A Systematic Review and Thematic Synthesis

“…Although earlier work has highlighted the experience of living with breathlessness, 10,56 this is to our knowledge the first attempt to systematically identify and synthesize the main concerns for people with advanced illness experiencing breathlessness, to guide the choice of outcome measures in clinical practice and research. We consider these concerns within a model of ''total breathlessness'' that incorporates six domains: 1) the physical symptoms of breathlessness and subsequent effect on function; 2) emotional features; 3) the spiritual distress experienced; 4) the social impact of breathlessness; 5) concerns relating to aspects of control; and 6) the context of breathlessness (acute episode or chronic).…”

“…1 Individual qualitative studies have explored what it is like for people to live with breathlessness, including the experience of care and impact of illness, and a recent systematic review considers the role of coping, help-seeking behavior, and clinician responsiveness. 10 In this review, Hutchinson describes the concept of breathing space and highlights the importance of clinician response in determining future coping and helpseeking behavior. 10 However, there has been no attempt to systematically synthesize the concerns for people experiencing breathlessness with the aim of informing outcome measurement in clinical practice and research.…”

“…10 In this review, Hutchinson describes the concept of breathing space and highlights the importance of clinician response in determining future coping and helpseeking behavior. 10 However, there has been no attempt to systematically synthesize the concerns for people experiencing breathlessness with the aim of informing outcome measurement in clinical practice and research. Our systematic review aims to determine the main concerns for people with advanced illness experiencing breathlessness, to guide comprehensive clinical assessment, optimize clinical interactions, and inform future outcome measurement in clinical practice and research.…”

Vicarious breathlessness: an inferential perceptual learned transposition process that may not be inconsequential to either patient or caregiver

“…Disabling chronic breathlessness, persisting despite optimum treatment of the underlying cause [2], is experienced by almost all patients with advanced lung disease, such as chronic obstructive pulmonary disease (COPD) [3], and carries a significant emotional, social, health and economic load. Intimately related to physical activity, chronic breathlessness reduces the ability to carry out activities of daily living [4] and restricts the role in the family, workplace or wider society [5]. These consequences, with additional frightening severe episodes of breathless crises, lead not only to acute emotional responses that not only widely activate a multitude of brain regions [6], but also promote the insidious development of depression, anxiety and panic, and a reduction in physical and mental quality of life proportionate with the severity of breathlessness [7].…”

“…Consequently, many caregivers may have poor confidence, be overprotective [17], drive increased emergency health service use [18,19] and may frustrate the patient [20]. A systematic review and synthesis of 101 qualitative studies of patient, caregiver and clinician experience of chronic breathlessness described the complex interplay between the patient's and caregiver's coping and help-seeking behaviours around breathlessness, and the clinician's attention to breathlessness, as well as to treatment of the disease [5]. One of the prominent conclusions from this review was that engaged coping strategies and appropriate help-seeking practices allowed maximum "breathing space" for the patient.…”