**1. Introduction**

152 Chronic Obstructive Pulmonary Disease – Current Concepts and Practice

Shapiro SD, Reilly JJ, Rennard SI(2010): Chronic Bronchitis and Emphysema. In: Murray & Nadel's Textbook of Respiratory Medicine 5th ed: 919-967. Saunders. Tashkin DP, Celli B, Senn S, et al(2008): A 4-year trial of tiotropium in chronic obstructive

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Pregnant Women

This chapter will review our current understanding from the qualitative research literature on the experience of COPD for the patient and family. It will provide exemplars from the author's past research to ground these concepts within patient and family experience. Whilst research into symptom measurement, functional and biochemical measurements of lung function and pharmacological outcomes give important insights into the physiological dimensions of COPD, methodologies that explore the psychosocial dimensions are not always well understood. Research output is increasingly valued according to clearly definable 'Levels of Evidence' (National Health and Medical Research Council, 2009). This approach makes visible the rigour of processes that underpin clinical evidence and considers practices confirmed at one extreme by double-blinded, randomised, controlled trials, through to the accepted wisdom of experts in the field. Demonstrable rigour in research is particularly important when evaluating the safety and efficacy of new drugs and interventions. In this case, large sample-sizes, strict control of variables and meticulous monitoring of the research protocol to maintain objectivity means that clinicians can weigh up, with confidence, the therapeutic choices available to them. This quantitative approach to research relies on statistical methods to determine 'truth'.

Clinicians have sought ways to apply quantitative research methods to measure psychosocial dimensions of illness and treatments. Symptom and impact scales such as the Hospital Anxiety and Depression Scale (Zigmond et al., 1983) and the International Continence Society Sex Questionnaire (Blanker et al., 2001), are examples of instruments that can identify the presence and frequency of issues of importance to patients across the COPD population. Instruments like the SF-36 (Mahler & Mackowiak, 1995) and the Sickness Impact Profile (McDowell & Newell, 1987) allow us to determine the influence of disease and interventions on a person's quality of life. Measures of adaption to illness such as the Jalowiec Coping Scale (Jalowiec et al., 1984) quantify the behavioural and cognitive coping strategies people use to deal with social, physical end emotional stressors.

These quantitative measures of psychosocial aspects of COPD are useful in their ease of applicability to large research samples. They provide an aspect of evaluation that goes beyond the purely physiological concerns of health professionals to consider the patient-

Psychosocial Dimensions of COPD for the Patient and Family 155

1969), which is frequently used alongside Grounded Theory to find social explanations for behaviours. Symbolic interactionism sees people as 'pragmatic actors' who constantly adjust their own behaviour in response to others, and we can do this because we have the cultural and social understandings to interpret the meaning of those actions (McClelland, 2000). Maurice Merleau-Ponty's philosophy of the body (Merleau-Ponty, 1945:1962) is an example often applied to phenomenological studies that explore the embodied experience of illness. Merleau-Ponty describes people as perceiving the world through their body which acts

Other modes of qualitative inquiry informing this review include, but are not limited to, content analysis (Krippendorff, 2004) and narrative analysis (Reissman, 1994). As with all research, findings from qualitative studies should be carefully considered according to the

Breathlessness is at the forefront of the experience of COPD, and breathing becomes a conscious focus of the person's life. COPD has been described as "a story with no beginning" (Pinnock et al., 2011); the changes in breathing are so slow and insidious that for a long time the decline is normalised; put down to getting older or being less fit. Eventually, the breathlessness begins to impact on the person's ability to conduct their day-to-day activities and is accompanied by other respiratory symptoms and poor exercise tolerance. Petra (63 yrs) had severe COPD before she sought advice from her doctor: *"… to go from my bed to the lavatory and back, I'm huffing and puffing. I thought 'This can't be right' ... I get out of* 

Distressing breathlessness can be precipitated by certain body positions, by activities such as walking and climbing stairs and by extremes of emotion. Environmental triggers such as excessive heat or cold, smoke or perfumes exacerbate breathlessness and people may need to anticipate and avoid these triggers. This avoidance of the triggers of breathlessness can isolate people from locations and activities that once that once afforded them pleasure (Gullick & Stainton, 2008). Chris (67 yrs) explained: *"There's lots of things I'd like to do but I just can't… Get out in the garage, make things. Well, I went out the other day to try and sand down* 

Breathless people experience good days and bad days and this means that despite planning ahead, a bad day may rule out hoped for activities. Certain times of the day can be more problematic, with breathing often worse in the mornings, coinciding with the need to clear sputum and the need to attend to washing and dressing, and at night interfering with sleep. Certain times of the year can also worsen breathlessness due to extremes of temperature (Barnett, 2004). Williams (2011) reported that the person's perception of air movement made

Acute breathlessness is associated with panic, fear of suffocation, and fear of dying during an attack. People feel helpless and out of control of their bodies at these times (Williams et al., 2011, Avsar & Kasilkci, 2011, Elkington et al., 2005). Strategies can be taught that help

1 Any unreferenced participant quotes in this chapter are sourced from unpublished interview data

a difference to breathing, with fresh 'outdoor air' being easier to breathe.

from research reported in Gullick (2008). All names are pseudonyms.

spontaneously, in a *taken-for-granted* manner until something goes wrong.

**3. Loss of** *taken-for-granted* **breathing** 

*our cutting board …there's all the dust, and … forget it!"*

*breath all the time".1*

pre-determined criteria for rigour within the chosen methodology (Ezzy, 2002).

perceived impacts of health problems and treatments. What they do not always achieve is firstly, the sensitivity necessary to reveal subtle but important changes in patient experience, and secondly, an explanation of the meanings behind results. Qualitative research methods have a different purpose to positivist, quantitative studies. Rather than seeking objective 'truth', they seek to gain an understanding of the meanings of illness and treatments for people. As such, there is an acceptance of the subjectivity of experience, and an acknowledgement of the context of an experience, rather than trying to control for context.
