1. GASP G oulburn A irways S tories and P erceptions A phenomenological study into the experience of breathlessness in COPD Robbie Hoskins, Lou Fox, Jane Cotter Goulburn Health Service SNSWLHD

2. “just anxiety” Breathlessness most distressing symptom in COPD Simplistic perceptions exist amongst HP that it is “just anxiety” Previous studies and anecdotal evidence suggest it is more complex influenced by the patient’s individual understanding and experience of breathlessness We wanted to try to understand a COPD client’s experience of coping with breathlessness in Goulburn, a rural town.

3. Background Some research suggests that unlike with pain, COPD patients have few words for expressing to others how they feel and the language of dyspnoea is poorly developed. This suggests that communication about the severity of dyspnoea with HP and families may be difficult for patients (Fraser et al 2006) Schneider et al 2010 associates COPD with risk of depression and relates this to severity. Fraser (2006) and Bailey (2004) found that patients with acute exacerbations of COPD saw anxiety as an indication of breathlessness rather than a cause. Bailey also suggested that patients measure the severity of dyspnoea by how they feel emotionally and what they were able to do which suggests that descriptors of severity may involve emotional language.

5. Aim To investigate patients with COPD experiences of living with breathlessness, and To enable extension to and improvements in the understanding of healthcare professionals in the provision of support services and assistance for this population group. The researchers were a Psychologist, an Occupational Therapist and a Nurse Practitioner

6. Methodology Ethics approval was in order to ensure the validity of the study and the safety of the participants. 10 patients with diagnosed moderate to severe COPD on spirometry were randomly selected. They had all been involved in Pulmonary Rehabilitation in one form or another

7. Methodology continued The structured interview was based on O’Neill’s interpretation of the Common Sense Model of illness representation (2002)(based on Leventhal, Meyer and Nerenz 1980) which postulates. People are active processors who create mental representations of their illness and strive to make sense of their bodily experiences and these beliefs then inform their coping strategies. The logical dimensions that order the illness representation are identity, cause, timeline, consequences and coping. These provided the basis for the questions in the interviews.

8. In order to limit the potential for bias arising from previously formed relationships interviews were conducted by the 2 researchers not directly involved with the participants – one conducted the interview and one typed the responses verbatim. The transcripts were then sent to the participants so they could verify the answers and modify if they wished.

9. Data Analysis Colaizzi’s staged method of data analysis (1978) was utilized The 3 researchers were all from different backgrounds, disciplines and level of experience in this area Having 3 researchers helped avoid presuppositions and bias and gave a ready means of checking interpretation for bias Each researcher read the transcripts and then came together to generate a number of themes.

10. Analysis continued 2 researchers then went through the transcripts independently to extract significant statements and allocate them to the possible theme. The third researcher cross checked the significant statements and themes to ensure rigour and the final allocation was agreed by all three The themes then were organized into emergent themes which aimed to encapsulate universal concerns The participants were then invited to review and comment on what we heard them say and the themes. This led to some fine tuning.

11. Emergent Themes Hospital as a last Resort Continual adjustment Emotional Vulnerability Knowledge as a toolbox

12. Hospital as a last Resort 80% left going to hospital as a last resort - poor hospital experience -a fierce sense of independence. 40% found difficulties in communicating to those who do not understand and saw a priority in getting to someone who did understand and required little talking.

13. Continual Adjustment Adjustment is the biggest issue in the newly diagnosed – “I want to be left alone”. “They don’t realise talking can’t happen when I can’t get breath” Understandings come with time. Aspects of this adjustment- 60%- Inability to perform valued family helping functions. 60%- Accepting help and getting better at saying no. 40% described this adjustment as a battle between the mind wanting to do something but the body incapable - “needing to get the mind in the right place to control the body.”

14. “Fighting spirit” 100% expressed the need to take control, to fight the breathlessness, to not “become the disease”, to “treat it as a self care thing.” 60% used language that externalizes and personifies the disease process which can be seen as having a mind of its own – “It lets me then.”- this is an adaptive process. The unpredictable nature of the disease makes this fight difficult. Control is not easily achieved - “ Not one day is the same. It’s not predictable” - “I’ve got to adjust to it, not it adjust to me”

15. The everyday battles in living were obvious.- 60% spoke of the effort involved in simple ADL’s. 60% found socializing a challenge- difficulties with equipment, walking, standing, talking, not wanting to inflict mood on others.

16. Emotional Vulnerability 50% spoke of depression or depressed mood when sick day after day (Schneider et al 2010) 20% mentioned benefits of controlling difficult emotional states because of their capacity to increase breathlessness- What were these states? 30% mentioned anger and frustration contributing to or associated with breathlessness. Michaels et al (2008) found a correlation between anger words and breathing intensity. Depression, fear, nerves and worry were mentioned by other individuals – no more dominant than anger

17. 70% said breathlessness causes the anxiety rather than the other way round. Supports anxiety as an indicator of the severity of the illness. (Bailey 2004) 40% concerned with possibility of death - 2 died during the study. 100% saw breathlessness and choking as the most distressing symptom- expect abruptness, irritability in the struggle to get breath.

18. Knowledge as a toolbox 70% recognized the importance of a key professional 90% use sitting to catch breath and 90% use pacing themselves to achieve tasks 70% found Action Plans useful and only one did not want an Action Plan 70% talked of breathing strategies for coping but 80% spoke of limitations to this- useful for mild to moderate breathlessness.

19. “A wet mattress started it” 70% chose a label other than COPD to identify their disease - asthma, bronchial asthma, heart/lung condition. An identifiable start of the condition was sometimes unclear and sometimes unrealistic.- “A wet mattress started it” -“Because I had that breakdown.” Participants felt that COPD was too big a label with too much under it.- this caused confusion and often a reduced sense of control

20. Implications for Practice Communication difficulties while breathless make the experience of triage difficult for the patient – Whilst hospital was a last resort - comments about avoiding hospital were focused on the admission process and their strong feelings tempered by a sense of security once admission was achieved. – This study supports the premise that anxiety may not be the cause of the breathlessness and is more likely to be an indicator of the severity of breathlessness and degree of exacerbation. – Recommendations – – Use of the Borg Scale on admission to measure perceived level of breathlessness, and – Explanation of non- verbal measures of breathlessness used by staff to assess patients

21. Health literacy implications Confusion re naming of COPD has implications for communication and health literacy. It has been suggested by Pinnock et al(2011) this confusion means no “public” story to which patients can relate ie unclear expectations – “no expectation of death and no despair but equally no hope of cure” Need to look at consistencies with naming diseases and use of these terms with patients.

22. In practice Ongoing use of pulmonary rehab programs including discussion of patient experience of breathlessness and identified useful strategies. Continue to focus on using a Key Professional role in management of chronic disease Education to health professionals on the implications for practice in the acute and community settings and encourage a change in attitude and deeper understanding of staff.

23. References Bailey, P. (2004). The dyspnea-anxiety-dyspnea cycle - COPD patient's dstories of breathlessness: "It's scary/when you can't breathe:. Qualitative Health Research, 14(6), 760-778. Christenbery, T. (2005). Dyspnea self-management strategies: use and effectiveness as reported by patients with chronic obstructive pulmonary disease. Heart & Lung, 34(6), 406-417. Colaizzi, P.F. (1978) Psychological research as a phenomenologist views it. In Valle, R.S. King, M. (eds) Existential phenomenological alternatives for psychology OUP NY Fraser, D., Kee, C., & Minick, P. (2006). Living with chronic obstructive pulmonary disease:insiders' perspectives. Journal of Advanced Nursing, 55(5), 550-558. Hagger, M., & Orbell, S. (2003). A meta-analytic review of the common-sense model of illness representations. Psychology and Health, 18(2), 141-184. Michaels C, Meek, PM, Dedkhard S, Breathing intensity and word use in individuals with COPD Chronic Respiratory Disease 2008: (5): 197-204 O'Neill, E. (2002). Illness representations and coping of women with chronic obstructive pulmonary disease. Heart & lung, 31(4), 295-301. Pinnock H, Kendall M, Murray S, Worth A, Levack P, Porter M, MacNee W, Sheikh A, Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. BMJ 2011; 342:d142 Schneider, C. Jick, S. Bothner, U. Meier, C. (2010) COPD and the Risk of Depression, Chest 137(2), 341-347.