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Patient experiences of COPD: the impacts of interactions with health professionals Dr Cathy Bulley, Dr Lisa Salisbury, Ms Suzanne Whiteford, Prof Marie Donaghy,Ms Elaine MacKay
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Chronic Obstructive Pulmonary Disease COPD involves limitation of expiratory airflow shortness of breath, productive cough deconditioning cycle, with fear and avoidance of activities ↓ function, ↓ quality of life earlier death (Anto et al, 2001) Medline Plus, 2004
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Extent of the Problem Global prevalence estimate: 9.3/1000 for men; 7.3/1000 for women Expected that in 2020 this will be the third most prominent cause of death (WHO, 1995; Murray & Lopez, 1997) Sub-optimal management over-reliance on acute care (Wouters, 2003)
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Supporting Self-Management ↑ emphasis on management of long-term conditions Individuals can learn better ways of coping with COPD Pulmonary rehabilitation aims to maximise function using: (BTS, 2001) exercise training, education and support in symptom control
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Evidence and Participation There is strong evidence of the efficacy of pulmonary rehabilitation (Lacasse et al, 2006) BUT benefits depend on participation – varies from 40% to 66% (e.g. Young et al, 1999) Minimal research into patterns of participation Greater understanding of decisions is needed
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This study… Aim: to explore individuals’ experiences of COPD and its management PRIOR to attending pulmonary rehabilitation Focus of this abstract: The impacts of interactions with health professionals on experiences and views about attending pulmonary rehabilitation
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Study Design Qualitative; Phenomenological Interpretative Phenomenological Analysis (IPA) (Conrad, 1987) Gain understanding of the patient’s perspective through co-construction between the participant and researcher Single semi-structured person-person interview in participant’s home (Grbich, 1999): 50-90 minutes
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Participants Individuals with COPD accepting referral to Pulmonary Rehabilitation during clinic visit Purposive selection to ensure men and women 10 participants sought, 9 participated (5 men, 4 women) White Caucasians living in Glasgow, aged 59-82 Ethical approval granted (Multi-Centre REC)
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Analysis Interpretative Phenomenological Analysis framework Classification of views and experiences (themes) Interrelationships between themes QSR N6 package for data management 2 researchers to increase trustworthiness
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Results: Positive Interactions Positive interactions with health professionals: Provision of effective advice on coping with symptoms (paramedics, nurses, physiotherapists) Feelings of faith in health professionals Positive expectations of further management, including pulmonary rehabilitation
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Results: Negative Interactions Absence of advice (except about smoking) from medical staff feelings of being dismissed perception that specialist management is a waste of time and energy The burden of pulmonary rehabilitation may > benefit
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Referral Practices: views about attending pulmonary rehabilitation were more positive when: Referrers stated how wonderful the results are (non-specific…) views about attending pulmonary rehabilitation were more negative when: Referrers were vague about content (e.g. – “there’s exercise…”)
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Follow-up… Information on actual attendance – Non-attendance due to inappropriate referral (1) poor referral coordination (1) and a clash with another research study (1) and for no stated reason (1) Non-completion due to infection / co-existing conditions – mobility, depression (2) Completion despite interruptions due to infection (3) This made follow-up interviews (6) of limited use
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Conclusions All our interactions impact on individuals’ beliefs and perceptions regarding management
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What can we do? Improve referral practices… Ideally: emphasise that pulmonary rehabilitation aims to increase function and independence using education and advice, individually tailored and expertly supervised exercise, and group support concerns about attending? At the very least – express enthusiasm!
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Thank you for your attention! Acknowledgments: School of Health Sciences, Queen Margaret University, Edinburgh Centre for Integrated Healthcare Research, Edinburgh
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References Anto, J., Vermeire, P., Vestbo, J., & Sunyer, J. (2001). Epidemiology of chronic obstructive pulmonary disease. Eur Respir J, 17, 982-994. British Thoracic Society. (2001). BTS Standards of Care Subcommittee on Pulmonary Rehabilitation. BTS Statement: Pulmonary Rehabilitation. Thorax, 56, 827-834. Conrad, P. (1987). The experience of illness: Recent and new directions. Res Sociol Health Care, 6, 1-31. Grbich, C. (1999). Qualitative research in health: an introduction. London: Sage Publications Ltd. Lacasse, Y., Brousseau, L., Milne, S., et al. (2006). Pulmonary rehabilitation for chronic obstructive pulmonary disease. The Cochrane Database of Systematic Reviews. (Issue 2, Art. No.: CD003793, DOI: 10.1002/14651858, CD003793) Medline Plus (2004) Medical Encyclopedia: Emphysema, National Library of Medicine (NLM). Online at: http://www.nlm.nih.gov/medlineplus/copyright.html [Accessed 19/03/2007].http://www.nlm.nih.gov/medlineplus/copyright.html Murray, C., & Lopez, A. (1997). Alternative projections of mortality and disability by cause 1990-2020: Global burden of disease study. Lancet, 349, 1498-1504. World Health Organisation (WHO). (1995). World Health Statistics Annual. Geneva: WHO. Wouters, E. (2003). Economic analysis of the Confronting COPD survey: an overview of results. Respir Med, 97, S3-S14. Young, P., Dewse, M., Fergusson, W., et al. (1999). Respiratory rehabilitation in chronic pulmonary disease: predictors of nonadherence. Eur Respir J, 13, 855-859.
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