Encouraging attendance at pulmonary rehabilitation: a

qualitative exploration

Dr Cathy Bulley, Dr Lisa Salisbury,

Ms Suzanne Whiteford,

Prof Marie Donaghy,Ms Elaine MacKay

Chronic Obstructive Pulmonary Disease

COPD involves limitation of expiratory airflow

shortness of breath, productive coughdeconditioning cycle, with fear and avoidance of

activities ↓ function, ↓ quality of life earlier death (Anto et al, 2001)

Medline Plus, 2004

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)

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

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

This study…Aim:

• to explore individuals’ views regarding pulmonary rehabilitation PRIOR to attendance

Purpose:

• Increase understanding of influences of attendance at pulmonary rehabilitation

• Take action to optimise uptake and participation

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

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)

Analysis

• Interpretative Phenomenological Analysis framework

Classification of views and experiences (themes)

Interrelationships between themesQSR N6 package for data management2 researchers to increase trustworthiness

Results: 3 Master-Themes• Contrasting experiences and attitudes relating

to pulmonary rehabilitation:

1) ‘I want to walk and breathe better’

2) ‘Exercise will kill me’ versus

‘I can’t let it beat me’

1) ‘A waste of my time’ versus

‘Doctors know best’

‘I want to walk and breathe better’

• Individuals expressed a desire for professional advice and support in coping better

Independent development of self-management strategies

Not enough – more help is needed from experts and peers

Positive attitudes and realistic expectations Aim of increasing independence and

participation

Data: ‘I want to walk and breathe better’• I hope to be able to walk a bit better, to breathe

better... just a wee bit more independence. I know it's not going to be miracles, but I can only try and see if it helps. [John]

• Just....interested in something maybe just to help me...see how other people responding to it… [Jane]

• Hopefully there will be health professionals there that will advise us on I don't know, recovery, breathing… [David]

‘Exercise will kill me’ versus ‘I can’t let it beat me’

• Similarity in symptoms reactions

like panic, fear, loss of control

• Some react by avoiding activity/exercise

wariness about attending rehabilitation

• Some refuse to dwell on negative experiences determination to do anything that will help.

Data: ‘exercise will kill me’• I think you do panic... you think that it's going to be the

last time you're going to breathe to be honest, it just feels like it could be the last breath I'm going to take. [David]

• I mean breath is a thing you need that you need to keep you going whereas a sore arm doesn't or a sore leg... with your breathing you imagine you're going to die ‘cos you're not going to breathe… Aye, if I was able to breathe better I'd be able to ehh...do more. [Florence]

• Well I think there would be exercises but they would have to be gentle exercises you know. Exercises that a person who can't breathe properly could do. [Steven]

Data: ‘I can’t let it beat me’• I thought I was going to die off… but I don't

dwell on it, once it's past it's past. It doesn't make me frightened to go anywhere or do anything you know. [Elizabeth]

• I try to keep myself moving, and I'll not give in. [John]

• If there's anything that will maybe help to get me mobile I'll try it. I've always been a fighter… [John]

A ‘waste of my time’ versus ‘Doctors know best’

• Previous negative experiences of management low expectations of pulmonary rehabilitation

unsupported, dismissed, not listened topoor parking, exhausting walk, no benefit

• Previous positive experiences of management faith in health professionals and willingness to follow recommendations

supported, listened to, well advised

Data: ‘a waste of my time’

• I would go [to the clinic] every six months, … it would be someone different each time, and the only question they would ask me was "How do you feel?" and I'd say, "Well I'm fine thank you, normal...” I really couldn't see the point of attending… for the aggravation again trying to park down there, get myself home, it just wasn't worth it. [David]

• I think I would find out if I went there [rehabilitation] for maybe five or six weeks and found no benefit at all, I would just tell them...that I was wasting my time. But if I found it was giving me benefit, I would definitely carry it through right to the end. [Steven]

Data: ‘doctors know best’

• I must say I was very impressed… he was very nice… and made you feel… he was interested… he wasn't dismissive. I've always found that they were doctors that you could talk to… I've got a lot of faith in them... [Elizabeth]

• Surprisingly when I was at the Victoria on Friday past, the [physiotherapist] actually showed me a position to sit in and to.... a recovery position… and it's obviously worthwhile trying you know, and that's why I think the rehab would be of benefit. [David]

ConclusionsIndividuals recognise the potential to learn

better ways of copingFear of the burden of attending may outweigh

hopes of benefitThe aims and content of rehabilitation should

be very carefully explained on referralEnthusiastic referrals are importantAnxieties should be addressed

Sponsors:

School of Health Sciences, Queen Margaret University, Edinburgh

Centre for Integrated Healthcare Research, Edinburgh

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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

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• 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.