Patient experiences of pulmonary rehabilitation programmes

Abstract
Denn, D. (2008) Patient experiences of pulmonary rehabilitation. This is an extended version of the article published in Nursing Times; 104: 20, 32-33.
BACKGROUND: There is no consensus on the best method for delivering pulmonary rehabilitation programmes for patients with COPD, and there is also a lack of evidence on patient experiences of them.
AIM: This qualitative study aimed to explore patients' understanding and expectations before, and their experiences after, attending a programme.
METHOD: Two focus groups were held, one before the programme with five participants and one after with four.
RESULTS AND DISCUSSION: The three main themes that emerged before the programme were stoicism in living with COPD, the impact of the condition and patients' fears surrounding it. The second focus group highlighted the positive impact of pulmonary rehabilitation. The three main themes were the importance of comradeship, empowerment and the concept of severity, as participants did not want to be portrayed as 'faking' illness.
CONCLUSION: Pulmonary rehabilitation empowered participants to understand and cope with their condition. Peer support was important as it encouraged them to help each other.    

Author
Deirdre Denn, MSc RGN Dip Professional Studies in Nursing (respiratory care), Dip Asthma Care, is respiratory specialist nurse, Cornwall and Isles of Scilly Primary Care Trust.

Background

The British Thoracic Society (1997) defined COPD as 'a chronic, slowly progressive disorder characterised by airflow obstruction… that does not change markedly over several months'. This long-term condition eventually impacts on activities of daily living, as noted by Godden and Douglas (2000), leading to severely compromised patients who are unable to function independently.

Smoking is thought to be the primary cause in the majority of cases. One in ten smokers will go on to develop COPD (Halpin, 2001), making it an important disease to understand and manage. Smoking cessation is recommended and the aim of treatment is to control symptoms with medication and treat exacerbations promptly to avoid further damage to the remaining lung tissue (Haughney et al, 2005).

Pulmonary rehabilitation aims to help patients manage COPD and should be available to all those who are suitable (NICE, 2004). It is a programme of education and physical activity that aims to improve quality of life and exercise tolerance.

The American Thoracic Society (1999) defines a pulmonary rehabilitation programme as: 'A multidisciplinary program of care for patients with chronic respiratory impairment that is individually tailored and designed to optimize physical and social performance and autonomy.' Although there is no consensus on the best method for running pulmonary rehabilitation programmes, they should consist of exercise and education. The programmes have been shown to reduce hospital bed days (Griffiths et al, 2000).

While there is a lack of consensus on how these programmes should be run (Calverley, 2005), Clark (1996) advocated using a group format with a multidisciplinary healthcare team, to deliver education and exercise sessions lasting at least 2-3 hours, twice a week. In Cornwall nurse-led community pulmonary rehabilitation programmes adhere to principles of national guidelines (BTS, 2001) and are run once a week at each location for eight weeks, followed by a final session in which patients are reassessed and given management plans. .

Quality-of-life questionnaires are used to explore physical improvement but do not explain why patients have improved or the impact programmes have on daily activities (Troosters et al, 2007). In addition, there is a lack of evidence on patients' experiences of taking part.

Aim

This study aimed to explore patients' understanding and expectations before and eight weeks after taking part in a pulmonary rehabilitation programme. A focus group was chosen to collect the data since pulmonary rehabilitation is run as a group. The project was approved by the local research ethics committee and a university research committee.

Literature review

Randomised controlled trials have demonstrated the physical benefits of pulmonary rehabilitation but have not explored the experience of taking part in such a group programme. Some studies used quality-of-life questionnaires to explore the impact of pulmonary rehabilitation. However, Curtis and Patrick (2003) pointed out that qualitative outcomes are not fully explored by using quantitative measures, as they only measure the severity of the condition but lack insight into it. White et al (2006) found that patient knowledge and understanding of COPD may be improved following education.

Qualitative studies using one-to-one interviews have explored the meaning of patients' experiences of living with COPD (Barnett, 2005; Robinson, 2005). Camp et al (2000) proposed that qualitative research methods may be the key to examining issues such as empowerment and confidence-building in pulmonary rehabilitation.

There is no consensus on a universal framework for the most appropriate method of delivering pulmonary rehabilitation programmes. Calverley (2005) suggested effort should be made to understand the key elements that constitute a successful programme.

Method

A respiratory nurse and physiotherapist followed established county-wide criteria adapted from BTS (2001) guidance and selected a convenience sample of 10 patients (four men, six women) to take part in the programme. Five expressed an interest and were contacted by telephone to confirm the time and place of the focus group. Reasons given for not taking part included problems attending the group and lack of interest.

Participants were asked to discuss issues surrounding pulmonary rehabilitation before and after the course, and the data was tape-recorded. Participants signed consent forms at the first focus group.

The researcher asked a semi-structured question followed by other pre-planned questions as the group progressed. The first group session lasted for 45 minutes.

Participants then took part in exercise training and education sessions lasting two-and-a-half hours for eight weeks, and were asked to attend a second focus group on week 9. Due to the death of one of the participants, only four took part in the second focus group, which lasted for 60 minutes. 

A qualitative research approach using a generic research methodology, as described by Caelli et al (2003), was chosen. The audiotapes transcribed verbatim and coded. Data was interpreted using a thematic analysis framework (Pope et al, 2000). Significant themes were explored to generate a deeper understanding of the research topic.

Emerging themes and categories were discussed with the researcher's supervisor. By keeping the process dynamic and open to change, an analytical explanation and deeper understanding of the data emerged. Triangulation was not feasible in this small-scale study. The emergent themes, perhaps not surprisingly, reflect the physical and emotional problems of living with a long-term respiratory disease. Participants are quoted verbatim.

Results

Focus group 1
Stoicism: Despite knowing there is no cure for COPD, participants expressed a sense of acceptance and tolerance in this situation and a feeling that they should make the most of it. They were able to adapt to their physical limitations and were not prepared to 'give in' to simple tasks such as taking washing out of the machine or walking up a flight of stairs. They mostly coped by becoming frustrated or annoyed with themselves until they completed their task:
'I will do it!' This was followed by self-congratulation, allowing them to feel a great sense of achievement.

Surprisingly, a COPD exacerbation leading to a hospital admission and discharge was seen as a positive event, almost as if participants had escaped death. One participant who had been admitted to hospital four times always felt better afterwards, stating: 'When you come out you feel better than when you went in, in some respects.'

Others coped with this situation by laughing at the thought it may be a fatal event.

Participants felt they could control their breathing by overcoming their fear of breathlessness. Some were surprised at how many metres they had achieved on a baseline walk test.

One characteristic of coping with breathlessness was to view it as a challenge and adapt to difficult situations in the best way possible to achieve a reasonable quality of life. Leaning on a supermarket trolley while shopping and asking for help to reach high items enabled them to 'carry on regardless'.

Impact: Most participants accepted smoking as a primary cause of their COPD and highlighted this as an example of how the condition had changed their lives. This was expressed as a sense of bereavement or loss and not – as might be expected – as anger or resentment against cigarettes: 'I was 15 when I started smoking and I gave up 19 months ago and I don't think I will ever smoke again.'

All participants had been advised to stop smoking by a healthcare professional at some stage and most had done so. One had not smoked for 53 years. However, one participant worked as a welder in a shipyard and was not totally convinced that his poor lung condition was due to cigarettes: 'They tell you not to smoke and you have been welding and things like that.' Others agreed that smoking should not be blamed entirely for their COPD.

It was difficult for participants to deal with the loss of being able-bodied and accept that they were now unable to undertake certain tasks as a result of COPD. They viewed the condition as a depressive and restrictive illness which robbed them of simple and enjoyable tasks, such as walking the dog and doing hobbies. Some had adapted to changes in lifestyle, for example by moving to a bungalow to avoid stairs. The ability to keep some normality in life was alluded to.

Fear: It seems that COPD leaves patients vulnerable to events outside their control. Participants highlighted several factors that caused feelings of fear and anxiety. This was expressed as fear for the future, fear for family members and the loss of their former or healthy self. In particular, they were apprehensive about the weather and heat gave them the greatest cause for concern. Only one participant mentioned the winter as being an exceptionally difficult time. Most felt they could cope with winter but not summer. Even the promise of a hot summer filled them with trepidation and caused anxiety about how they would manage: 'It's going to be hotter this summer, I'm dreading it.'

Participants expressed concerns that family members who smoked, would end up in the same predicament. However, they were reluctant to express these fears since they were ex-smokers and felt it was hypocritical to ask their relatives not to smoke.

The progression of COPD ultimately leads to a loss of physical function and increased breathlessness on exertion. All participants felt pulmonary rehabilitation was important in enabling them to manage their condition. They recognised that it was their only hope of coping with the disease. Most were fearful and nervous when they attended for assessment, and some expressed fears for their future if they were not selected to take part in the programme.

COPD is a restrictive condition, making it difficult for patients to socialise. Keeping active and independent was deemed particularly important to participants. Their greatest fear was losing their independence and being unable to drive. The prospect of being housebound or reliant on others was described as 'devastating'.

Focus group 2
Emergent themes from the second focus group reflected the physical, educational and emotional elements of taking part in a pulmonary rehabilitation programme.

Comradeship: As mentioned previously, COPD can be an isolating condition as patients may find it difficult to socialise outside the family circle. They often feel embarrassed or frightened by their breathing problems. Some participants expressed a sense of relief that others were experiencing similar problems.

The pulmonary rehabilitation programme involves taking part in physical exercise specifically intended to induce breathlessness in order to teach coping strategies. This state can be frightening and patients may try to avoid the unpleasant experience of dyspnoea. The support and bonding participants gained from each other during these physical exertions resulted in a 'clique-like' attitude, since it is difficult for healthcare staff to fully appreciate the physical demands pulmonary rehabilitation places on participants. One expressed his exhaustion following the early sessions, and this view was shared by others who understood and sympathised: 'Does it tire you out? It does me that day, the next day I'm alright, I can carry on.' Another said: 'When we first started for two days I did nothing.'

Peer support was evident in helpful suggestions, for example, one participant was angry with himself that he could not stop smoking despite having tried various techniques. The others encouraged him to keep trying by using examples of how they or their friends had stopped: 'I smoked for nearly 50 years… I can't tell you how many times I tried to give up… a doctor talked nicely and made sense and I never looked at it no more.'

Participants saw the group format as an appropriate way to deliver pulmonary rehabilitation. They regarded its physical element as a competition in a positive way, allowing them to 'egg each other on' and encouraging them to achieve their potential. They enjoyed each others' company, described the programme as a 'good laugh' and were disappointed that it had come to an end. It was apparent that they would miss the support and friendship they had forged.

Empowerment: Participants appeared more able to cope or accept they lived with a long-term condition after the programme. All felt its physical element was of huge benefit, enabling them to gain confidence and try things they had not done for some time and perhaps allow them to live more active lives. The feeling that physical exertion was viewed as something only healthy people managed was expressed when one participant stated his delight at being able to tell his daughter he went to the gym once a week: 'She looked at my missus and said "GYM"? She was shocked! Well, I call it the gym!'

Participants considered education to be important, although it was difficult for them to draw out any specific elements. They saw all the advice they had received as relevant and delivered in a way which they could understand and question. Anecdotes and explanations about topics related to COPD appeared to help them to recall important issues, such as how to use a spacer device and its benefits: 'Spacers are useful if you suffer with a sore mouth or anything like that people do… thrush they say, I haven't had it, touch wood.'

However, gaining knowledge also enabled participants to challenge or ignore advice given by healthcare professionals. This was demonstrated when the topic of diuretic medications was raised. Participants considered that giving themselves permission to ignore medical advice when it suited them was a reasonable way of coping with the problem.

On the whole, participants said they had greater control over their lives and better understanding of their condition. Most had found tasks such as bending down would cause breathlessness, which would lead to panic. However, following pulmonary rehabilitation they were less likely to panic, finding the breathing exercises helpful. One summed up the practical impact of pulmonary rehabilitation: 'Oh yes, mentally, I think personally I feel more confident now I can go out and walk around the town more than I did.'

Concept of severity: COPD is regarded as a 'hidden' condition, that is, patients only become breathless on exertion. This causes concern for some who feel they are regarded as not having an illness. Knowing how severe their COPD was compared with others was also important. They stated doctors should be made aware of the severity of their condition and how much pulmonary rehabilitation changed their view of coping with it.

Participants felt others in the group should understand the severity of their COPD and how other physical problems may compound it. They highlighted co-morbidities, such as arthritis and cardiac problems, as important factors in being unable to do certain exercises on the circuit.

The exercise element of pulmonary rehabilitation is not meant to be competitive; however, participants appeared to regard it as a competition. The exercise circuit was separated by the physiotherapist into two lanes, which they named as 'fast' and 'slow'.

Although participants recognised there are different levels of severity of COPD, several expressed surprise at group members who did not appear disabled by their breathlessness. One felt some patients may use COPD as an excuse to avoid physical exertion. The others did not agree with this view and one stated: 'Because of COPD you cannot do the amount of exercise you should.'

Discussion

This small study was undertaken to explore patients' understanding and expectations before entering pulmonary rehabilitation and their experiences of it afterwards. The programme was clearly beneficial for them in a number of ways.

Before pulmonary rehabilitation, the three themes highlighted the importance of living with the physical and emotional aspects of COPD by identifying the subtle aspects of stoicism and the 'will to live'. Participants viewed an exacerbation as a challenge to be taken on and overcome.

Ex-smokers experienced distress and bereavement at having to stop smoking. This may be because cigarette-smoking reduces anxiety, enhances mental concentration and is pleasurable (National Asthma and Respiratory Training Centre, 1999). None blamed smoking entirely for their condition. They seemed surprised that it was highlighted as the main cause of COPD and felt it was unfair of healthcare professionals to single this out, especially as they thought occupational factors may play a major role. The only self-blame they expressed was the inability to act as a role model and to prevent family members from smoking.

Depression and anxiety are recognised complications for some people with COPD but are not always appreciated as major causes for concern. Participants' fear of loss of control filled them with dread.

Using a focus group allowed the camaraderie and peer support generated by the programme to be observed. This bonding appeared vital to participants, as it allowed them to identify ways of coping with a long-term condition and enabled them to overcome difficulties of physical exertion. The programme was described as enjoyable and a 'good laugh', highlighting the important social element.

Participants indicated that the knowledge they gained about both physical and practical management had enabled them to cope with their disease. They found it difficult to distinguish which particular aspect of the programme helped them to manage their condition, and felt the physical aspect had improved their exercise capacity, which in turn increased confidence. However, a relaxed and informal style of delivering education appeared important for participants to learn about COPD. They enjoyed the anecdotes staff used to illustrate educational topics and felt comfortable in questioning them if they failed to understand.

Participants expressed concerns they would be regarded as fraudulent if they did not appear ill, as they were not breathless when sitting. They were keen to justify the physical problems they experienced while taking part in pulmonary rehabilitation for the benefit of others in the group and healthcare professionals. This phenomenon has been noted in patients with chronic bronchitis (Nicolson and Anderson, 2003).

Participants approved of being streamed into different lanes on the exercise circuit, which encouraged them to work to their maximum capacity. This tailoring of exercise did not prevent the group from working together and enjoying jokes.

This study had several limitations. Its small sample size, lack of patients from minority ethnic groups and the fact that it was undertaken at one site with limited time for data collection means it cannot be used to make general assumptions about patients expectations and experiences of pulmonary rehabilitation. In addition it could be argued that those who agreed to take part were exceptionally motivated and could have presented a more positive outlook than others would.

Further research
It would be wise to repeat this research approach at different locations throughout the county to ascertain the reliability of the results.
This research concentrated on participants in the pulmonary rehabilitation programme only and did not consider the role partners play in assisting people with COPD. It would be useful to know if pulmonary rehabilitation offers the same level of support to carers as it does for patients.

Conclusion

This study has added in a small way to the body of knowledge about pulmonary rehabilitation and gives some indicators for managing patients undertaking the programme.

Participants were optimistic that the programme was going to help them overcome the physical barriers they faced in their daily lives.

Pulmonary rehabilitation has an important social aspect, as it allows patients to accept and live with their condition.

Follow-up sessions after such programmes should be offered. Having completed a pulmonary rehabilitation scheme, patients should be capable of and encouraged to establish a patient-led support group.

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