SINGING FOR COPD – TAKE A BREATH

Report for SPNA Education Grant

September 2014

Committee Members:

Pauline Waugh GPN Edinburgh – Project Lead

Sarah Head GPN Edinburgh

Anne Ritchie GPN and PM Edinburgh

Summary & keywords

Chronic Obstructive Pulmonary Disease (COPD) is a collective term for lung diseases including chronic bronchitis and emphysema, which lead to irreversible airflow obstruction. This narrowing of the airways leads to the debilitating and sometimes frightening symptom of breathlessness. COPD has a significant impact on peoples’ quality of life physically, emotionally, socially and psychologically.

The Sydney De Haan Research Centre for Arts and Health in Canterbury has researched the value of music and singing in the promotion of health and well-being. In 2011 they carried out a ‘Singing for breathing’ pilot study in Folkestone to assess the effects for patients with COPD on measures of breathing, quality of life, mental and physical well being. The results were very encouraging with participants reporting social, psychological and physical health benefits. Measures of lung function showed improvement over the 10 month course too. Research from around the world supports these findings showing that singing enhances physical health through improvements to breathing capacity, muscle tension and posture resulting in a reduction in respiratory symptoms.

This evidence was used to develop our protocol for a project to be run in central Edinburgh examining whether setting up singing groups for patients with chronic respiratory disease within the Edinburgh Community Health Partnership (CHP) districts would be of benefit to patients both physically and emotionally

  1. Background

Many patients with COPD have attended Pulmonary Rehabilitation, which is a multi-disciplinary programme for patients with chronic lung disease that aims to improve exercise tolerance and activities of daily living. Patients can benefit greatly from this 6-week course but once they are discharged from the service it can be difficult to maintain the benefits to their health in the long term. We felt that community singing groups could fill this gap in service provision, offering patients ongoing aerobic exercise through singing, emotional benefits through continued socialisation and maintenance of improvements in breathing and breath control. Based on the success of this project we plan to roll out community singing groups across Edinburgh so that pulmonary rehabilitation services can refer their patients directly to a singing group on discharge from their service.

  1. Aim & Objectives

The aim of the project was to assess the feasibility of setting up and running a community based singing group for people with COPD in the Stockbridge area of Edinburgh.

The objectives were to:

  • Recruit people with COPD from Stockbridge Health Centre to attend a bi-monthly community singing group
  • Provide a relaxed, risk free singing experience for all those who attend
  • Ensure the project was cost effective and delivered within the set budget
  • Measure the participants’ health related quality of life improvements throughout the project using a validated questionnaire and voluntary interviews
  • Disseminate project results to all interested parties
  1. Design and Methods

The original plan for this project was conceived in April 2013 but the first session did not take place until the 7th of October 2013. Ethics approval was the first requirement as we were studying NHS patients with the potential for a change in their health. While awaiting approval, which took 4 months, we were able to secure funding from QNIS and employ a professional voice coach (Kathy Stewart) to lead our sessions. Kathy is a professional singer and has worked with similar groups using music and singing to improve quality of life and socialisation - for example with patients with dementia and their carers. Anne Ritchie facilitates the diploma level COPD Management Course, in collaboration with NHS Lothian and QueenMargaretUniversity, and she taught Kathy the relevant aspects of COPD and its impact on those who live with it. Kathy then used this knowledge to devise appropriate breathing exercises and to tailor the type of music and songs to our participant’s abilities. The breathing exercises have emerged as a significant theme in our qualitative analysis (more information on this will follow).

All 3 nurses had to negotiate with their GP employers for time out of practice to attend the bimonthly choir sessions and some of our funding was used for this. At any one time there is at least one practice nurse at each session, which we felt was important not least to be available if any participant became unwell but also to obtain first hand feedback, assist with the actual singing and to support the participants who may be nervous or anxious about attending the class.

The LifeCare Centre in Cheyne Street, Stockbridge generously provide a rehearsal room free of charge and we have tried to repay them in some small way by running a 5K charity race (Pauline Waugh and Sarah Head) and obtaining sponsor money from our members, friends and family which has amounted to £440 so far.

We recruited patients with COPD through their yearly review from The Green Practice, Stockbridge Health Centre and 10 signed up to take part in the research project. Unfortunately 2 had to pull out due to ill health, not related to their COPD, but happily both participants have since returned to the group. Our analysis is therefore based on only 8 participants but we now have 16 choir members some of whom are patients of the Green Practice. A further five are from other surgeries in Edinburgh and have been recruited through word of mouth by our existing members. We have not deliberately recruited any more ourselves, as our level of funding at the moment would not permit that. We have informed the five patients’ own GPs and keep them advised of progress.

The participants named themselves The Cheyne Gang in the 2nd week. The name reflects their shared experience of both COPD and singing and our rehearsal venue in Cheyne Street. We had t-shirts made with a logo designed by one of the members and these were worn at their first performance as a choir at a charity tea party on 29th March 2014. The Cheyne Gang helped to raise over £1500 for The British Lung Foundation (BLF), the Chairman of which, James Cant, came to receive the cheque. He was so impressed with the project and group members that he is using us as a example of successful innovation in COPD self management in a proposal for a similar project that the BLF are hoping to roll out in relation to singing and walking for COPD health. The Cheyne Gang also received a write up in the Edinburgh Evening News for this event.

At each session the nurse attending collates voluntary feedback but it was felt that this was not a robust enough system to gather thematic data to analyse so after discussion with the committee and Angie Henney we agreed to carry out qualitative interviews and, to this end, we employed to Loretta Dunn, an independent nurse practitioner, to complete these with the 8 patients who had consented at the beginning. We have also administered the AQ20 Quality of Life Questionnaire for COPD, once at the start of the project and again 10 months on. The results are discussed later.

Throughout the project we have strived to forge links with pulmonary rehabilitation services, as this was part of our original aim to link up with them with a view to forming a referral system. We are in touch with services in Leith and at the RIE but yet to have found time to meet altogether to forward plan. One of the service’s occupational therapists has visited our project and a physiotherapist is due to visit in September. We have linked up with Lothian Respiratory Managed Clinical Network to help facilitate this part of the project and Pauline Waugh presented our interim results at the Respiratory MCN Learning Forum on 5th September this year.

Advertising our project has been assisted by the Scottish Practice Nurse Association (SPNA) who kindly gave us a 10 minute opening slot at their yearly conference in May this year where we managed to get the audience singing ‘Bye Bye Blackbird’. QNIS and indeed SPNA retweet information Pauline Waugh puts on Twitter (with the participants signed consent), which helps our project reach a wider audience.

Pauline Waugh, as a representative of The Cheyne Gang, came 2nd in The Pride of Edinburgh Awards, Health Care section, this year and through this we have linked up with the winner who created KiccActive Lothian – exercise classes for patients with long term conditions. It is hoped that we can create a mutual referral system between our 2 services.

The Cheyne Gang have made 2 professional videos and, with their consent, we will use them in presentations and to showcase our project. One features them singing five of their favourite songs and the other shows examples of the breathing exercises utilised at each session and practised at home by all our participants.

Our project would not have been possible without the funding and support from QNIS but in order to capitalise on our findings, and to achieve one of our objectives of rolling out singing groups across the city, we will need more funding. The committee has secured some money from the patient involvement group that we will use to continue running and expanding The Cheyne Gang, but substantially more is needed to set up more choirs and we already have another potential voice coach waiting in the wings. Our members have ideas for fundraising, have already started a book sale in the health centre and are willing to pay towards attending the choir sessions. We will use the educational grant SPNA have kindly provided to set up an evening meeting where we will present our results and showcase ‘The Cheyne Gang’ to an invited audience of medical staff including local GPs, Practice Nurses, Respiratory Consultants, Community Respiratory services including pulmonary rehabilitation, interested parties and potential funders plus those who have already supported us.

  1. Ethical Considerations

WoSRES West of Scotland Research Ethics Service

REC reference: 13/WS/0224

IRAS project ID: 133613

Singing for COPD - Take a Breath. Investigating the benefits of singing on the physical and emotional health of people with Chronic Obstructive Pulmonary Disease in the Edinburgh Community Health Partnerships.

  1. Results and interpretation of findings

We obtained both quantitative and qualitative data to analyse. Qualitative data was obtained by administering the AQ20 Quality of Life questionnaire for COPD patients at the start and then again at the end of the 10 month project period. This is a shortened version of the validated St George’s Respiratory Questionnaire (SGRQ), which has been used in similar larger studies.

The questionnaire measures and quantifies disturbances in the health related quality of life of patients with COPD. Responses to each item take the form ‘yes’, ‘no’ or ‘not applicable’. Positive scores only are scored as a ‘1’ and then summed to provide a score out of 20. A high score indicates a poor quality of life. The 2 completed questionnaires were compared to see if there is any difference in the scores from the start of the project to the end. A reduction in the 2nd score indicates an improvement in the patient’s quality of life over the course of the project. A paired t-test was used to analyse these scores in order to determine if any improvement has been statistically significant. This test is appropriate here as the number of participants in the study was small (only 8) and we were comparing scores before and after an intervention.

Paired t-test results – two tailed P value equals 0.7594 which was not statistically significant but this was thought to be a function of the size of the group (n=8).

Closer inspection of the actual questionnaires showed that 5 out of 8 had an improvement in their score, 1 stayed the same and 2 were worse. The 2 patients who scores were worse had in fact developed new medical problems affecting their quality of life – one gentleman was undergoing radiotherapy, which had caused deterioration in his COPD, which then resolved once his course of treatment finished, and one lady had developed congestive cardiac failure, which resulted in worsening dyspnoea, not attributed to her COPD.

Qualitative data was collated using questionnaires, which were administered at home, and an interview was carried out by an Independent Nurse Practitioner. These were transcribed and subjected to thematic analysis.

The themes that emerged are as follows:

  • Sleep – “I’m no longer afraid to go to sleep”, “best sleep I’ve had in years”, “do my breathing exercises before bed and sleep like a log”
  • Companionship – “all in the same boat”, “a wee team”, “made new, good friends”, “shared condition and shared experience”
  • Mood/anxiety improvement – “get a real buzz”, “everyone is smiling’, “my husband has noticed I’m on a high when I come home from choir”, “have a different perspective of COPD now, better frame of mind”, “feel less stressed and anxious”
  • Physical health – “breathing exercises have really helped me relax”, “I’m not using my reliever nearly as often now’, “normally I’d be up at the health centre 3 or 4 times in the winter, I’ve not been once since starting the choir”

The overall feedback was that this had been a very positive experience and exceeded many of the groups’ expectations. The breathing exercises at the start of each session and the ‘warm down’ exercises at the end are now being practiced regularly by all our members and again their feedback has shown improvements in sleep duration and quality and a feeling of being able to take control of their breathlessness and not let it frighten them.

Our participants have told us many stories in their interviews but a couple that stand out are John (real name with his consent) who had been a cabaret singer his whole life but hadn’t sung or played his guitar for several years. He stated that attending the group had rekindled his love of music and he’s now playing his guitar at each session and has been teaching ‘The Cheyne Gang’ new song arrangements. Also Bob (real name with his consent) who is a very quiet, private gentleman who lost his wife a few years ago. He has loved this experience, it has brought him out of his shell and it has given him the confidence to join another choir within Edinburgh.

The 8 members who originally consented to take part in the research project and indeed the 9 members who have joined since then have all expressed a wish to continue coming to the sessions and have reported their positive experiences to their GPs, Practice Nurses, Respiratory Consultants and Pulmonary Rehabilitation Facilitators.

  1. Discussion

The positive responses we have had from both our participants and all the visitors who have come along to experience the sessions including occupational therapists, respiratory physiotherapists, researchers (from Sydney de Haan Centre), other choir leaders and representatives from respiratory charity groups has proved to us that this project has been worthwhile. This is the first piece of research that the committee members have undertaken and it has been both challenging and rewarding from beginning to end. We have achieved all our objectives and learned valuable lessons along the way including:

  • How to apply for and achieve ethics approval
  • How to apply for and attain funding
  • How to manage a budget
  • How to recruit and retain staff
  • How to carry out and analyse both qualitative and quantitative data collection

These achievements have lead to the committee attaining more funding from 2 other sources; establishing links with other projects such as KiccActive Lothian; creating their own business bank account and being invited to showcase the project at various large conferences in Scotland as well as receiving ‘write ups’ in both local newspapers and NHS publications.

  1. Conclusion

The project aim was to assess the feasibility of setting up and running a community singing group for people with COPD within in the Stockbridge area of Edinburgh and we have achieved this over the 10 month project period. The feedback from our participants, visitors and our research data has added to the knowledge base in the following ways:

  • Sharing the experience of singing in a group with people who have the same health issues as yourself leads to the development of new friendships; a supportive environment and reduced social isolation
  • Attending a group such as ours has lead to other improvements we hadn’t anticipated such as the support they have given each other for smoking cessation; anxiety management and social support with family issues. The committee had decided early in the planning stages that we would not try to influence our participants in any other aspect of COPD management such as smoking cessation so these issues of taking control of their own health, self managing their condition and supporting their fellow participants have all been generating by the group for the group.
  • Our results as discussed above reflect what has already been discovered about the effects of singing for breathing – promotes wellbeing and social inclusion; reduces stress and improves mood and improves breath control.
  1. Recommendations

Singing is a low cost, enjoyable way to improve the health and wellbeing of patients with long term respiratory conditions. Even if nurses and doctors are not in a position to either set up or offer a group such as ours they should consider signposting patients to local choirs. There are over 25,000 choirs in the UK.