clinical focus

COPD self-management supportive care: chaos and complexity theory Amber Cornforth

Abstract

This paper uses the emergent theories of chaos and complexity to explore the selfmanagement supportive care of chronic obstructive pulmonary disease (COPD) patients within the evolving primary care setting. It discusses the concept of selfmanagement support, the complexity of the primary care context and consultations, smoking cessation, and the impact of acute exacerbations and action planning. The author hopes that this paper will enable the acquisition of new insight and better understanding in this clinical area, as well as support meaningful learning and facilitate more thoughtful, effective and high quality patient-centred care within the context of primary care. Key words: Chaos theory ■ Complexity theory ■ COPD ■ Self-management ■ Primary care

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hronic obstructive pulmonary disease (COPD) is an umbrella term that encapsulates three  interrelated lung conditions—chronic bronchitis, chronic asthma and emphysema—which all result in chronic and progressive airflow obstruction. The Healthcare Commission (2006) estimates that there are 3 million people living with COPD in the UK. It is a complex, systemic disease with a non-linear chronic disease trajectory that is associated with gradual impairment, substantial comorbidity and characterised by day-to-day fluctuations and repeated clinical exacerbations as the disease becomes more advanced (Effing et al, 2007). It can therefore severely affect the quality of life of patients and their carers (Caress et al, 2010). The disease is associated with high use of both primary and secondary care services and puts a massive economic and social burden on the entire NHS (Caress et al, 2010; National Clinical Guideline Centre (NCGC), 2010; Department of Health (DH), 2011; Hurley et al, 2012).

Search strategy

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The electronic databases Cochrane, PubMed, CINAHL and the British Nursing Index Amber Cornforth is Practice Nurse, Claremont Surgery, Scarborough, North Yorkshire and Postgraduate Student, University of Hull, Yorkshire Accepted for publication: September 2013

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were searched with the keywords ‘COPD’, ‘self-management’, ‘self-care’, ‘chaos theory’ and ‘complexity theory’ to source relevant literature published in the past 10  years. The reference lists of the obtained articles were then scanned for further suitable sources of information and several articles were identified in this way.

Chaos and complexity This paper considers the theories of chaos and complexity together, as a lens through which to understand the important multifaceted health and social-care issue of self-management supportive care of COPD patients in primary care. Despite variable opinions on core theoretical ideas, it is widely accepted that the behaviour of individuals and bodily systems, healthcare practice and thinking, can all be viewed as complex, dynamic and individual. They are therefore amenable to be investigated and explained through the principles of chaos and complexity (Holden, 2005; Innes et al, 2005; Mitchell, 2009; Davidson et al, 2011). Furthermore, this approach fits with the philosophy of holistic care (Johns, 2009) and although this is not the place to discuss the theoretical perspectives in any great detail, interested readers are pointed to several illuminating books (Mitchell, 2009; Alexander, 2010; Davidson et al, 2011). Moreover, Alexander (2010) postulates that the keystone of this critical-thinking approach is the concept of the complex adaptive system,

whereby the internal components of the system are not stable and adaptations emerge in ways that can neither be predicted nor controlled, with individual and collective behaviour changes in response (Holden, 2005). Crucially, it is not the individual components of the system that matter, but the ‘interconnectedness’ of components or the collective interactions and patterns formed. Patients, their significant others and health and social-care professionals, can be seen as complex adaptive systems, as they are unique, independent and self-regulating beings. They are also components of, and active participants in, the many different relationships, human actions and interactions within the complex adaptive primary healthcare system (Innes et al, 2005; Mitchell, 2009). The resulting web of interactions involving people with the disease, their significant others, and health and socialcare professionals, is at the heart of the selfmanagement supportive care process.

Self-management support Self-management support has been investigated as a useful strategy to assist patients in taking more responsibility for their disease (Booker, 2005; Barnett, 2007;Walters et al, 2010; Bucknall et al 2012; Hurley et al, 2012) and is a key constituent of national respiratory guidelines (NCGC, 2010; DH, 2011). A variety of selfmanagement strategies—including individual and group structured education programmes, providing printed literature, telemonitoring and telephone coaching—have been explored. These approaches vary widely in structure, content and results, but the primary goals of improving health outcomes in COPD and containing overall healthcare costs tend to be consistent (Effing et al, 2007; Bischoff et al, 2011; Trappenburg et al, 2011; Bucknall et al, 2012; Hurley et al, 2012). Many studies report some benefit and highlight the importance of COPD self-management support from health professionals, despite there being limited knowledge surrounding optimal educational content and the best ways to support selfmanagement (Effing et al, 2007; NCGC, 2010; Hurley et al, 2012).

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Smoking cessation It is widely known that stopping smoking is the only way of slowing the progression of COPD (Caress et al, 2010; NGCG, 2010; Walters et al, 2010) and that those who smoke are likely to suffer more frequent exacerbations (Barnett, 2007). It follows that smoking cessation must be an integral part of patient self-management support (Walters et al, 2012), though smoking cessation is neither simple nor unidirectional (NCGC, 2012; Tønnesen, 2013). To meet organisational business targets and to address nicotine dependence, as directed by the new COPD strategy for England, health professionals in primary care are expected to enquire about the smoking status of COPD patients, their desire to stop, and to give cessation advice or heath education at every opportunity (DH, 2011). In the author’s experience, the process of determining smoking status and giving information and

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advice is not always easy during consultations, nor helpful or conducive for fostering therapeutic relationships. Disruption to the dynamic flow of information between patients and health professionals may result where health professionals have a negative view of COPD patients who continue to smoke and/or become frustrated at their inability to give up smoking. In fact, critical reactions from health professionals can create more tension, chaos and dissatisfaction (Davidson et al, 2011; Baumann and Dang, 2012) by intensifying existing feelings of weakness, guilt and blame surrounding having a smoking-related condition (Booker, 2005). Furthermore, a randomised controlled trial (Wilson et al, 2008) reported that none of their study participants with moderatesevere COPD were able to quit smoking despite intensive therapy over a year-long follow-up period, which could indicate higher nicotine dependence in this group of patients. According to chaos and complexity theories, patients should have the free will to exercise mind and body for, and sometimes against, their own good (Johns, 2009) and it is essential that health professionals show respect for patients’ actions and opinions, even if they differ from what they believe to be in the patients’ best interests (Booker, 2005).

Acute exacerbations COPD patients can remain in a relatively stable condition for a period of time, interrupted by acute periods of worsening symptoms or disequilibrium, which vary in severity and frequency during the course of the disease and between patients (Trappenburg et al, 2011). Chaos and complexity theory posits that small changes in systemic input can produce massive changes elsewhere in a system (Holden, 2005; Mitchell, 2009). A COPD exacerbation has the potential to cause a chaotic ‘butterfly effect’, whereby a single infective change, such as exposure to poor air quality or some other trigger (Barnett, 2007; NCGC, 2010), can rapidly result in dramatic changes in the individual, in the wider healthcare system and in society in general (Walters et al, 2010). Acute COPD exacerbations are usually characterised by worsening breathlessness, coughing, increasing amounts of sputum or a change in sputum colour, and reduced ability to carry out normal activities. COPD patients can be particularly unstable as the disease becomes more severe because they are at increased risk of exacerbations that can have considerable impact on their life and wellbeing. They may become ill for weeks and months,

and may never regain their previous levels of lung function (Barnett, 2007; NCGC, 2010). Not only are there unpredictable outcomes for the patient’s health (exacerbations can be crucial negative turning points in the disease trajectory), but during these times the healthcare system as a whole is affected by the influx of COPD patients, especially during the winter months, placing an extra burden on primary care resources and worsening bed shortages within hospitals (Donaldson and Wedzicha, 2006). From a health professional’s perspective, a fundamental part of COPD self-management is that patients need to be able to recognise and take appropriate action when there is a deterioration in their condition, and know when and how to seek help from professionals (Barnett, 2007; DH, 2010; Trappenburg et al, 2011; Baumann and Dang, 2012; Hurley et al, 2012). The process of enacting an action plan is critically dependent on individuals recognising the features of an exacerbation and engaging in risk-management decisionmaking when opting for emergency therapy. Importantly, however, patients’ decisions on acute exacerbations are not always consistent with professional opinions of self-management (Costi et al, 2006). Consequently, some patients may need enhanced health professional help and support in recognising changes in their condition over time. Moreover, Morgan (2011) argues that the potential for contact with a knowledgeable health professional will bolster the patient’s self-confidence to self-regulate and treat an exacerbation. It is therefore necessary that patients are given at least one named contact in primary care to telephone when they feel in need of extra support. Out of the resulting chaotic disorder during exacerbations, there is potential for an emergence of or evolution in learning, improved self-organisation and more ordered behaviour, enabling individuals to adapt successfully (Holden, 2005; Mitchell, 2009; Alexander, 2010). As a result, it may be that individuals are more receptive to externally available self-management communication after an exacerbation. At this time, clinicians may be better placed to assist patients in making creative adaptations and achieving higher levels of functioning and improved order in the future (Costi et al, 2006; Warwick et al, 2010). Patient management plans can then be adjusted according to patient experience and feedback. This can be done in general practice by reviewing the patient within a couple of days of taking exacerbation steroids and/or antibiotics (Costi et al, 2006).

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Self-management support in primary care usually amalgamates guidance on usual care and information, and advice regarding emergency therapy and when to seek urgent medical help (Morgan, 2011; Roberts and Partridge, 2011). The resultant plans should ideally be personalised, with a flexible and adaptive design that encapsulates a more holistic picture of patients’ needs and not just physical manifestations of the disease (Barnett, 2007; Roberts and Partridge, 2011). Yet there is currently a paucity of research on the health behaviour that COPD sufferers themselves choose to address. More research is needed in this area (Walters et al, 2012). The most important principle for effective care and promotion of self-management is the ongoing collaboration, education and patient-centred support through a partnership with health professionals who have specialist COPD knowledge and training. It is therefore important that clinicians have the tools and skills to activate this approach in practice (Booker, 2005; Barnett, 2007; Jansdottir, 2008; NCGC, 2010; Caress et al, 2010; Morgan, 2011). Riegel et al (2012) advise that the goal for clinicians is to work collaboratively with COPD patients to negotiate as much healthy behaviour as can be tolerated by the patient. Within primary care, this includes educating patients on the nature of COPD and how to manage it; emotional support and encouragement to adopt and maintain healthy lifestyle changes such as more exercise; correct inhaler technique; healthier eating; and, importantly, smoking cessation (Barnett, 2007; Battersby et al, 2010; NCGC, 2010).

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Primary care consultations Health professionals need to work within the unpredictable primary care context; process lots of information in a short time; analyse and evaluate possible routes of action; and determine possible solutions when deciding how best to support COPD patients (NCGC, 2010). From a chaos and complexity theory viewpoint, the COPD chronic disease management clinical consultation is the interface, or place, where patients, their significant others and health professionals meet. When done well, it is also the place where therapeutic relationships are forged, information is exchanged and COPD patients’ needs addressed (Booker, 2005). Different approaches work for different people. Innes et al (2005) advise that each consultation is different, with diverse patterns of interactions and influences, at different times, even between the same parties. Factors such as mood, tiredness and distraction are some of the many influences that may affect a consultation and the way participants communicate with one another (Booker, 2005). The same is true of the physical context, such as the environment of the waiting and consulting rooms (Innes et al, 2005), and interruptions such as telephone calls and knocks on the door. Willingness to participate, personalities, motivation, education and experience can also affect responses. Also, as most practices are now fully computerised, clinicians must be aware that computers can compete for eye-contact during consultations and may result in negative non-verbal communication (Innes et al, 2005). As time is of the essence during COPD clinics, there is a real danger that practice nurses are encouraged to think and work in a routine ‘linear’ way (in opposition to the critical-thinking perspective), clicking and ticking computer template boxes to capture predetermined and generic information, which can result in fragmented nurse-patient interactions (Johns, 2009). But individuals do not fit into allotted boxes of time and patients should be fully involved in selfmanagement goal setting. Owing to factors such as lack of time, patients should not just be given printed health education literature and an action plan, and be expected to self-manage their condition—this is unlikely to improve outcomes (Morgan, 2011). It is important for clinicians to acknowledge their own knowledge, skills and time-limitations, and to recognise which patients need more input, with referral onto specialist colleagues as required. Particularly as the disease becomes more severe and exacerbations more frequent, there

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is a danger that COPD patients can relinquish control and feel helpless. It is the responsibility of health professionals to assist them in being ‘free agents’ and to encourage expression of their personal concerns and experiences of living with COPD. As each person is unique, their self-care needs will need to be determined on an individual basis. The nursepatient relationship should be a therapeutic one where patients are awarded time, respect and dignity to voice their individual concerns within balanced consultations (Johns, 2009).

Conclusion The critical thinking perspective of chaos and complexity has been applied throughout this paper. Primary care has been described as a complex adaptive system, with multiple interacting agents and influences, where emergence of new patterns of behaviour and self-organisation is possible. Contextual factors—especially the behaviour of individuals and the richness of the relationships between them—have been shown to be important when providing holistic self-management supportive care. Health professionals need to be aware of the many diverse and unpredictable complexities of COPD, and of the many internal and external factors that may affect a COPD patient’s ability to regulate their own health and wellbeing. As the attitude, behaviour and skills of health professionals can have a significant effect on the extent to which COPD patients feel engaged and supported in their selfmanagement, there is a need to be aware of each individual’s assumptions, alternative views and limitations. Adopting the chaos and complexity perspective could facilitate a fuller understanding of the challenges faced by patients and their significant others, and encourage clinicians to make time to learn about patients’ circumstances, experiences and interpretations in order to encourage unity in goal setting. Engaging in these wider ways of

knowing and working will enable different perspectives and approaches to be integrated into COPD self-management supportive care delivery, which should improve the overall BJN COPD patient experience. Conflict of interest: none Alexander C (2010) Complexity and Medicine – The Elephant in the Waiting Room. Nottingham University Press Barnett M (2007) Management of COPD exacerbations in primary care. Nurse Prescribing 5(3): 103–7 Battersby M, Davis C, Wagner E (2010) Twelve evidencebased principles for implementing self-management support in primary care. Jt Comm J Qual Patient Saf 36(12): 561–70 Baumann L and Dang T (2012) Helping patients with chronic conditions overcome barriers to self-care. Nurse Pract 37(3): 32–8 Booker R (2005) Effective communication with the patient. Eur Respiratory Rev 14(96): 93–6 Bucknall C, Miller G, Lloyd S, Cleland J, McCluskey S, Cotton M, Stevenson R, Cotton P, McConnachie A (2012) Glasgow supported self-management trial (GsuST) for patients with moderate to severe COPD: randomised controlled trial. BMJ 344(7849): 1–13 Caress A, Luker K, Chalmers K (2010) Promoting the health of people with chronic obstructive pulmonary disease: patients’ and carers’ views. J Clin Nurs 19(3–4): 564–73 Costi S, Brooks D, Goldstein R (2006) Perspectives that influence action plans for chronic obstructive pulmonary disease. Can Respir J 13(7): 362–8 Davidson A, Ray M, Turkel M (2011) Nursing, Caring and Complexity Science. Springer Publishing Company, New York Department of Health (DH) (2011) An outcomes strategy for people with chronic obstructive pulmonary disease (COPD) and asthma in England. http://www. dh.gov.uk/en/Publicationsandstatistics/Publications/ PublicationsPolicyAndGuidance/DH_127974 (accessed 9 October 2013) Donaldson G and Wedzicha J (2006) COPD exacerbations – 1: Edidemiology. Thorax 61(2): 164–8 Effing T, Monninkhof EEM, van der Valk PP, Zielhuis GGA, Walters EH, van der Palen JJ, Zwerink M (2007) Self-management education for patients with chronic obstructive pulmonary disease. Cochrane Database Syst Rev Issue 4. http://onlinelibrary.wiley.com/ doi/10.1002/14651858.CD002990.pub2/full Healthcare Commission (2006) Clearing the air: a national study of chronic obstructive pulmonary disease. Healthcare Commission, London Holden L (2005) Complex adaptive systems: concept analysis. J Adv Nurs 52(6): 651–7 Hurley J, Gerkin R, Fahy B, Robbins R (2012) Metaanalysis of self-management education for patients with chronic obstructive pulmonary disease. Southwest J Pulm Crit Care 4: 194–202 Innes A, Campion P, Griffiths F (2005) Complex consultations and the ‘edge of chaos’. Br J Gen Pract 55(510): 47–52

Key points n COPD affects the health and wellbeing of sufferers and their significant others, the NHS and society as a whole n COPD is a costly disease and current guidance directs that patients accept some responsibility for their self-care, embracing behaviour that promotes effective management and care n COPD is a complex condition and patients need to be managed, treated and cared for in an individualised way, calling for professional expertise and enhanced critical thinking n A critical-thinking perspective, such as chaos and complexity, can enhance the ways that primary-care health professionals approach COPD self-management supportive care

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Johns C (2009) Becoming a Reflective Practitioner. WileyBlackwell, Chichester Jonsdottir H (2008) Nursing care in the chronic phase of COPD: a call for innovative disciplinary research. J Clin Nurs 17(7B): 272–90 Mitchell M (2009) Complexity – A Guided Tour. Oxford University Press, New York Morgan M (2011) Action plans for COPD selfmanagement. Integrated care is more than the sum of its parts. Thorax 66(11): 935–6 National Clinical Guideline Centre (NCGC) (2010) Chronic obstructive pulmonary disease: management of chronic obstructive pulmonary disease in adults in primary and secondary care. http://www.nice.org.uk/ nicemedia/live/13029/49425/49425.pdf (accessed 9 October 2013) NCGC (2012) Tobacco – harm-reduction: draft guidance. http://tinyurl.com/na6k5r9 (accessed 9 October 2013)

Riegel B, Jaarsma T, Stromberg A (2012) A middle range theory of self-care of chronic illness. ANS Adv Nurs Sci 35(3): 194–204 Roberts N, Partridge M (2011) Evaluation of a paper and electronic pictorial COPD action plan. Chron Respir Dis 8(1): 31–40 Tønnesen P (2013) Smoking cessation and COPD. Eur Respir Rev 22(127): 37–43 Trappenburg J, Monninkhof E, Bourbeau J, Troosters T, Schrijvers A, Verheij T, Lammers J (2011) Effect of an action plan with ongoing support by a case manager on exacerbation-related outcome in patients with COPD: a multicentre randomised controlled trial. Thorax 66(11): 977–84 Walters J, Turnock A, Walters E, Wood-Baker R (2010) Action plans with limited patient education only for exacerbations of chronic obstructive pulmonary disease. Cochrane Database Syst Rev Issue 5. http://onlinelibrary.

wiley.com/doi/10.1002/14651858.CD005074.pub3/ full (accessed 10 October 2013) Walters J, Cameron-Tucker H, Coutney-Pratt H, Nelson M, Robinson A, Scott J, Turner P, Walters E, WoodBaker R (2012) Supporting health behaviour change in chronic obstructive pulmonary disease with telephone health-mentoring: insights from a qualitative study. BMC Family Pract 13(55): 1–7 Warwick M, Gallagher R, Chenoweth L, Stein-Parbury J (2010) Self-management and symptom monitoring among older adults with chronic obstructive pulmonary disease. J Adv Nurs 66(4): 784–93 Wilson J, Fitzsimons D, Bradbury I, Stuart Elborn J (2008) Does additional support by nurses enhance the effect of a brief smoking cessation intervention in people with moderate to severe chronic obstructive pulmonary disease? A randomised controlled trial. Int J Nurs Stud 45(4): 508–17

Fundamental Aspects of Nursing Adults with Respiratory Disorders About the book

Jane Scullion

Fundamental Aspects of Nursing Adults

Respiratory patients prese nt in all specialties, and all healthcare professionals will at some time look after patients with respiratory conditions either as an acute event or as the consequence of chronic disease. This book explores the more common respirator y disorders that are seen both in the hosp ital sector and in primary care. It provides the reader with essential inform ation about the diseases and conditions and gives details of care mana gement and treatment optio ns. Each chapter is useful as a stand-alone text.

n Timely text exploring the more common respiratory disorders seen both in the hospital and in the community This is an extre

mely timely text as there is a growing burden on healt care services, the economy, h and on individual patients and their carers as a result of respiratory disor ders. In the United Kingdom one in five deaths occurs as the resul t of respiratory disease, with more deaths occurring from this group of disease than from coron ary heart disease or non-respiratory cancers. It is estimated that around one in eight admissions to the acute secto r are as a consequence of respiratory disorders as too are many consultations and house-cal ls in primary care.

n Provides essential information about the diseases and conditions

n Gives details of care management and treatment options. Each chapter can be used Jane E Scullion is a Respirator y Nurse Consultant at Glenf ield Hospital, University Hospitals of Lece as a standalone ister NHS Trusttext . About the editor

n Contents include: Anatomy and physiology of the respiratory system, Asthma, Bronchiectasis, Cystic fibrosis: an overview, Chronic obstructive pulmonary disease, Lung cancer, Diffuse parenchymal lung disease, Mesothelioma, Oxygen therapy, Pulmonary embolism, Pulmonary function tests, Pulmonary rehabilitation, Respiratory ISBN 1-856 1-5 assessment, Respiratory failure and42-31 noninvasive positive pressure ventilation, Smoking cessation and Tuberculosis 9 781856 423113

Adult Nursing Procedures Caring for the Acutely Ill Adult Community Nursing Complementary Therapies for Health Care Profession als Gynaecology Nursing Legal, Ethical and Profession al Issues in Nursing Men’s Health Tissue Viability Nursing Palliative Care Nursing Women’s Health Series Editor: John Fowler

Nursing Adults with Respiratory Disorders edited by Jane E Scullion

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COPD self-management supportive care: chaos and complexity theory.

This paper uses the emergent theories of chaos and complexity to explore the self-management supportive care of chronic obstructive pulmonary disease ...
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