ENTRAR            

CONSENSUS

Commentary on long term condition self management*

Anne Rogers (Reply)
Professor of the Sociology of Health Care. National Primary Care Research and Development Centre. University of Manchester, UK

Manuscript recieved by 23.12.2007
Manuscript accepted by 27.8.2008

Index de Enfermería [Index Enferm] 2009; 18(4): 253-257
*Contents of the Round Table developed in the International Simposium on Comunitary Nursing Research, moderated by Prof. Rosamund Bryar. PhD. City University. London, UK. Granada, Spain, Andalusian School of Public Health, October 4^th and 5^th, 2007

How to cite this document

    Dr José Miguel Morales makes some excellent observations about the current burden of long term conditions and the apparent lack of planning and caring services fit for the purpose of meeting the challenge. He points to the urgent need to pay attention to models and research which will help with the implementation of care and services to deal with the challenge of long term conditions in the 21^st Century.

What do we know, and what we need to take account of

    Dr Morales points to evidence of a massive growth in the burden of chronic illness. It is clear that to a great extent that an ageing population poses challenges to those living into very old age, and for those planning for and providing services. The pressures of an ageing population seem on the face of things to be incontrovertible and he points to some convincing statistics to illustrate the growth in population level long term conditions. This phenomena has been referred to as an epidemiological transition -which refers to a change in the pattern of disease in a country away from infectious diseases towards degenerative/chronic diseases. Dr Morales points also to the lack of a transition in care to match or meet the challenge posed by the epidemiological transition. But we must be slightly wary of allowing the 'facts' to speak for themselves when often they do not. A great many facts and figures are deployed, often without question, in support of the growing burden of chronic ill health and the burden in places on our systems of health care.
    I suggest we still need to ask whether we have got our epidemiological assumptions right. We should be wary of catastrophising the way in which we view the economic burden of chronic illness and the burden of chronic illness needs to be put into perspective.^1,2 To take two examples of the need to qualify our generalisations. The 'fact' that some 40-45 per cent of older people live with 'long standing illness' is derived from self reported questionnaires, but is silent on the question of severity. Questions in household surveys may either underestimate or overestimate levels of disability because there are several ways in which questions about health can be asked. In the UK at the national census conducted every 10 years people are asked to rate their own health. In 2001 76 percent of those aged 75 and over, living in their own homes, rated their health as either 'good' or 'fairly good', this represents a more positive set of figures in comparison to those on long standing illness.² We should I suggest factor in this apparent optimism. These differing facts -the prevalence and incidence of long term conditions and the subjective evaluation of health in the population- points to the need to see facts and figures in the context of a range of knowledge claims about the way in which we view our own health and illness.
    Similarly, we should be careful about the assumptions we make concerning the link between chronic conditions and demand and use of services. We need to refer to a whole array of data. For example, what proportion of health expenditure among older people occurs in the last few years or months of life? It may be quite misleading to cite figures for whole sections of the population (e.g. those aged 75 and over) if this is taken to mean that demand (eg admission to hospital) is common and frequent across the group in question when it is not. It may be relevant to the very elderly but not to those between 75 and 80.²
    Similarly I think we need to critically scrutinise other assumptions about the current provision of care and support for those with long term conditions. For example the erosion of informal networks providing support can't be taken as a given. The sociological literature points to the myth in the past of the ideal type caring and extended family.³ Equally in the contemporary era the role of friendship and types of social networks providing support to those with chronic conditions are important to investigate. They are likely to be complex -we know for example that the strength of 'weak ties' are important for accessing social opportunities in education and so those diffuse networks and combined lay and professional knowledge in the places where people live or accessed via the World Wide web. Modes of communication like the Internet may provide systems of support that are different but nonetheless of equal or more value than the bonding ties of intimate family members who are care givers.
    In the plea made by Dr Morales for different research methods the need to understand the contextual nuances of the caring relationships and resources associated with long term condition management and we do need the mixed and in-depth methodologies associated with qualitative research (e.g. ethnographies) as well as randomised controlled trials. One thing that is required is the need for a fine grained analysis of the social networks and support function of friendship and significant others in the provision of informal care of those with a chronic condition. We need to understand how social networks operate rather than assume they are in decline. We know that in chronic illness people rely in multiple ways for support from different family members and friendship networks and this may vary according to cultural and ethnic dimensions. Currently this remains an epidemiological black box we don't know what support is provided informally and in what context and we need to be able to map these more accurately in order to know how primary care and secondary care services should respond.
    However we could in informing our future research endeavours turn to the existing research from within the sociology of chronic illness to reveal aspects of the complexities of living life with a chronic condition which needs to form the bases of how professionals and services engage with and respond to those suffering from a chronic condition. We know that prior to being offered self -management training most people undertake self care for themselves but this is likely to vary according to a range of influences.⁴ The viability of understanding illness experience and management involves a recursive relationship in which service contact reinforces or changes illness identities and illness-related activities.⁵ Being diagnosed with a chronic illness involves disruption to the normal life course changes to self-perception, adaptation to the social world, the re-definition of people's competence as social actors and the protection of self-identity from the threat of stigma. The parameters of change from this perspective can be viewed as a search for meaning and legitimacy following the onset or labelling of a chronic condition and attempts made to negotiate a new personal and social equilibrium. An essential part of this process necessarily draws upon the various coping mechanisms, strategies and styles of adjustment which individuals develop over time.⁶
    From the vantage point of responding to the disruption of chronic illness, 'coping' refers to a sense of coherence which individuals are able to maintain in the face of their condition (for example, a frequently identified response to chronic illness is the way in which people strive to preserve a semblance of 'normality' to the outside world). Self-management is represented by the mobilization of resources and the maintenance of normal activities and relationships (family, friends and occupations) in the face of an altered situation. The notion of 'strategy' within the sociological literature captures the practical steps taken in order to mobilize resources and minimize problems in everyday life and 'style', has been used to denote some of the symbolic ways in which people respond to, and present, their illness, both to themselves and others.⁷ The impact of illness on the self has been conceptualized as a biographical disruption, and biographical work in the form of construction and reconstruction persists as part of the continuation of illness. A number of studies have focused on identity work, for example in viewing illness as a vehicle for personal transformation through self-change narratives. Clinical settings and the use of technologies in everyday routines for managing chronic illness can also be viewed as arenas in which problems about the management of illness are constituted and alternative approaches and solutions are pursued and reconfigured between professionals and their patients .The notion of 'turning points' (moments of a radical change in the expected course of a person's career) which people can reach by different routes may signify changes in personal management. A turning point can, for example, constitute a moment when people no longer agree with an approach adopted by the health care system, or a re-appraisal of the meaning of past experiences which enables new insights and permits the taking of an active standpoint. It has been suggested that turning points may occur for people with long term conditions such as chronic back pain after hope has been abandoned of finding understanding and treatment within mainstream health services and disappointments have led to a 'spoiled identity'. This latter observation points to the significance of viewing self-management as a continuum rather than separated out from people's contact with health services.^4-9
    The role played by service contact has at times been considered as something separated off from people's own efforts to manage illness.⁵ For example, self-management has been viewed as purposive action which stops at the outset of the consultation in which 'proper' medicine takes over or something which is marginalized in the consultation in favour of medical instruction. This picture of a 'failure' of medicine to engage with the life worlds of patients has encouraged a view in which living with chronic illness is conceptualized as a reactive flight into normalization in which over time the patient becomes 'free of medicine'. However, others have viewed clinical settings as more connected to the accessing of resources to self-manage and people's illness management strategies. Contact with a variety of resources, services and expert knowledge, have been viewed as invoking a process whereby individuals bring into play frequent internal contestation and revision of what constitutes legitimate expert knowledge about the best way to manage health and illness⁹ (www.npcrdc.ac.uk/Publications/self_care_spotlight.pdf).

Re-configuring chronic illness service models

    This evidence provided in qualitative research suggesting that health actions are established or modified by the interactions that take place between individuals and professionals in health service settings suggest the need to begin to see the ways in which the provision of care needs to be modified in a different light. There are currently rapid re-configurations of service models proposed or beginning to be implemented across the primary secondary divide. Equally the role of the care that families and significant other provide together with the efforts of patients themselves must start to be seen as part of a whole systems of care. We need to look at both what formal health services provide and what is provided (or not) informally and elsewhere.
    Self management support remains underdeveloped with chronic care services. As the architects of the Chronic Care Model argue, 'self-management support can't begin and end with a class'. At the University of Manchester we have developed a whole systems approach to self management (WISE).^10-12 The WISE approach envisages interaction between three levels:  patients informed by and using evidenced based clinical and lay knowledge who receive support and guidance from  practitioners trained in patients centred ways of consulting within a health-care system geared up to  be responsive and accessible to the needs of self-caring . Research on the WISE model shows that:
    -Information can be effectively improved to incorporate patient experience and expertise alongside medical information about management and treatment.
    -Clinician training in patient-centred consultation skills and shared decision making with patients is acceptable and appropriate and leads to positive outcomes.
    -Health services systems which are better aligned to patient practices of self-management are generally well received.
    -An integrated approach leads to significant reductions in health service utilisation (without evidence of an adverse effect).
    In terms of the future configuration of services for chronic illness self management.

Patient level. Interventions for self care support need to be sensitive to, and negotiate ways of, self managing which acknowledge the following:
    -People's existing established strategies to manage life with a long-term condition. Self care support interventions should build on these and people's existing perspectives about their condition.
    -The point people have reached in their trajectory of living life with a chronic illness i.e. how the condition changes with time; the possibility of relapses and recoveries; and varying needs for support and information from family and health professionals.
    -The patient's existing social network, support systems and access to resources both inside and outside the health and social care system.

Professional level. At the professional level, there is a need to consider what happens during consultations and what can be done to improve the desired outcome of adequate and effective self care support.
    -Improving the content of consultations through better training to provide professionals with strategies they can draw on as they attempt to negotiate care plans whilst respecting and acknowledging patients' own knowledge and experience of their illness.
    -Acknowledging the differing values and perspectives of the health professional and patient.
    -A tension exists for professionals working in health settings between valuing patient autonomy and encouraging self-management, and their need to address their own professional responsibility. Although health care professionals may value a shift towards increasing patient involvement, this is not necessarily straightforward and it is likely to take more than confidence to share some control and responsibility with the patient. More specific strategies and guidance within the consultation need to be developed.
    -Rather than using the term self-management, professionals tend to refer to valuing the development of a partnership approach to chronic disease management. Defining and negotiating the boundaries of care appear to be important elements in professional support for self management in general practice (i.e. encouraging self care and experimenting within certain parameters).
    -Being aware of the context of the consultation between patients and health care professionals and which aspects are outside the control of the health professional.
    -There is a danger of clinicians proposing conservative, risk averse, self care strategies, such as only focusing on compliance with medication, if contracts and targets make health professionals resistant to allowing patient's latitude in their self-management practice.

System level. The way health systems are organized, for example lack of flexibility in the system and personnel who are unresponsive to the access requirements of self-managing patients, has an impact on how patients accept and adapt to changes in access arrangements. Past experience of engaging with health systems may make patients diffident and unsure of new arrangements which seemingly put them in control, when in the past things have been determined solely from the supply end of service arrangements.
    Face to face discussions with patients about the meaning of this shift will be important. The organization of clinicians' work so that they have time to introduce self-management material and strategies 'up front' is likely to be crucial to professional and patient engagement in self care support.
    -The dissemination and access to knowledge within the system could be improved. Staff should have up-to-date information to allow them to direct patients to support groups or self management programmes. Plans to introduce information prescriptions from within primary and secondary care may give patients access to more appropriate information sources.
    -There is a need for integrated working with social services and voluntary and community agencies.
    -Opportunities should be in place for health professionals to attend self care support training programmes, such as motivational interviewing and cognitive behavioural therapy.
    -Locating and running self care support interventions from within the health care system is likely to have the biggest impact on the utilisation of services.

Challenges for Nursing roles in the care transition

    Dr Morales identifies a number of crucial issues including the need for an adequate response from nursing and nurses. A key question here is to what extent are nurses prepared for the challenge of long term condition management. Two examples are important and relevant here. One relates to the expanded role within primary care of running chronic disease clinics and in this regard we are starting to identify what nursed do well and areas for improvement. The new GP contract in the UK has increased responsibility for practice nurses in measurement, monitoring, and recording of their patients' health status and practice nurses in particular, are supporting patients with chronic illnesses. There has been little research examining the context in which practice nurses work and support self-care with patients with chronic illness, or the way they view or carry out their work. We need to know the way in which nurses operating in different parts of the health system conceptualise and work with their patients and the nurses it seems are very adept at innovative and creative and adaptive ways of working. Their emotional intelligence makes them very well suited to engaging with the emotional and psychological aspects of self management support. However there are gaps as well. From the findings of our work in Manchester there needs to be clarification regarding the skills and competencies required by nurses to support patients living with chronic illnesses in order to support and help people build on their existing strategies and develop the necessary self-management skills to manage their condition. It seems that in the absence of training in psycho social skills nurses rely on their experience and personal knowledge of working with patients. This taken for granted ways of working are likely to be well received by patients and coalesce with the every day way in which people manage. However our research points to the need for more appropriate training for practice nurses in chronic disease management which addresses the social, psychological and emotional impact of living with a chronic illness. In relation to new roles there are attempts from health care planners across the globe to construct new roles which are fit for purpose and particularly for being able to allow people to reside in community settings and live life to the fullest possible in the comfort of their home surroundings. But we must be wary of imposing models without rigorous evaluation. The Evercare evaluation of the delivery of long term condition support in the UK illustrates the point. Employment of community matrons is now a key feature of case management policy in the NHS in England and case management of frail elderly people introduced an additional range of services into primary care. But Evercare's approach to case management in the NHS in England did not reduce emergency admissions, emergency bed days, or mortality. This may be because community nurses were actually very efficient and good at identifying new need and new cases.¹³ Thus we must be careful in approaching chronic illness management solutions that new nurse roles may not contribute to the outcomes identified for them by policy makers and planners. They are not a panacea for intervening in highly complex arrangements within health care or for effective demand management. Without more radical system redesign this policy is unlikely to reduce hospital admissions. However, we must also look to unanticipated and positive consequences of new care and policy arrangements. Community matrons are likely to be popular with patients and increase access to care.
    In conclusion in terms of the challenge posed by Dr Morales we must view the notion of increasing chronic illness and an ageing population as both a substantive driver of change and a rhetorical device for professional and government. We need to consider the way in which the epidemiological transition can be matched with a chronic care transition which will be effective. In this respect a number of factors that need to be taken into consideration are becoming clearer:
    1. Strategies promoting self-management need to be embedded into routine service provision for chronic disease management. The WISE principles may be a useful approach for achieving this because it takes into account the need to intervene at three different levels, the patient, professional and organizational levels.
    2. Health professionals require extra time and training to help them provide effective self care support, so that their consultations can focus on achieving shared responsibility and decision making.
    3. There is a need to ensure that self care interventions are designed to complement people's previous experience of self management and their existing social networks and systems of supporting everyday living with a long-term condition.
    4. Access to clinics for those who are self managing should be flexible and greater use could be made of shared care approaches between primary and specialist centres.

References

1. Taylor D and Bury M. Chronic illness, expert patients and care transition. Sociology of Health & Illness 2007; 29(1): 27-45.
2. Kendal E, Rogers A. Extinguishing the social? State sponsored self-management policy and the Chronic Disease Self-Management Programme. Disability and Society 2007; 22(2): 129-143.
3. Grundy E. Reciprocity in relationships: socio-economic and health influences on intergenerational exchanges between Third Age parents and their adult children in Great Britain. British Journal of Sociology 2005; 56(2): 233-255. doi:10.1111/j.1468-4446.2005.00057.x
4. Rogers A, Lee V, Kennedy A. Continuity and change?: Exploring reactions to a guided self-management intervention in a randomised controlled trial for IBS with reference to prior experience of managing a long term condition. Trials 2007; 8: 6. [https://www.trial://sjournal.com/content/8/1/6].
5. Rogers A, Hassell K, Nicolaas G. Demanding Patients? Analysing the use of Primary Care. Buckingham, Open University Press,1999.  
6. Bury M. The sociology of chronic illness: A review of research and prospects. Sociol Health Illn 1991; 13: 451-466.
7. Radley A, Green R: Illness as adjustment: a methodology and conceptual framework. Sociol Health Illn 1987; 9: 179-207.
8. Lillrank A. Back pain and the resolution of diagnostic uncertainty in illness narratives. Social Science & Medicine 2003, 57: 1045-1054.
9. Stevenson FA, Britten N, Barry CA, Bradley CP, Barber N. Self-treatment and its discussion in medical consultations: how is medical pluralism managed in practice? Social Science & Medicine 2003; 57: 513-527.
10. Mead N, Varnam R, Rogers A, Roland M. What predicts patients' interest in the Internet as a health resource in primary care in England? Journal of Health Services Research and Policy 2003; 8: 33-9.
11. Kennedy A, Rogers A. Improving self-management skills: a whole systems approach. British Journal of Nursing 2001, 14-27 junio; 10(11): 734-738.
12. Kennedy, A P, Nelson, E, Reeves, D, Richardson, G, Roberts, C, Robinson A, Rogers A.E, Sculpher, M, Thompson, D.G. A randomised controlled trial to assess effectiveness and cost of a patient orientated self-management approach to chronic inflammatory bowel disease. Gut 2004; 53: 1639-1645.
13. Gravelle H et al. Impact of case management (Evercare) on frail elderly patients: controlled before and after analysis of quantitative outcome data BMJ 2007; 334: 31. doi:10.1136/bmj.