International Journal of Nursing Studies 51 (2014) 691–693

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Guest Editorial

What is the ‘self’ in chronic disease self-management?

What is the ‘self’ in self-management of chronic disease? A vast amount of literature identifies patients themselves as being a pivotal determinant of health outcomes across different chronic diseases. Self-management as an ‘‘individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition’’ (Barlow et al., 2002, p. 178) not only includes behaviors related to treatment plans (such as medication consumption), but also to social and role management (Adams et al., 2004; Newman et al., 2004). Accordingly, the interventions that healthcare providers offer to promote self-management are important and complex (Adams et al., 2004; Barlow et al., 2002; Disler et al., 2012). In modern health discourse, the person with chronic disease is seen to be active, involved, and necessary, if selfmanagement is to be effective and health systems are to be sustainable (Barlow et al., 2002; Coster and Norman, 2009; Newman et al., 2004; World Health Organization, 2008). It has never been more important that patients willingly and skilfully take on daily self-management responsibilities. Who, if not patients themselves, can do this? Language is never merely semantic or literal (Pennebaker et al., 2003) but reflects motives, channels attention, and assumes world-views (Pennebaker et al., 2003; Tausczik and Pennebaker, 2010). The use of ‘self’ in relation to chronic disease management therefore reflects particular beliefs and assumptions about human behavior and health care interventions. Despite its ubiquity and acceptance, the term ‘self-management’ is problematically oxymoronic. In contrast to the present discourse of the self, chronic diseases are not individualistic but ‘‘embedded in family, community and societal conditions that shape and influence – and may constrain – the choices people make, or can make’’ (Kendall, 2010, p. 15). This challenges two assumptions which underpin current approaches to self-management of chronic disease: that living with a chronic disease is largely an independent activity, and that healthcare interventions can only bring about improvement through changes at the individual level.

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Predominant orthodoxies around self-management ignore cultural views of independence, limit thinking about the importance of family and environmental interventions, and do not reflect the complexities about what motivates and influences behavior. Anthropological and psychological evidence indicates that conceptions of ‘independence’ are culturally dependent – some cultural groups tend to view themselves as being more independent and autonomous, and others tend to emphasize the importance of close relationships (Gardner and Slotter, 2007). While it may seem more fitting to focus selfmanagement interventions on those who view themselves in a more autonomous and independent manner, such people also tend to ascribe high value to being able to exercise free choice – to ‘do their own thing’ (Gardner and Slotter, 2007). For example: patients who have become experts in daily management of chronic disease are more likely to state that they do not achieve this expertise through adherence to recommendations from healthcare providers (Thorne, 2008). Families are one of the most significant and influential social units and both help and hinder health in the context of chronic disease – through genetics, health behaviors and psycho-physiological pathways (Weihs et al., 2002). Families influence key everyday issues related to chronic disease management, from grocery purchases, decisions about seeking treatment, providing and receiving emotional support, to less common but equally complex issues, such as handling stress in marital and relational conflict. Meta-analyses show that family-based interventions in chronic illness improve the physical and mental health of both patients and family members compared to individual-based standard care (Hartmann et al., 2010; Martire et al., 2004; Weihs et al., 2002). Effective family interventions range from including family members in education sessions, and psycho-education with family members to help with coping, to family therapy to address relational issues and family functioning (Campbell, 2003). The evidence suggests that healthcare providers should recognize, understand, and implement family interventions that are likely to be more useful to patients and

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Editorial / International Journal of Nursing Studies 51 (2014) 691–693

family members than the current individual focused practices and interventions. The individualistic focus of self-management is also reflected in the components of interventions – which mostly address education about the disease and its treatment, strategies for problem-solving and decisionmaking, and counseling interventions such as cognitive behavioral therapy (Newman et al., 2004) and motivational interviewing (Chen et al., 2012; Linden et al., 2010). These types of interventions focus on increasing the individual’s knowledge, awareness, or consciousness of the situation while ignoring the contexts in which patients live with chronic conditions (Thorne, 2008). For example, when faced with navigating an increasingly complex world, people develop ‘fixed-action patterns’ – more automatic or seemingly mindless responses (Cialdini, 2009). These patterns can be seen in patients’ exercise and eating patterns – behaviors that are often developed in childhood – and are very difficult to change (Zimmerman, 2013). Menu planning, shopping, preparing food and eating – vital behaviors in many chronic diseases – are embedded as much, or more so, in custom and habit than they are in deliberate, rational, and conscious decisions. To address how people actually make decisions and what influences behavior thus requires a greater understanding of environmental, social and contextual influences. Skeptics may fear that a focus on contextual over individual determinants ignores evidence that self-management interventions ‘work’, and also limits patient autonomy and self-efficacy. Yet research shows that many important behaviors in chronic disease are influenced unknowingly by external and environmental cues. For example, Wansink (2004) found that environmental cues such as food availability, size and color of plate, eating with others, serving size and type, ease of consumption, and lighting and sound in eating environments influence the quantity of food consumed, even though the consumer did not believe that these factors altered the amount of food eaten. There has been limited application of these environmental modification strategies to improve eating habits in chronic diseases where diet is of paramount importance. Interventions that make healthy food and exercising more of an automatic or mindless behavior (Zimmerman, 2013), or visual interventions that integrate emotions and experiences of choice (Williams et al., 2012), may be more effective. Future research into self-management risks retaining problematic ideological and normative assumptions. Selfmanagement outcomes tend to focus on biomedical indicators selected and monitored by professionals, rather than other outcomes that may be of more importance to patients and their families (Thorne, 2008). While nurses and other healthcare providers are likely to be motivated by the desire to improve and maintain patient health, the definition of health is not universal. There are other powerful motives, such as social inclusion (Baumeister and Leary, 1995) and embarrassment avoidance (Sabini et al., 2001), that may more strongly motivate patients, and result in behaviors incongruent with provider-prescribed self-management regimens. With a patient focused view, healthcare providers may not be sufficiently prepared to

offer a number of psychosocial, family, and environmental interventions to patients and truly adapt these to their personal needs and preferences (Linden et al., 2010; Newman et al., 2004; Thorne, 2008). While some argue that self-management reflects shared decision-making and collaboration between patients and their healthcare providers, the full extent of differences that may exist in motivation, responsibility/blame, and desired outcomes are not well encompassed by existing self-management interventions. These normative and idealized assumptions have ideological implications when self-management shifts not only the responsibility of care to patients for a wholesome end, but also the blame, if this is not achieved. When patients are judged to have not ‘adhered’ to a recommended regimen, the implication is that it is the patient’s failure to ‘self’-manage, rather than the healthcare provider’s failure to provide appropriate, effective interventions. An example of this pathologizing of patient behavior can be seen in a recent JAMA Viewpoint, in which Marcum et al. (2013) proposed that medication nonadherence be considered a diagnosable medical condition, with no critical reflection on what the healthcare providers’ contribution to the problem might be, or factors in the patient’s broader context. The explanation provided by Marcum and colleagues might more likely reflect healthcare providers’ motives to save face or manage impressions (Malle, 2004) than be an accurate reflection of the reasons patients do or do not take prescribed medication. More research is needed to understand the influence of language (and associated underlying beliefs) reflected in self-management of chronic disease. Linguistic analysis could be extremely powerful toward understanding and better realizing the full scope of complex interventions that could be used to both reconceptualize and promote effective chronic disease management. In summary, ‘self-management’ is not merely a descriptive label, but reflects what is unsaid, what can be included or excluded, what is addressed or missed by a chronic disease intervention, and implies particular aims, responsibilities, and possibilities. The term ‘self’, with regard to management of chronic disease, should be used more cautiously and critically. Despite its orthodoxy, it is an oxymoronic phrase that neither reflects the complexities of how the disease is truly managed nor how humans actually behave. Conflict of Interest None References Adams, K., Greiner, A.C., Corrigan, J.M., 2004. Report of a Summit. The 1st Annual Crossing the Quality Chasm Summit – a Focus on Communities. National Academies Press, Washington, DC. Barlow, J., Wright, C., Sheasby, J., Turner, A., Hainsworth, J., 2002. Selfmanagement approaches for people with chronic conditions: a review. Patient Education and Counseling 48, 177–187. Baumeister, R.F., Leary, M.R., 1995. The need to belong: desire for interpersonal attachments as a fundamental human emotion. Psychological Bulletin 117 (3) 497–529.

Editorial / International Journal of Nursing Studies 51 (2014) 691–693 Campbell, T.L., 2003. The effectiveness of family interventions for physical disorders. Journal of Marital and Family Therapy 29 (2) 263–281. Chen, S.M., Creedy, D., Lin, H.-S., Wollin, J., 2012. International Journal of Nursing Studies 49, 637–644, http://dx.doi.org/10.1016/j.ijnjurstu. 2011.11.011. Cialdini, R.B., 2009. Influence: Science and Practice, 5th ed. Pearson, Boston, MA. Coster, S., Norman, I.J., 2009. Cochrane reviews of educational and selfmanagement interventions to guide practice: a review. International Journal of Nursing Studies 46 (4) 508–528, http://dx.doi.org/10.1016/ j.ijnurstu.2008.09.009. Disler, R.T., Gallagher, R.D., Davidson, P.M., 2012. Factors influencing selfmanagement in chronic obstructive pulmonary disease: an integrative review. International Journal of Nursing Studies 49, 230–242, http://dx.doi.org/10.1016/j.ijnurstu.2011.11.005. Gardner, W.L., Slotter, E., 2007. Independent self-construal. In: Vohs, K.D., Baumeister, R.F. (Eds.), Encyclopedia of Social Psychology. Sage Publications, Thousand Oaks, CA, pp. 471–472. Hartmann, M., Bazner, E., Wild, B., Eisler, I., Herzog, W., 2010. Effects of interventions involving the family in the treatment of adult patients with chronic physical disease: a meta-analysis. Psychotherapy and Psychosomatics 29, 136–148. Kendall, P.R.W., 2010. Investing in Prevention: Improving Health and Creating Sustainability: the Provincial Health Officer’s Special Report. Office of the Provincial Health Officer, British Columbia. Linden, A., Butterworth, S.W., Prochaska, J.O., 2010. Motivational interviewing-based health coaching as a chronic care intervention. Journal of Evaluation in Clinical Practice 16 (1) 166–174. Malle, B.F., 2004. How the Mind Explains Behavior: Folk Explanations, Meaning, and Social Interaction. MIT Press, Cambridge, MA. Marcum, Z.A., Sevick, M.A., Handler, S.M., 2013. Medication nonadherence: a diagnosable and treatable medical condition. Journal of the American Medical Association 309, 2105–2106. Martire, L.M., Lustig, A.P., Schulz, R., Miller, G.E., Helgeson, V.S., 2004. Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychology 23 (6) 599–611. Newman, S., Steed, L., Mulligan, K., 2004. Self-management interventions for chronic illness. Lancet 364, 1523–1537. Pennebaker, J.W., Matthia, R.M., Neiderhoffer, K.G., 2003. Psychological aspects of natural language use: our words, our selves. Annual Review

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of Psychology 54, 547–577, http://dx.doi.org/10.1146/annurev.psych.54.101601.145041. Sabini, J., Siepmann, M., Stein, J., 2001. The really fundamental attribution error in social psychological research. Psychological Inquiry 12 (1) 1–15. Tausczik, Y.R., Pennebaker, J.W., 2010. The psychological meaning of words: LIWC and computerized text analysis methods. Journal of Language and Social Psychology 29 (1) 24–54. Thorne, S., 2008. Chronic disease management: what is the concept? Canadian Journal of Nursing Research 40 (3) 7–14. Wansink, B., 2004. Environmental factors that increase the food intake and consumption volume of unknowing consumers. Annual Review of Nutrition 24, 455–479, http://dx.doi.org/10.1146/annurev. nutr.24.012003.132140. Weihs, K., Fisher, L., Baird, M., 2002. Families, health, and behavior. A section of the commissioned report by the Committee on Health and Behavior: research, practice and policy, Division of Neuroscience and Behavioral Health and Division of Health Promotion and Disease Prevention, Institute of Medicine, National Academy of Sciences. Families, Systems, & Health 20 (1) 7–46. Williams, B., Anderson, A.S., Barton, K., McGhee, J., 2012. Can theory be embedded in visual interventions to promote self-management? A proposed model and worked example. International Journal of Nursing Studies 49, 1598–1609, http://dx.doi.org/10.1013/j.ijnurstu. 2012.07.005. World Health Organization, 2008. 2008–2013 Action Plan for the Global Strategy for the Prevention and Control of Noncommunicable Diseases. World Health Organization, Geneva, Switzerland. Zimmerman, F.J., 2013. Habit, custom, and power: a multi-level theory of population health. Social Science & Medicine 80, 47–56.

Lorraine M. Thirsk Alexander M. Clark* Faculty of Nursing, University of Alberta, Canada *Corresponding author E-mail address: [email protected] (A.M. Clark) 9 October 2013

What is the 'self' in chronic disease self-management?

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