Editorial: New visions, new challenges in self-care of chronic illness

I have been writing about and researching the self-care of chronic illness for more than three decades. At this stage in my career, it is evident that the field has undergone major changes and that significant progress has been made in regard to how self-care is conceptualised and supported. However, as the articles in this special edition of journal attest, the more we know about self-care, the more critical we need to be about self-care in chronic illness management. The articles within this special edition of journal offer a provocative and often challenging understanding of chronic illness, particularly the factors and situations that facilitate and constrain the self-care of chronic illness. Together, they suggest future directives for both the research and education/support of self-care in chronic illness management. Many of the authors of articles in this special edition agree that it is not possible to design and implement self-care education and support without considering the social and cultural context in which the person lives and the meaning the person ascribes to illness. One of the critiques of self-care research and support is that we have not sufficiently addressed age, gender and cultural differences in these initiatives. Dickson and colleagues have addressed this gap in their study of how gender determines the participation of people with heart failure in self-care. These researchers provide compelling evidence that gender must be considered in self-care education and support. In addition, the findings of their study pose challenges to a common assumption underlying much self-care research that it is good and right for all people with chronic illness to assume control of their everyday disease management. This is reiterated by Aduluv, Asplund, and Norbergh and Abubakari and colleagues who determined that people’s illness perspectives, or how they view their illness and its meaning in their lives, is a significant determiner of their intention to engage in self-care. The articles in this special edition challenge our current conceptualisations of self-care. Traditionally, self-care has been conceptualised as occurring postdiagnosis and at home, usually after a period of hospitalisation. Rothenberger challenged this conceptualisation in a concept analysis of self-care in prediabetes, a condition typically not viewed as a true chronic illness because it has not actually culminated in diabetes. Lindberg, Wikstro¨m and Lindberg suggest that self-care can be taught and supported in acute exacerbations of a chronic disease and integrated as part of a hospital plan of care. These authors describe a nursing intervention to teach people receiving haemodialysis about how to manage fluid overload using the principles of self-care. Intervention studies in self-care have been strongly criticised for their limited samples and research designs. These limitations have been addressed by Lunnela, Kaariainen and Kyngas who tested the efficacy of a web-based self-care education and support programme to assist people with glaucoma. Mulligan and colleagues evaluated a self-care education and support programme intended for people with Parkinson’s disease. As well, Roy and colleagues provide one of the few published evaluations of Flinders Programme of self-care in New Zealand. Both articles illustrate the benefits as well as the challenges of such interventions. Despite the contributions of research profiled in this special edition, the authors also identify a number of directions for future research in the field. Udlis, for example, in her critical analysis of the concept of self-care offers a model of self-care and recommends future research to validate this model. Other authors stated that there is a need for a definition of self-care that includes its dimensions and the factors that determine/influence it, a definition accepted across disciplines and settings. Such an endeavour is not merely a frivolous academic exercise. It is of critical importance in determining how best to educate and support people with chronic illness in their self-care. There are directives for future investigation that are implied by the research findings described within this edition. For example, several articles highlight the gaps that exist between the research of self-care and the policies and practices that should be informed by that body of research. There is obviously a need for efficacious knowledge translation strategies to address these gaps. Other articles focus on the personal, community and social systems within which people with chronic illness live. Researchers in the field of self-care must find ways to move beyond the focus on health care to include community and social services. In summary, the articles represented within this special edition draw attention to the complex, contextualised and ever-changing nature of the self-care of chronic illness. As someone who has been immersed in the field for several years, I have witnessed several changes from an initial focus on discrete illnesses, to an acknowledgement of shared elements of self-care across diseases, to an emphasis on interventional development and research. Although I celebrate the progress we have made, the answer to, ‘What is the nature of a self-care programme of education and support that is needed in order for people with a chronic illness to manage their disease effectively over time and on an everyday basis?’ remains somewhat elusive. The articles in this edition of the journal incite new challenges, such as how we can deliver the most effective self-care education and support within the personal, system-wide and economic constraints of the real world. I invite you to be open to the challenges and opportunities that these authors provide us.

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