A special edition of Chronic Illness recently highlighted the importance of social support systems in chronic disease management and that in order to leverage these systems effectively, professionals in care must move beyond the notion of self-care as an operating framework. According to the journal editor, John Piette, “The next advance we need in the current century is that for many patients ‘self’ management is a misnomer, since their disease is actually shared by the family and broader social network.”
The prevalence of chronic illness is projected to increase dramatically in the future. If this was not problematic enough, couple it with a health care workforce that is experiencing shortages in skilled preventive care and chronic-disease management. Furthermore, health literacy levels are relatively low, and preventive health care access is especially difficult in America. People living with chronic diseases are not getting the support they need from formal care organizations, and as a consequence, a large proportion of chronic disease management is conducted through informal caregiving by family members and/or friends.
Models of chronic illness care must recognize the role that informal caregivers play within the gaps in formal services and the challenges they face. The caregiving that they perform represents a form of shared burden between the chronically ill individual and themselves as a caregiver. Recognition of this shared burden is lost when focused solely on self-care interventions. This narrow view has led to widespread neglect of the needs of the caregiver themselves. Not only do caregiving situations create stress on the caregiver, they also can have unintentionally harmful health effects on the care recipient. In these cases, both the care receiver and caregiver face unnecessary risks to their physical and psychological health. In response, many health care providers and policymakers are starting to recognize the true social nature of caregiving and the implications that this has for chronic disease management. Providing caregivers with the resources and support they need is becoming a central focus.
The question remains, however, if this is enough. This Chronic Illness comprises an overview of the research literature, a model for effective caregiver support interventions, and numerous other helpful resources. To access it, visit http://chi.sagepub.com/current.dtl.
Source: Piette, J. 2010. Moving beyond the notion of ‘self’ care. Chronic Illness 6:3 3-6.
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