Human infrastructure in health: a commentary on networks of supports

Abstract

The move towards community health settings and health partnership initiatives in managing chronic disease have inadvertently created a renewed focus on the social economy in Australia, particularly the informal human structures of support and significance (people, professionals and partnerships) that can contribute to health. Although these initiatives have also pointed to the need for greater flexibility of service delivery and trans-disciplinarity of health professionals, their ultimate success rests on the quality of the underlying human infrastructure to support these changes. Over the past two decades, a confluence of observations and research studies have confirmed the existence of, and need for, a social construction of health and chronic disease management (see e.g. Gallant,1 Israel2 and Norris et al.3). Undoubtedly, chronic conditions may precipitate a process of deep introspection, identity change, and extreme modification of day-today activities for the individual or 'self' (see Charmaz4 and Muenchberger et al.5). However, the role and significance that others play in lessening the impact of chronic disease on the individual although often mentioned, remains vastly underestimated and even less well understood. In the absence of a comprehensive understanding of the human infrastructure that is expected to support the shift towards prevention and coordination in the community, the burden of disease will continue to damage social networks, maintaining inappropriate, unsustainable and costly dependencies on health services.The social construction of health and wellbeing can be best understood when considering the concept of self-management. The idea that self-management in chronic disease is solely an individual's responsibility is a tempting, but fundamental error of understanding. Self-management courses are often delivered to individuals (within a group context) by a trained peer or health professional, and the goals and outcomes specified are largely individually focussed (e.g. individual gains in knowledge, skills and health utilisation).3 The information on 'managing self' in chronic disease is usually disseminated by way of an individual workbook, and goals are documented in response to individual priorities, needs and capacities. There is also a component focussed on locating effective support and linking with healthcare providers.6 Even though there is an implied assumption, if not expectation, that including family members or significant others will somehow facilitate self-management goals over time, what is not often clear is the nature or quality of the role that family members or significant others must assume in order to facilitate this change in health behaviour.A comprehensive review conducted by Gallant1 explicated the particular importance of emotional support in self-management (especially perceived support). Gallant argued that effective selfmanagement relies on the facilitated relationships between family, peers and healthcare professionals (see also Kendall et al.7). Although there is increasing focus and resources dedicated to optimising the patient-health professional partnership in chronic disease, the same cannot be said for family and friendship networks where the impost may be much greater. Without in-depth studies documenting the quantity and quality of the social infrastructure andhowit is used by people with chronic conditions, it is difficult to determine actual social and financial implications. For instance, in Australia between 1998 and 2003, 93 900 people with severe (including chronic) conditions required daily assistance with core activities.8 Presumably, most of this daily assistance came from family or friends. Indeed, almost half of disability services delivered to people with chronic conditions have been found to be provided through informal support sources.9 A major question, therefore, becomes how the health service system can support, maintain and partner with this significant social network to improve the health of people with chronic conditions. …