Abstract
BackgroundThe management of health care, particularly for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. Understanding the non-professional roles in health management requires information about the health related activities (HRA) that are undertaken by patients and informal carers. This understanding allows management planning that incorporates the capacity of patients and informal carers, as well as identifying the particular skills, knowledge and technical support that are necessary. This review was undertaken to identify how much time people with chronic illness and their informal carers spend on HRA.MethodsLiterature searches of three electronic databases (CINAHL, Medline, and PubMed) and two journals (Time and Society, Sociology of Health and Illness) were carried out in 2011 using the following search terms (and derivatives): chronic illness AND time AND consumer OR carer. The search was aimed at finding studies of time spent on HRA. A scoping literature review method was utilised.ResultsTwenty-two peer reviewed articles published between 1990 and 2010 were included for review. The review identified limited but specific studies about time use by people with a chronic illness and/or their carers. While illness work was seen as demanding, few studies combined inquiry about both defined tasks and defined time use. It also identified methodological issues such as consistency of definition and data collection methods, which remain unresolved.ConclusionsWhile HRA are seen as demanding by people doing them, few studies have measured actual time taken to carry out a comprehensive range of HRA. The results of this review suggest that both patients with chronic illness and informal carers may be spending 2 hours a day or more on HRA. Illnesses such as diabetes may be associated with higher time use. More empirical research is needed to understand the time demands of self-management, particularly for those affected by chronic illness.
Highlights
The management of health care, for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them
This review aims to summarize the current literature that: 1. specifies health related activities (HRA) undertaken by people with chronic illness and their informal carers; and
Having read all 22 papers in detail, we identified three principle themes: 1) time spent by individuals on specific HRA; 2) time spent by carers on specific HRA; and 3) the methodological difficulties associated with time use studies
Summary
The management of health care, for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. The three types of ‘illness work’ they identified include 1) “regimen work, crisis prevention and management, symptom management, and diagnostic-related work”; 2) everyday life work, that includes practical tasks “that keep the household going”; and 3) biographical tasks that are done as the person and their family reconceptualise and re-construct the ‘story’ about their lives. This concept identifies work domains of people affected by chronic illness, but does not identify specific HRA undertaken, or how much time people spend on doing them. Determining their time use may assist health providers to coordinate and manage formal care in a way that optimises time use for both health care providers and health care receivers
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