Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness.

BACKGROUND: In this article we outline Burden of Treatment Theory, a new model of the relationship between sick people, their social networks, and healthcare services. Health services face the challenge of growing populations with long-term and life-limiting conditions, they have responded to this by delegating to sick people and their networks routine work aimed at managing symptoms, and at retarding - and sometimes preventing - disease progression. This is the new proactive work of patient-hood for which patients are increasingly accountable: founded on ideas about self-care, self-empowerment, and self-actualization, and on new technologies and treatment modalities which can be shifted from the clinic into the community. These place new demands on sick people, which they may experience as burdens of treatment. DISCUSSION: As the burdens accumulate some patients are overwhelmed, and the consequences are likely to be poor healthcare outcomes for individual patients, increasing strain on caregivers, and rising demand and costs of healthcare services. In the face of these challenges we need to better understand the resources that patients draw upon as they respond to the demands of both burdens of illness and burdens of treatment, and the ways that resources interact with healthcare utilization. SUMMARY: Burden of Treatment Theory is oriented to understanding how capacity for action interacts with the work that stems from healthcare. Burden of Treatment Theory is a structural model that focuses on the work that patients and their networks do. It thus helps us understand variations in healthcare utilization and adherence in different healthcare settings and clinical contexts.

Psychiatrists as social engineers: a study of an anti-stigma campaign.

Anti-stigma campaigns in the field of mental health appeared in a variety of countries and organizations during the 1990s. This paper examines one of these--the 'Changing Minds' Campaign of the Royal College of Psychiatrists in Britain. The paper aims to elucidate the role the campaign played in the professional project of psychiatry and situate it in a wider context of both sociology and changes in mental health policy. The interest work involved is set in the context of the long-standing controversies surrounding psychiatric theory and practice, as well as the network of other agencies and actors seeking improvements in the citizenship of people with mental health problems in a post-institutional world.

Improving patient involvement in chronic disease management: the views of patients, GPs and specialists on a guidebook for ulcerative colitis.

Patient information, shared care and decision-making are recognised as beneficial to chronic disease management. As part of an RCT, opinions of ulcerative colitis patients and their doctors were sought on a guidebook designed to support self-care and mediate doctor/patient interaction during consultations. Semi-structured interviews were conducted with 6 specialists and 16 GPs. Patients' views were obtained from written responses to a postal questionnaire (136 replies). Inclusion of lay knowledge and clarification of treatment decision processes increased patients' perception of involvement in disease management through increased identification and awareness of others' self-management experiences. Doctors focused on the importance of improving patients' compliance and use of services. However, the guidebook was seldom used as it had been intended during consultations. Patients felt constrained by time limits and consultants did not actively encourage guidebook use. Based on the findings, we suggest an approach utilising the guidebook to improve patient participation in disease management.