The management of patients with chronic disease constitutes the largest single cost to the health care system in the United States. New approaches and methods are needed to reduce preventable complications and to enhance the health and well-being of patients with chronic disease and their families.
Interventions that target the family setting in which disease management takes place have emerged as an alternative to traditional strategies that focus only on the individual patient or that consider the family only as a peripheral source of positive or negative social support. In this approach, the educational, relational, and personal needs of all family members are emphasized.
Data reviewed by the National Working Group on Family-Based Interventions in Chronic Disease identified potential mechanisms by which the relational context of the family affects disease management and how characteristics of family relationships serve as risk or protective factors. In this paper we describe the major forms of family-based interventions, review the results of selected clinical trials, and present applications for clinical practice.
The data suggest that approaches to the management of chronic disease should be expanded to include the broader relational context in which disease management takes place. Although it adds complexity to clinical intervention, this approach increases clinical flexibility, addresses the important players in disease management, and accounts for a significant number of risk and protective factors that affect outcome.
The care and management of patients with chronic disease make up the single largest cost to the US health care system.1 Despite this enormous investment of resources, preventable complications and exacerbations of chronic disease remain serious problems.2 A new approach to caring for patients with chronic disease has emerged in the past 10 years supplementing the patient-focused biologic approach that dominates the field. This new approach, which adopts a social systems or ecologic perspective, provides a central organizing theme for designing integrated biologic, behavioral, and social intervention protocols. It shifts the focus of intervention from the patient to the social setting in which disease management typically takes place.3 The central social context within this perspective is the family, broadly defined. In this article we summarize the major ideas and findings of this line of health care research by reviewing selected clinical studies, and suggest ways this approach can be incorporated into clinical practice to improve outcomes for patients with chronic disease.
A family-focused approach to the management of chronic disease stands in sharp contrast to traditional patient-focused approaches. It emphasizes: (1) defining and assessing the relational context in which disease management takes place; (2) including the family environment and other family members as potential targets for intervention; (3) addressing the educational, relational, and personal needs of the patient and other members of the family; (4) viewing the disease not as a series of acute episodes, but as an ongoing process that requires continuity of care between the health care team and the family; and (5) including the patient and other family members as part of a comprehensive program of outcomes assessment. Traditional patient-focused or disease-focused models primarily target the patient and relegate the family and the social context in which disease management takes place to a secondary position of providing positive or negative social support.
The research described below is based on a series of reviews prepared by members of the Working Group on Family Based Interventions in Chronic Disease for presentation at a 2-day national meeting in September 1998. Each participant was asked to review a specified disease of childhood, adolescence, adulthood, or the elderly with which they had both clinical and research experience. The task was to summarize the family-based intervention research literature for that disease and to identify a set of exemplary studies that best represented the object, methodology, and outcomes of that approach to intervention. We then reviewed and integrated the written reports from each presenter as the basis for a group report to the Institute of Medicine and for this paper. The exemplary studies are described or referenced below. This is a relatively new area of systematic inquiry that shows considerable promise. With a few exceptions,4 however, there is insufficient literature to support an evidence-based review or meta-analysis.
Clinical research on the family and chronic disease
Current research suggests there are 2 ways that the specific relationships within families affect chronic disease management outcomes. First, the emotional climate of the family directly affects the patient’s physiologic systems.5,6 Several physiologic mechanisms are influenced by the calming effects of secure attachments among family members, as well as by the disruptive effects of family hostility and criticism.7,8 These effects operate through homeostatic and allostatic changes in hormonal, immunologic, and other biologic systems that are linked to the outcomes of chronic disease through the physiologic stress response.9 Allostatic load is defined as the long-term effect of the physiologic response to stress.10 Adjustments in the hypothalamic-pituitary axis occur when the usual homeostatic feedback processes are not sufficient to achieve long-term physiologic stability. Second, family members’ responses to the disease and to disease management affect the patient’s self-care behavior. Many chronic diseases require tedious, repetitive, and at times invasive management procedures that force major changes in family lifestyle, allocation of power, personal autonomy, role functioning, and decision making. Family members can either reorganize to “own” the disease jointly or they can undermine disease management through actions or inactions that isolate the patient, provide suboptimal cooperation, or actually obstruct self-care behavior.11 Thus, the intense interpersonal relationships within the family setting affect the physiologic functioning of the patient and the behavioral and emotional lives of all family members. Both affect proximal outcomes (ie, poor glucose control or poorly controlled hypertension) and distal outcomes (ie, diabetes complications or cardiovascular incidents).