June 2000 · Vol. 49, No. 6
Can Addressing Family Relationships Improve Outcomes in Chronic Disease?
Report of the National Working Group on Family-Based Interventions in Chronic Disease
Karen L. Weihs, MD
Submitted, revised, January 10, 2000.
From the Department of Family and Community Medicine, University of California, San Francisco (L.F.), and the Department of Psychiatry and Behavioral Sciences, George Washington University, Washington, DC (K.L.W.).
This paper was derived from a larger report prepared by the National Working Group on Family Based Interventions in Chronic Disease for the Committee on Health and Behavior: Research Practice and Policy, Institute of Medicine, National Academy of Sciences.
Reprint requests should be addressed to Lawrence Fisher, PhD, Department of Family and Community Medicine, Box 0900, University of California, San Francisco, San Francisco, CA 94143. E-mail: firstname.lastname@example.org.
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.
health care costs. (J Fam Pract 2000; 49:561-566)
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).
Research on the relationship between family interactions and disease outcomes has progressed through 2 stages. The preintervention stage documents those characteristics of the family setting of disease management that are linked concurrently and longitudinally to specific chronic disease outcomes. The second stage involves formal clinical interventions that target the family context of disease management to alter outcome. This second stage tests the validity of linkages identified in earlier correlational studies. Second stage studies also clarify the extent to which characteristics of family relationships are responsive to interventional change and how such change affects disease outcomes.
The results of preintervention research on a large number of diseases show that the following characteristics of the family serve a protective function against negative disease management outcomes: family closeness and connectedness, problem-focused family coping skills, clear family organization and decision making, and direct communication among family members regarding the chronic disease.12-16 Family characteristics that increase the risk of poor disease management outcomes include: intrafamilial hostility, criticism, and blame; psychological trauma related to the initial diagnosis and treatment of the disease; extrafamilial stress; lack of an extrafamilial support system; family perfectionism and rigidity; and presence of psychopathology with onset prior to the chronic disease.17-20 Although enhancing family level protective factors remains an important goal of preventive interventions, the best clinical outcomes appear to be achieved by reducing family risk factors.21,22
Family-based preventive interventions designed to reduce complications and comorbid conditions of chronic disease and to reduce the potential negative effects of disease management for both patients and family members (secondary prevention) take 3 principal programmatic forms that also can be applied to individual clinical settings.
Psychoeducational Approaches. These are the most common forms and involve education about the cause, course, and care of the disease and about the emotional and psychological effects of the disease on both patients and family members.23,24 Psychoeducational programs provide information about how disease management affects family relationships, decision making, and problem solving among family members over time. These efforts are directed at increasing disease comprehension to improve personal and relational coping. Psychoeducation is usually delivered in a multifamily group format, but some programs operate with patients and family members separately or in other combinations.
Addressing Family Relationships. A second class of family-based interventions goes beyond education to improve the quality of relationships among family members with respect to the disease. A variety of group-based educational, role-playing, and specific behaviorally focused problem management techniques are used in multifamily group or individual family settings to foster emotional expressiveness, reduce social isolation, prevent the disease from dominating family life, promote collaboration and problem solving among family members, enhance conflict resolution, and reduce stigma.25
Psychotherapy. The third type of intervention involves family or couple psychotherapy.26,27 These interventions are usually restricted to families with exceptionally problematic preexisting or disease-induced dysfunctional relationships.
The vast majority of family-focused intervention research in chronic disease has been undertaken with diseases of childhood and adolescence (eg, type 1 diabetes, asthma, childhood cancer, sickle cell disease, irritable bowel syndrome), and with diseases of the elderly (eg, Alzheimer’s and other dementias). Less effort has been devoted to studies of families managing chronic diseases of adulthood (eg, type 2 diabetes, cardiovascular disease, chronic obstructive pulmonary disease [COPD]/asthma), although this is the age range when much patient-family collaboration in management takes place and where a sizeable increase in the costs of care occurs.20
Several preventive intervention studies have compared family-focused care with other types of interventions or to usual care. For example, Mittleman28 conducted a randomized trial of a family intervention with 2-generation families of elderly patients with Alzheimer’s disease. The patient’s spouse, adult offspring, and other family members attended 6 family meetings that were directed at increasing information about the disease and its management, improving skills to resolve family conflict, enhancing family problem solving, and detecting signs of emotional overload of caregivers. Contact with each family was continued for several years as problems arose. This clinical intervention study demonstrated improvement in the caregivers’ mental health, as well as a significant delay in nursing home placement compared with usual care control patients. The British Family Heart Study29 showed that counseling about diet and exercise delivered to both marital partners reduced the number of cardiovascular risk factors for both partners over time compared with a protocol that only addressed the patient. Also, a major study of family intervention for patients with hypertension demonstrated that a single home visit to develop a customized plan for families to assist with medication and lifestyle change resulted in improved patient compliance, reduced blood pressure, reduced patient mortality, and increased cost savings, relative to control families.30,31
Many intervention studies have been undertaken for families managing a child or adolescent with a chronic disease. Family-based programs have demonstrated improved disease management and other outcomes for children with cystic fibrosis32 and improved cooperation and involvement in families with adolescents with type 1 diabetes.25 In the latter study, increased involvement predicted better glucose management, which is a strong predictor of glycemic control.
These studies also suggest that the varying characteristics of different chronic diseases require different patient and family skills for effective management. One useful distinction refers to those chronic diseases that begin with acute or traumatic episodes that lead to remission or potential recurrence (eg, cancer, myocardial infarction [MI]), as opposed to those chronic diseases that begin slowly, are ongoing and progressive, and require repetitive and routine disease management practices (eg, diabetes, Alzheimer’s disease, COPD/asthma).33 Family-focused interventions with the former class of diseases have been directed primarily at crisis intervention, posttraumatic stress, and the legacies of invasive medical procedures, while family-focused interventions with the latter class have been directed at caregiving, disease management burnout, and the risks of disease management taking over the lives of family members over time. Thus, the target and design of interventions to improve or maintain optimal chronic disease management require consideration of both the needs for care posed by the natural course of the disease itself and the characteristics of the patient and family members who provide the care.
Cost of Interventions
The cost of intervention is important to consider when evaluating strategies of chronic disease management. A family-focused orientation to intervention in chronic disease increases the complexity of care, relative to patient-focused strategies, because it considers the family setting and the roles of family members in the management process. It does not, however, necessarily increase the overall cost of care. Although a well-controlled study that directly compares individual patient and family modes of intervention has not been reported, family-based care may be cost-efficient and may actually provide cost savings. Naylor and colleagues34 provided hospitalized elderly patients at risk for rehospitalization and their caregivers with a predischarge planning and education meeting and a series of home visits for 1 month postdischarge. Outcomes were assessed at 2, 6, 12, and 24 weeks postdischarge. Depending on need, the intervention protocol addressed family care management, knowledge, skill, personal and relationship strain, care-related problem solving, and extended support within the context of a care management team. At 24 weeks after discharge, reimbursements for health services for the intervention group were 50% less than for the control group, which received an equal number of traditional hospital and home care visits that did not target the family context.
Other indicators point to the potential cost-efficiency of family-based interventions. First, family caregiver burnout and exacerbations of medical conditions in other family members can be contained when family members other than the patient are also targeted as part of the intervention program. Lieberman and Fisher35 found that caring for a person with chronic disease can affect the health of 3 generations of family members and that family characteristics, such as conflict avoidance, affect the family’s collective use of professional services. Similarly, Fiske, Coyne, and Smith36 found that one third of the spouses of men hospitalized with their first MI experienced symptoms of depression during the first year after onset, suggesting the frequent presence of untreated and potentially costly family member comorbid conditions. And Johnston and coworkers37 found that a brief cardiac counseling and rehabilitation program for patients and partners reduced depression for both members of the couple at 1 year, which resulted in decreased patient disability compared with control patients. In preventive medicine, interventions with families to reduce cardiac risk factors have demonstrated improvements in diet for spouses, as well as patients.29,38 Also, the active inclusion of family issues and concerns as part of disease management has been linked to speedy patient recovery with few exacerbations of disease and few rehospitalizations.29,38 Also, the active inclusion of family issues and concerns as part of disease management has been linked to speedy patient recovery with few exacerbations of disease and few rehospitalizations.39,40
There is, therefore, sufficient evidence to support an expanded application of family-based approaches to chronic disease management. The principles derived from clinical research can be applied to day-today clinical care, both by the physician and other members of the health care team. Early and ongoing attention by clinicians to the setting of disease management and the central figures involved in care can have a substantial clinical payoff. Attention to the level of family stress, emotional tone, amount of patient and family member disease knowledge, how the disease is managed in the home and by whom, degree of conflict in the family regarding disease management, and adequacy of disease-related problem solving may prevent exacerbations of the disease and keep comorbidities to a minimum.41
Current findings also can be applied to systems of health care in programmatic ways to improve the quality of care without necessarily increasing the cost. Existing programs of patient education and evaluation can be refocused without major expansion to include family needs. Program protocols can provide information about disease management that includes relational coping and encourages better family problem solving and disease-related planning, emotional expressiveness, and conflict resolution within the home. Anderson and coworkers25 showed that a brief office-based intervention that helped adolescents with type 1 diabetes and their parents negotiate glucose monitoring and insulin injections improved parent-adolescent relationships, reduced conflict between members of both generations, and prevented parental withdrawal, which was linked to poor glucose control. These programs, sometimes brief and surprisingly simple, can be very effective. They do not require a massive reorganization of care but emphasize a refocusing of care that adopts a family-based perspective.
Although many studies have begun to demonstrate the power of family-based interventions, new studies are needed to refine and enhance the design of family-based intervention protocols, the technology of intervention evaluation, and the documentation of cost savings. The need is especially evident for chronic diseases of adulthood, such as type 2 diabetes, cardiovascular disease, and COPD/asthma.
The growing cost of disease management and the requirement that patients and families provide increasing amounts of care outside the health care system require a re-evaluation of the interventions currently in use. We suggest that a broader social and ecologic perspective to the management of chronic disease has several advantages compared with other approaches. It includes expanded clinical flexibility of more aspects of the management process; it incorporates more of the important players who participate in disease management; it harnesses the power and resources of the family to optimize care and brings them into the system as active participants; and it addresses a broad array of protective and risk factors that can affect outcomes over time. In this sense, a family-focused perspective integrates patient, family, and community perspectives by linking them directly to the setting where most disease management takes place. By so doing, it provides an expanded set of options for care that addresses the growing problems and costs that patients, families, and health care providers face when managing chronic disease.
Supported by the Office of Behavioral and Social Sciences Research, National Institutes of Health, and Pfizer Pharmaceuticals, Inc.
In addition to the authors, the members of the National Working Group on Family Based Interventions in Chronic Disease are: Barbara Anderson, PhD; Macaran A. Baird, MD; Janice Bell, RN, DNSc; Thomas Campbell, MD; Catherine A. Chesla, RN, DNSc; Frank deGruy, MD; Perry Dickenson, MD; Ann Garwick, PhD; Catherine L. Gilliss, RN, DNSc; Darryl Goetz, PhD; Ronald Goldschmidt, MD; George Howe, PhD; Nadine Kaslow, PhD; Ann Kazak, PhD; Morton A. Lieberman, PhD; Mary Mittelman, PhD; Susan McDaniel, PhD; Joan Patterson, PhD; Donald Ransom, PhD; John Rolland, MD; David Reiss, MD; Cleveland Shields, PhD; Peter Steinglass, MD; Frank Wamboldt, MD; Marianne Wamboldt, MD; Beatrice Wood, PhD; and Lyman Wynne, MD.
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