Can Addressing Family Relationships Improve Outcomes in Chronic Disease?

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.

Preintervention Research

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

Intervention Research

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.

Study Populations

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