Can Addressing Family Relationships Improve Outcomes in Chronic Disease?

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

Clinical applications

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