Caregiving Places a Burden on Family Members of HF Patients

September 13, 2010

For the families of heart failure patients, caregiving is a significant burden that, until recently, has not been examined.

Of the estimated 5.8 million heart failure (HF) patients in the US, a significant percentage require assistance with daily activities, and much of the time, that task falls on family members. In the Nursing Investigator Session Monday at the HFSA 14th Annual Scientific Session, Boyoung Hwang of the University of California, San Francisco School of Nursing addressed the “Impact of Caregiving on Family Caregivers of Patients with Heart Failure.”

In cases of chronic illness, the role of the family is critical; however, there is limited knowledge about caregiving in the context of this patient group, said Hwang, who led a study along with Kathleen Dracup in an effort to identify factors—both positive and negative—associated with the impact on caregivers of patients with heart failure (HF).

For the cross-sectional study, patients were recruited from two clinics and asked to complete questionnaires; caregivers had to be a family member and could not be part of a caregiver organization. Caregivers, who, like patients, were mostly in their 50s, wer more likely to be female, and a spouse of the patient.

Surprisingly, Hwang and Dracup found that the mean time spent as caregiver was more than four years total, including more than 50 hours per week. The most prominent negative impact of caregiving was found to be the impact on a person’s daily schedule, and the fact that activities revolved around caring for the patient, which was found to result in social isolation for some. The most positive aspect was the feeling of being able to help a loved one.

Researchers also found that family caregivers perceive social support and control of the situation as important, highlighting a need for educational programs as well as online resources and counseling services. They also concluded that the health status of caregivers is more adversely affected after patients are released from the hospital, stressing the need to include family caregivers in discharge education.

Future research, they concluded, is warranted on this topic, focusing particularly on larger sample sizes.

Another study, led by Aurelia Macabasco-O’Connell and colleagues from UCSF School of Nursing, examined the potential for disease management programs in public hospitals to improve outcomes in uninsured patients.

According Macabasco-O’Connell, disease management programs (DMPs) have demonstrated improved outcomes and reduced mortality and morbidity in heart failure patients. Health-related quality of life (QoL), which is “a significant predictor of heart failure outcomes,” has not been established in uninsured patients participating in DMPs.

With that in mind, the USCF team recruited 266 adult patients from two Los Angeles-based county hospitals, all of whom were medically indigent and receiving care for acute or chronic heart failure. Participants underwent an initial baseline evaluation, physical examin and questionnaire, and provided sociodemographic data and a clinical history before entering the DMPs, which were led by nurse practitioners and featured patient education and case management in the form of face-to-face interventions and phone calls. Participants were also given self-management tools, including a weight scale, pill box, and home blood pressure machine, and were referred to ancillary services, such as social workers, nutritionist, and smoking cessation counselers.

Macabasco-O’Connell and colleagues analyzed the information from the Kansas City Cardiomyopathy Questionnaire—a 23-item tool developed to quantify physical limitation, symptoms, symptom stability, social limitation, self-efficacy and QoL—gathered both at baseline and completion. Of the 266 subjects, the average age was 53, and the majority were male, of Hispanic origin, and medically indigent.

According to the study’s authors, all of the scores “significantly improved,” with the largest improvement seen in the areas of social limitation (increased from a mean score of 46.2 to 58.5), and QoL, which improved from 44.9 to 55.3.

Self-efficacy also improved, she said, adding that patients “had a better handle of the disease progress” after completing the DMP. “They become more adherent to therapy because they could more effectively understand their condition and how to manage it.”

The researchers believe that younger, insured patients with low functioning and a moderately high degree of clinical symptoms may benefit most from disease management programs, particularly in terms of improved overall health and QoL. “Programs focusing on symptom management and physical functioning to improve health-related QoL are needed to further improved outcomes,” said Macabasco-O’Connell.