Abstract
Millions of family members are serving as caregivers for patients with heart failure and the numbers will continue to rise. It appears that caregivers desire to be involved in the patient's care even when the caregiving tasks average 8 hours per day. Burden, stress, and depression have been found to be significantly associated with the caregiving role in this population. Decreasing any negative aspects of caregiving should be a priority. Alarmingly, caregivers have reported being ignored or made to feel like an outsider by health care providers. Nurses are in a pivotal position to improve patient and caregiver outcomes by including the family caregivers of heart failure patients in all aspects of care and in promoting the well being of the caregiver. This article will highlight the importance of social support on patient and caregiver outcomes, and second, review studies on family caregiving among heart failure patients. Recommendations for nursing practice and further research will be discussed.
Mr R, a 63-year-old married business owner, experienced worsening dyspnea one evening that necessitated a 9-1-1 call for emergency assistance. He was admitted to a nearby hospital and treated for pneumonia and acute heart failure (HF). His EKG showed evidence of an old myocardial infarction (MI). Later that week he had a cardiac catheterization. Results showed an ejection fraction (EF) at 30% and moderate vessel disease. He was started on the usual HF medications of digoxin, lasix, and angiotensin-converting enzyme inhibitor, and nitrates. He was instructed to quit smoking and begin a low-sodium diet. His condition stabilized and he was discharged home to follow-up with his primary care physician and a cardiologist in 1 week.
Mrs R, age 62 and housewife, called 9-1-1 for Mr R and followed the ambulance to the hospital. She notified the couple's 4 children. She rarely left the hospital that week except when their children or his coworkers visited. Mr R was less anxious having her there. She drove him home from the hospital and picked up his prescriptions from the pharmacy. For the next few weeks she left their home only to take Mr R to his follow-up appointments. She gave him his medications, cooked, cleaned, and assisted Mr R with simple activities. The children visited and called often. They assisted with household chores. One son was of much relief to Mr R by temporarily overseeing Mr R's business. Mrs R did forget to take her antihypertension medication on 3 occasions and did not participate in her usual exercise classes with friends.
Mr R returned to work after a 1-month recovery and Mrs R resumed her regular activities. Mrs R bought a day-by-day pillbox and prepared it for Mr R on a weekly basis. Mr R quit smoking and has been compliant with his medications, diet, and all follow-up appointments with his physicians. Mrs R is exercising regularly again, spending time with her friends, and remembering to take her medications. She worries about her husband and what the future may bring. Mr R feels good but easily tires with moderate activity, such as stair climbing. He wants to start smoking again but says he will not for the children.
Heart failure is a complex and daunting syndrome for the patient, the patient's family, health care providers (HCPs), and our health care system. Billions of Medicare dollars are spent annually on HF management, with an estimated $5471 per discharge. 1 Hospitalizations for HF have increased by 155.2% since 19791 with as many as half considered preventable. 2 Readmission causes may be related to failure to meet criteria for discharge by HCPs, 3 ineffective patient self-management, 2,4 and lack of social support. 5,6 A recent study found readmissions to be just as common for those with EF less than 50% than those with EF less than 40%. 7 This finding suggests disease severity as an unreliable indicator of readmission.
The numbers of those diagnosed with HF will continue to rise, with 550,000 new cases each year, 1 mostly because of age-related changes in an already aging population and more survivors of stroke and MI.8 Twenty-two percent of male and 46% of female MI survivors will experience moderate HF within 6 years of their MI. 1 Despite advances in technology, improved pharmacological therapies, and patient education, HF remains a progressively debilitating illness for many patients and their families. Therefore, high priority should be placed on the patient and family caregiver's views on the problem. 4,9-12
Mr R is one of about 4,790,000 Americans living with HF today. 1 For 63 years, Mr R has experienced only 5 other medical procedures, a cholecystectomy for himself and the births of his 4 children. He smoked cigarettes since he was 16. He has never been on a special diet. His life now depends upon his ability to self-manage his disease and make major lifestyle changes. Statistically, 80% of men diagnosed before the age of 65 die within 8 years. 1
Self-management is a strategy that is essential in the management of HF. 13-16 Much research has been done on assessing and predicting self-management of patients and on numerous intervention and educational techniques to assist patients to self-manage their illness. Teaching patients to adjust diuretic dosages based upon daily weights is one such example of self-management.
Mr R has had a successful recovery thus far. The caregiving provided by Mrs R must not go unnoticed. Mr R has been self-managing with the support of family. Without effective self-management and the assistance of a family caregiver, HF will progressively debilitate the patient and the family caregiver. The patient's family caregiver is a vital factor in disease management as well as the patient's quality of life. 9-12 It is the patient and the family caregiver who together greatly affect outcomes.
Family caregiving among HF patients has not been well studied. Karmilovich 9 conducted the first of its kind on spouses of HF patients. Since then only 4 studies were identified in the literature that describe outcomes related to caregiving in this patient population. Only recently has social support been studied as a variable related to HF patient outcomes. Because the social support of HF patients is most often reported as that of the spouse and the spouse is most often reported as the primary caregiver in HF caregiving research, 9,10,17,18 it is beneficial to review social support literature. Therefore, caregiving is broadly defined as the emotional and/or physical support given to a HF patient by a family member.