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(Editor’s note: This is the first of a two-part series that examines family caregiver issues such as education, stress, burnout, and support. In this article, experts talk about the educational needs of family caregivers and how a home health nurse can recognize caregiver burnout. In next month’s issue, different programs to support caregivers and different approaches to offering care to home health patients will be discussed.)
Half of the population in the United States will have a chronic illness in 2020, a total of 157 million people, according to a study conducted by the Rand Corporation in 2000.1
But home health agency managers don’t have to wait 17 years to see that patients with chronic conditions make up a big part of their business today. Caring for patients with chronic conditions requires planning, patience, and careful evaluation of both the patients’ conditions and the family caregivers’ competence and emotional condition, say experts.
The first thing a home health nurse can do to make sure the patient has the best chance for progress is to educate the family caregiver and the patient thoroughly and effectively, says Rochelle Nelson, RN, BSN, clinical education coordinator at the Kenosha [WI] Visiting Nurse Association. "Most of our patients are elderly with multiple illnesses, and their family caregivers are also older adults," she says. "Older people respond to teaching methods that rely upon repetition, visual demonstration, and teaching sheets that can be used after the nurse leaves," she says.
The more technical the care, the more difficult the teaching, points out Nelson. "Although the percentage of patients requiring IV therapy, wound care, and tube-feeding is low, the caregivers for these patients are often the most reluctant to learn day-to-day care," she says. "I often hear a caregiver say that he or she didn’t go to medical school, so how can we expect him or her to handle this," she adds.
Even with care that’s not as technical, such as insulin injections and blood glucose tests for diabetic patients, it is essential that the home health nurse let the patient and caregiver know that they won’t be abandoned after one training session, says Nelson. "Reassure both the patient and caregiver that you’ll be teaching and reviewing at every visit," she says.
If your patient’s family caregiver is not with the patient all day long, be sure to schedule visits on evenings and weekends so you can evaluate the caregiver’s understanding and offer extra teaching, Nelson suggests. "If you have a willing and able family caregiver, it’s important for you to be flexible and adjust your schedule."
Videos and printed materials are essential teaching tools, Nelson says. "We don’t use computer programs or information on the Internet because many of our patients and their caregivers are not computer-literate." Practice materials such as cushions on which to practice injections are also helpful, she adds.
To make sure your patient and family caregiver understand the teaching, the nurse should demonstrate, and then watch as the caregiver performs the task, Nelson says. "Praise the positive, then offer a suggestion on an easier way to do something else."
If you notice the patient or caregiver getting impatient or frustrated, back off of the teaching and just say, "That’s enough for today, let me finish with this and we’ll go over it again next time," she says.
Watching for frustration or emotional changes in the caregiver is another important ongoing responsibility of the home health nurse, says Nancy Stallings, MAM, program manager for caregiver support for Salt Lake County Aging Services in Salt Lake City. "Caregiver burnout usually occurs with people who are caring for family members with chronic conditions and the onset of or increase in dementia," she says. "It is essential to identify the onset of burnout early so that support can be found for the caregiver," she adds.
Caregivers who have not shown any signs of stress may do so as a response to major changes in the patient’s condition (such as incontinence) or behavior (such as resistance to taking medications), says Stallings. "The home health staff member should ask the caregiver about the changes in a way that doesn’t make the caregiver defensive," she says. Examples of questions include: "I’ve noticed that she doesn’t want to take her medications when I give them. Does she resist when you give them also?" or "She seems sleepier than normal. Is she sleeping through the night?"
Questions that focus on the patient’s changes give the caregiver a chance to tell the nurse how much more time or effort is required to provide care, says Stallings. This opens the door for the nurse to ask, "How are you doing? Are you getting enough rest?"
Remember that most family caregivers are unwilling to admit weariness, frustration, or defeat, says Stallings. "Elderly spouses see their role as caregiver as part of their marriage vows and don’t want to admit that they can’t care for their spouse," she says. "We also have to remember that they identify themselves as a caring spouse, so if they admit they can’t care for their spouse, who are they?" she adds. This means that it is up to home health personnel to identify the signs of caregiver burnout, says Stallings.
Keep questions conversational and focus on the patient, suggests Stallings. Saying "Tell me more about his refusal to take medication" is less confrontational than "What do you do to get him to take medications?" she points out.
Be sure to continue giving information that helps the caregiver, says Stallings. "Education about safe transfer of the patient from the bed to a wheelchair, care of an incontinent patient, and proper administration of medication should be ongoing," she says. Assessment of the caregiver’s knowledge also should be ongoing, she adds. Don’t assume that just because the caregiver has been providing care for a long time, he or she is comfortable with everything that needs to be done, she adds.
Acknowledge that you realize what a commitment the caregiver has made, Stallings says. "You can say that you know the caregiver has been doing this for four years, then ask what do they need to help them," she says. Caregivers often give up hobbies, time to themselves, and even visiting neighbors or friends as the patient’s condition deteriorates, she adds. "Find out what type of support the caregiver needs to get a break," she says.
1. Wu S, Green A. Projection of Chronic Illness Prevalence and Cost Inflation. Santa Monica, CA: RAND Health; 2000.