As Healthcare Shifts to Caregivers, Knowledge Matters


With cancer treatment being delivered more in an outpatient setting, the burden of home healthcare has shifted more to family caregivers.

With cancer treatment being delivered more in an outpatient setting, the burden of home healthcare has shifted more to family caregivers.

Family caregivers are no longer just providing custodial care, but more professional care, such as monitoring for potential adverse events, scheduling oral therapy, keeping up with equipment, and managing treatment adherence.

Patricia Geddie, MS, CNS, AOCNS, a clinical nurse specialist at Orlando Health, says there is no universal measure for nurses to assess family caregiver knowledge of cancer-related symptoms. In a past study that assessed caregiver knowledge of pain management, individuals reported that most of their caregiving skills were learned through trial and error and that more assistance from the medical team would be welcome.

In regards to two specific symptoms—fever and dehydration—caregivers may not be knowledgeable enough to know when action is needed, such as calling the medical team or heading straight to the emergency department.

“Seems like in our current healthcare environment, we depend on the family and the patient to call us versus us being proactive and calling them before they have the need and to anticipate their needs,” Geddie says.

"Unfortunately, not all family members are very knowledgeable or skilled to manage those side effects and unfortunately, it ends up in a visit to the ED or an unplanned hospital admission.”

Geddie developed The Nursing Assessment of Family Caregiver Knowledge and Action Tool (NAFCKAT) to help identify a caregiver’s baseline knowledge about potential side effects and to personalize the educational material for the patient and caregiver. Geddie presented the data April 25 at the 40th Annual Congress of the Oncology Nursing Society.

The tool was developed and evaluated in a three-step process, Geddie explained. She researched and developed the format of the questionnaire tool, which was followed up with a reliability study conducted with a group of oncology clinic nurses. Lastly, a validity study of family caregiver groups was conducted, which included factors such as education, gender, prior caregiving experience, and prior cancer experience.

Included in the 10-minute interview were questions geared toward the lay audience, she says, such as: What would a fever look like to you? What would be the appearance of a person who had a fever? How many days would having a fever be a concern? What numbers on a thermometer would concern you? How many times in one day would vomiting or diarrhea concern you?

Not surprisingly, female caregivers had a higher baseline knowledge of fever symptoms than their male counterparts, possibly because of their history of family caregiving, she says. Education levels also played a factor in having a higher baseline knowledge. Nearly all caregivers surveyed had no prior cancer experience.

Almost half of the total sample of caregivers were found to have a fairly high level of knowledge and plan of action for fever and dehydration symptoms, two very common but potentially serious side effects.

“What I found was the fever can be recognized fairly easily,” she says. “And fever is one of the top reasons why some of our cancer patients get admitted to the hospital or emergency room.”

Dehydration, which can be caused by vomiting and diarrhea, is a little more complex, she says, because it’s more difficult to recognize early. Having caregivers diagnose dehydration before it reaches the point of decreased skin turgor and low and dark urine output requires specific education.

“There is no real standard way to deliver that information, and they are usually under stress when they are receiving that information,” Geddie says. “Sometimes it is just a handout, sometimes it can be a little class. But again, how much can that person retain?”

She encourages nurses to begin with learning how much the caregiver and patient already know; assessing their baseline knowledge will allow the nurse to know what to build on during the teaching moment.

“[W]e’re making assumptions if we’re just telling them about side effects and symptom management,” Geddie says. “We’re assuming they already know certain things and perhaps we haven’t assessed their current baseline.”

Geddie hopes her work will eventually be used in the clinic. She envisions the process will help other nurses put together an individualized educational plan for caregivers, but also will determine ongoing follow-up and the frequency of that follow-up. It’s also important to consider that the caregiver knowledge and needs may change over time.

“Maybe they need to be called every day, once a week; maybe there needs to be a referral to home care or other community resources if possible,” she says.

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