EXECUTIVE SUMMARY

Family caregivers need better training and support. This is especially important since the United States is facing a growing deficit of caregivers.

  • As cancer treatment becomes more complex, family caregivers are called on to assume more responsibilities of care.
  • Research shows patients experience better outcomes if their caregivers are more confident.
  • Case managers can link caregivers to further education and training.

As the influence of value-based care increases, healthcare providers are learning that training and supporting family caregivers is crucial to patients maintaining optimal health.1

Recent evidence suggests the United States is facing a growing deficit of caregivers. As the need for this community support grows, there are not enough people to provide that care. As baby boomers age, the pool of caregivers will shrink.1-3

The results of a new study show providers can train family caregivers of patients with cancer by using a simulation-based intervention for care.4

“Family caregivers of individuals with cancer are essential to the caregiving team for the patient,” says Susan Mazanec, PhD, RN, AOCN, FAAN, assistant professor at Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland and nurse scientist at University Hospitals Seidman Cancer Center. “As cancer treatment is becoming more complex and is delivered increasingly on an outpatient basis, the family caregivers are being asked to assume more and more responsibilities for care.”

As caregivers become increasingly important members of the cancer care team, they are asked to take on more responsibilities, says Sara Douglas, PhD, RN, Gertrude Perkins Oliva professor in oncology nursing and assistant dean for research at Case Western Reserve University.

“Caregivers are, at times, asked to provide physical care, but they are also important in providing emotional support throughout the trajectory of the illness,” Douglas says. “Research is demonstrating that providing caregivers with information, skills, and emotional support leads to increased confidence by caregivers in the variety of aspects of care and support that they provide.”

Increased confidence improves caregivers’ psychological outcomes and can increase quality of care for patients. For instance, patients with dementia visit the ED less often when their caregivers demonstrate greater efficacy and confidence and less depression.5

“It is vital for healthcare providers to ensure family caregivers have the information, education, and emotional support they need to enhance their confidence and ability to provide support and care to their loved ones with cancer,” Douglas says.

Caregivers Might Feel Unprepared

Family caregivers help patients with basic activities of daily living, such as dressing and bathing. They often are responsible for communicating with the healthcare team and other family members about the patient’s progress. They also can function as an advocate for the patient.

“They may be asked to monitor for signs and symptoms in terms of toxicities from cancer treatments,” Mazanec says.

Family caregivers might be asked to help with tube feeding, monitoring for infection, and assessing patients’ skin and helping them manage a dressing or a tube.

“What is astonishing in this report is that about 43% of those caregivers performing those tasks felt they were doing it with very little preparation,” Mazanec says.1 “Cancer caregivers are reporting unmet caring needs. They weren’t being trained as fast as they needed.”

Case managers and other providers can help train caregivers. Researchers are studying a simulation-based intervention for efficacy.4

“This study is in progress and is not complete,” Mazanec says. “We are testing the efficacy of this intervention as compared to usual care.” The study intervention suggests tactics for enhancing caregiver training.

Case managers can help link caregivers to further education and training, or send them back to the clinical team for more intensive training. Ideally, case managers or nurses will conduct a caregiver assessment at the beginning of the patient’s care. This provides a better understanding of the relationship between the recipient and caregiver, as well as the caregiver’s ability and confidence.

“Recognizing caregiver distress, anxiety, and acknowledging the caregiver and the role that they play is important,” Mazanec adds.

Case managers should understand the relationship between the caregiver and the patient. If the caregiver is feeling distress or anxiety in this personal relationship, it can manifest itself in the patient’s mood as well, Mazanec notes.

“What some studies have shown is that if we’re helping the caregiver, we can also improve patient outcomes, particularly related to pain and symptom management,” she says. “That’s really why this is important; it goes beyond the caregiver, and we can impact patient outcomes.”

As cancer is increasingly seen as a chronic illness, the caregivers’ role is becoming more important than ever for the healthcare community. “Caregivers are expected to provide services and support that were [delivered] by healthcare providers in the past,” Douglas explains. “The delivery of healthcare services to cancer patients has become more complex over the years with the advent of new therapies and increased numbers of persons diagnosed with cancer each year.”

If the United States healthcare system’s goal is to provide the most holistic care for persons with cancer, it will have to rely on caregivers to continue to play a vital role in the delivery of high-quality care, Douglas adds.

Researchers note numerous support people are taking care of patients and family caregivers during cancer treatment. These include case managers, nurses, social workers, dietitians, and spiritual care providers.1

“So often they’re mostly focused on the patient,” Mazanec says. “We are trying to test this intervention as an addition to that usual care to see if it’s effective.”

Data and research suggest healthcare professionals need to recognize and engage caregivers as members of the team. “Ask them about their experiences and challenges,” Mazanec explains. “We also need to screen for caregiver distress.”

Case managers and other providers also should assess caregivers’ needs and find out what is burdensome to them. “We just have to offer support,” Mazanec says. “We need to listen to them and tell them that they are doing as good a job as they can, and we need to offer them training.”

Caregiver training should occur throughout a patient’s disease trajectory because the caregiver’s needs will change as the patient moves through their cancer or other disease experience.

“We also need to remember that there are services in many communities to help caregivers and we need to let them know about those services,” Mazanec adds.

REFERENCES

  1. AARP Family Caregiving and National Alliance for Caregiving. Caregiving in the U.S: 2020 report. May 2020.
  2. Intriago J. Caregiver shortage in demand and supply of caregivers strains families. Senior Matters. Updated May 17, 2021.
  3. Davenport C. What the senior caregiver shortage means for the eldercare industry. American Healthcare Journal. Oct 30, 2020.
  4. Mazanec SR, Blackstone E, Daly BJ. Building family caregiver skills using a simulation-based intervention for care of patients with cancer: Protocol for a randomized controlled trial. BMC Nurs 2021;20:93.
  5. Guterman EL, Allen IE, Josephson SA, et al. Association between caregiver depression and emergency department use among patients with dementia. JAMA Neurol 2019;76:1166-1173.