Caring for the Family Caregivers Made Ill by Their Work

Randomized Controlled Trial Tests an Online Health Coaching Intervention

October 11, 2024

By:

Hoag Levins

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A randomized controlled trial (RCT) led by LDI Senior Fellow Barbara Riegel, PhD, RN, of the University of Pennsylvania School of Nursing has identified a virtual health coaching intervention that helped lessen stress for unpaid family caregivers who often neglect their own care.

Published in Circulation: Heart Failure, the study focused on unpaid family caregivers providing care to adults with chronic heart failure (HF)—a condition that occurs when the heart can’t pump enough blood for the body’s minimal needs. Because the disease has a variety of symptoms and manifestations that limit palliative care and respite services, it places a heavy burden on home caregivers who are “are commonly overwhelmed and face emotional, psychosocial, and financial risks that result in a decline in their own health and wellness.”

The Heart Failure Society of America (HFSA) reports that 6.5 million Americans over the age of 20 have HF and that 960,000 new cases occur annually.

Neglecting Their Own Health

The research team noted that this category of home caregivers manages complex medication regimens, assists with symptom monitoring and response, motivates physical activity, reinforces dietary restrictions, and coordinates health care visits—responsibilities that often cause them to neglect their own personal health and self-care needs.

Researchers also noted that engaging in self-care behaviors has been generally shown to improve mental and physical well-being in patients with chronic illness, but few caregiver interventions have specifically supported the self-care of patient caregivers.

“It’s estimated that more than 37 million people provide unpaid care to older adults such as those with HF,” said Riegel. “In HF, most of the interventions focus on helping the caregivers become more skilled in caregiving. Instead, we focused on helping the caregivers take better care of themselves.”

Adding Health Coaches

The research project tested a six-month intervention using Samsung tablets that enabled members of the two-arm study to connect to the same webpages containing information about heart failure, caregiving, and self-care. Members of the intervention arm were additionally connected to health coaches who engaged them in 10 online, two-way video support sessions focused on caregiving demand, stress, self-care, sleep, thought distortions, automatic thoughts, relaxation techniques, and confidence.

After six months, the coached intervention group significantly improved self-care and stress scores more than those of the web page-only control group. Forty-five percent of the coached group transitioned to a lower stress category, while only 22% of the control group improved in that category.

However, the generalization potential of the findings is not clear given that 62% of the participants were white, 85% were female, 45.8% were college educated, 41.8% were employed full time, and 82.3% were financially secure.

The authors noted: “The intervention may need to be modified to be more focused on equity to minimize attrition and assure accessibility by caregivers who need support.”

Policymaker Takeaways

Asked about what policymakers could take away from these findings, Riegel emphasized that, “The current approach to caregivers is fragmented. State-level public health entities vary in the support and services they provide. Policymakers need to focus on coordinating services for caregivers. As the population ages, more and more family and friends are providing financial, social, and medical support without pay. Without support, caregivers are left with long-standing health and financial repercussions.”