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Integrating caregivers in health planning can assist in managing chronic diseases
Family and friends often serve as “health care supporters” for individuals with chronic diseases, such as diabetes, heart failure, cancer, arthritis and depression, but new research shows that these supporters frequently feel left out by health care providers and wish that they knew more about their loved one’s condition and how to help manage their illness.
The national survey, published in Families, Systems and Health, involved more than 700 adults who helped care for at least one family member or friend with a common chronic disease.
Results from the survey indicate that approximately half of health care supporters discussed medication side effects with their loved one, one-third discussed financial issues regarding medications and three-quarters discussed troublesome symptoms, such as pain. Additionally, many health care supporters (41%) reported feeling like they did not know enough about their loved one’s illness or treatment to help them sufficiently.
Of the 45% of health supporters who did have contact with their loved one’s health care provider, almost half reported not being included in decisions regarding the patient’s health and one-third reported that providers were unwilling to share information with them.
These data suggest a need for health care providers to involve and educate health care supporters more on the management and treatment regimens of patients with chronic conditions to improve outcomes.
Involving health supporters in care
“Unpaid family and friends, called ‘family caregivers,’ often play a key role in the delivery of health care services,” C. Grace Whiting, JD, president and CEO of the National Alliance for Caregiving, told Healio Internal Medicine. “National research has shown that family caregivers help with activities of daily living and medical or nursing tasks like giving injections, managing medications, handling wound care and more.”
Whiting noted that studies have demonstrated that caregivers of patients with dementia and other high-impact disease help these patients receive care at home and in the community and even avoid unnecessary hospitalization.
“In the same way, people who care for someone with chronic disease can improve the delivery of care and provide information to a clinical team or physician on how a disease is progressing,” she said.
To help include family caregivers, physicians can note them in the medical record and provide them with information and training on providing care, she said. Physicians can be reimbursed under current Medicare physician billing codes for training caregivers on chronic care management, according to Whiting.
Addressing stress in caregivers
Research published in the American Journal of Nursing suggests that the health effects associated with caregiving, such as stress, are a major public health issue.
“It’s important for providers to understand what drives caregiver stress,” Whiting said. “About half of caregivers feel they have no choice in taking on the caregiver role and they often face financial, emotional, psychosocial and even spiritual stressors that add to the strain of the disease on the family unit.”
Referring caregivers to evidence-based supports, such as the Chronic Disease Self-Management program from the National Council on Aging, can help reduce stress and also improve outcomes for the patient, she noted.
“Helping a caregiver understand what resources are available, what financial supports may be accessible to the patient and how to provide care and work with clinical teams would go a long way to improving caregiver stress,” she said. “A simple ‘thank you’ to acknowledge the work of the caregiver is a good start.”
Supporting caregivers in management of chronic disease
According to Whiting, only about one-third of clinicians ask caregivers, “What do you need to help take care of this person and what do you need to help care for yourself?” But asking these questions is an effective way to start evaluating gaps in information and supports, she said.
“In general, caregivers don’t need detailed data but they do need to know how to recognize the signs and symptoms that a disease is worsening and the pathway to triage the issue, such as who to call and when,” Whiting said. “Health data needs context for the layperson — if you ask a caregiver to be a partner in monitoring HbA1c levels, you should also spend time explaining the meaning of that measure and when they should act.”
Physicians should recognize that caregivers are often selfless and may not seek help, she said. Furthermore, many health care supporters do not self-identify as caregivers because it tends to alter the way they see their relationship with the patient, she said.
“To say, ‘I am a caregiver’ instead of a just a thoughtful mother or dedicated spouse is hard for many people,” Whiting said.
“Physicians should think about how to draw in family caregivers when they notice the work they are doing to support the patient, rather than waiting for the caregiver to come forward to ask for help,” she added. – by Alaina Tedesco
References:
Lee AA, et al. Fam Syst Health. 2017;doi:10.1037/fsh0000293.
Schulz R, Sherwood PR. Am J Nurs. 2008;doi:10.1097/01.NAJ.0000336406.45248.4c.
Disclosure: Whiting reports no relevant financial disclosures.