As caregivers become more integrated into the health care delivery process for patients with cancer, their own needs should still be focused on pertaining to mental and physical health.
Caregivers of patients with cancer may experience negative impacts on their quality of life due to the lack of support for caring for the needs of their loved one and their own psychosocial needs, an expert said.
“Caregivers want support to address barriers to integrated whole-person care just as patients do,” Melissa F. Miller, senior director of research at Cancer Support Community, said in an interview with CURE®. “Taking the time for self-care, for their own emotional, mental and physical health, is important, as they are managing and carrying on such high level of engagement and patient care and may continue to be for the future.”
Miller and her colleagues conducted a survey for caregivers, and the findings were recently presented at the 2023 Annual American Psychosocial Oncology Society Conference.
She said that as recognition increases to integrate caregivers into the health care delivery process for patients with cancer, which may help caregivers provide support to patients, it may have become more difficult to address the needs of caregivers related to their wellbeing.
In this study, researchers assessed survey responses from 313 caregivers (79% women; mean age, 56 years) on their support roles, the impact caregiving has on their wellbeing and the help they have needed and received.
Of the caregivers in this study, 58% cared for a partner or spouse and 51% were current caregivers. In addition, caregivers provided an average of 10 hours of care per day, six days a week.
Responses from the survey demonstrated that caregivers were fairly to very much involved in talking with patients about cancer/prognosis (90%), providing emotional support (95%), discussing treatment goals/preferences (88%), transportation (77%), household chores (78%), coordinating family support (69%), managing symptoms/side effects (82%) and facilitating patient social activities (65%).
“There’s a really high level of engagement across a variety of areas of support, … particularly around emotional support, treatment decision making and management of symptoms and side effects,” Miller said. “(Those responses were) really descriptive of that.”
Caregivers often wanted help — and received it — regarding symptom/side effect management (67%), understanding cancer (76%) and administering medical care (64%). Despite this, unmet needs persist for caregivers including managing negative feelings (29%), help balancing work/life/family with caregiving (31%), providing patients emotional support (23%) and their own mental health (24%).
“We see that caregivers still do not receive needed support, but it’s especially related to their psychosocial needs and those of their patients,” Miller said. “One of the things that struck me was that our biggest met need … is around understanding the patient’s cancer and prognosis, managing symptoms and side effects and proving medical care. But where we see the greatest unmet need is on balancing caregiving with their work, life, family and managing their own negative feelings, guilt, anger, stress and taking care of their own mental and physical health.”
Between 58% and 67% of caregivers from this study reported that their responsibilities for their loved one has worsened their own sleep, emotional health and energy.
“It drives home the point of the importance of their own self-care,” Miller said.
According to the National Institute of Mental Health, self-care pertains to taking the time to do things that allows a person to live well and improve both mental and physical health. These activities can include regular exercise, prioritizing sleep, a relaxing activity and eating healthy meals, among other things.
Sometimes self-care may be difficult to do for caregivers since it does take time.
“I think self-care is important, so it’s taking the time for their own self-care,” Miller said. “That’s so hard to do because (caregivers) are faced with the needs of the patient. But I think taking the time for their own self-care will enable them to hopefully be in a better place to provide better care for the patient. So their own needs are critical.”
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