Findings from a new study, known as ENABLE III, demonstrate the benefits of a specific palliative care phone-based support program for caregivers of patients with advanced cancer.
The findings suggest that the earlier the palliative care services can be introduced to care-givers, the better they will be able to cope with the care giving experience. “Family care-givers are a crucial part of the patient care team.
Because the wellbeing of one affects the wellbeing of the other in a reciprocal way, both parties benefit when care-givers receive palliative care,” said senior study author Marie Bakitas, DNSc, Marie L. O'Koren Endowed Chair and Professor at to The University of Alabama at Birmingham (UAB) School of Nursing.
“We found that when care-givers began receiving palliative care support around the time of the patient’s advanced cancer diagnosis, they had less depression, perceived themselves to be less burdened by performing care-giving tasks, and had better quality of life.”
In this federally funded study, one of the first to use a patient and caregiver palliative care intervention in parallel, 207 patients with recurrent or metastatic cancer and 122 family caregivers received palliative care support via a phone-based intervention.
One group of patients and family care-givers started receiving this intervention within two weeks of randomisations (immediate group) while another group started 12 weeks later (delayed group).
The current analysis assessed the benefits only for care-givers.
After enrolment and an in-person assessment, advanced practice palliative care nurses delivered a phone-based curriculum (Charting Your Course) and provided monthly supportive care follow-up to care-givers and patients by telephone.
The curriculum covers how to manage problems using creativity, optimism, planning, and expert information; self-care including healthy eating, exercise, and relaxation; how to effectively partner with care recipients in managing symptoms; how to build a support network; and decision-making, decision support, and advance care planning.
The Charting Your Course curriculum was developed for the purposes of this research study, and it is publically available.
Telephone delivery of the program simplified access to the support for caregivers in rural areas.
Researchers found that the caregivers’ overall quality of life, depression, and demand burden were all improved in the immediate group vs. the delayed group.
Early intervention had a large effect on decreasing depression, and small to medium effect on improving quality of life and decreasing perceived burden of care giving.
“Unfortunately, the full range of palliative care services are rarely taken advantage of because palliative care is often introduced too late in the course of cancer treatment,” said Dr. Bakitas.
“Patients and care-givers should understand that palliative care is not end-of-life care but rather an extra layer of support that can be offered along with curative medical treatments.” ￼￼￼￼￼￼￼￼￼￼￼￼￼
Palliative care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness.
By definition, it is a partnership of patient, medical specialists, and family, with the goal of improving quality of life for both the patient and the family.
There are few organised palliative care programmes for caregivers of patients with advanced cancer, and reimbursement for this type of counselling is very limited.
An online family care navigator tool from the Family Caregiver Alliance’s National Center on Caregiving website may help family givers find assistance in their local area.