Family caregivers play a crucial role in providing palliative care. However, numerous studies have shown that the Quality of Live of family caregivers may be negatively impacted. They may suffer from both reduced emotional functioning as well as a generally lower quality of life compared to that of the general population. While the number of studies looking at family caregivers, studies have shown that especially female caregivers have lower functional values and stronger symptoms of insomnia, fatigue and pain compared to male caregivers.[1]
Findings from a study known as ENABLE III, a randomized clinical trial, supported by the National Institute of Health (NIH), that evaluates a phone-based palliative care intervention designed to improve quality of life, mood, and symptom management for patients with an advanced stage cancer and their caregivers, demonstrates the benefits of a specific palliative care phone-based support program for caregivers of patients with advanced cancer.[2][3]
Improving the mental health and well-being of the caregiver is an essential component of good palliative care
The findings suggest that the earlier the palliative care services can be introduced to caregivers, the better they will be able to cope with the caregiving experience. The study results were presented at the 50th Annual Meeting of the American Society of Clinical Oncology(ASCO), being held May 30 – June 3, 2014 in Chicago, Ill.
Care-team
?Family caregivers are a crucial part of the patient care team. Because the well-being of one affects the well-being of the other in a reciprocal way, both parties benefit when caregivers receive palliative care,? said senior study author Marie Bakitas, DNSc, Marie L. O’Koren Endowed Chair and Professor at the University of Alabama(UAB) School of Nursing in Birmingham, AL. ?We found that when caregivers 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 caregiving tasks, and had better quality of life.?
Benefits for caregivers
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 caregivers started receiving this intervention within two weeks of randomization, called the immediate group, while another group, called the delayed group, started 12 weeks later. The current analysis assessed the benefits only for caregivers.
After enrollment and an in-person assessment, advanced practice palliative care nurses delivered a phone-based curriculum (called “Charting Your Course”) and provided monthly supportive care follow-up to caregivers 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.
Overal Quality of Life
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 caregiving.
Not end-of-life care
?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,? Bakitas noted. ?Patients and caregivers 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.?
Partnership and Relief
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.
Limited reimbursement
There are few organized palliative care programs for caregivers of patients with advanced cancer, and reimbursement for this type of counseling is very limited. An online family care navigator tool from the Family Caregiver Alliance?s National Center on Caregivingwebsite may help family givers find assistance in their local area.
Patient outcomes from the ENABLE III study will be presented separately (abstract #9512).
Supporting family caregivers
?This innovative study demonstrates the need for supporting family caregivers during their loved one?s illness, and the specific benefit of initiating this support sooner than later,? noted Patricia Ganz, MD, FASCO, ASCO Expert and director of Cancer Prevention and Control Research at the Jonsson Comprehensive Cancer Center, University of California, Los Angeles, CA. ?Improving the mental health and well-being of the caregiver is an essential component of good palliative care.?
For more information:
[1] Perner A, K?hler N, Br?hler E, G?tze H. Quality of life and satisfaction of family caregivers in palliative care – results of postmortem interviews with bereaved family members Z Psychosom Med Psychother. 2012;58(3):267-81.[Article][PubMed]
[2] Dionne-Odom JN, Azuero A, Lyons K, Li Z, Tosteson T, Li Z, Hull J, et al. Benefits of immediate versus delayed palliative care to informal family caregivers of persons with advanced cancer: Outcomes from the ENABLE III randomized clinical trial. 2014 ASCO Annual Meeting. Clinical Science Symposium. Tuesday June 3, 9:45 AM to 11:15 AM. Abstract No: LBA9513. Citation: J Clin Oncol 32:5s, 2014 (suppl; abstr LBA9513)[Abstract]
[3] NCT01245621 – Study of Palliative Care Intervention for Advanced Cancer Patients and Their Caregivers -Educate Nurture Advise Before Life Ends (ENABLE III) [Study Record Detail]
Photo: Marie Bakitas, DNSc speaks at the 50th Annual Meeting of the American Society of Clinical Oncology Annual Meeting (ASCO). Photo Courtesy: ?ASCO/Scott Morgan.
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