Proposed Framework for Supporting Caregivers of Patients with Cancer
Caregivers of patients with cancer are tasked with enormous responsibility to facilitate patients’ daily living activities, medical care, social support, and advocacy. Performing these duties is time-consuming, often requiring caregivers to cut back on hours at their jobs, take extended leave, or even quit. In addition, the psychological burden of caring for patients with cancer frequently manifests in stress, depression, and reduced quality of life.
But despite these consequences, caregivers are often not provided with the resources they need to continue supporting patients with cancer. In fact, the majority of cancer centers and clinics do not offer caregiver support programs, in part because of a lack of frameworks regarding which services to offer.
In an effort to fill this unmet need, Leonard L. Berry, PhD, MBA, M.B. Zale Chair in Retailing and Marketing Leadership, Texas A&M University, College Station, and colleagues developed a framework of 4 key categories of interventions—assessment, education, empowerment, and assistance—that will benefit caregivers of patients who are undergoing curative-intent therapy and those who are unlikely to be cured.1
Assess, Educate, Empower, and Assist
The assessment component of the proposed framework involves first identifying the primary caregiver and the other caregivers who will comprise the caregiving circle. Doing so will help to connect everyone in the caregiving network so that they can communicate easily, stated Dr Berry and colleagues.
The caregiver assessment should include evaluating the caregiver’s availability, competency, family dynamics, financial situation, and willingness to give care. In addition, Dr Berry and colleagues recommend measuring caregivers’ changing needs every 3 to 6 months by administering the Caregiver Reaction Assessment or Cancer Caregiving Tasks, Consequences and Needs Questionnaire.
Properly educating and training caregivers about their new role is crucial to successful outcomes, emphasized Dr Berry and colleagues. In fact, cancer centers should consider developing a caregiver curriculum that is customized to individual caregiver’s needs, and doing so should be a shared responsibility among cancer practices, professional cancer and caregiver organizations, and community organizations, especially in regions that lack a large health system.
Other opportunities to educate caregivers may include providing prerecorded educational material while patients and caregivers wait in the physician’s office. Furthermore, connecting experienced caregivers with inexperienced caregivers can help new caregivers better navigate their role.
The proposed framework includes empowerment as one of its components, because empowering caregivers can help them feel confident in performing tasks, responsible for succeeding, and a part of the team. Caregivers are less likely to feel overwhelmed if they feel empowered, underlined Dr Berry and colleagues. Cancer practices can help empower caregivers by proactively including them in discussions with patients and asking for their input.
“Investing in teamwork empowers caregivers by fostering transparency, responsiveness to team members’ needs, open discussion and problem solving, mutual learning and appreciation, and, of course, trust,”1 stated Dr Berry and colleagues.
Providing long-term assistance to caregivers is paramount, and technology can be an effective resource for supporting caregivers’ ongoing needs. For example, YouTube, The eLearning Site, and real-time assistance through mobile applications are only a few examples of how technology can be utilized to assist caregivers.
Other assistance approaches include patient navigation services, which are available off-hours and can help caregivers answer pressing questions, such as clarifying provider instructions or managing transportation difficulties, stated Dr Berry and colleagues. In addition, cancer practices can consider integrating an experienced call-center nurse who is available to help patients and caregivers whenever they need it.
Furthermore, Veterans Affairs centers are a great resource for caregiver assistance, because they offer an array of caregiving services, including support coordinators, peer-support mentoring programs, and in-home skilled nursing care.
Shifting the Focus to Caregiver Needs
Conversations surrounding caregiver needs are lacking, and the focus needs to shift from supporting patient needs alone to supporting patients and caregivers, stated Dr Berry and colleagues. Caregivers are integral to patients’ cancer journey, and meeting caregiver needs will help improve patient outcomes.
Unfortunately, funding caregiver services is currently a barrier, especially in a fee-for-service model, in which caregiver services are not reimbursed, so there is little incentive to provide them.
“A common mistake of corporations is to be blind to invisible, long-term costs while pursuing clearer short-term gains. A cancer practice that ignores the hidden value of caregiver services reduces its short-term costs while raising the risk that the patient will need more-formal, higher-cost services down the road,”1 stated Dr Berry and colleagues.
However, the Center for Medicare & Medicaid Innovation’s Oncology Care Model bundles payments for all provided services, and makes long-term costs more transparent, so providing caregiver services will hopefully become more commonplace in the near future.
“Making the family caregiver an afterthought or a peripheral concern is a missed opportunity in cancer care. It is time to move beyond the concept of merely patient-centered care and place both the patient and the family caregiver at the center of care that benefits all stakeholders in the complex task of serving patients with cancer,”1 concluded Dr Berry and colleagues.
- Berry LL, Dalwadi SM, Jacobson JO. Supporting the supporters: what family caregivers need to care for a loved one with cancer. J Oncol Pract. 2017;13:35-41.