Last year, Linda started noticing unexplained weight loss, night sweats, and itchiness. She initially thought she was just getting some late menopausal symptoms. When the symptoms persisted for a few months, her husband insisted that she talk to her doctor. Her gynecologist referred Linda to an oncologist, and within the month, Linda was diagnosed with stage-3 non-Hodgkin lymphoma.
As Linda’s health and function deteriorated, she was referred to a home health agency for ongoing services. The home health providers requested that her husband attend all treatment sessions. But why?
The Essential Caregiver
The impact of cancer extends beyond the person who has been diagnosed. Caregivers, including spouses, children, and parents, all help provide assistance across the continuum of cancer treatment.
These caregivers are essential for carrying out daily treatments and tasks. The assistance of a trained caregiver improves the quality of life for the person with cancer, but caregivers may lack the necessary confidence and skills required to provide this help, resulting in their own increased stress.1 This makes caregiver training essential.
5 Essential Areas of Caregiver Training
1. Personal Care
Take the time to not only instruct the person with cancer on the most efficient ways to complete their activities of daily living (ADLs), but also teach the caregiver how to assist with these tasks. If a decline in function over time is anticipated, teach the caregiver how to modify and increase assistance with ADLs.
In addition, provide nutrition resources to the caregiver. You can incorporate training in healthy meal preparation into treatment sessions that include both the person and their caregiver.
Teach the caregiver an appropriate home exercise program to help maintain the patient’s physical fitness. This may include strengthening, endurance, and balance to help recover functional skills or maintain the ability to perform functional tasks as long as possible.
3. Instrumental Activities of Daily Living
Instrumental activities of daily living (IADLs) include the functional activities that go beyond personal care. These activities are commonly referred to as “chores.”
You may need to train the caregiver in how to assist with chores such as shopping, laundry, and housekeeping. Initially, you may have the opportunity for the caregiver and the person with cancer to complete these tasks together with a plan to transition more fully to the caregiver or back to the person with cancer as recovery occurs.
4. Physical Support
Physical assistance may be required to help the person with cancer throughout the day. This may include transfers to varied surfaces such as furniture, a bath seat, a bed, and an automobile.
Training should include all required types of transfers. If a decline in function is anticipated, you should discuss the increasing need for assistance and how that should be managed.
5. Emotional Support
Possibly the most important role of the caregiver is emotional support. Discuss with the caregiver how to provide comfort, listening, and active engagement in daily tasks that bring joy to the person with cancer. Encourage socialization with others as available.
Care for Self
In addition to training caregivers on how to care for a person with cancer, you should also train them to care for themselves.
When a plane’s airbags are deployed, adults are always instructed to put theirs on first and then their children’s. They can’t care for a child if they don’t first make sure they are okay. This analogy applies to the caregiver of a person with cancer. Caregivers can suffer from physical and emotional distress when they take on all the extra responsibilities that come with providing care along with the significant changes in their role and their relationship with the person for whom they are caring.2
A holistic approach should be used when teaching the caregiver self-care. Be sure to discuss the importance of and strategies for:
- Maintaining physical activity
- Getting needed rest
- Taking time for spiritual renewal
- Participating in activities that provide stress management
- Joining a peer support group
- Scheduling respite care as needed
The Role of the Healthcare Provider
In addition to considering the needs of the person with cancer, evaluate the availability of caregivers and consider their needs while working to find a match in all of these areas. Provide training not just in physical tasks, such as transfers and body mechanics, but also in the emotional and psychological needs of both the person and the caregiver. Educate the caregiver on how to best provide the patient with assistance both now and in the future.
For more information on providing care across the cancer continuum, watch Dr. Sheila Longpré’s MedBridge courses. These courses offer information not only on caregiver training, but also on cancer survivorship; re-establishing roles, habits, and routines; the impact of cancer on roles, habits, and routines; and how to address sexuality and intimacy.
MedBridge’s Patient Education Library also features numerous resources that are useful for providing caregivers with training in areas such as fall prevention, transfers, energy conservation, and activities of daily living, and surgical precautions.
- Kim, Y. & Given, B. A. (2008). Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer, 112(11 Suppl): 2556–68.
- Lambert, S. D., Girgis, A., Lecathelinais, C., & Stacey, F. (2013). Walking a mile in their shoes: anxiety and depression among partners and caregivers of cancer survivors at 6 and 12 months post-diagnosis.