As ‘crucial piece’ of cancer experience, caregivers often require emotional, social support

Cancer affects not only the patient, but also family and friends who care for that person.

Caregivers may face emotional, social and spiritual issues that are sometimes unintentionally overlooked during the diagnosis and treatment process.

Veronica Cardenas

Although it is common for caregivers to neglect their own needs, taking the time to recharge is a vital component of the caregiver’s emotional and physical well-being.

HemOnc Today spoke with Veronica Cardenas, PhD, licensed clinical psychologist and assistant clinical professor of psychiatry at University of California, San Diego, School of Medicine and leader of the cancer caregiver education and support group at Moores Cancer Center at UC San Diego Health, about how cancer caregivers can maintain balance and manage their own stress.

Question: It may be common for caregivers of patients with cancer to be overlooked during the treatment and follow-up care of their loved one. How important is it for caregivers to also receive support during this time?

Answer: It is extremely important. Cancer caregivers are going through the cancer experience, as well, and it can be just as concerning and frightening for them as it is for the patient. The experience can be filled with many emotions for caregivers, including a sense of helplessness. It is important that caregivers understand what their specific role is and have an outlet to express what they are going through because it is not just about the patient. Everyone who is around the patient is affected. It is important for caregivers to not be left out of care.

Q: What exactly does Moores Cancer Center's weekly support group offer cancer caregivers?

A: Our group meets every Tuesday for an hour and a half, but we will be switching to a bi-weekly model starting in January. We offer a space for all different types of caregivers to come together — friends, parents, siblings, children and grandparents of patients. Although the relationships may differ, they experience some of the same emotions and want to know how they can be supportive of their loved one and also be able to express what they are going through in a safe and confidential space. Our groups include an educational and skill-building piece. We select topics beforehand as a theme for the week. These topics vary, from identifying signs of caregiver stress and burnout to understanding how best to support loved ones, and learning to prepare and organize for doctors visits. The common piece throughout every group meeting is learning how to take care of yourself through the caregiving process. It is important for caregivers to not give up their essential self-care needs, such as eating and sleeping well, and to ensure they are exercising when they can and are staying connected to their social networks and doing things that they enjoy. Although these things will shift, it is important not to give these things up. We emphasize the self-care piece in every group meeting. Once a month we have a group session called Tea for the Soul, which is an open group where people come and process what they are thinking and feeling that week while drinking a soothing cup of tea. A lot of times, caregivers come with specific questions about treatment and recovery, and a lot of times other caregivers who are at the group meeting will share their experience with how they got through the different phases. I am usually there to facilitate the conversation and will sometimes chime in on information related to this. We also try and incorporate relaxation exercises to build the skill of self-care and stress-reducing strategies.

Q: What are some suggestions of ways for cancer caregivers to manage their stress and maintain their balance through the process?

A: Caregivers taking care of themselves is not a bad thing. In fact, doing this is a way of caring for their loved one. Depending on what the cancer treatments involve, for many it will be a year or several years, so we say that you have to think of it as running a marathon. You don’t want to overdo it so much in the beginning that you burn out and therefore are not able to care very well for your loved one throughout the entire process. It is important to learn to pace yourself from the beginning and think about how others can help you. For example, a class that we offer is learning how to ask for help when needed and how to receive help when it’s offered to you. Caregivers often get inundated with offers of help from other family members and friends, but sometimes certain thoughts and feelings — such as fear of burdening others — can act as a barrier to receiving these offers. We teach caregivers how to use assertive communication to ask for help. We push the idea from the beginning that you can care for your loved one all by yourself, but there can be more consequences this way such as caregiver burnout. Caregivers may come into all of this with their own comorbidities, or they may even develop medical conditions because of caregiver stress and they will neglect their own medical check-ups and follow-up appointments. We reiterate the importance of caregivers taking care of themselves and not neglecting their own health.

Q: Should support be institutionally based only with a physician or therapist, or does support from other family and friends work just as well?

A: Any and all support a caregiver can receive can be beneficial, and having multiple sources of support increases the chances that all of their needs are met. I have caregivers who attend our group sessions and they also have a group of friends where they talk about the same issues, but maybe the discussion is different in how they express their emotions and what kind of information is exchanged. We educate caregivers on how support comes in many different ways, such as people running errands for them or making phone calls for them. Then there is emotional support, which consists of those people who listen and encourage you and express positive things to you and demonstrate warmth when you need it. Then there is the informational support, where you are pointed given useful information or pointed in the right direction on matters that can improve the cancer experience. Knowing from whom and from where to receive these types of supports is important. There are some caregivers who have support groups at their churches or with spiritual groups where they receive spiritual support, which to some is also valuable.

Q: Should all cancer treatment centers include programs/groups for caregivers?

A: Many cancer centers provide this support, but not all do for various reasons. Some centers may not have the funding, personnel or space to support a caregiver program despite knowing how important this service is. We offer our caregiver services at Moores Cancer Center via our patient and family support services and welcome caregivers from other cancer centers to join our group sessions.

Q: Some caregivers may not think that they need support and prefer the focus remain on their loved one with cancer. What would you say to these caregivers?

A: I would say to them that they are in this, too, and they are an extension of their loved one. They may be attending many medical appointments with the patient and therefore needing to take time off from work or canceling other activities that are part of their normal routine. It is true that there are moments when a lot of time and attention will be on their loved one, but there are also times when it will be important for caregivers to do the same for themselves. This could happen when their loved one is taking a nap after chemotherapy treatment, giving the caregiver a chance to go exercise or have lunch with a friend. Thinking differently about how caregivers can maintain self-care in their lives is associated with better outcomes. We know that caregivers who are intentional about caring for themselves throughout the cancer experience tend to be less stressed, less depressed, and less angry or resentful.

Q: When should a cancer caregiver support group be brought up? Who should raise the subject?

A: Caregivers should be informed about cancer caregiver support groups right from the very beginning when their loved one is diagnosed. Most caregivers in the beginning do not think that they need group support, but this information should still be provided in case caregivers change their minds or notice they need it later. For those caregivers who may not be as group-oriented and prefer more one on one, our cancer center offers individual sessions via our patient and family support services.

Q: Do you have any final thoughts on this subject?

A: I find working with cancer caregivers to be incredibly satisfying. As much as I enjoy working with our patients, caregivers often teach me as much as the patients do about the experience. Being able to witness a caregiver’s resiliency and personal growth as they care for their loved one is very rewarding. Caregivers are a crucial piece of the cancer experience, so they should be included and cared for, as well. If a physician cannot do this themselves, they can point caregivers to existing services designed to provide them this attention. – by Jennifer Southall

For more information:

Veronica Cardenas, PhD, can be reached at University of California, San Diego, Moores Cancer Center, 3855 Health Sciences Drive #0658, La Jolla, CA 92093-0658; email: vcardenas@ucsd.edu.

Disclosure: Cardenas reports no relevant financial disclosures.