By Marni Amsellem, PhD., clinical psychologist and research consultant to CSC
Caregivers play a critical role in the treatment, support, and recovery of individuals with cancer, yet often times, their emotional and informational needs get overlooked. Caregivers have such a meaningful role in cancer care, and it is important to recognize and address their needs. These needs vary based on the health of the care-recipient, the physical and emotion needs of the recipient, the resources of and the demands on the caregiver, as well as the family or relationship dynamics.
At the Cancer Support Community, meeting the needs of caregivers is a core part of what we do. Our mission is “to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community.” The resources provided on our website, through radio programs, and from services and programming offered throughout our affiliate network nationwide are developed with caregivers in mind. In our Frankly Speaking About Cancer (FSAC) psychoeducational workshops, roughly one quarter of attendees are loved ones of cancer patients who attend workshops to both support their loved ones and to learn more about the workshop topic themselves as caregivers.
One ongoing FSAC workshop that has a higher than average number of caregivers who attend is the Lung Cancer workshop. Because of the high level of caregivers who attend this workshop, we were able to take a closer look at exactly what the psychosocial needs and help-seeking patterns are for caregivers. We analyzed data and presented it at a national cancer education conference.
In 2012-13, 684 patients and caregivers who attended a FSAC: Lung Cancer psychoeducational workshop answered questions about how they seek information about lung cancer and where they turn to for emotional support. Of these attendees, 51.2% had been diagnosed with lung cancer, and 48.8% were caregivers of those with lung cancer. Of the caregivers, 41.3% were spouses of those with lung cancer, 42.8% were other family members, and 15.9% were friends. Similarities and differences between how patients and caregivers seek and utilize various types of support are described below.
There are similarities, generally-speaking between how individuals with lung cancer and those caring for them seek emotional support to help them cope with cancer. They are equally likely to seek emotional support via patient support organizations (such as the CSC), through religion or spirituality, by going online, and by participating in support groups. Differences in seeking emotional support were also reported. Notably, patients were more likely than caregivers to have received emotional support from other patients. Also, more patients than caregivers (nearly half v. 17.5%) were currently in a support group. Similarly, more patients than caregivers had previously attended a psychoeducational workshop, this being the first psychoeducational workshop for by 70.5% of caregivers and 56.9% of patients.
Furthermore, we found several differences between individuals diagnosed with lung cancer and their caregivers in how they sought cancer information. Patients were more likely to seek information from healthcare team as well as from other lung cancer patients, compared with caregivers. Conversely, lung cancer caregivers were more likely than patients to seek information from both the Internet and family or friends, and this was actually the first place they sought information.
All workshop attendees (both patients and caregivers) reported significant gains from attending the workshop in terms of communicating with the healthcare team about lung cancer, treatment decision-making, and general knowledge about lung cancer. Program evaluations indicate that most attendees would recommend this workshop to others facing lung cancer.
Whether patient or caregiver, all who are affected by lung cancer have significant informational and emotional needs and are actively seeking out support. Increased understanding about how services are being utilized can then inform supportive service availability, delivery, and content.
As caregivers’ needs to not always receive the attention they should, it is particularly important to be mindful of these findings in order to better understand their experience and meet their needs going forward.
If you would like to share your experiences as a patient or caregiver, consider joining our Cancer Experience Registry, where you can share your cancer journey with other patients and caregivers.