New treatments and interventions mean more and more people are surviving cancer, but most need ongoing emotional, physical and psychological support.
The same can be said for their loved ones, who often see their role in the family transformed from the point of diagnosis onwards.
Here are our top five considerations for patient advocacy groups and healthcare organizations looking to develop cancer survivorship programs for care partners.
Identify unmet needs
There is no one-size-fits-all approach to supporting cancer survivors – and the same is true for their caregivers. Understanding the specific challenges caregivers face is the first step to providing a valuable service.
The American Cancer Society (ACS) recommends working with caregivers to understand their needs from diagnosis onwards.
“Caregivers often say that they have persistent unmet psychological, medical, financial, and daily activity needs throughout the survivor’s cancer treatment and beyond. Studies show their needs are most prevalent within two years of the patient’s diagnosis, but they may continue to have needs for up to five years,” says Catherine M. Alfano, PhD, Vice President of Survivorship at ACS.
Support to join the healthcare team
When somebody becomes a care partner, their role in the family transforms. They often become a member of their loved one’s healthcare team.
They may take on health-related responsibilities, such as giving medications and managing side effects, or taking notes during appointment and reporting problems to the healthcare team.
Care partners tend to become experts in their loved one’s condition, but they need education and support to do that.
Caring for a cancer patient and survivor is an emotional rollercoaster. Dealing with anger, anxiety, fatigue and depression while trying to put someone else’s needs first isn’t easy.
Many survivorship programs will offer some form of emotional support for care partners. That might be face-to-face therapy, advice on coping mechanisms or educational resources.
It’s not just healthcare tasks that care partners take on when a loved one has cancer – health insurance, financial and legal matters will all need to be dealt with too.
When caring for a spouse, partner, or child who has survived cancer, the costs of health insurance, treatment, and transportation to follow-up appointments can cause financial strain. On top of that, juggling work and caregiving can be tough, as people may need to take time off for appointments or just to help with day-to-day tasks.
Survivorship programs can signpost care partners to relevant legal protections support services and offer advice on dealing with processes such as health insurance claims.
Being a care partner can be an isolating experience. Lots of people say just being able to talk to someone who understands what they are going through can make a huge difference.
Some advocacy groups and healthcare organizations meet this need by offering peer support programs for caregivers.
Prostate cancer group Us TOO, for example, hosts women-only conference calls for the wives and female partners of men living with prostate cancer.
Just like we need to start early learning about survivors’ needs, “we need to understand what informal caregivers need from diagnosis forward,” Alfano finishes. “They need that support to give the best care to the survivor they support and to keep themselves healthy.”
American Cancer Society (March 8, 2019). Cancer survivor blueprint aims to improve the lives of both survivors and caregivers. https://www.cancer.org/latest-news/cancer-survivor-blueprint.html
Change Together. Supporting prostate cancer groups (Sept 28, 2018) https://www.changetogether.com/oncology/supporting-prostate-cancer-support-groups