Caregiver Program Reflects on Past Successes and Looks to the Future
On Friday, February 8, the UCSF Neuro-Oncology Gordon Murray Caregiver Program met to recognize the program’s major accomplishments of the past year, and discuss plans for the future.
In 2018, the Caregiver Program reached over 300 families, offering support, information, and access to disease and caregiver resources. The program is designed to support family caregivers throughout the trajectory of their loved one’s illness, and is continually refining their services based on input from caregivers.
While every new patient and family meets the caregiver program team at their first visit to the UCSF Neuro-Oncology clinic, the Caregiver Program has also identified key transitions (and known stress points) during which a caregiver might want extra support; these include the onset of new symptoms, disease progression, transition to hospice, and any instances of caregiver distress.
This year, the program reached out over 240 times to offer support and answer questions during these challenging transitions. Families of patients with brain tumors often describe the experience as an isolating one, so access to additional support is critical. In a program feedback survey, one caregiver responded, “It’s nice to know that I can call you without feeling guilty.”
In addition to ongoing services and events, the Caregiver Program is planning to expand their offerings both at UCSF and, thanks to the Christina Capurro Sand Caregiver Fund, at Marin General Hospital. New endeavors include the development of an educational webinar series for caregivers, with topics ranging from stress management to nutrition and wellness.
The Caregiver Program will also continue to share its expertise and resources with collaborators around the world. In the last year, program materials have been shared with institutions like the Barrow Neurological Institute in Arizona. Our materials have even been translated to other languages; Copenhagen University developed a Danish version for their use, and Kwong Wah Hospital in Hong Kong is currently working on a Chinese translation.
Since its inception, the UCSF Neuro-Oncology Gordon Murray Caregiver Program has reached over 1,300 families, and continues to refine their services and offerings. Seeing the positive impact the program has had on so many families, raising awareness and sharing this model for caregiver support remains a priority for the upcoming year.
As one survey respondent said, “While I wasn’t able to use all the resources, it was just the pure idea that I felt we were not alone on this journey with my mom and her disease.”