By Corrie Pellegrino - October 12, 2023
Cancer is a complex disease. In addition to the physical and emotional journey people embark on after a diagnosis, many patients and caregivers find themselves on a hunt for information. They want to better understand their diagnosis and know what to expect. They also need support.
At Moffitt Cancer Center, the Patient Library helps people find answers to their questions and serves as a hub for information and support. This is a crucial service because studies have shown that low health literacy among patients and caregivers is associated with poorer outcomes in cancer care.
“Our goal is to make information accessible to patients and caregivers, and to have it be very easy to understand,” explained Jackie Beaushaw, supervisor of the Patient Library. This type of education empowers patients and caregivers to better participate in their care.
"Sometimes when people wander into this quiet space, they feel like they can let their guard down."- Jackie Beaushaw, Patient Library Supervisor
The library offers educational materials in both English and Spanish on specific types of cancer and treatment options, as well as access to free resources such as computers, printers and fax machines. The patient and family specialists who work there are also tapped into a wealth of support services at Moffitt and through outside resources.
“Sometimes when people wander into this quiet space, they feel like they can let their guard down. They may just want to talk to somebody and express how they’re feeling,” Beaushaw said. “We’re trained to be active listeners. So sometimes we just listen in support, but sometimes they’ll say something that leads us to suggest certain patient and caregiver resources.”
6 Common Questions from Patients and Caregivers
In recognition of Health Literacy Month in October, Beaushaw and Anne Bidelman, manager of Moffitt’s Patient and Family Advisory Program, shared some of the top questions that patients and caregivers have as they start on their cancer journey:
1. Where should I start when researching cancer?
The Internet is a huge repository of both information and misinformation about cancer. So it’s important for people to seek information from reputable sources. Trusted sources include:
- National Cancer Institute, which includes resources broken down by cancer type as well as information on treatment and managing care
- American Cancer Society, which offers comprehensive information on all types of cancer, treatment options, financial and insurance matters, and other critical topics
- MedlinePlus, which includes educational resources on a range of health topics, not limited to cancer
- Cancer Care, which includes information, publications, clinical trial resources, supportive events and podcasts
- Cancer Support Community, which provides educational information, publications, a free support help line and supportive events
- National Comprehensive Cancer Network, which regularly updates its guidelines with the best approaches to treatment
2. How can I cope, as a patient or a caregiver?
Many people come to the library looking for resources or advice on coping with a cancer diagnosis. Beaushaw recommends:
- “Taking Time: Support for People with Cancer,” a booklet written for people who are newly diagnosed
- “Caring for the Caregiver,” which provides guidance for caregivers on how to care for themselves
3. How should I talk to my children about cancer?
A cancer diagnosis impacts the entire family, and many parents seek advice on how to talk to children about the disease. Recommended resources for parents include:
- “What Do I Tell the Kids?” produced by the Cancer Support Community
- “Fritzy Finds a Hat,” by Scott Hamilton, a book for younger children
- “A Tiny Boat at Sea,” by Izetta Smith, another book for young children
- “My Parent Has Cancer and It Really Sucks,” by Marc and Maya Silver, a book for teens
4. What can I do on my own with nutrition to help with my cancer treatment?
Because cancer treatment can have so many side effects, patients and caregivers often seek help with problems eating. The National Cancer Institute’s “Eating Hints” booklet provides information on managing eating problems and tips on how to eat well before, during and after treatment. The booklet also includes recipes.
5. What should I expect with chemotherapy or radiation?
The National Cancer Institute publishes two comprehensive treatment booklets geared toward patients who are about to start or are undergoing chemotherapy or radiation:
- “Chemotherapy and You,” which includes frequently asked questions, tips on managing side effects and questions to discuss with the patient’s care team
- “Radiation Therapy and You,” which includes common questions and answers, information about the types of radiation, advice for managing side effects and questions to ask the patient’s care team
The Cancer Support Community also publishes a booklet called “Coping with Side Effects” that walks patients through individual side effects of treatments.
6. Is there financial assistance available to me?
There are many supportive agencies that offer financial assistance to people dealing with cancer. Cancer Care publishes “A Helping Hand: The 2023 Resource Guide for People With Cancer” to help patients and families find the assistance they need.
For additional resources on any topic, patients and caregivers can visit the Patient Library and Welcome Center at Moffitt’s Magnolia campus, the Patient and Family Center at the Richard M. Schulze Family Foundation Outpatient Center or the Patient Resource Center at the new Moffitt McKinley Hospital. The library also offers virtual education through regular Meet the Experts events and Patient and Family Orientation.
Whether a visitor is looking for general information or has a specific question, Bidelman notes that the team is always ready to help. “The patient and family specialists are amazing at hunting down the answers to any question that someone has.”