Your Role as Caregiver for Your Child with a Brain Tumor
When a child is diagnosed with a brain tumor, it seems as though your world turns upside down. Not only are parents, siblings, family members and the child frightened and confused but, suddenly, family life becomes a sequence of drastic changes, hospitalizations, surgeries, tests and treatments.
As the primary caregiver of a child with a brain tumor, you are your child’s greatest advocate. You will be the person to ensure that your child receives the best care possible. However, it’s nearly impossible to do this alone.
To help, the ABTA has a comprehensive overview on your role as a caregiver. This resource applies to caregivers of patients of all ages with brain tumors, covering everything from how to prioritize and solve problems to how to communicate on behalf of the patient.
In addition to the tools and strategies outlined for all caregivers, parents of children with brain tumors have many specific considerations.
"No matter how people cope, when parents become educated and empowered, they don’t feel as helpless." – Gina Baldacci, LCSW, Neuro-Oncology Social Worker, Ann & Robert H. Lurie Children's Hospital of Chicago
Your role as researcher
Because there is so much medical information in our environment today, it can be difficult to know where to start. You should look for information, experts and medical facilities that not only focus on the type of brain tumor your child has, but also specialize in pediatric cases.
- The ABTA guide to medical research
- The ABTA has partnered with EmergingMed to offer TrialConnect, a free, confidential, personalized clinical trial matching service that can help connect your child with available clinical trials based on age, tumor type and treatment history.
Your role as an advocate
While there are many aspects of coordinating your child’s care, most parents understand that they need to support their child’s best interests throughout the process. You can be an advocate by:
- Understanding the medical team members and their roles. There will likely be a large, multi-disciplinary team assigned to the care of your child. Knowing what each person does and which staff members can answer your key questions can help you maintain a better understanding of the overall situation in order to make informed decisions. Read more about multi-disciplinary teams and their roles in how to navigate the health system.
- Asking questions. It’s important to know why and how medical professionals make their decisions. One teenage brain tumor patient remembered being embarrassed that his mother asked so many questions, but was ultimately glad she’d been involved in every detail of his treatment, from dosage amounts to physician orders. The teen knew that his mother’s persistence led to a better understanding of what was happening and more peace of mind for the whole family.
- Being proactive during treatment. Clinic visits and hospital stays can be made more tolerable with some pre-arrangement with the medical staff. Investigate what accommodations the hospital provides for parents staying overnight. Assist the hospital staff with your child’s personal care, such as toileting, bathing and eating – but also be aware that there are some times you may need to let the staff members work on their own.
Your Role in Day-to-day Management
As caregiver and a parent, you are juggling many roles to ensure a good quality of life for your child, as well as the rest of your family. You may be managing a job and other outside responsibilities along with making sure the family has regular, healthy meals while arranging doctor appointments and other demands on your to-do list.
Making schedules, getting help and employing time management tools can be a great help.
- The ABTA has a variety of checklists and calendars to help you organize both every day and caregiving activities.
- It is often difficult for families to ask for help, or to respond to general offers of help. The article Getting the Help You Need gets specific about how to organize tasks among family and friends, from keeping family informed to getting help for other children in the family with homework and after-school activities.
- In many families, siblings are impacted greatly. Helping them cope and keeping them from feeling isolated is a major part of your caregiving role. Read more about the impact of a pediatric brain tumor on the family unit.
- Your child will likely need a number of medications which will become part of your daily routine. The ABTA has a medication log which can help you keep track of what your child needs to take, when, how much, and any adverse reactions you may need to report to your medical team.
Your Role as Communicator
it’s highly likely that friends of your family and child will want to know what’s going on with your child’s health and treatment. While some caregivers want to talk to friends and family about what is happening, others would rather keep things more private.
- If you want to communicate yourself with friends and family, email and social media are great tools to simultaneously send messages to a wide range of people.
- You can assign a “chief communicator” to coordinate the messages and requests for help to family and friends.
- Read more about Getting the Help You Need
Your Role as Record Keeper
Keeping track of doctor appointments, tests, results and medical expenses while keeping pace with everyday living and life events will require a great deal of organization and attention to detail.
Many parents find that a binder of information, with pathology reports, test results, a medication log and other information is an important tool both for you and the healthcare professionals you will be working with. Information such as side effects for example, no matter how minor, can be of importance to your healthcare team. See the types of information that is helpful for brain tumor caregivers to track.
Improving the quality of life for your child
Everything you do – the research, the advocating, the recordkeeping – all helps to improve your child’s quality of life.
Physically, you will be there to help your child manage any side effects and symptoms of their brain tumor and its treatment.
Emotionally, there are a number of ways to improve your child’s quality of life including:
- Helping children retain a sense of connection to their peers by arranging visits or video chats
- Keeping the lines of communication open between you and your child
- Using age-appropriate language to reassure the child that you will be together during this journey
More information about communicating with children and the whole family during the course of a brain tumor can be found in How a Pediatric Brain Tumor impacts the Family.
Your changing role
Your role as a caregiver will change throughout the course of your child’s illness. A brain tumor takes families in any number of trajectories depending upon the disease, the treatment and the age of the child. However, most caregivers have told us that the shock and disbelief of diagnosis eventually gives way to a “new normal,” where patients and their families find their way to a more stable day-to-day existence that involves caring for their loved one, but also finding ways to enjoy life together.
Post-treatment, some children may experience late-effect symptoms – symptoms that effect cognition, behavior, and movement – which can pave the way to more adjustment. And finally, the strong advocacy relationship developed between parent and child during treatment may need to be loosened, as the child gains independence and learns to advocate for him or herself.1
"Every family and patient is different. No one imagines that someone in their family could get a brain tumor, and when it happens, it’s devastating. Learning to share your concerns, feelings, and connecting with others going through the same thing is critical to fulfilling your role as a caregiver." – Gina Baldacci, LCSW, Neuro-Oncology Social Worker, Ann & Robert H. Lurie Children's Hospital of Chicago
1Moore M, Wagner S. “Caregiver and Family Issues for Brain Tumor Survivors.” Chapter 21 in Turner S, Goldman CD (eds) Late Effects of Treatment for Bran Tumors. Springer Science+Business Media, 2009.