Impact of a Pediatric Brain Tumor on Family | Help for Caregivers

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How a Pediatric Brain Tumor Impacts the Family

While every family reacts in their own way to a brain tumor diagnosis, it can be reassuring to know that many families experience similar issues and emotions, and that help is available.

The Impact on the Family Unit can provide many answers to your questions. Topics covered include:

  • Family expectations (including extended family expectations)
  • Changing family roles
  • Taking care of your family while taking care of your child
  • Celebrating special occasions and holidays

This page focuses on the impact of a brain tumor diagnosis and treatment when the patient is a child. It includes findings from several research studies, as well as personal experiences from parents and siblings.

Communicating with children

Some of the most important questions many parents ask include, “How do I talk about this with my child?” and “What about discussing this with their brothers and sisters?” The overarching answer is to be honest, listen carefully, and tailor your communication to address the emotional development and comprehension level of the child. The article Communicating with Children contains information about:

  • How to take into account your child’s emotional development when discussing serious issues
  • Listening carefully
  • Understanding reactions that don’t seem to be appropriate (e.g., a teenager seems uninterested in the information you are presenting)
  • Specific words and phrases you can use during the different stages of the brain tumor journey for young children, older children and teens.
  • How to involve children in caretaking

Supporting your child

Although your own shock or disbelief may seem overwhelming, it can also cause anxiety for your child and their siblings. At this time, they need your assurance and comfort. There are many ways to keep the lines of communication open and support your child during this time.

  • Reassure. Your child may need reassurance on any number of issues. They may be afraid that something they did caused the disease, or that they are causing too much stress in the family. Younger children may fear that when their parents leave the room during a procedure, they won’t come back. Be there for your child, and make sure that you acknowledge and validate their fears without judgment. At the same time, clarify any unrealistic worries the child has.
  • Ask questions. By asking your child what he or she is thinking and feeling, you can get a good sense of their worries, fears, and issues that they may not understand.
  • Give the child choices. Choices allow the patient to feel some control over the situation. For older children, this may include allowing the child to experience some independence and perhaps to begin advocating for him or herself.
  • Understand behavior and personality changes. Not only are behavior changes natural for anyone in a stressful situation, there may be side effects from the brain tumor or treatment. Your child is still your child, and the person you love is still there regardless of their behavior.
  • Keep a routine. Even if that routine is drastically different from the one prior to diagnosis, keeping a daily schedule and sticking to family rules provides a structure that can reduce anxiety. Giving children responsibilities can make them feel like “normal” kids instead of someone whose illness prevents them from participating in daily activities.
  • Encourage friendships. If your child needs to leave school, encourage him or her to keep in touch with friends. Peer-to-peer relationships often fill needs that families cannot and can help the child stay current and connected with their outside interests and activities. Psychologically, these relationships help continue the child’s development and can prevent a loss of identity that many children can feel, especially teenagers.1

Supporting siblings

I’d see him in there getting his chemo and I’d think, ‘He’s so little. Why couldn’t it be me instead of him?’

Naturally, in a family where one child has a brain tumor, most of the attention will go to that child. Siblings may feel guilty, isolated, and may develop their own fantasies about the child diagnosed with a brain tumor. Some children may become angry and act out, while still others may focus their efforts on becoming the “perfect child.”2

All of these behaviors are normal. However, with increased attention given to sibling(s), honest communication within the family, and more active inclusion of the sibling(s) in treatment and follow-up, families have shown great amounts of resiliency. Knowing how to get help -- recruiting family and friends, receiving help from the community, and maintaining a high level of support from the child’s healthcare team – has been shown to support this positive process.3

Specific examples of things you can do for a sibling(s):

  • Assure them that nothing they did caused the cancer, or could cause their sibling to get worse.
  • Be honest about what you know, and that you don’t have all the answers. Let the them know that everyone is doing their best to help their sister or brother get better.
  • As with the child with a brain tumor, make sure to ask questions, listen to concerns, and gently correct any false information the sibling may have.
  • Keep lines of communication open. Children at school may say things to your children that may unintentionally be hurtful. Be there to listen and help your child cope with experiences, comments or questions from friends or classmates.
  • Continue to follow routines and set limits. Although you may feel that letting your child get away with bad behavior is okay because of the circumstances, in the long-term, your child needs you there as a parent. Setting limits is a way of showing them that you care about and support them.
  • Involve your child in care activities that are age-appropriate. Find more information in the “Involving Children in Caregiving” section in Communicating with Children.
  • Set aside individual time to spend with each child in the family. Recruit family or friends to watch other children if needed.
  • Inform teachers and the school social worker of your child’s/family’s situation, and ask them to alert you if your child experiences any difficulties in class.
  • Long-term, a cancer diagnosis has been shown to bring families together. One study showed that post-treatment, many siblings showed increased compassion and empathy, chose careers as health professionals, and generally became advocates for their brother or sister as a result of their experiences.4

    Parents supporting each other

    There is no one right way of coping when a child is diagnosed with a brain tumor, as well as in the years that follow. A serious illness unearths powerful emotions, and people deal with these emotions differently. Some people may turn inward, while others want to talk. Our reactions are based on our personal histories as well as our beliefs and thoughts about illness, caretaking, cancer, childhood, and thousands of other issues we connect with the situation. Studies show that men more often cope by trying to problem-solve, while more women employ emotion-focused coping.5

    If parents are divorced or separated, they may find they are in constant communication with one another as they try to work out a way to support their child together. Parents who are married may find their relationship strained because of the difficulty of the situation.

    To maintain a spousal relationship during this difficult time, caretakers and professionals recommend the following:

    • Make some time for yourselves as a couple, even if it is only ten minutes a day. It is not selfish -- it is actually the opposite – ask friends or family to provide you with an evening, or even a few hours, to spend alone together.
    • If you are feeling angry with your partner, write those feelings down. You can discuss the issue when you’re not as angry.
    • Partners may want to connect in different ways during this time. Some will connect through talking and small gestures, while others may want to connect physically. If these needs differ, spouses may find themselves in conflict. It’s important to recognize what is happening and find ways to connect that satisfies both partners.
    • Financial struggles can also become exacerbated during an illness. However, many spouses have learned to communicate and work through these issues. (For more information, visit the ABTA page on Financial and Medical Assistance for Brain Tumor Patients.)
    • Seek counseling if needed. Counseling can help improve communication and understanding of your partner’s point of view. You may find it helpful to learn new coping styles together. Your hospital or clinic may offer these services.

    Studies show that although many couples experience hard times and dissatisfaction when a child is diagnosed with cancer, the experience can actually strengthen relationships.6 In addition, relationships are more likely to be strengthened when both partners understand and accept their spouse’s coping strategies.7 However, if you are still struggling, you are not alone. Seek help for yourself via counseling, support groups, or online support groups. The more supported you are, the greater help you will be for your child.

    Extended family and friends

    Many families dealing with a pediatric brain tumor appreciate the support they receive from extended family and friends. On the other hand, offers of help may seem overwhelming at this time, or it may be a time you just want to spend with your immediate family. Regardless, there are many ways to both draw support from extended family as well as keep them as involved and informed as you would like them to be.

    • When friends and family ask to help, think about what you need and what they are good at. Give them specific directions. You can also refer them to the ABTA resource Tips for Extended Family and Friends.
    • If you do not want to continuously update extended family members on your child’s condition, see if a friend or family member would be willing to serve as “chief communicator.”
    • If you want to communicate yourself with friends and family, email and Facebook are great tools to simultaneously messages with wide range of people.
    • Family and friends may turn to you for emotional support. If you are unable to provide this, you can refer them to the ABTA’s the ABTA’s online support community or the local support group tool.

     

    1 Kenny T . The Effects of Childhood Cancer. Undergraduate Research and Creative Practice, Grand Valley State University; 2013. http://scholarworks.gvsu.edu/honorsprojects/199/. Accessed November 17, 2014.

    2 Moore T, Wager S. Caregiver and family issues for brain tumor survivors. In: Goldman S, Turner CD, eds. Late Effects of Treatment for Brain Tumors; Springer Science + Media LLC; 2009:331-339.

    3McCubbin M, Balling K, Possin P, et al. Family resiliency in childhood cancer. Family Relations;2002:51(2), 103-111.

    4Moore T, Wager S. Caregiver and family issues for brain tumor survivors. In: Goldman S, Turner CD, eds. Late Effects of Treatment for Brain Tumors; Springer Science + Media LLC; 2009:331-339.

    5Hoekstra-Weebers JEHM, Jaspers JPC, Kamps WA, et al. Marital dissatisfaction, psychological distress, and the coping of parents of pediatric cancer patients. Journal of Marriage and Family; 1998:60(4), 1020. http://www.jstor.org/discover/10.2307/353642. Accessed November 17, 2014

    6Hoekstra-Weebers JEHM, Jaspers JPC, Kamps WA, et al. Marital dissatisfaction, psychological distress, and the coping of parents of pediatric cancer patients. Journal of Marriage and Family; 1998:60(4),1019.

    7Hoekstra-Weebers JEHM, Jaspers JPC, Kamps WA, et al. Marital dissatisfaction, psychological distress, and the coping of parents of pediatric cancer patients. Journal of Marriage and Family; 1998:60(4),1021.