How Siblings Cope
Nancy Barbach, LCSW, talks with siblings of brain tumor patients about how the diagnosis affects the family.
All of us are hoping to better understand the impact of a childhood brain tumor diagnosis on families and the experience of brothers and sisters of children with brain tumors. Nancy Barbach, LSCW, works at North Shore-LIJ Health System in New York and is the former president of the Association of Pediatric Oncology Social Workers. In these excerpts from our Informed Parent and Survivor series, Barbach addresses these issues.
Impact on the Family
The chronic nature of this disease is demanding and unpredictable, causing a great deal of stress for the entire family. The well sibling of a child with cancer has a really hard job. The family routine is altered and their peer relationships become difficult.
The degree of difficulty can result in high levels of anxiety, depression and guilt. Sometimes siblings feel compelled to compensate for the struggles their parents are having by not sharing or even denying their own problems, and trying to make as few demands as possible.
However, there can be positive consequences, such as increased sensitivity toward their sibling and parents, personal maturation and a greater appreciation of life.
The psychosocial team tries to help kids express their worries. Whether it’s building a dreamcatcher full of bad dreams, or designing a worry box that worries can be tucked away and/or speaking to someone, it’s very helpful to help a child find a safe way to communicate their worries.
I try to remind parents of ill children that they cannot be held or hold themselves to the same standards of parenting as they would, were their children well. It is necessary to prioritize their children’s needs differently.
Parents should try to encourage open honest communication of the well sibling’s thoughts and feelings. Try to pre-empt concerns about siblings’ feelings of responsibility for the illness or guilt over not being ill. All information should be sensitively tailored to the developmental level of your child.
If you are uncertain at any time, your center’s child psychologist, child life specialist or social worker could be consulted for guidance. Consistent discipline, however difficult, is always encouraged. Acknowledge positive behaviors and accomplishments of siblings. Very important, acknowledge when their beliefs and perceptions, or interpretations, are appropriate. Remember, you serve as [your child’s] barometer for trusting himself or herself.
Jane (age 21)
It’s very difficult for me to talk about my brother. It doesn’t bother me so much to discuss brain tumors or other forms of cancer, but I try and keep these conversations scientific and I don’t make them personal. Usually, I don’t even talk about my brother and his situation outside of my family I remember spending a lot of time at the hospital and playing with other sick kids. My family tended to take me along. I liked being surrounded by other kids even if they were sick.
I remember witnessing a lot of my brother’s treatments and some nurses and doctors would explain them to me. But I was only 3, 4 and 5 years old. My parents tried to explain my brother’s treatments to me as best as I could understand and tried to make it not scary. I felt much better. They made me feel part of the process. I was allowed to be there; it wasn’t a closed door. No one was telling me different things while secretly other things were going on.
Larissa (age 17)
I find it hard to talk to people that I’m close to [about having a sibling who has cancer]. It’s a lot easier for me to talk about it with strangers. When my sister was diagnosed, I quickly trained myself to not tell my parents when I was upset or had a problem, because I didn’t want to burden them. Over the years Even though I know that I can talk about it, I tend not to. My never tried to ignore me, they just had to focus on her for her survival. It’s been difficult trying to have a close relationship with my parents now as I’m older.
My parents were always good about asking the doctors questions, and making sure they knew exactly what was going on and why. But I never wanted to ask questions about it. But if I had asked, they would’ve told me.
I started off wanting to go into elementary education, but now I plan on majoring in special education. I would help my sister sometimes with her homework. I find it really easy to relate to students who have learning disabilities.
Rachel (age 17)
It’s hard to talk about the emotional aspect or when to tell someone who’s close to you for the first time. It’s not so hard talking about the things that happened to my brother, but when I start talking about the ways I was hurt, it becomes harder.
Thinking back I know that everything wasn’t perfect before he was diagnosed, but you come to think of it that way. I felt abandoned and it’s not even your parents’ fault. They had to be with my brother. But being 8 and sent to stay with relatives, I felt abandoned.
I think that there is a sensitivity that you get when you’ve been through something hard. I think I’m far more driven than I would’ve been. While I hated the hospital, it also intrigued me. [Being a doctor] is always what I’ve wanted to do.