A definition of Juvenile Scleroderma in simple, easy to understand language

Siblings of Children With Chronic Illness
Written by Vanessa Malcarne, Ph.D
Associate Professor, Department of Psychology
San Diego, CA

Meeting the special needs of a child with a serious chronic illness can seem to require all of parents' energy and focus. However, in families with more than one child, this may have negative effects on the sibling(s) of the ill child. Research is mixed as to whether being the sibling of a chronically ill child has negative effects in terms of emotional well-being. Some research has found that siblings seem to be at higher risk for psychological, social, and educational problems, while other research has found little evidence of any extra risk. It's also clear that for some children and adolescents, being the sibling of a chronically ill child can ultimately be a growth-enhancing, and life-affirming experience.

What is it like to be the sibling of a child with a chronic illness? Reactions and experiences can be as unique as your child, but studies of siblings suggest some common experiences:

Jealousy: Siblings may resent all of the attention devoted to the ill child, and want more for themselves.

Anger: Siblings may be angry at the ill child for "stealing" their parents' attention and perhaps for getting special treatment and privileges.

Frustration: Siblings may become frustrated when the ill child can't play with them, or holds them up in recreational activities, or disrupts the family schedule. They may also be frustrated because they can't do anything to help their brother or sister.

Resentment: Siblings may feel resentful if they are asked to make compromises for the ill child, or to put off doing things they want to do to help take care of the ill child.

Scared: Siblings may fear that they too will become ill. They may also fear that something awful will happen to their ill brother or sister.

Embarrassed: Siblings may be embarrassed, especially if, as in juvenile scleroderma, there are signs of illness that can be seen by others. This may be a particular problem if children attend the same school.

Sad: Siblings may feel very sad about what their brother or sister is going through.

Helpless: Siblings may feel helpless to do anything, or unsure about what they could or should do to help.

Guilt: Siblings may feel guilty about their negative feelings, seeing them as unfair and petty, especially since their sibling is ill.

It's important to remember that these are common and completely normal responses for siblings to have. Problems arise when these feelings persist and interfere in siblings' everyday life and functioning.

How do you know when a sibling is having problems coping? Look for the same signs you would look for in any child: acting out, defiant behavior, sullen mood, social withdrawal, tearfulness, anxiety. And remember, you know your child better than anyone - look for unusual or exaggerated behaviors that signal to you that your child may be having problems.

If you know your children are having trouble dealing with their sibling's illness, what can you do?

1. Talk about it. Communication is key. Don't think that you can hide facts about your child's illness from the siblings. There's no need to present highly technical medical information, or frightening but unlikely scenarios for the future, but parents should share basic information about the disease with the siblings. For many children, what they don't know is scarier than what they do. Also, encourage siblings to talk with their ill brother or sister, asking what the disease is like, how they're feeling, what it was like to go to the hospital, etc.

It's also important to let your children know that they can talk about any and all feelings, and that they don't have to pretend to be happy when they're not. Just assume that siblings have negative feelings associated with the experiences, and encourage them to express those in adaptive ways (for example, in conversations with parents, rather than by yelling at their ill sibling).

2. Provide opportunities for caretaking. Give siblings something to do to help with their brother or sister's care. Even the youngest siblings can do something to help. Make caretaking a positive family activity, and praise children for getting involved. Families that have experienced raising a child with a chronic illness as drawing the family closer together are typically those that have approached the illness as a unit, with everyone playing an important role appropriate to their abilities and developmental levels. Also, children who engage in appropriate levels of caretaking at early ages are likely to develop caring and empathic attitudes that will carry into adulthood.

Caretaking can also involve visiting the ill child in the hospital when that situation arises. Some parents shield siblings from this experience, but in general that's a mistake. Children can be prepared to handle a hospital visit, and it will help them to understand what their brother or sister is going through. Plus, it's another opportunity for your child to behaviorally express their care and concern for their sibling.

3. Try to normalize things as much as possible. One of the biggest frustrations for siblings of ill children is that their own schedules are constantly being disrupted. This causes resentment to build toward the ill child, who is seen as the cause of all of this disruption. It is essential that siblings be allowed to continue their own activities as much as possible. If you find yourself frequently cancelling activities due to the needs of the ill child, you'll need to consider other options. Can neighbors or friends provide transportation for your children, while you tend to the needs of the ill child? Can you arrange for some respite care so you can attend activities with your other children? Can you pick a "special time" each week to have a personal moment with each of your other children? These don't have to involve large amounts of time - quality can be more important than quantity - but if you find yourself constantly putting aside the needs of your other children to attend to those of the ill child, remind yourself that your child's illness is chronic. That means that you must find a way to balance the demands on you as a parent, and that's a process that is best started sooner rather than later.

4. Involve your children in other support systems outside of the family. Ask extended family to get involved, stepping in to provide attention and love to your children when you are overwhelmed. Ask neighbors and family friends to involve your children in activities. Talk to school personnel, especially classroom teachers. Teachers spend an enormous amount of time with your child, and can provide support as well as watch for signs of problems. Afterschool programs and clubs can provide support. Also, many pediatric hospitals run social support groups for siblings of children with chronic illness. There are also helpful Internet sites, including some developed by siblings of children with chronic illnesses (see, for example, http://www.asiblingssite.com, developed by a sibling of a child with spondyloarothropathy).

Please keep in mind, this webpage is for your information only.
Please check with your child's physician for any treatments.

For more information on Juvenile Scleroderma, contact:

Juvenile Scleroderma Network, Inc.
1204 W. 13th Street, San Pedro, CA 90731

Tel: (310)519-9511 (Pacific Time)
24 Hour Support Line: 1-866-338-5892 (toll-free)

Speak to another JSD parent for emotional and logistical support provided by home-based JSD volunteers. For medical advice, please contact your child's physician.

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