Stay attuned to needs of seriously ill patients’ siblings
Resources offer brothers, sisters support
- Copyright © 2002 by the American Academy of Pediatrics
Tonight Dad was telling me how hard it was when Trudy was in the hospital. He doesn’t think it was hard for me at all. I missed you. I saw her get all these presents. I saw everyone visiting her and babying her, and there was nothing I could do about it. Sometimes I feel so alone and left out and even unloved. I know I’m overreacting, and I know that some people have so much less than me, but it’s not my fault I don’t have any medical problems. I wish I did!
This letter from a 9-year-old boy illustrates many of the issues faced by siblings of children with complex medical problems. Brothers and sisters may feel rejected, depressed, guilty, scared, jealous and helpless. Pediatricians, parents and other caregivers, however, may be so focused on the ill child that they forget about the needs of the other children in the family.
Siblings — like parents of chronically ill children — need information and support. While parents can draw strength from support groups and respite services, siblings often feel isolated.
“Most of us who work in the field of pediatrics or education or developmental disabilities, if we were to meet a parent of a newly diagnosed kid, one of our immediate reactions and first inclinations would be to introduce that parent to another parent who also has a child with a similar illness or disability,” said Donald Meyer, M.Ed., director of the Sibling Support Project of the Arc of the U.S.
“In my work, we are continually meeting sibs who are in their 40s who are only now meeting other people with brothers and sisters who have autism or spina bifida or Down syndrome,” Meyer continued. “We would never make parents wait 40 years to meet their peers, but somehow that’s OK with brothers and sisters.”
Meyer founded the Sibling Support Project (www.seattlechildrens.org/sibsupp/) about 12 years ago to change that. The national program provides peer support and educational programs for brothers and sisters of people with special health and developmental needs. The group reaches out to siblings through e-mail lists, books and Sibshops, which Meyer describes as lively events with games, cooking activities and crafts.
There are about 200 Sibshops, in nearly every state and eight countries. Many are based at children’s hospitals.
“If you were to wander into a Sibshop, you might be there for maybe as long as a half-hour before you realize this has anything to do with having a sib who has special needs,” Meyer said. “But tucked in with all those new games and all those other lively activities are discussion activities where they get to talk about the good parts, and should they wish, the not so good parts of having a sib with special needs.”
Range of emotions
Every time I thought about the stress I was experiencing, and complained to myself, I immediately felt incredibly guilty. How could I complain when Maddy was going through so much? Guilt became a big part of my life. Why did Maddy have the cancer, not me? How could I be so petty as to complain about anything? And worst, I was haunted by everything mean or cruel I’d ever done to Maddy. Every punch, hair pull, kick, pinch, prank, every time I’d teased her or taken her favorite cookie or snapped at her took on mammoth proportions.
Lucy’s story, as well as Jeffrey’s, are among many collected by Joan Fleitas, Ed.D., R.N., assistant professor at Fairfield University School of Nursing in Connecticut. She originally started gathering stories from ill children to study the social impact of their diseases.
One of the first stories she received was from Maddy, who mentioned how hard it must be for her sister, Lucy, to handle the extra responsibility. The letter prompted Fleitas to expand her research to include siblings of children with complex illnesses.
“When children were asked to share their feelings about having a sister or brother with medical problems, they wrote of responsibility and loneliness, fear, jealousy, resentment and guilt. They admitted feelings of sadness, and embarrassment, and a sometimes overwhelming confusion,” Fleitas wrote in an article titled, “When Jack Fell Down ... Jill Came Tumbling After: Siblings in the Web of Illness” (MCN. 2000;25:267-273OpenUrl).
Fleitas created a Web site called “Band-Aides and Blackboards: When Chronic Illness Goes to School” (www.faculty.fairfield.edu/fleitas), which highlights narratives from children with serious medical problems and their siblings, and provides resources.
Parents and pediatricians should be aware of the range of emotions siblings can have when a brother or sister is diagnosed with a serious illness or disability.
Sometimes, siblings believe they caused the illness or worry they may get sick, too, explained William Lord Coleman, M.D., FAAP, a member of the AAP Committee on Psychosocial Aspects of Child and Family Health and the AAP Section on Developmental and Behavioral Pediatrics.
Anger and resentment also are common reactions when siblings see the ill child showered with attention. Older children, for example, may be aware of the financial strain their parents are under and wonder if there will be any money left to send them to summer camp or college, Dr. Coleman said.
“Healthy sibs sometimes are called upon to do a lot of the care-taking and be almost a little father or mother,” Dr. Coleman continued. “Their own needs are denied in terms of their own developmental missions. Childhood, you might say, is curtailed or postponed.”
Such was the case with Lucy, who took care of her 11-week-old brother while their mother stayed with Maddy in the hospital.
“I became the only 11th-grader who had to hurry from school to collect a baby from child care, hurry home to clean the house, feed the baby and start dinner, all before I visited my sister or started my homework,” Lucy wrote.
The added responsibility, lack of attention and anxiety about what will happen to the ill child, who often is a close friend, can take a tremendous toll on healthy siblings.
They may become depressed and withdraw from their parents, be moody, sulk or cry, Dr. Coleman explained. Depression also can manifest itself as behavioral problems such as noncompliance and acting out.
Younger children may become needy or demonstrate regressive behavior, while older kids may become overly compliant, he continued.
“They get to be these kind of very perfectionistic, anxious, tense, well-behaved children so they don’t draw any negative attention, or stress people out,” Dr. Coleman said.
Others engage in risk-taking behavior with drugs, alcohol or sex to establish connections with people or get some relief, he added.
Siblings, however, don’t always react negatively to having a brother or sister with a complex medical problem.
Research has shown that well siblings are more mature and independent than others their age. They can develop empathy, kindness and compassion, and often appreciate things others take for granted, such as good health and family closeness.
“Some of the most gracious, thoughtful, caring people walking the face of this planet are people who are sibs,” Meyer said.
Reaching out to sibs
There are good things and bad things about being the sibling of a sick kid. Sometimes I would like to have a different brother who is not sick. But I don’t want to send Kyle away. I love him with all my heart.
Sara, whose letter is on Fleitas’ Web site, also wrote about how her family can only visit places that can accommodate her brother’s wheelchair and how she can’t play the piano when Kyle is sleeping.
Pediatricians can play a key role in ensuring that well siblings like Sara are not lost in the shuffle.
First, they should ask parents about other children in the family — their ages, health history, how they are doing, whether there are any issues at home or school, said David Hirsch, M.D., M.S., FAAP, a member of the AAP Committee on Children with Disabilities.
“The issues of concern that parents may have may not even be brought up unless you ask,” Dr. Hirsch said.
Another strategy is to invite siblings to an office visit, said Stuart J. Brink, M.D., FAAP, a pediatric endocrinologist in Massachusetts and associate professor of pediatrics at Tufts University School of Medicine.
Siblings who visit his office learn about diabetes and get a chance to ask questions. “If they allow us, we’ll do a blood test on them and show them what the syringes look like,” Dr. Brink added.
The visits also help decrease some of the rivalry between the siblings.
“We’ve had lots of kids say, ‘Gee, I wish I had diabetes, too,’ and what they are really saying, of course, is, ‘I want you to pay attention to me because it’s not fair,’” Dr. Brink added.
He also works with siblings through camp programs, some of which are for families and others are just for brothers and sisters.
“The goal behind all of them is to just give people exposure to the fact that they’re not alone, there are things you can learn from other people with diabetes,” Dr. Brink said.
Pediatricians also should provide anticipatory guidance to parents about how their child’s illness may affect the entire family, Dr. Coleman said, and offer strategies to help families stay connected.
He suggested encouraging families to maintain routines and traditions as much as possible. Parents also should be reminded to spend some special time with well siblings, even as little as five minutes a couple of times a week. This, however, may be difficult for parents consumed with taking care of their ill child.
“I would empathize with the parents and let them know that I understand how busy they are and that they can’t be expected to be everything to everybody,” Dr. Hirsch said. “They need to avail themselves to help whenever they can, whether it’s coming from their spouse, or grandma or grandpa.”
Finally, pediatricians can offer to explain the illness to well siblings and direct parents to resources, such as Sibshops, e-mail lists and support groups for siblings.
Meyer pointed out that brothers and sisters will have the longest relationship with the sick family member.
“If people are really interested in care that is truly family centered,” Meyer said, “then they need to be thinking about the family member who’s going to have the longest lasting relationship with that person with special needs and to be as available as they would be to parents.”