Caring For Siblings Of Disabled Or Sick Children

This article was originally published in the New York Times.

Having a child changes you into a parent, and as we all know, that is not a simple change; there’s nothing one-and-done about it. And having a seriously ill child changes you forever as a family; it’s important for everyone who tries to help families to understand that when one child in a family is seriously ill, or lives with a chronic disability, the siblings are also profoundly shaped by the experience.

“It’s always a challenge to make sure that each child feels valued and loved equally,” said Barbara Mandleco, who is professor emerita of nursing at Brigham Young University and has studied the siblings of children with disabilities. Parents may be so focused on getting the disabled child the necessary attention and help, she said, that they may not stay as involved in the academic, music or sports activities of the sibling.

“Family life starts to revolve around the needs of the other child,” said Emily Incledon, a clinical psychologist at the Rehabilitation Service of the Royal Children’s Hospital in Melbourne, Australia, who was the lead author on a 2013 review of mental health issues in siblings of children with chronic diseases.

And if that happens, she said, the not-sick sibling may either withdraw or may start acting out, competing to get parents’ attention back. “The parent needs to make time to explore the emotional experience of the sibling,” she said. Parents can open up that dialogue, and let a child see that it’s O.K. to have moments of feeling angry or resentful about how much attention the sick child is getting. And a first step in opening up that dialogue, she said, is normalizing some of those feelings: “I understand you must be angry this is affecting the family.”

In the research literature that Dr. Incledon and her colleagues reviewed, better mental health among siblings was associated with several strategies and interventions, including education about the illness, with participating in support groups and attending recreational camps designed for kids with sick siblings, and with a sense of being supported, both by parents and peers.

Practically, she said, what’s helpful is for parents to maintain normality as much as possible: “Trying to make sure there’s one-on-one time allocated for siblings, with the parent making that not about the illness, just about enjoying each other.” But that requires support for the whole family, she said; parents won’t be able to address the emotional needs of their children unless they themselves have enough support in coping with the illness.

Dr. Anna Muriel, the division chief of pediatric psychosocial oncology at the Dana-Farber Cancer Institute in Boston said that children with cancer often require intermittent hospitalizations for their treatments, so a sibling’s life may be disrupted by having to stay with relatives while parents stay with the sick child, or travel with the sick child to another city.

It’s important that the illness and the treatments not feel like a mystery, Dr. Muriel said. “One of the basic tenets is communication about what’s happening with their siblings.”

Dr. Incledon said that honesty is always important but has to be tuned to the child’s developmental level. “If information is being kept from them, they may become more worried, using their imagination to create scenarios,” she said. Parents should start by checking out what the child thinks is going on and take the opportunity to correct misunderstandings and reduce anxieties.

School-age children, Dr. Muriel said, will have more questions: What is leukemia? Can I catch it? Why do they lose their hair? But routine remains important, and their daily touchstones — school, pickup, homework, dinner time — can help them feel the world is still working.

Adolescents may find themselves prematurely taking on adult responsibilities to keep the family going, Dr. Muriel said, but they still need adults in their lives, and they still need some room to be adolescents. “Some of these kids become the ‘good child’ — they become really compliant,” she said. But others become rebellious, either while the sibling is sick or after the treatment is done.

The most extreme situation, of course, is the death of a sibling, which can make all these complex emotions, from envy and resentment to sympathy, grief and guilt so much more intense; in a recent article, siblings of children who had died of cancer expressed the sense that their grief was somehow sidelined, that they were expected to support their grieving parents, perhaps, but not necessarily encouraged to talk about their own emotions.

Pediatric oncology programs put a tremendous amount of effort into creating bright spots and happy events for patients, and sometimes other young children see the treats but not the treatments. “Siblings may feel left out,” Dr. Muriel said, “they don’t see that in exchange for presents and visits with sports heroes, the child has to go through painful treatments.”

“We start with a parent guidance model,” she said. “Who are these siblings, what are the kinds of predisposing temperaments, how have they coped with adversity in the past?”

Dana-Farber’s program offers “sibling bags” filled with information, journals for keeping track of their feelings, fidget toys; a video online lets kids watch other siblings of kids with cancer talking about their experiences. “They know that the people at the cancer hospital think of them,” she said. And during school vacation weeks, when siblings are more likely to show up at the hospital, they provide special activities and educational sessions.

“Kids have a full range of emotion about this,” Dr. Muriel said. “They may be fearful or worried for the sibling or fearful of getting the same disease or angry about changes in their family.” And all of these emotions change as the child grows and develops.

“Siblings learn more compassion and empathy toward those who have a disability,” Professor Mandleco said. “I see that as something that needs to be encouraged.” There’s evidence to suggest that this experience shapes many siblings into resilient, helping, caring adults, and may shape some of their career choices as well.

The professionals who interact with these families need to include siblings, to encourage parents to take time for and with their other children, and above all, to support parents through these difficult and complicated experiences so that they can help all their children.

“We need to help parents — they’re doing the best they can under the circumstances,” said Professor Mandleco. “You shouldn’t beat yourself up as a parent; you shouldn’t feel bad as a child. People do the best they can.”