What About Me? Caring for Siblings

Brothers and sisters of rare disease patients have a special set of needs.

Hemophilia A patient Jonathan Grisalez and his sister
Hemophilia A patient Jonathan Grisalez and his sister.

Annette Gregory has a daughter with a rare disease. She also has five other children.

Minding the health of Baylee, 19, who has a primary immune deficiency disease while attending to the everyday needs of her other children is a delicate challenge that Annette describes as “a balancing act.”

“When you have a child that’s sick you’re so wrapped up in just that, that you do forget that you have other ones and you do forget their feelings that they go through,” the CSL Behring patient advocate said.

Annette Gregory and her daughter, Baylee.

Annette Gregory (left) and her daughter, Baylee.

According to estimates from the National Institutes of Health, about half of all rare disease patients in the U.S. are children and the vast majority of kids in the country have at least one sibling. That means many parents have found themselves, like Annette, juggling care and support for the child with the rare condition with giving needed attention to their brother, sister or both.

It’s a common issue, but one that has often been overlooked. For nearly three decades, Don Meyer has sought to address the needs of siblings of kids with serious medical conditions or special needs through the Sibling Support Project.

As a self-described “one-guy national organization,” Meyer travels the country from his Seattle base to speak on sibling issues and lead training for “Sibshops,” social and educational events developed by Meyer for school-aged siblings.

A recent training session at The Children’s Hospital of Philadelphia was attended by about 40 people  that included a mix of social workers, healthcare providers parents and, of course, siblings. He was teaching them how to conduct their own Sibshop, a program he calls “a celebration of the many contributions made by sibs.”

Sibling Support Project Director Don Meyer speaks during Sibshop training at The Children’s Hospital of Philadelphia. Sibshops are social and educational events developed by Meyer for school-aged siblings of children with serious medical conditions or special needs.

Sibling Support Project Director Don Meyer speaks during Sibshop training at The Children’s Hospital of Philadelphia. Sibshops are social and educational events developed by Meyer for school-aged siblings of children with serious medical conditions or special needs. 

A big part of Sibshops is addressing typical concerns of being a sibling; something Meyer says can be “a pretty unenviable gig at times.”

The emotions felt by siblings discussed at this training session included resentment and jealousy over the attention the child with health issues may receive. There are also less obvious feelings that siblings often face. Many children feel guilty that they don’t face the same health issues. Others believe they somehow gave their sibling their health problems. In some families, a typically-developing child may feel pressure to be a high-achiever athletically, socially or academically to make up for the difficulties faced by their sibling.

To address some of these issues, Meyer offers several tips for parents. One is to give siblings age-appropriate information about their brother or sister’s condition. He even suggests setting up some time with their sibling’s doctor for discussion. Also, he says parents should actively listen to the concerns of siblings and make time for one-on-one moments with them as well.

“A huge part of what we do is to educate parents about sibling issues,” Meyer told Vita during a break at his Philadelphia training.

There are plenty of positives about growing up as sibling as well. Enhanced leadership skills, maturity and empathy were brought up at this training session as some of the characteristics carried by siblings.

By meeting fellow siblings and taking part in what Meyer calls “decidedly fun” games and activities, he hopes kids can come home from Sibshops with strategies to cope “along with the realization that this kind of thing happens to other kids as well.”

Since 1990, Meyer has helped launch some 400 Sibshop programs across the U.S. Still, he feels that the needs of siblings remain underserved by the medical community and organizations that offer help and advice for families.

“There’s so much more that could be done for sibs of all ages,” he said.

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