When their daughter, Lyla, was hospitalized at age 3 for spinal surgery and pancreatitis, John and Allison Mason soon realized her twin sister needed some special attention too.
“The experience was very stressful for Elliana,” John Mason said. “The girls had never spent a day apart since leaving the Neonatal Intensive Care Unit as infants.”
The Lancaster family got help from the Child Life program at Penn State Health Children’s Hospital, which offers support for siblings of children hospitalized or ill with chronic conditions.
“Child Life coached us on what to say to Elliana at home so she could understand Lyla’s situation in terms a toddler could understand, including why Lyla wasn’t at school or why I was sleeping at the hospital every night,” John Mason said.
When Elliana visited the hospital, she was invited to participate in the same activities as Lyla – everything from music therapy and hospital bingo to a special event with Penn State football players.
That helped Elliana be less scared and even have a little fun with her sister, despite being in a hospital, her parents said.
“When a child is sick or hospitalized, it affects the entire family,” said Lindsey Reynolds, certified Child Life specialist at the Children’s Hospital. “Routines change, and there’s a whole array of emotions.”
NEW TERRITORY FOR EVERYONE
A sibling may feel worried about their brother or sister, especially if they look ill or are confined to a hospital bed, or they may think they did something to cause the illness. Siblings also might feel jealous of extra attention the sick child gets and wish they could be sick too, Reynolds said.
Parents may feel guilty that they must understandably focus so much of their energy and attention on their sick child, leaving less time for their other kids and their activities.
Parents are stressed and may show it – which may come as a surprise to their other children, who may never have seen their parents as anything other than in control.
“Children are very intuitive to the emotions of others, and they can sense caregiver anxiety,” Reynolds said. “Siblings might have anxiety about what they’re seeing, and they may wonder who will take care of them when their caregivers are at the hospital. When children have unanswered questions or don’t understand what’s wrong, it’s a place of great uncertainty.”
RESOURCES EASE UNFAMILIARITY
To help, Child Life offers age-appropriate tips and resources to parents, and individualized teaching sessions, books and play time to help siblings cope.
“Often, children don’t have the words for what they are feeling. We emphasize the importance of play – it’s the language of children,” Reynolds said. “Letting them play with a stuffed animal that has medical equipment similar to their sibling’s can help them know what to expect before seeing their sibling for the first time.”
Child Life also offers SibShops, currently on pause due to COVID-19, which are free, quarterly workshops that give siblings a safe space to meet other children who have sick siblings, talk freely about how they feel and have some fun.
Here are some tips for parents to make the best of the unexpected situation.
- Be honest. Give concrete information about your child’s illness. Otherwise, siblings might overhear bits and pieces and craft a wrong narrative in their minds.
- Use proper names. Calling cancer “the C word,” for example, could make it seem mysterious and elevate fear.
- Make a game plan. Share the medical plan for helping your sick child and the new routine for your other children, including who will help care for them when you’re at the hospital.
- Give back some control. Talk with your children about what to expect when they visit the hospital and let them decide if they want to go or not. If not, ask if they would like to send in favorite family pictures or drawings or take advantage of technology that makes it possible to share a bedtime story remotely.
Throughout the journey, Reynolds suggests parents create intentional space for emotions – their children’s and their own.
“Instinctively, parents and caregivers want to be brave and protective, but it’s important for them to identify their emotions and admit they also feel scared,” Reynolds said. “It’s OK to shed a tear together too.”
KNOW WHEN TO GET EXTRA HELP
Although most siblings weather the situation with support, some children may need extra help from a therapist or doctor. Changes in eating or sleeping habits and heightened emotional behavior – anything from isolating oneself from others, to becoming extra clingy, to throwing temper tantrums – could be normal reactions to the stressful situation; however, families know their child best and should contact their child’s healthcare provider for ongoing support and concerns, Reynolds said.
Maintaining a feeling of family unity goes a long way in making siblings feel secure, Reynolds said.
“Emphasize that even though a brother or sister might be in a different place or look or talk a little differently right now, they’re still part of our family, and we can still find ways to play and connect like we always have,” she said.
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The Medical Minute is a weekly health news feature produced by Penn State Health. Articles feature the expertise of faculty, physicians and staff, and are designed to offer timely, relevant health information of interest to a broad audience.
