How to Comfort and Care for a Child with a Serious Illness in a Healthy Way
It seems obvious: A child in the hospital with a serious illness gets a pass on the usual childhood rules and regulations. Video games every day? Of course. Ice cream for dinner? Absolutely. But for young patients hospitalized for weeks or months, indulgence can create bad habits and behavior. Worse, it can interfere with the serious care they need. OnlineCounselingPrograms.com asked a number of counselors and health care professionals who work with young children why parents need to be mindful of the way that they provide comfort and care.
When children are “hospitalized and really sick, they tend to still benefit from parenting and discipline,” said Holly Weinschenk, a nurse at Johns Hopkins Hospital’s Pediatric Intensive Care Unit in Baltimore.
She has seen patients who refused to eat anything but ice cream and hospital rooms so packed with toys that nurses struggled to reach medical equipment.
“Awareness for the parents is really important because most of the time, they truly just don’t realize that what they’re doing is actually creating a longer hospital stay and getting in the way of their care plan,” she said.
Counselors, child life specialists, and other care professionals can help parents recognize and avoid this common pitfall, while providing the healthy support their hospitalized child needs. They can also assist with navigating shifts in the whole family’s dynamic. Even after a child comes home from an extended hospital stay, families may find that daily routines and behavior have changed.
Why Do Parents Overindulge Their Child at the Hospital?
The stress of a hospital stay can sometimes lead parents to give their child anything they ask for to comfort them during treatment.
“The reaction is, ‘That’s so sad and I want them to be happy while they’re going through this,’” said Max Wolff, a nurse coordinator at a national children’s hospital. “They sort of give in to whatever the child wants, but that usually ends up not being the best for the kiddo in the end.”
Understanding why overindulgence is instinctive for parents of an ill child can make it easier to recognize the temptation and choose healthier coping mechanisms. For example, illnesses can’t be easily fixed or solved by mom and dad, and that can make parents feel helpless and guilty.
“It makes parents feel better if they can save some tears, because they can’t save the kid from being in the hospital,” Weinschenk said. “Making that kid happy and distracting them, saving them 10 minutes of tears, is the one thing that they can control.”
Treatment is also not fun. Children, who already feel sick, may have to take unappealing medicines, face weekly or daily needle sticks, or undergo surgeries. Parents want to make their child feel better by distracting them with gifts, extra cellphone time or another cup of ice cream.
“But then if the patient ends up being in the hospital for a month, two months, or up to a year — when all your kid will eat is ice cream, it’s definitely going to get in the way of their nutrition, their care, and their ability to be flexible and try new things,” Weinschenk said.
On top of worrying about their child’s health, parents must navigate a complex medical system, rearrange their home and work schedules, and make major financial decisions.
“Parents, particularly at the beginning, however competent … they are — it’s still a new world that they’re entering,” explained Joanna Breyer, child psychologist and author of "When Your Child Is Sick: A Guide To Navigating The Practical And Emotional Challenges Of Caring For A Child Who Is Very Ill," in an interview with WAMU. "And it takes a while to get your bearings in a completely new world where these things, which are routine precautions for the medical team to take, are not perceived by you as the parent as indicating that the worst is going to happen.”
While they are catching up to this learning curve, the difficult parenting tasks of enforcing boundaries and sticking to rules can fall on the priority list. But keeping up routines and rules can be just as important for children in the hospital as it is at home.
What is the Impact of Overindulgence on Children with Serious Illnesses?
Parents do have to support their child differently at the hospital than at home, but too much special treatment isn’t necessarily helpful. Behavioral problems will extend beyond the time of treatment if corrective parenting isn’t implemented, Wolff said. He recalled one patient who was given all he wanted during treatment. During follow-up visits when he was cancer free, his parents said the child had become completely uncooperative at home.
“He would swing at them if they said ‘no’ to things and would not eat unless they served him exactly what he wanted,” Wolff said. “As a family, they began to see our psychology team to correct the problem.”
Parents should consider which coping mechanisms they are willing to implement every time a child needs to do something unpleasant. Weinschenk described parents who hid their daughter’s medicine on the plate when she resisted taking it.
“It’s a good idea and it worked, but I’m just imagining them taking her home and having to do that every day,” she said. “She never had the opportunity to learn that good medicine tastes yucky, but it’s quick and then it’s over.”
Weinstock also warned against a potentially more concerning form of overindulgence: overprotectiveness, which can cause parents to avoid or delay treatment for their child because it causes discomfort or pain. That can lead to serious health challenges.
She described an attentive mother of a 6-month-old who picked up her baby every time he cried, regardless of what the hospital staff was doing. Six months later, Weinschenk said, the baby had no head control. The staff attributed the baby’s delayed development “to the fact that he really didn’t need to learn how to pick up his head because mom would just hold him,” she said.
Eight Healthy Ways to Support a Child in the Hospital
While the impulse to overindulge is often counterproductive, there are positive, healthy ways to provide children with the support they need during their hospital stay.
1. Be Present
Particularly for younger children, parents’ presence can be one of the most important elements for easing children’s anxiety and discomfort. More than toys or screens, kids want their parents to be there.
The Rev. Christopher L. Smith is a clinical director of the Seeking Shalom counseling practice and former president of the American College of Counselors. He has also worked as a hospital chaplain. Smith says it can be useful to explain to a sick child – and siblings – why it’s so important for a parent to stay around the hospital.
“It can be appropriate to say ‘because you’re here in the hospital and we really care about what’s happening to you and we want to be able to talk to the doctors; that’s why we’re spending a couple hours every evening here with you,’” he said. “It’s reframing the assumptions around that rather than just, ‘I’m getting mom and dad’s attention for two hours.’”
2. React Calmly to New or Uncomfortable Experiences
Keeping a calm and positive attitude, even while being honest about what appears to be painful or uncomfortable, often helps children cope with treatments with less anxiety.
“It's helpful if the parents can keep their own fear under control and not speculate wildly,” Dr. Carol Goodheart, psychologist and author of "Living with Childhood Cancer: A Practical Guide to Help Families Cope," said in an interview with ABC News.
3. Practice Self-Care
Hospitalizations can leave parents anxious and exhausted, so it’s important for them to take breaks and be aware of their own needs. Some hospitals offer a place in the building for family members to take a break.
Rev. Christopher Smith recommends parents talk to others – counseling and mental health professionals or supportive friends and family — about how they’re doing, especially if they feel guilty about their child’s illness. When parents take time to work through their own difficult emotions, it is easier to think clearly about expectations or limits they should set for their child during the hospital stay.
“There’s a lot of places that you can go to work through that guilt as your own guilt, separate from the child,” Smith said.
4. Be Honest
Children rely on their parents for accurate information about what is happening to them. Learn about the child’s illness and treatment, and answer questions in an age-appropriate, honest manner.
Smith urges parents to evaluate what the child really needs and doesn’t need to know.
“I think the general tendency is toward hiding too much from the child,” he explained. “If more is shared with the child, there’s a better understanding around what’s happening to her.”
Parents should ask questions if they’re unsure about something. Their child also may become more comfortable asking doctors and nurses questions.
In her interview, Goodheart encouraged parents to break down what is going on into “manageable moments and manageable pieces of information: ‘X-rays don't hurt, but you have to lie very still. Mommy will stay with you and hold your hand.’"
5. Encourage Your Child to Explore and Express Feelings
Distracting, placating, or promising extra rewards may sometimes feel like the only option for dealing with a tantrum. But often, this misbehavior reflects deeper emotions that children may not be able to express in words.
Parents should acknowledge and validate their child’s feelings. In the resource, “Parent Toolkit: Strategies for Maximizing your Child’s Health,”Children’s Hospital Colorado recommends parents help children label their emotions in language they understand and teach ways to express positive and negative emotions appropriately.
6. Be Consistent
A lot changes for a child when they must go to the hospital. If parents’ standards for their behavior start to shift, too, it can make the child feel less secure.
“If she has to say ‘please’ and ‘thank you’ at home, she should do that in the hospital. If you throw out all the rules, that conveys something is really wrong, despite the fact that you’re telling her she’ll be OK,” Tricia Hiller, director of the Child Life and Creative Arts Therapy Department at Maria Fareri Children’s Hospital in Valhalla, N.Y., explained in a Parents.com article detailing how to survive a child’s hospital stay.
Maintaining limits and rules support a child’s sense of security and constancy.
7. Remember There is Life Outside the Hospital
Children, especially adolescents and pre-teens, often want to remain connected to other parts of their lives. Staying in touch with friends and keeping up with schoolwork can help older children feel more grounded and distract from the illness. It also creates consistency.
“It’s simple things, like talking with their teacher to find out what things the child can still be doing while in the hospital bed. Some of that might not be fun stuff, but that’s sort of learning to balance out what life is like,” Rev. Christopher Smith said.
8. Lean on Experts in the Hospital
Many hospitals offer options for support, including counselors, social workers, psychologists, and child life specialists.
“While all of the experiences are brand new for the parents and the patients, they’re not brand new to us, and we see kids every single day that go through these kinds of things,” Holly Weinschenk said.
Children’s hospitals around the country offer tips and advice for parents seeking to support their children during a hospital stay. Some break down their suggestions by age group, and others provide tips for preparing your child before their hospital visit. Consider the following resources:
- Children’s Hospital of Philadelphia: Preparing Your Child for an Inpatient Visit
- Children’s Minnesota: Supporting Your Child During a Hospital Stay
- Cleveland Clinic: Pediatric Health Information
- LA’s Cedars-Sinai: Helping Children Cope
- New York Eye and Ear Infirmary of Mount Sinai: Patient’s Guide to Surgery - Children
- Jude’s: Patient/Family Education Materials
- Texas Children’s: Activity Book (PDF, 9.3 MB)
- Texas Children’s: Tips for Supporting Your Child
- The Royal Children’s Hospital Melbourne: Preparing Your Child for the Hospital
- Wolfson Children’s: Helping Your Child in the Hospital