When a child is seriously ill, the focus of the whole family shifts.
During long hospital stays or intense treatments, as parents spend a great deal of time outside of the home, brothers and sisters of a sick child can sometimes feel forgotten.
Palliative care teams, also known as pediatric advanced care (PAC) teams, partner with families to address the range of typical emotions that siblings of a seriously ill child may experience.
Typical Feelings for Siblings of a Sick Child: Not Belonging
A sick child's sisters and brothers often feel left out or ignored. Here are a few ways parents can make sure their other children feel included, needed, and attended to:
- Find ways to let the siblings participate at home and at the hospital. Give them some way to help out at home, but don't ask them to take on a parent-like role. They need simple, age-appropriate tasks that contribute to the day-to-day functioning of the household, so they know they are needed.
- At times when children may not be permitted to visit the hospital, ask siblings to draw pictures or make cards to put in the sick child's room. Ask them to collect some of the sick child's personal items, such as books or stuffed animals, to be sent to the hospital.
- Answer the siblings' questions. Provide age-appropriate answers that are truthful, concrete, and thorough (but you don't need to provide more information than the child is asking for). No matter how hard parents try to protect their children from the reality of the situation, children frequently know when something is going on, and they will certainly have questions. Parents with the best intentions often evade their children's questions -- which adds to the children feeling excluded.
- Acknowledge sibling relationships. When a family is grieving the illness or the loss of a child, it may seem to siblings that the focus is on the parents' relationship with the child. The brothers and sisters have a vital relationship with their sick sibling, too, and that relationship should be acknowledged. If a family is mourning the loss of a child, specialists recommend that siblings, not only parents, keep memorabilia from the child, such as a lock of hair, a favorite doll, or photographs.
Typical Feelings for Siblings of a Sick Child: Guilt
Feeling excluded can naturally lead to jealousy. Siblings may even wish a sick sibling would die. Then, if their sibling's condition does not improve, or worsens, the well siblings feel guilty or perhaps responsible.
Children ages 3 to 6 years are particularly susceptible. They are what experts call "magical thinkers," who believe their thoughts have the power to hurt others.
A magical thinker who feels jealous of a sibling or wishes for a sibling's death can feel responsible if his sibling's condition does not improve. The sibling's condition may even appear to be punishment for something the magical thinker did. Children at this age are capable of thinking, "Yesterday I stole my brother's toy, and today my brother is even sicker. It's my fault."
Parents can combat the feelings that lead to jealousy and guilt by making sure children feel included and loved and by assuring children that their feelings are normal. Parents should make clear to children of all ages, and magical thinkers in particular, that they had nothing to do with their sibling's illness.
Typical Feelings for Siblings of a Sick Child: Wanting to be Normal
Most children just want things to go back to normal. Parents should make every effort to keep siblings on their regular schedules for school, mealtimes, bedtimes, and extra-curricular activities.
Parents will need to rely on trusted family members and friends to ensure that this happens. Palliative care social workers note that sometimes families want to keep their child's condition to themselves and not ask for help. This is nearly impossible -- and could be detrimental to the well-being of the other children.
When children must be taken out of their normal comfort zones -- for hospital visits or perhaps for serious talks about the circumstances -- they should be permitted to leave the situation at any time.
For example, if children would like to visit their sibling in the hospital, they should be accompanied by an adult who can take them out of the room as soon as they are ready. Child life specialists can serve this function, or the child can come to the hospital accompanied by a relative or family friend.
Children who attend the memorial service of a child who dies should come with an adult who can take them away from the service at any time they ask to leave.
Parents might be hurt when a child wants to leave the bedside or funeral of a sibling, but this is a normal response -- not an indication of indifference on the child's part. Children are not capable of absorbing all the implications of a painful situation all at once as adults are. They don't have the frame of reference that increased life experience provides. While reality sets in, the children will want to return to what's normal for them.
Children may show a similar desire to get back to regular activities when parents try to have a serious talk. For example, after a parent explains a sibling's diagnosis, the child may ask to go back to playing. This doesn't mean the child hasn't heard or understood. Experts advise parents to honor the child's request and participate in the activity in case questions arise.
Typical Behaviors for Siblings of a Sick Child
The range of emotions felt during a sibling's illness can lead to distress. Parents should take the following behaviors as an indication that children are distressed, and that their feelings should be addressed.
- Children of any age can regress to past behaviors, such as bed wetting, thumb sucking, or wanting to sleep in their parents' bed.
6- to 9-year-olds:
- Violent play
- Playing the role of the sick or deceased family member
- Confusion about his own role, i.e. "Am I the big brother now or am I still the middle brother?"
9- to 12-year-olds:
- Problems in school, behavioral and/or academic
- Withdrawal from regular activities
- Extreme weight change and eating disorders
- Suicidal thoughts
- Weight change and eating disorders
- Substance abuse
- Opposition to or defiance of parents; struggling to become more independent from parents while parents may cling more to the child
- Suicidal thoughts
How Can Palliative Care Help Siblings of a Sick Child?
Many hospitals have groups or organized therapeutic activities for siblings of seriously ill children. Caregivers also refer families to community resources, including summer camps and other recreational programs.
Pediatric psychiatrists and licensed clinical social workers are trained to help families manage grief and the demands of caring for a chronically ill child
Child-life specialists give individualized attention to siblings of sick children. They help identify siblings' needs, talk to them about difficult topics, and coach parents on how to talk to their kids and answer their questions. Specialists also prepare children to visit a sibling in the hospital, explain procedures and diagnoses using props, and offer expressive outlets through guided art and play activities.
With parents' permission, specialists can work with the children's schools. Experts stress the importance of letting school teachers know what's happening. Teachers can then look for and understand signs of distress. PAC specialists can coach teachers and counselors on how to address the needs of siblings and other students impacted by the circumstances. They can also can give presentations for the classmates of sick children and their siblings.
Chronic or life-limiting conditions bring a host of new responsibilities for parents. Among them are the new and unique needs of all their children. PAC specialists can help parents nurture all their children through this difficult time.