Lighting the way for children with medical complexity
When a child or teen is diagnosed with a life-limiting illness or a medically complex condition, there can be a profound impact on the entire family. Research has shown that siblings can experience the effects, stresses and pressures of the medical situation as much as the parents/caregivers and the child with the life-limiting illness. The medically complex child tends to need more attention from parents and caregivers, and this situation can leave siblings with challenging and difficult feelings.
>> Return to Sibling Toolkit
Good days are peaceful and go smoothly.
Other days, big emotions surface.
It is important to know that these feelings are okay.
It is important to keep in mind that the child with medical complexities is not the only member of the family that needs specific attention and emotional assistance to help them adjust and work through changes and difficulties.
Although siblings may realize why their brother or sister requires a lot of attention, their emotional and mental health can still be impacted.
Parents and siblings describe how siblings experience a range of strong feelings. They describe feeling: marginalized and invisible. They have strong negative feelings including:
* Fear
* Anger
* Sadness
* Abandonment
Siblings also escribe experiencing positive feelings including:
* Being protective of their sibling with the serious
illness
* Pride about their contribution to family life
(Havill et al., 2019; Long et al., 2018; Alderfer et al., 2010)
Siblings often exhibit emotional and behavioral responses. It is important to recognize and encourage signs of growth and strength from siblings. It is equally important to recognize and address concerning behaviors. Siblings’ reactions and responses may change over time as their experience and understanding grows and as they interact with other family members who are also affected. Below is a list of possible behaviors that parents/caregivers may observe:
“As a parent, I watched the behaviors or my oldest and youngest sons while their middle brother battled cancer.
Our oldest son was extra helpful and very protective. He did not express much about how he was feeling. Our youngest son played a lot with his brother especially when he was not feeling well. He asked questions constantly about what was happening. Our oldest son had some anxiety about going to school. Our youngest son seemed calm and very accepting of the entire situation.
We realized in working with our oldest and youngest sons that all children and people react and behave differently in the midst of a really difficult situation - even when they live in the same house and experience the same family dynamics.”
- Jane G., parent
Parents or caregivers can support siblings as they work through challenging, difficult or negative feelings by:
• Developing strategies for comfort, relief, and respite
• Tool for Parents from Courageous Parents Network: Communicating Effectively and Compassionately to Help Siblings Cope https://courageousparentsnetwork.org/guides/helping-siblings-cope/
Download Printable List
Parents describe being concerned about taking care of all of their children and making sure they all feel loved. Parents have also described wanting help and guidance in doing this-they want help in helping their family (Mooney-Doyle et al., 2017).
Open communication between surviving grieving siblings and parents can be protective in helping families going through their grief. Healthcare providers can help support this communication (Akard et al., 2019).
Tips from Teens Who Have a Sibling With Medical Complexities
Keep my sibling’s medical complexities, needs and care plans an open topic. (“Don’t sit down and talk to me like the birds and the bees discussion, though.”)
Offer information frequently in small doses (if parents are open, we will be more open)
Download Printable List
“The stories on many of the websites were powerful and my daughter really enjoyed reading them or listening to them and talking about them when we were finished. She said she would love to connect with other siblings her age online, in a chat room, where they can talk about whatever they want.” – Cassie M., Parent
Communication between parents and siblings can be really important during the time a child is seriously ill. For example, siblings of children who died from cancer described feeling left out of important discussions, not prepared for their sibling’s death, or who feel they missed an opportunity to say goodbye had more negative feelings and distress after the death (Rosenberg et al, 2014)
Don't You Forget About Me: Caring for Siblings
This webinar was originally presented in February 2019 by Yelena Zatulovsky and Dana Richmond. It highlights the experiences of siblings, as told by the siblings themselves, and examines the interventions, strategies, and obstacles toward an effective framework of support that empowers and honors siblings.
This downloadable form gives siblings a voice and allows them to identify their feelings.
DownloadPPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.
The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization. Donations are tax-deductible according to the IRS’s rules and regulations. The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.
