Get Well Map Foundation is proud to feature this special blog post highlighting Sibling Support. Many thanks to Jennifer Kelley, Child Life Specialist for championing efforts to advance Patient & Family-Centered Care Initiatives at Nemours Center for Cancer & Blood Disorders in Wilmington, DE. Child Life Specialists play an amazing and critical role in bridging the needs of children, families and healthcare professionals when children and families are faced with medical challenges.
Having a child in the hospital is undoubtedly a difficult experience. There are many emotions and a necessary hyper focus on the hospitalized child, but what about when there are siblings? Who is caring for them?… How much do they understand about what is going on?… Are they missing their brother or sister? These are just a few questions that come to mind when a family is coping with a child in the hospital. As parents begin to think about how to answer some of these questions, it is helpful to know there are resources that can be accessed while in the hospital. Child Life Specialists are clinical members of the healthcare team trained to help patients and families cope with hospitalization, and in particular, play an instrumental role in working with siblings.
When a Child Life Specialist initially meets a family admitted to the hospital, there are a series of questions intertwined in the conversation to better understand potential sibling needs. Child Life Specialists are skilled in the art of conversation which allows a simple discussion to unveil important insight into the potential needs of the family. When beginning to learn about the sibling needs, it is through gentle guidance that emotional support for these children is offered. It is imperative to remember that parents know their children best and Child Life Specialists use this knowledge, along with knowledge of child development, to formulate a plan to provide psychosocial support to siblings.
Child Life Specialists believe in the benefits of preparation in regards to all aspects of hospitalization. One specific area is the preparation of siblings about to enter the hospital environment. Sometimes it’s explaining the things the child will see and hear and sometimes it needs to go deeper, particularly, if the hospitalized child is in an intensive care area or if their brother or sister’s appearance is altered in any way. For example, if a patient’s illness or injury led to the need for tubes/lines attached to the body, this could be frightening for their brother or sister to see. We know that if not given proper information about these changes, children tend to fill in the blanks on their own…often incorrectly. Through simple, concrete language, siblings can better understand, and therefore more positively cope and feel less intimidated with the hospital experience. For some situations, especially those requiring intensive care treatment, Child Life Specialists often make a personalized picture book to enhance the preparation. These books consist of pictures of the unit, the staff, the room and its equipment, and then the patient. Similar to desensitization, the book often begins with simple pictures and leads to more sensitive images.
Preparation leads into education. Child Life Specialists understand the importance of providing and sharing developmentally appropriate information with patients and siblings alike. Teaching siblings, based on their unique developmental level and learning style, promotes overall better coping for the family. Teaching can be provided specifically about the hospital experience, a new diagnosis, and the effects of the illness or injury on the patient and family. Through preparation and education sessions, Child Life Specialists also provide a safe space that encourages siblings to express their emotions related to their brother or sister’s hospitalization.
Sometimes, depending on whether the illness or injury of the patient is going to lead to chronic or long-term care, sibling support will need to be ongoing. This might include multiple sessions working with a Child Life Specialist or other clinical team members such as a Social Worker. There are many additional resources, such as support groups and camps specifically designed to support siblings. Often these programs are specific to an illness or injury and can provide a unique experience where siblings can connect with other children experiencing something very similar. The clinical team can also reach out to siblings’ schools to work cohesively with a teacher and/or counselor to promote continued sibling support in the school setting.
Another area of focus, in regards to siblings, is normalization. A pillar of family-centered care is the thought that keeping family units together provides the maximum amount of support for the family. Sometimes, it’s easy for siblings to visit the hospital, especially when there are very few visitation restrictions. The family might live close or it might be summertime when school is out. What about a family that doesn’t have the resources to bring their other children to the hospital or lives far away? This is where Child Life Specialists work creatively to promote the continued connection of siblings and the patient. With today’s technology, using FaceTime, Zoom or Skype can be hugely beneficial. The idea of sending letters or drawings back and forth from home to the hospital is another example of a fun way to promote bonding and inclusiveness.
As mentioned earlier, hospitalization leads to a primary focus on the patient (and for valid reason). However, this can lead to siblings feeling disconnected or left out. There may be a shift in role responsibility for well siblings who now need to do more to help compensate while a parent is at the hospital. There may be inconsistency with who is caring for the siblings temporarily, or unpredictability with where and when they will be watched by other adults trying to help the family. Siblings may not be able to attend after-school activities or keep their normal routines. Additionally, siblings have reported feeling that everyone shows concern over the patient and does not ask about them. For family and friends, there are some ways to help well siblings feel included. For example, family members and friends can encourage conversation with well siblings focused on what is happening outside of the hospital, such as in school or with their friends. Those who plan on bringing gifts for the patient might consider bringing items for the family to use together. Additionally, one of the best ways to help siblings is by promoting normalcy through continued involvement in school and other activities. Keeping structure tends to help the entire family cope through these experiences.
When a family experiences the difficult journey of having a child hospitalized, it affects and impacts everyone. With the help of Child Life Specialists and other members of the healthcare team, there is valuable support available to help everyone, including siblings, cope in the best way possible for them. Siblings, in particular can benefit greatly from supportive services that can significantly help siblings better understand and process the hospital experience while keeping their connection with their brother or sister.
If you think you or your family might benefit from child life services, please ask your healthcare team. To learn more information, visit childlife.org.
Jennifer Kelley, CCLS received her degree in Child Development from San Diego State University, and has been working as a Certified Child Life Specialist since 2011. In addition to Jenn’s work in Creative Arts Therapy & School Programs, Jenn works collaboratively with pediatric oncology patients, families and medical teams at Nemours Center for Cancer and Blood Disorders in Wilmington, Delaware.
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