Navigating the Hospital pt.4

Navigating the Hospital: Caring for your Children remaining at home

Caring for a child in the hospital can be an all-consuming task especially while trying to build and maintain attachment. The Hospital experience may feel like it takes all of your energy, all of your time, and all of your capacity. In previous articles we have discussed how to best support your child in the hospital, care for yourself, and navigate this overall experience, but it is vital to keep in mind the needs of your children at home. While parents are encouraged to be with their hospitalized child almost 24/7, this unfortunately increases the amount of time parents are separated from their children at home. Research has shown that siblings of all ages are not immune from being impacted by a brother’s or sister’s hospitalization. It can be helpful to see how siblings can be uniquely impacted by a child’s hospitalization and then look at ways to support them and meet their specific needs.

Knowing your child:  Past articles mentioned understanding the developmental level of your hospitalized child, it is also helpful to understand where your children, who are not hospitalized, are developmentally. Understanding their development can help you know where your child is vulnerable and could be impacted by the hospitalization.

  •  Infant (0-1 years): Children in this stage are building attachment with those around  them and learning under what circumstances they can trust or mistrust  others. They are also exploring the world around them and exploring the concept of cause and effect. The separation between the infant and their caregivers may attachment building due to the interruption.
  • Toddler (1-3 years): Toddlers are seeking to learn autonomy and in what situations they are allowed to do things on their own and when they have to depend on others. At this age they  have an increased understanding of symbolization and what that means for the world around them. Toddlers have an egocentric perspective on the world, meaning they only see their perspective and how they are affected by things, rather someone else’s perspective or how they may be impacted. In this stage, children may be impacted by change in routine and separation from caregivers due to egocentric thinking and not understanding the big picture
  • Preschooler (3-6 years):  Preschoolers are in a transition period, between depending solely on perception and depending on more logical thinking. They are also beginning to understand that there may be one or more factors influencing an event. Due to an increase value in independence, the child may be significantly impacted if there is a change in routine that inhibits their learning and independence
  • School-Age (6-12 years): School-age children are beginning to increase their ability to think logically in concrete circumstances and better understand the importance or meaning of order, sequence, and order of actions. A child in this stage of development may be most impacted by a lack of information or the lack of inclusion on sibling’s care.
  • Adolescent (12-18 years):  Adolescents are in the midst of forming their identity and their place and role in the world around them. They also have increased deductive and abstract thinking.   Adolescent siblings may be most impacted by change in routines if it inhibits their peer relationships or social and identity development.

Potential Impact and Stressors :

  • Major changes in day to day routine: Well-siblings of hospitalized children may have to stay somewhere other than their own home, possibly the home of a grandparent, aunt, uncle or close friend. Children may also have to experience unexpected absences from school or extracurricular activities. These deviations to their daily routine can impact the child psychologically and socially. When a child is taken out of their routine they may feel as if their needs are not a priority. Changes in normal routine can disrupt relationship with peers. This can be particularly impactful to an adolescent’s adjustment because their peer relationships and social standing/status is highly important and valued in adolescence.
  • Separation from parents and siblings: When your child is hospitalized the well-sibling may experience separation from the hospitalized child as well as you, their parents or caregivers. The separation between the siblings may be extensive if the hospital has strict visitation guidelines or other health protocols in place. For a recently adopted child, the well-sibling may not feel as if they are able to get to know and build a relationship with them.
  • Fear of upsetting parents or hospitalized sibling: Well-siblings at home may form misconceptions or internalize their feelings and fears if they are afraid of upsetting their parents or sibling that is in the hospital. The children at home may see how upset or stressed their parents are during the hospitalization and may not want to trigger them or make them upset by asking questions or talking about how they are feeling.
  • Lack of information: The well-siblings may not feel as if they are in the loop with their sibling’s hospitalization. You may feel, as their parent, they do not need a lot of information. You may not know exactly how to give them the information they need on their developmental level. The lack of information may also bring the well-sibling to a place of feeling as if they are not a part of the child’s care or hospital experience.
  • Fear of the unknown: Just as the hospitalized child can be afraid of the unknown, the well-sibling can be afraid of the unknown in regard to what may happen to their sibling in the hospital and what that means for their family.

Tips for meeting the needs of well siblings and addressing sibling stressors: 

  • Major changes in daily routine and family dynamics: It is beneficial to maintain a normal routine, as much as possible. With both parents needed at the hospital, disruption in a well-sibling’s daily routine is understandable. For the non-hospitalized child try to keep to their daily routine as much as possible. In order to do this, it will be important to have a strong support system and rely on those around you to maintain your child/children’s normal routine.
  • Separation from parents and siblings: Balancing the amount of time each parent spends at the hospital can help address the feelings of exclusion or extended separation between parents and children.  Sit down as a family at the start of the hospitalization and formulate a tentative plan for the family. It is helpful to have a tentative plan set out for the role of each family member during the hospitalization. This can help the children at home feel as if they are not being excluded from hospitalization and gives them a role in the experience. Scheduling regular visits, phone calls, and facetime calls between siblings can be helpful in addressing sibling separation.   Promoting family unity and togetherness. Speak with the hospitalized child’s nurse or child life specialist to determine ways the well-sibling can be involved in the hospitalized child’s care and foster a strong sibling relationship.
  • Fear of upsetting the parent or hospitalized child: An open line of communication from the beginning of the hospitalization will provide space and time for your child to share their feelings and have their questions answered.  Reassure your child that their questions do not upset you, that you want to know about their concerns.   If it becomes apparent that your well child is not able to open up to you, it may be helpful to designate a mentor or confidant for your child. Having someone, whether that be a grandparent, aunt, or close family friend, that your child can go to with their questions, concerns or feelings can give them an additional outlet to express themselves during this difficult experience.
  • Lack of Information: Well-siblings may feel as if they are not being given information regarding their sibling’s hospitalization and do not fully understand what is happening. It is important to make sure you are giving your well-children as much information as developmentally appropriate. If you are unsure of how much is too much, or how to put difficult information on your child’s level, ask your child life specialist, your social worker or anyone else on your child’s care team. They are there to support the whole family. Family meetings can be a useful tool in making sure that everyone has the same information and is on the same page. As appropriate explain medical terms, and what a medical procedure entails. Have your child repeat back to you what they have been told, so that you can clarify any misunderstandings. Your child may have questions that you are unable to answer.  Answer honestly. It is ok to say that you don’t know or that the doctors don’t know.  Following are books that may help you navigate these discussions.

Resources (Children’s Books):

When Someone Has a Very Serious Illness: Children Can Learn to Cope with Loss and Change: Marge Heegaard

When Molly Was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children (Minimed Series: Volume 1): Debbie Duncan

Noah’s Garden: When Someone You Love is in the Hospital: Mo Johnson

What About Me?: Well Children With Sick Siblings: William Bentrim

The Invisible String: Patrice Karst

What About Me?: When Brothers and Sisters Get Sick: Allan Peterkin

Sometimes: Rebecca Elliott

Conclusion: When you look at the big picture of how a hospitalization may impact each of your children and your family as a whole, you may become overwhelmed with all that is on your plate and how to prioritize then needs of each family member. The best thing you can do is understand that you cannot be everything to all people. When caring for both your hospitalized child and your well-children at home, open communication and working together as a family unit is key. Finally, do not be afraid to ask for help from your support system or admit that you are unsure of what step to take next.  Know that you Lifeline caseworker is always available to help with additional resources.

Developed by: Charlie Ann Bishop , CCLS

Reference: Meeting Children’s Psychosocial Needs Across the Healthcare Continuum                                                                     (2005) By: Judy Rollins, Rosemary Bolig, and Carmel Mahan