Issues and Resources for Siblings of Children with Rare/Undiagnosed Conditions

By Jennifer L. Young, PhD, AMFT | October 1, 2019 

Sibling relationships are often the longest, closest relationships we have in our lives. All parents hope that their children will get along and become best friends, but this isn’t always the case. And in families with a child that has a rare or undiagnosed disease, building close sibling relationships doesn’t always take the “typical” path that we expect. In this article, I’d like to share some research on sibling relationships in the context of chronic illness, note important red flags that parents should keep an eye out for, and offer some links to resources parents of UDN pediatric participants may find useful.

Research on Siblings Relationships

Research with families has shown that the nature of the chronic illness itself is an important factor in the psychological functioning of the sibling. For example, illnesses that affect daily functioning have a bigger effect on siblings than a condition that needs less intense daily assistance. This may stem from the caregiving demands and amount of parental attention that is required due to the specific condition. Change in amount and quality of parental attention given to each of the children and a reduced level of communication between parents and children can foster jealousy or resentment.

Siblings are more likely to demonstrate internalizing behaviors (such as anxiety or depression) rather than externalizing behaviors when faced with a complex illness in their sibling. They also may feel a lack of freedom to express emotions such as frustration or anger because of their ill sibling, the demands on their parents’ attending, and/or expectations that they provide care to their sibling. However, it is interesting to note that parent reports of child coping are more negative than the reports of the children themselves. This suggests that parents may perceive more negative impacts on their healthy children than the children do themselves.

Although having a sibling with an undiagnosed or rare condition can be incredibly challenging, it also can have positive outcomes for siblings. Siblings of children with complex medical issues can learn important lessons about disability, privilege, and compassion that they can take with them throughout their lives. Building on children’s curiosity, parents can solicit questions and teach them valuable caregiving tasks that make them feel involved in their sibling’s health and well-being. From my experience working with families with rare conditions, I found adults who grew up with a sibling with an illness or disability to be independent, open-minded, and empathic individuals. I have heard many accounts of how a rare condition or illness empowered families to work together to build strong, healthy, and long-lasting family bonds. Families can increase their level of cohesion by emphasizing the importance of the whole family contributing to the child’s care, which can unify families through intentional communication and bonding.

Red Flags and Strategies for Responding

Next, I’d like to cover some family patterns or child behaviors that may emerge among siblings of chronically ill children that may be concerning to parents, and suggestions for how to respond if you see these behaviors.

1) The “parentified child”: This happens when a child takes on the role of an adult in the family, sometimes due to being the caretaker for their younger siblings, or diffusing conflict between their parents. If you notice your child becoming quieter or less vocal about their needs or opinions, and more involved in the care of others, they may be taking on the identity of a parentified child or adultified child. If you notice these behaviors, focus on making sure your children feel safe and secure, even in potentially uncertain times. Let them know that it is ok to feel, experience, and share their emotions. These are normal reactions, and you can teach them that they have the power to decide what to do with those emotions. Additionally, try to reassure your child that their needs are important, and that they shouldn’t suppress them for the benefit of other people, including their sibling with a rare or undiagnosed condition.

2) High conflict sibling relationships: Adjustment to sibling illness can occur in a range of ways. Sometimes children who are feeling changes in parental attention, fear or uncertainty may seek attention from their parents in negative ways. While this behavior can be normal and temporary, parents should closely monitor siblings if they are concerned that they are demonstrating regular abusive verbal or nonverbal behavior towards the child with the rare/undiagnosed condition, beyond typical sibling arguments or disagreements. If you notice this behavior, one strategy it to intentionally set aside one-on-one time with the sibling. This doesn’t have to be an extended period of time, but regular “special” time where the child gets undivided attention from the parent/parents can help foster secure attachment and positive memory building.

Resources for Families

If you and your family are struggling, the following resources are available to families with a child/children with rare/undiagnosed condition:

1) Medical Family Therapists are trained counselors who are familiar with the impacts of illness across family systems, and interventions that can help families cope as a whole. It may be tempting to seek therapy for the sibling alone, but often a shift in the entire family system is necessary to make lasting change and build resilience. Talk to your child about whether they would prefer sessions with a therapist alone or together with other family members. Online resources, such as the Psychology Today therapist locator, can be used to search for mental health resources in your area. On this site you can search for therapists who specialize in “chronic illness” and/or for someone local who has experience specifically with “medical family therapy.”

2) Sibling support groups can be helpful for decreasing feelings of isolation and building friendships. Your local children’s hospital will often offer these types of support groups, or you can visit the Sibling Support Project for online support groups and other resources.

3) Parenting psychoeducation classes can guide parents in ways to talk to their children about illness and help parents deal with their own concerns about sibling relationships. These classes are often offered by local healthcare providers, hospitals and community organizations. You can find descriptions of a variety of different types of classes at The Child Mind Institute.

To conclude, if you and your family are struggling with managing the challenges of caring for a child with a rare or undiagnosed disease, please don’t feel like you need to handle this alone. Reach out for help, from peers and professionals, to support you in this journey.