As genetic counselors, we frequently deliver difficult news and provide support to parents and caregivers. When they have additional children, providing this support to siblings often falls on parents who are themselves markedly impacted by the diagnosis.
It is well understood genetic disease confers significant emotional, psychological, social, and financial burden on families – and siblings of those with genetic disease are likewise impacted. We wish to increase genetic counselor awareness of existing resources for siblings and encourage the development of further sibling support.
Siblings witness the effects of genetic disease on a daily basis. However, they often hold questions about the underlying cause of the disease, symptoms, and progression. Without this information, siblings can be left with unanswered questions and misconceptions. This can have a significant impact on personal well-being, as well as their relationship with their siblings and family.
Siblings’ worries are many and start at a young age: why did the disease happen? Could I have the disease too? Will my brother ever walk or talk? Who will take care of my sister in the future? Will my children be sick too?
Many siblings report feeling a lack of parental attention – and whether this is perceived or actual, the psychological impacts of this are very real. Indeed, the term “glass children” has been coined for siblings of a person with a disability due to a feeling that others ‘look right through them’ and that they are ‘unseen’ in comparison to their siblings. Siblings may feel guilty for needing attention and for asking questions, or even feel jealousy.
Throughout adolescence and especially in adulthood, siblings often take on caretaking responsibilities and may face complex reproductive decision-making (such as learning their own carrier status). Many siblings experience the complicated and intense emotions of grief (including anticipatory grief), loss, and survivor’s guilt. If their sibling has passed away, even benign questions like ‘how many siblings do you have?’ may be upsetting and confusing. In all, siblings of those with genetic diseases are impacted significantly throughout their life.
Genetic counselors are poised to help with these challenges: we have training in psychosocial counseling, commonly work with families, and understand the impacts of cascade genetic testing. While we have training that would facilitate this support, there often remains a gap in how frequently siblings are included in conversations regarding genetic disease.
As learning is typically the first step in addressing any gap, we recommend instruction in genetic counseling training programs as well as continued educational opportunities on this topic. Similarly, we encourage more research on the sibling experience to help improve the field’s understanding.
Simple next steps genetic counselors may take include sharing resources, becoming aware of local support groups, and including or offering to include siblings in conversations about genetic testing, results disclosure, and follow-up in an age-appropriate manner.
Helpful questions to ask parents and siblings during counseling sessions:
- Parents: Do you have any other children? [How] do you plan to discuss these results with them? Would you like to practice what you are going to say? Would it be helpful if I provided any visuals or metaphors for you to use during those conversations? What worries do you have about these conversations?
- Siblings: What do you know about your sibling's disease? What questions do you have about your sibling? What makes you feel worried about your sibling? When your friends at school ask about your sibling, what do you tell them? When you feel worried about your sibling, what do you do, or who do you talk to?
Resources to share with parents and siblings
- Rare Sibling Stories (linktr.ee/raresiblingstories)
- Sibling Leadership Network (https://siblingleadership.org)
- SibShops (https://siblingsupport.org)
We are hoping to begin a Family Support special interest group (SIG) through NSGC. This SIG would aim to compile, improve, and disseminate resources for siblings, parents, partners, and other family members impacted by genetic disease as well as invite families to speak to the SIG about their experiences. If you are interested in helping establish or participating in this SIG, please contact us at firstname.lastname@example.org and email@example.com.