Study: Sibling Response to Chronic Cleft Conditions

Posted on November 3, 2016

It is natural for adults to focus their attention on a child who has a chronic disease or disability, but what happens to the siblings of that child? Research on chronic disease and disability has shown that unaffected children often have poorer psychological functioning as a result of their affected sibling’s condition. Children born with a cleft lip and/or palate (CL/P) will experience surgeries, frequent doctor visits, and therapy as a result of this condition; however, in supporting these children through the process, their parents often unintentionally overlook the siblings.

To explore the effects of CL/P treatment on all family members, the authors of an article published in the The Cleft Palate-Craniofacial Journal detailed their in-depth interviews with five siblings and eight parents of children born with CL/P. Siblings had an average age of 17 years and the parents 48 years. The authors found that unaffected siblings had a wide range of reactions to dealing with their affected sibling’s condition. Some children felt obligated to take on a protector role and often more responsibility for the affected child, whereas others demonstrated an attention-seeking behavior because they felt neglected. There were also children who suffered from stress and anxiety about not knowing the details of the condition and its treatment.

During these interviews, the authors were able to gain the perspective of how the siblings coped with the stress of having an affected family member; the parents were also able to realize and comment about their unaffected child’s struggles. The interviews revealed that the more information given to the unaffected child, the more help this provided to his or her overall understanding. In addition, interviews revealed that having a stronger support network for siblings within the CL/P community would help to relieve some anxiety surrounding the situation.

Author Nicola Stock commented, “The study provided insight into a population that is often overlooked in the context of cleft care, and highlighted a number of practical solutions, both within the clinical setting and within the cleft community. Above all, the study demonstrated that an inclusive approach to health care, which is encompassing all members of the family, is essential for optimal familial adjustment. As well as ‘normalizing’ the process for siblings and reducing distress, being involved in the treatment process may empower them to learn about cleft, to feel included, and to report positive consequences of growing up in an affected family.”

Overall, it was noted that sibling rivalry is very common among nearly all children vying for adult attention, but it is greatly intensified when one child has a condition that demands extra attention. However, with proper knowledge and support, the family as a whole will have a more positive experience that can potentially bring them closer together.

Full text of the article, “The Psychosocial Impact of Cleft Lip and/or Palate on Unaffected Sibling,” The Cleft Palate–Craniofacial Journal, Vol. 53, No. 6, 2016, is available at


© 2019 AEGIS Communications | Privacy Policy