The Psychosocial Impact of Cleft Lip and/or Palate on Unaffected Siblings

Abstract

Background Sibling relationships are among the most unique social connections, significantly affecting psychosocial adjustment. Previous reviews in the fields of chronic illness and disability have concluded that unaffected siblings of children with long-term conditions are at risk of poorer psychological functioning as a consequence. Much research has investigated the psychosocial impact of CL/P on affected individuals and their parents, yet comparatively little is known about the impact on other close family members. Objective To gain a better understanding of the experience of unaffected siblings of children born with CL/P, with a view to informing service provision and support. Design Individual qualitative interviews conducted over the telephone/Internet with five siblings and eight parents, including five sibling-parent pairs from the same family. Results Thematic analysis identified three key themes applicable across both parent and sibling interviews: perceptions of positive and negative impacts, factors affecting the degree of impact, and support for families. Conclusions This study provides insight into a population that is often overlooked in the context of cleft care. The analysis identified a number of sibling support and information needs, along with suggestions of how to incorporate support for siblings in practice. The findings suggest that an inclusive approach to health care encompassing all members of the family is essential for optimal familial adjustment.