The psychological impact of cleft lip and/or palate on unaffected siblings

Stock, Nicola Marie; Stoneman, Katie; Cunniffe, Claire; Rumsey, Nichola

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.

• Journal Article Type: Article
• Acceptance Date: Aug 17, 2015
• Online Publication Date: Nov 1, 2016
• Publication Date: Nov 1, 2016
• Deposit Date: Jan 4, 2016
• Publicly Available Date: Mar 28, 2018
• Journal: The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association
• Print ISSN: 1055-6656
• Electronic ISSN: 1545-1569
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• Volume: 53
• Issue: 6
• Pages: 670-682
• DOI: https://doi.org/10.1597/15-148
• Keywords: cleft lip and palate, psychological adjustment, sibling, family, visible difference
• Public URL: https://uwe-repository.worktribe.com/output/909011
• Publisher URL: http://journals.sagepub.com/doi/full/10.1597/15-148
• Additional Information: Additional Information : © 2016. Reprinted by permission of SAGE Publications
• Contract Date: Jun 8, 2016