The Experiences and Support Needs of Grandparents of Children Born With Cleft Lip and/or Palate

Guest, Ella; Costa, Bruna; McCarthy, Gillian; Cunniffe, Claire; Stock, Nicola Marie

Abstract

© 2019, American Cleft Palate-Craniofacial Association. Objective: The birth of a child with a cleft lip and/or palate (CL/P) can have a significant emotional and social impact on parents. Yet, the impact on the wider family is rarely investigated. Grandparents are becoming increasingly involved in the care of their grandchildren and may therefore have support needs of their own. The aim of the current study was to explore the experiences and support needs of grandparents of children born with CL/P. Design: Individual semistructured telephone interviews were carried out with 12 grandparents of children born with CL/P and were analyzed using inductive thematic analysis. Results: Five themes were identified (1) emotional impact of CL/P on grandparents, (2) grandparents’ social experiences, (3) grandparents’ involvement, (4) grandparents’ information needs, and (5) grandparents’ support needs. Participants experienced difficult emotions around the time of diagnosis and were concerned about the child’s treatment and future experiences. Participants played a significant role in supporting the whole family, but received little information or support themselves. Conclusions: Grandparents reported experiences comparable to published literature on parents. Clinicians and charitable organizations could consider how existing resources could be made more accessible to and/or adapted for wider family members, including grandparents.

• Journal Article Type: Article
• Acceptance Date: Apr 22, 2019
• Online Publication Date: May 29, 2019
• Publication Date: Oct 1, 2019
• Deposit Date: Apr 24, 2019
• Publicly Available Date: Apr 24, 2019
• Journal: Cleft Palate-Craniofacial Journal
• Print ISSN: 1055-6656
• Electronic ISSN: 1545-1569
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• Volume: 56
• Issue: 9
• Pages: 1181-1186
• DOI: https://doi.org/10.1177/1055665619850709
• Keywords: cleft lip and palate, family, psychological adjustment, support, grandparents, qualitative analysis, visible difference
• Public URL: https://uwe-repository.worktribe.com/output/848349
• Additional Information: Additional Information : Copyright(c)2019 Reprinted by permission of SAGE publications.
• Contract Date: Apr 24, 2019