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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


Ella Guest
Occasional Associate Lecturer - HAS HSS

Gillian McCarthy

Claire Cunniffe

Nicola Stock
Occasional Associate Lecturer - HAS - HSS


© 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.


Guest, E., Costa, B., McCarthy, G., Cunniffe, C., & Stock, N. M. (2019). The Experiences and Support Needs of Grandparents of Children Born With Cleft Lip and/or Palate. Cleft Palate-Craniofacial Journal, 56(9), 1181-1186.

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
Keywords cleft lip and palate, family, psychological adjustment, support, grandparents, qualitative analysis, visible difference
Public URL
Additional Information Additional Information : Copyright(c)2019 Reprinted by permission of SAGE publications.


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