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Experiences and support needs of grandparents of children born with cleft lip and/or palate

Guest, E; Costa, B; McCarthy, G; Cunniffe, C; Stock, NM


G McCarthy

C Cunniffe


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 semi-structured telephone interviews were carried out with 12 grandparents of children born with CL/P, and were analysed 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 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 organisations could consider how existing resources could be made more accessible to and/or adapted for wider family members, including grandparents.

Journal Article Type Article
Journal Cleft Palate-Craniofacial Journal
Print ISSN 1055-6656
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Institution Citation Guest, E., Costa, B., McCarthy, G., Cunniffe, C., & Stock, N. (in press). Experiences and support needs of grandparents of children born with cleft lip and/or palate. Cleft Palate-Craniofacial Journal,
Keywords cleft lip and palate, family, psychological adjustment, support, grandparents, qualitative analysis, visible difference
Additional Information Additional Information : Copyright(c)2019 Reprinted by permission of SAGE publications.


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