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

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.