Parental perspectives of children born with cleft lip and/or palate: a qualitative assessment of suggestions for healthcare improvements and interventions.

OBJECTIVE

To assess parental perspectives on effective interventions and to summarize parents' suggestions for health care professionals to improve the care provided to their children born with cleft lip and/or palate.

DESIGN

Qualitative interviews.

SETTING

Comprehensive craniofacial center at a Midwest pediatric hospital.

PARTICIPANTS

Seventeen parents of children under the age of 1 who were born with CL/P.

RESULTS

Interventions that parents identified as effective included repetition of information, showing pictures of other children (before and after surgery), and anticipatory guidance about surgeries and their child's development. Despite the high level of satisfaction, parents expressed a desire for health care professionals to use more written and visual information, to have more contact with other parents of children born with clefts, and for health care professionals outside the Craniofacial Center to be more knowledgeable about CL/P.

CONCLUSIONS

Although parents of children with CL/P were for the most part satisfied with their children's care, the parents who were interviewed for this study suggested attainable changes that may result in more constructive and positive involvement of parents as integral members of the craniofacial team.