Parents’ experiences of having a child with cleft lip and palate

Abstract

Parents did not look upon their child as handicapped but as having a congenital defect or 'flaw'. The findings of this study could be used in staff education to promote understanding of parents' experiences and how best to help them. They could also be used in the general media to improve public understanding. Future research could explore staff perceptions of this sensitive clinical area.

Patterns of parental emotional reactions after a pre- or postnatal diagnosis of a congenital anomaly

“…Less often reported are positive emotions like relief (when a prognosis and treatment options are presented) (Petrucelli et al, 1998) and hope, which may be associated with the parental belief that their infant will manage well, despite the DCA, or with the expectation that the diagnosis was a mistake (Johansson & Ringsberg, 2004;Sommerseth & Sundby, 2010).…”

Mother’s of Children with Cleft Lip and/or Palate, Perception about Aetiology, Social Reaction and Treatment of Cleft

“…They have to cope with their child's handicap and the current standardised treatment procedures which start in early infancy. This finding is different from a study where parents did not look upon their child as handicapped but as having a congenital defect or "flaw" [3]. But in another study in Uganda, about 91.7% of the medical staff reported that these children were not accepted in their communities [8].…”

Psychological Impact of Repair Surgery in Cleft Lip and Palate

“…Expectations of having a healthy baby need to be assimilated as well as an understanding of the various elements of CLP, such as surgery. Social support has been highlighted as being useful in the process of coping, as well as perceived support from professionals involved in the child's care [11,17]. Support from friends and family has been linked with lower distress, better adjustment and less negative family impact.…”

“…Social support was also identified as a coping strategy used by parents [18], as well as intensification of partnership, self-respect and fulfilment, with a positive approach being particularly important. The significance of support from other parents has also been highlighted [11,15].…”

“…Worries related to the procedure have included timing (of the procedure, duration and recovery), side effects, the care involved, whether additional tissue was required for the repair, techniques used, outcomes of surgery and pain. In a retrospective study focusing on parental experience, parents' anxieties around surgery included the anaesthetic, risks of infection, the possibility that surgery would not be successful and what their child would look like following the repair [11]. Other aspects of care by the team have also been identified as important to parents including communication with professionals, empathy, postsurgical care and discharge management; with the preparation for surgery, as well as the discharge, being more significant than the time of the surgery itself [8].…”