Mothers' experiences when their infants were diagnosed with cleft lips and / or palates: research

Abstract

Traditionally the diagnosis of cleft lip and palate was made at birth or soon thereafter, but modern technology has led to the identification of cleft lip prenatally. The aim of this study was to describe 16 mothers' experiences of pre- and postnatal diagnosis of their infants' cleft lip and palate, and to develop clinical guidelines for craniofacial team members, to meet parental expectations and needs in both pre- and postnatal periods. In order to provide the best possible care to each affected child and the most effective support to each mother, it is of the utmost importance that craniofacial teams have guidelines to assist them in developing a more accountable, effective and sensitive service to these mothers. An exploratory, descriptive quantitative survey research design was selected to describe mothers' reactions to and perceptions of the pre- and postnatal diagnosis. Scheduled structured interviews were used as a data collecting technique. The results indicated that, irrespective of the time of diagnosis, the mothers required support that included emotional support, information, interaction with other parents of children with clefts, and a team approach. This study emphasised the importance of understanding parental preferences in order to enhance the team approach and also highlighted the need for further research.

Tradisioneel is die diagnose van gesplete lip en verhemelte met geboorte, of kort daarna gemaak, maar moderne tegnologie het gelei tot die identifikasie van gesplete lip prenataal. Die doel van hierdie studie was om 16 moeders se ervarings van die pre- en postnatale diagnose van hul babas se gesplete lip en verhemelte, te beskryf, en om sodoende kliniese riglyne te ontwikkel vir kraniofasiale spanlede, ten einde hulle toe te rus om aan ouers se behoeftes te voldoen in die pre- en postnatale periodes. Ten einde die beste moontlike versorging te bied aan elke kind wat geaffekteer is, en aan elke moeder die mees effektiewe ondersteuning te gee, is dit uiters belangrik dat die kraniofasiale spanlede oor riglyne sal beskik wat hulle sal ondersteun om 'n meer verantwoordbare, effektiewe en sensitiewe diens te lewer. 'n Beskrywende kwantitatiewe opname navorsingsontwerp is gekies om moeders se reaksies en persepsies van die pre- en postnatale diagnose te beskryf. Geskeduleerde, gestruktureerde onderhoude is gebruik as data opname tegniek. Die resultate het aangedui dat ongeag die tyd van diagnose, moeders ondersteuning benodig. Hierdie ondersteuning sluit in emosionele ondersteuning, inligting, interaksie met ander ouers van kinders met gesplete lip en / of verhemelte, en 'n spanbenadering. Die resultate het die behoefte aan verdere navorsing na vore gebring.

(Health SA Gesondheid: interdisciplinary research journal: 2002 7(2): 56-67)