Psychosocial and socioeconomically aspects of mothers having a child with cleft lip and/or palate (CL/P): a pilot-study during the first year of life

Background The emotional impact on parents at the birth of their new-born with cleft lip and/or palate (CL/P) can be traumatic for parents, especially mothers, and affect the sensitive early parent-child relationship. Unlike many other congenital malformations facial deformities are visible to all. The uncommon facial appearance creates feelings and reactions in the mother, families and other people. Only few studies deal with this psychosocial burden of these mothers. Material and Methods This pilot-study deals with mothers’ early experiences (n=84) having a child with CL/P. Mothers were asked to complete a questionnaire at diagnosis, birth and after lip surgery. The questions were focused on the social background of the mother (educational degree, marital status, lifestyle and prenatal care), the medical information at diagnosis and the following reaction. The surveys were administrated from 01/2014 – 12/2016. Results 84 mothers of affected children (CL/P) replied the completed questionnaire (84/103, 81.5%). At diagnosis 65 mothers (77%) lived in a solid partnership and 44% worked full-time (40h). The diagnosis caused fear among the mothers (60.7%, p≤0.01), despair (27.4%, p≤0.01), grief (17.9%, p≤0.01) and guilt (16.7%, p≤0.01). Despite the emotional stress after the diagnosis only 5 mothers asked for psychological support (6.0%). The medical information by the gynecologist (41.6%) or maxillofacial surgeon (32.2%) was rated as “good” (n=26) or “very good” (n=26) in 60.2%. A lack of medical information and care was rated with “insufficient” (11.9%) or “poor” (14.3%). Conclusions There are only few studies about mothers’ early feelings and emotions having a child with a CL/P. We found high parental stress, physical and emotional strain among the mothers after diagnosis, mostly caused due to insufficient information’s. This stress was not correlated with the educational level and CLP appearance showed no relation about the socioeconomic status. Key words:Cleft lip/palate, mother’s emotional experience, psychosocial aspects