RESUMO
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.
RESUMO
The aim of the study was to describe the attractiveness of a newborn with CL/P and the maternal reaction in relation to the child. Another purpose was to explore and describe the experience and subjectively perceived reaction of the mother and the social environment to the child before and after cleft lip surgery. MATERIAL AND METHODS: A study to describe and evaluate mothers' experiences, feelings and emotions (n = 84) regarding having a child with CL/P was performed. Therefore mothers were asked to complete a self-reported, standardized Likert-scale questionnaire. The questions were focused on the mother's own experiences, and the reaction of close family members and the social environment (friends, unknown people) to the child. Therefore two essential situations during the first year of life were analyzed: the first contact with the child, and a second one after lip surgery. The influence of lip reconstruction on the attractiveness of the child and the following reactions were analyzed. The timeline includes surveys from 01/2014 to 12/2016. RESULTS: 84 mothers of affected children (CL/P) replied to the questionnaire (84/103). Most mothers (n = 64) described the attractiveness of their child at birth as "very good" (n = 37) and "good" (n = 27). After lip reconstruction the subjective attractiveness in the mothers' opinions increased to 90.5% (n = 76): 24 "good" (p = 0.23) and 52 "very good" (p = 0.73). 50 mothers defined the postoperative surgical result as "very good", 21 did not see any improvement (p = 0.001). Poor postoperative evaluations like "very poor" (n = 0), "insufficient" (n = 1) or "sufficient" (n = 1) were found two times. The majority of mothers (n = 78) reported negative reactions of the social environment to the child before lip surgery. Friends reacted in general more positively to the child with the visible deformity than did the social environment. 41 mothers described that their life partner or husband reacted "always" more positively to the child (p = 0.018). After surgical lip closure, strangers (n = 22) and even friends (n = 27) did not change their reactions obviously. CONCLUSION: For the mother, the attractiveness of a child with CL/P is not significantly affected by the visible facial malformation. Even if the lip reconstruction increases the child's attractiveness from the mother's perspective, the often negative reactions of the family and social environment did not change.
