Psychosocial status of families raising children with congenital cleft lip and/or palate

Families with children with congenital cleft lip and/or palate (CCL/P) often have to deal with problems related to the attitudes and reactions of others to the developmental anomaly, as well as with teasing, bullying and social isolation. This can have a negative impact both on the quality of life of the parents themselves and on the treatment and rehabilitation process, which affects the psychosocial well-being of the child. The aim of the study was to identify the psychosocial status of families raising children with congenital cleft upper lip and/or palate. Material and methods. The study was conducted with the participation of 393 families raising children with CCL/P. A survey was conducted among parents to identify their psychosocial status, peculiarities of the treatment and rehabilitation process. The data were analyzed with the help of Excel Windows 16 “data analysis” package. Results. Only 1/3 of the participants (32,1 %) were informed about the manifestation of CCL/P during the prenatal examination. Formalization of disability status in a child with CCL/P was untimely in 57,25 %. Among a larger proportion of mothers (61,83 %), no detailed instruction and/or practical training on the specifics of feeding children with CCL/P was given in the maternity hospital or was given once at discharge. Most children were on tube feeding (without vital indications). The organization of rehabilitation of children with CCL/P at the pediatric site does not meet the required standards. A direct dependence of medical activity in terms of child rehabilitation on the educational level of mothers has been revealed. 87,53 % of parents believe that they do everything possible for the full recovery of their child. A large proportion of parents (38,42 %) are only partially satisfied with the cosmetologic and functional results of treatment. The health status of a greater proportion of children with CCL/P was assessed as satisfactory at the time of the study. Delay of psycho-speech development was revealed in every 4 children with speech impairment in 38,42 % of children. Conclusions. Analysis of the data obtained in the course of the study showed the lack of a systematic approach in the activities of health care institutions to provide information and psychosocial support to parents of children with CCL/P. Insufficient awareness and training of pediatricians in treatment and rehabilitation work with families of children in this group were revealed. It is necessary to correct the existing psychosocial intervention programs by the staff of maternity hospitals and pediatric sites to increase the amount of support provided to families of children with CCL/P, including timely analysis of anamnestic data, prescription and implementation of adequate restorative therapy and social rehabilitation, availability and implementation of long-term plans to increase the level of parental knowledge about the rules of effective care for children with CCL/P and the methods of treatment used.