The problem of treating children with cleft lip and palate (RGN) remains an urgent issue and requires specialized complex medical care, including the efforts of specialists in various fields (maxillofacial surgeon, neonatologist, pediatrician, speech therapist, otorhinolaryngologist, orthodontist, pedagogue, psychologist, etc. .), whose task is the comprehensive rehabilitation of patients in a specialized center.
Despite the prevalence of this pathology, the quality of life of children with RNG in different age periods, the impact of early rehabilitation programs and the terms of surgical rehabilitation on the quality of life of children with a pathology of the maxillofacial area remains poorly understood.
Understanding the impact of cleft lip and palate on the quality of life of children and their families, as well as identifying the need for medical care are necessary to improve the effectiveness of providing comprehensive health care in the health care system, improving the results of care provided to patients and their families, which will simplify social adaptation of this category patients.
Religious beliefs of parents, ethnic and cultural characteristics are often the basis for parents to make decisions regarding the treatment of children with this pathology.
The increasing influence of negative environmental factors contributes to early chronicization of ecopathological diseases and, as a result, to an increase in the number of people with congenital malformations. There is a combination of violations of abilities to move, to produce precise movements, to speak, adequately behave, to control one’s own actions.
Most interdisciplinary teams of researchers in the field of this pathology believe that after a mother of a child (or relatives) in the maternity home meets and conducts an explanatory conversation specialist of the specialized care center for children with congenital cranio-maxillofacial pathology — a micropediatrist, surgeon, orthodontist, social worker, doctor-psychologist, — parents gradually calm down and continue a normal life, preparing the child for treatment. And also, if the parents clearly follow all the instructions and instructions offered by the doctors so that their child can be quickly, correctly and well prepared for the first stage of comprehensive treatment, this usually leads, in the future, to social rehabilitation and adaptation in society. From our point of view, for today rehabilitation of children with a cranio-maxillofacial pathology should begin from the moment when this diagnosis is first put by the expert of ultrasonic diagnostics.
In Russia, a screening study of the fetus in pregnant women is mandatory. The quality of life of children born with RGN is subject to adverse effects due to the severity of the pathology, the psychoemotional state of the mother, the family as a whole. The birth of such a child in the family causes conflicting emotions in parents, especially among mothers, and parents also have to adapt to the loss of the expected «ideal child». After adaptation of parents to the birth of a child with congenital malformation of the maxillofacial area, they face the problem of choosing tactics of treatment — tactics of surgical treatment, preoperative orthopedics and / or orthodontics. In this regard, there may be conflicts between parents and relatives who have different ideas about what is best for the child. Contradictory feelings of parents, conflict of interests between parents, relatives, conflict of interests in key decisions concerning surgical treatment, as well as options for pre-surgical training and the timing of the operation, all illustrate the complexities of the relationship between parents and the child with the RGN. The main information about the treatment of a child they find on the Internet and do not always determine the right choice. And only specialists of the Center can correctly, accurately and intelligibly explain the essence of the forthcoming treatment.
MATERIALS AND METHODS
For the study, we developed two questionnaires:
Questionnaire No. 1 was completed by counseling parents after prenatal ultrasound diagnosis and before the birth of the child, questionnaire No. 2 — after they received primary surgical care. In the questionnaire No. 1 there were conventionally four main domains of questions.
The first domain made it possible to identify various social and demographic characteristics of counseling people, such as marital status, the presence of children, age, education, residence, material security. These indicators allowed not only to characterize the sample of consultants, but also to assess their possible impact on individual components, the effectiveness of assessing the quality of life of parents waiting for children with the RNG.
The second domain made it possible to determine the goals that consultants put when applying for prenatal diagnostics (IPA), and their reproductive plans.
The third domain contained questions that made it possible to assess the awareness of consultants in the field of genetics, hereditary diseases, the risk of recurrence of the disease or its transmission in the family.
The fourth domain allowed to estimate the proportion of consultants who note the sense of guilt for the birth of a sick child and anxiety about the possibility of a child with a hereditary disease in the family.
The questions in questionnaire No. 2 were formulated with the aim of analyzing the changes in a number of indicators, so some of the questions in questionnaires No. 1 and 2 were repeated. Questionnaire 2 contained questions that allowed assessing the implementation of the goals of patients’ referral to the medical and genetic counseling, the domain of questions that allowed assessing the change after receiving primary surgical care, the level of satisfaction with the consulted treatment, the change in the proportion of counseling, feeling guilty for the birth of a sick child, or anxiety in connection with the possibility of re-birth of a child with the WGN, concern for his psychosocial well-being, as well as a number of issues that allow to appreciate the change in reproductive plans, consults, satisfaction with prenatal diagnosis, its usefulness for patients and the justification of time spent. The time between filling out the two questionnaires varied from 0 days (filling in questionnaire No. 2 on the same day after the consultation) to 1 year, averaging four months. Such a time interval is explained by the timing of the genetic testing performed by a genetic geneticist or other studies for diagnostic purposes, an opportunity to visit a family medical and genetic consultation.
RESULTS OF THE APPLICATION OF PARENTS OF CHILDREN WITH LIP OF THE LIP AND SKY
According to the results of the questionnaire (questionnaire No. 1), the reproductive plans of couples who have undergone PND and early surgical treatment are evaluated and the impact of prenatal diagnosis on them. When answering the question: «Are you going to have children?» — 136 patients (60%) answered that they were going to have children, 41 people (18%) — that they were not going to, and 49 people (22%) were at a loss when responding to this question.
Comparing the distribution of patients according to the need to have more children among consultants who do not have children and have children with the RGN. In response to the question: «Are you going to have children yet?» — 60 (48%) of consultants who have children with the RGN said that they plan to have more children, 40 (32%) — no, 24 (20%) found it difficult to answer . When analyzing the results of answers to the same question in a group of patients without children, 78 (78%) of them answered that they are still going to have children, 3 (3%) people — that they do not, and 22 (22%) were at a loss when answering this question. In the statistical treatment of the results, a significant difference was obtained between the groups (χ2 = 32.95, p <0.05), indicating that patients who did not have children with RGN were more tuned to childbearing.
The question «Why do not you want to have more children?» Was answered by 58 (46%) of the patients who consulted about the diagnosed RGN in the child, 21 of them (35%) named the cause of the fear of the birth of another child with RGN, 21 (35% ) did not want to have more children, 12 (23%) called the cause age, 14 (23%) — the material situation. To the question «Why do not you want to have children?» Patients who did not have children with the RGN did not respond.
To determine the connection between the reproductive plans of those consulted with their demographic, social and medical characteristics (gender, age, education, place of living, material security, the severity of their children’s illness, the degree of genetic risk in the family), a correlative analysis was carried out using Spearman’s criterion. Despite the fact that the material difficulties were occupied by third parties, as a reason for not wanting to have children, there was no significant correlation between these parameters. Also, there were no elderly correlations between the sex, education, the place of residence and the degree of genetic risk in the family.
A positive answer to the question: «Are you going to have children?» — Correspondingly correlated with age counseling (r = -0.3), the availability of children with RGN in the family (r = -0.5) and the severity of their state (r = — 0.45). We assumed that the severity of the state of the child with the RGN can be the main factor influencing the desire to have children. It has been established that the presence or absence in the family of children with RGN and the severity of this pathology are the precursors of the rejection of further childbearing.
Families who have even one child with the RGN can consider their reproductive tasks fulfilled. In the whole couple, who already had a child with this or that pathology of development, they are more cautious in relation to further childbearing.
Fear of the birth of a child with the RGN in our research was first of all the reasons for the childbearing of parents with children. However, other factors may influence the desire of patients to have children, a feeling of guilt in relation to the child with the RGN. The birth of another child without such a pathology can be perceived by some parents as a deed in relation to an already existing child with the RGN.
The highest correlation rates are revealed between the answers to questions reflecting the desire to have children and their health. So, the initial answer to the question «Are you going to have children?» Correlated with an initial reply to the question «Will you be born with a child with a RGN?» (R = 0.65). We do not receive meaningful correlations between women and children, and feelings of guilt in relation to the child with the RGN. This fact, perhaps, is connected with the fact that patients with a pronounced sense of guilt for the birth of a child with the RGN psychologically refuse to continue their childbearing. To assess the impact of the IPA on changing the reproductive plans of counselors, it is suggested that a number of questions of the questionnaire No. 2 be addressed to patients, both those who do not have children and the children’s home with the RGN.