Congenital clubfoot: parents’ considerations about the disease and its treatment

Objectives: To learn parents’ impressions regarding the diagnosis of congenital clubfoot and its treatment. This information may favor persistence with treatment, breakdown of taboos and therapeutic success. Methods: A qualitative and descriptive study with 10 parents whose children have congenital clubfoot. The tabulation of the data occurred through the use of three methodological figures: central idea, key expressions and collective subject discourse. Results: When asked about impressions generated when their child was diagnosed with congenital clubfoot, 70% reported feelings of sadness, fright and worry, and only 30% showed a calm acceptance of the diagnosis, devoid of fear and worry. When asked about the treatment that was being done, 100% of the parents showed optimism and satisfaction with the results presented, 40% mentioned the comfort level brought by the therapeutic methods and 20% mentioned the importance of the involvement of the entire health team in the therapeutic approach. Conclusion: Fear and concern were common feelings, which improved with the best elucidation by the health team regarding the disease. Regarding therapy, the parents’ satisfaction was unanimous. Level of Evidence V; Expert Opinion.


INTRODUCTION
A newborn with a congenital anomaly of a limb presents a challenge to his parents and the team of professionals responsible for the child's treatment (1)(2)(3)(4) .Congenital clubfoot is defined as a deformity characterized by poor complex alignment of the foot involving soft and bony parts, with equinus and varus deformity of the hindfoot, cavus of the midfoot and adduction of the forefoot.
According to Clifford, when faced with the birth of a child with congenital malformation, parents are taken by emotional shock, denial of the defect, anger, sadness, anxiety, anguish at not being able to properly care for the baby and guilt, which can be addressed to either themselves or the medical staff (5) .There are also difficulties in adapting the child to special care and reorganization of life.Professionals, in contacting the parents, should identify the emotions and difficulties that these parents are experiencing so that care can be more adequately and effectively performed (6) .
The objective in the treatment of this pathology is to obtain flat, painless feet with good mobility and that do not require special shoes (7) .
The family is seen as a unit of health or disease; therefore, it is necessary to look at it as an object of care in a process of relationships and interventions that goes beyond the barriers of clinical care, including special care, such as children with congenital malformation and their families (8) .During the last decade, interest in assessing how patients perceive the impact of the disease has increased, which is commonly referred to as health-related quality of life.Health-related quality of life is defined as a multidimensional construct that captures the impact of health status, including disease and treatment in three domains: physical, psychological and social function (9) .
In our institution's pediatric orthopedic department, in addressing parents regarding their child's diagnosis and in explaining the various stages of treatment, physicians are often faced with feelings of insecurity, disagreement, distress and frustration.In the daily follow-up of these parents, it is often noted that they have doubts about the treatment.Examples of such situations include the impression that casts and orthotics hurt children and that the child's development is not compatible with what is expected.
The treatment of congenital clubfoot requires intensive follow-up with commitment of the guardians so that all of the steps are fulfilled.In this context, knowing the parental impressions about the congenital clubfoot will provide the orthopedist with more information to perform a quality explanation to the parents regarding the malformation.In this way, persistence with treatment, therapeutic success and breaking of taboos can be strengthened.

METHODS
This work was approved by the Research Ethics Committee with registration in the Brazilian Platform under CAAE number 64094416.9.0000.5149.
Considering the nature of this study, qualitative research of the exploratory type was employed, adopting as methodological reference the Theory of Social Representations (TSR).To know and describe the parents' considerations regarding congenital clubfoot and its treatment, under the RS reference, the Collective Subject Discourse (CSD) was chosen because it allows an approach to the phenomenon under study.
First, the subjects of the research were informed about the ethical issues of this work, which was followed by the signing of a consent form, obeying Resolution 466/12 of the Brazilian National Health Council (which addresses research involving humans).
The study, conducted from April 1, 2016 to November 1, 2016, had, as subjects, 10 parents who accompanied their children with congenital clubfoot in the pediatric orthopedic outpatient clinic.
Individual interviews were conducted to investigate the parents' concerns regarding the diagnosis of congenital clubfoot and its treatment using two semi-structured questions.Each interview was recorded on tape and then transcribed.For the analysis and presentation of the results, we used the CSD, written in the first person singular, composed of key expressions (KEs) that had the same central ideas (CI) and same anchorage (AC), strictly following the order of the following steps: -1st stage: the answers were heard several times and, only after total comprehension of the general idea and the discourse, were transcribed literally.
-2nd stage: total reading of the answers of each of the interviewees, followed by a separate reading of all the answers to the analyzed question.
-3rd step: transcription of the answers for each question.The KEs were highlighted in italics, and the CIs, which represent the description of the KEs and not their interpretation, were highlighted.
-4th stage: individual transcription of each CI with their respective KE.
-5th stage: extraction of the theme from each of the questions, grouping with their respective CI, the subjects, represented by the number of parents interviewed, and the frequencies of ideas through tables.Finally, construction of CSDs separately from each central idea with their respective KE.

RESULTS
We interviewed 10 parents of children with congenital clubfoot.In relation to schooling, 50% of parents declared incomplete elementary school, 10% completed primary education, 30% completed high school and 10% had completed higher education.
Most of the subjects (50%) reported having 1 child, with an average of 2 children per subject studied.
The sample characterization results are listed in Table 1.

CI: fright and worry (70%)
CSD: At first, as I did not know the subject, my first reac tion was worry.I was very scared because I had never seen it, and I did not know if there was any treatment, if it would improve; we are from the interior region of Brazil, so we were scared, there is no treatment there; I cried a lot because I discovered that he would have to go through a treatment; I was very apprehensive when I saw his crooked legs, I thought he was not going to walk; it was something very different for me, I found it very strange.

CI: good acceptance of diagnosis (30%)
CSD: The first thing I thought was in the area of orthopedics, I thought there is a way, I thought about the boot.So, I felt calm; I already knew the disease, his father's family has cases of clubfoot, right?So, I was not scared, no; it did not bother me at all, I did not worry too much.

CI: comfort from better understanding (40%)
CSD.Although I did not know anyone who had clubfoot, doing a lot of research on the internet, I saw that it was a common malformation; we were scared until arriving here for the consultation, but then the doctor we saw told us that it was not something to be shocked by, and we were seeing the other people being treated for it, looking at the internet, becoming more resistant to the treatment; I already knew his father's family has it, right?Although in my city I never saw it, when I got here and saw so many cases, I found it normal.

CI: incompatibility with ultrasonography (20%)
CSD: It was a surprise, the ultrasound scans did not show anything, and when she was born, the doctor broke the news to us; I learned about it only at the time of birth, on the ultrasound I had not seen anything.
In the second question about the parents' opinion regarding the treatment made for the correction, 100% of the parents reported satisfaction with the results presented with the treatment.The level of comfort of the child with the treatment was one aspect mentioned by 40% of the parents, and 20% of the interviewees mentioned the importance of involving the entire health team in the therapeutic approach.
The CI, KE and CSD for the second question are listed below:

CI: good satisfaction with results (100%)
CSD: The treatment was spectacular; every week I think it improves more; the little foot is almost in place; is improving The first question was: What was your impression when your child was diagnosed with congenital clubfoot?The central idea mentioned by 70% of the respondents was fright and worry, while 30% of the parents showed a clear acceptance of the diagnosis, devoid of fear and worry.Among the parents, 40% reported that with better understanding of the disease, either through the internet or by medical contact, there was better acceptance of the diagnosis; 20% were unaware of the diagnosis at the time of delivery due to the inability of ultrasonography to detect this change.
The CI, KE and CSD for the first question are listed below: a lot, seeing the other children also improving, generates a great relief; with confidence and discipline, we see ever greater improvement; wonderful results; great treatment with visible results, it is hard to believe the way it was done.

CI: considerations on child comfort (40%)
CSD: I do not think it hurts anything; it bothers a little when the cast is removed, but do not think it hurts; the bad thing is to change the cast every Friday; he gets used to the cast, when Thursday arrives, upon removing the cast, his leg is lighter, he finds it uncomfortable, and he cries a lot at the time.

CI: attendance team involvement (20%)
CSD: The treatment is spectacular because the staff is great; they make us more relieved; all the care from the staff here was great.

The news
According to Manoni, when a child representing dreams is born sick, the realization produces a shock in the mother (10) .This "reality shock" is often the product of uncertainty, which is defined as a psychological state characterized by insecurity and a lack of clear information (11) .In this study, 70% of the parents referred to this "reality shock" and the emergence of uncertainties when they received the diagnosis of congenital malformation, demonstrated by the analogous expressions present in the "fright and worry" CI.
Parents of children with clubfeet face a complex situation: information regarding treatment may not be available or be inconsistent.This limited knowledge about the causes and long-term effects of the disease generates insecurity (12,13) .Similarly, the "comfort from better understanding" CI reveals the lack of sufficient information regarding the disease by at least 40% of the parents, since not everyone can feel comforted, even with better understanding.
Other sources of uncertainty include the potential stigma of health status, the long-term effects on child development and the treatment efficacy (14,15) , factors that are also related to CIs raised primarily by the first issue of this study.

The clarification
In a study conducted in Malawi and Uganda, there were a number of erroneous considerations about the causes of clubfoot, and people often did not seek treatment because they were unaware of their availability and did not consi-der clubfoot to be a correctable condition (16,17) .In a study conducted in Pakistan, it was found that the disease was often blamed on mothers, which may lead to stigmatization of families of children with clubfeet and can have a negative impact on the mothers of these children (18) .
The way in which news is communicated is an important factor; therefore, it should be more valued during the teaching of medicine or during the supervision of residents (19) .In the study in question, it was demonstrated that when parents received better information about the disease, including clarification by the physician who also became responsible for the treatment, acceptance of the disease became easier.
Another relevant and current aspect observed in this study is the reference to the internet as a tool to better understand the disease, which, according to 40% of the parents, resulted in greater comfort in relation to the diagnosis.A study by the Pew Research Institute indicates that there has been an explosion of online health-related information, in terms of both production and consumption, because of the increase in internet access (74% of American adults use the internet) (20) .A recent study published in the Journal of Pediatric Surgery evaluated the importance of social media for patients and families with congenital anomalies.When asked if they would like to participate in a Facebook group connected to the hospital in which they received care and be directly assisted by a health professional online, 83% of the participants answered yes (21) .
A prenatal diagnosis of clubfoot has repercussions on the mother and on the psychological state of the family and, in some cases, can modify the course of the pregnancy.Even if the progress of the deformity cannot be changed in the womb, most mothers admit that it is useful to be aware of this before the birth of their children.While it is true that prenatal diagnosis leaves some issues unresolved and that a false positive remains a possibility, it allows the mother to initiate treatment soon after birth and seek genetic counseling (22) .In the study in question, 20% of the parents cited absence of evidence on obstetric ultrasonography that suggested congenital clubfoot.The question raised is how much these parents were instructed about the probability of prenatal ultrasound evidence of the disease and about the rate of false negatives, which could minimize frustration.The incidence of clubfoot diagnosed before birth varies significantly in published studies, ranging from 0.43% to 59.8% (23,24) .

The treatment
Bor et al. conducted a study in which 74 patients were treated with the Ponsetti method and were followed up for an average of 6.3 years.They assessed the foot movement and applied a questionnaire, in which all of the patients presented a high degree of satisfaction with the final result, and 89% presented good foot movement (25) .
A recent study published in Norway compared the treatment of the disease in question using the method of Ponsetti and previously used methods, with two questionnaires administered to parents on function and satisfaction, which reported significantly higher results after using the Ponsetti method (26) .
Similar findings are seen in the study in question, in which 100% of the parents reported satisfaction with the results presented, citing them as excellent, spectacular and wonderful.

CONCLUSION
Despite the limitations already mentioned in this study, it was possible to explore subjective aspects regarding congenital malformation of the foot by means of a method that is not used in the literature and should not be underestimated.Thus, negative feelings, such as fear and worry, have been found in most parents when informed about a diagnosis of congenital clubfoot.It was also noted that greater comfort was brought to the parents by better understanding the disease, and the actions of all the health team were recognized as important in addressing this pathology with the parents.
Therefore, we believe this study can help improve and broaden the approach to addressing this pathology with parents.

Table 1 .
School and family profiles