Demographic characteristics of participants
Twenty-four women participated in the FGD. Urban women were more educated, and several were employed (Table 2). Rural women were homemakers, with lower education levels.
Table 2
FGD* | Respondent | Age | Education (Degree/ years of education) | Number of children | Current occupation |
FGD1 | U1 | 36 | Post-graduate | 2 | Homemaker |
FGD1 | U2 | 37 | Double post-graduate | 2 | Homemaker |
FGD1 | U3 | 38 | Post-graduate | 2 | Homemaker |
FGD1 | U4 | 27 | Undergraduate degree in engineering | 1 | Software engineer |
FGD2 | U5 | 30 | Under-graduate | 1 | Self-employed |
FGD2 | U6 | 36 | High school | 1 | Employed |
FGD2 | U7 | 37 | Undergraduate degree in engineering | 1 | Employed |
FGD2 | U8 | 33 | Post-graduate degree computer application | 2 | Employed |
FGD3 | U9 | 35 | Post-graduate degree in business administration | 1 | Employed |
FGD3 | U10 | 35 | PhD | 1 | Teacher |
FGD3 | U11 | 38 | Under-graduate | 2 | Homemaker |
FGD3 | U12 | 35 | 10 years | 2 | Self-employed |
FGD4 | R13 | 35 | 10 years | 2 | Homemaker |
FGD4 | R14 | 33 | 12 years | 2 | Homemaker |
FGD4 | R15 | 35 | 12 years | 3 | Homemaker |
FGD4 | R16 | 26 | One year of college education | 2 | Homemaker |
FGD5 | R17 | 34 | 10 years | 2 | Homemaker |
FGD5 | R18 | 30 | One year of college education | 2 | Homemaker |
FGD5 | R19 | 26 | 12 years | 2 | Homemaker |
FGD5 | R20 | 25 | One year of college education | 1 | Homemaker |
FGD6 | R21 | 30 | 12 years (+ one year nursing course) | 2 | Homemaker |
FGD6 | R22 | 36 | 10 years | 2 | Homemaker |
FGD6 | R23 | 39 | 12 years | 3 | Homemaker |
FGD6 | R24 | 38 | 8 years | 2 | Farm laborer |
* FGD1-3 were discussions with urban women, and FGD4-6 were discussions with rural women.
Knowledge On Congenital Anomalies
The analysis revealed three overarching themes: limited knowledge about congenital anomalies, perception that children with disabilities were a burden, and abortion as a solution to the problem.
1. Limited knowledge on congenital anomalies
Congenital Anomalies As One Of Several Adverse Pregnancy Outcomes
Women were familiar with the Marathi language equivalent of ‘congenital’ (janmajat) but required probing to recall specific examples of congenital anomalies. Sixty-one different conditions were discussed as congenital anomalies, which included lay descriptions of different anomalies, examples of maternal pregnancy complications, other adverse outcomes (miscarriage, fetal demise), and descriptions of children with congenital and acquired disabilities, and developmental disabilities (DD) (Table 3). Source of knowledge were unclear, but direct or indirect experiences of relatives, neighbors and friends was mentioned (Table 3). Rural participants additionally mentioned receiving information from health programs on television. Only two urban women who had experienced pregnancy complications reported receiving information on congenital anomalies from health care professionals during pregnancy.
Table 3
Examples of birth defects
Sr. No. | Phrases used (“”) or descriptions | Likely condition | Relation-ship to participant | Current status of child/pregnancy |
1 | “She had a hole in the heart since birth” (U1, FGD1) | CHD | Aunt | Died in adulthood |
2 | “Blue baby” (U2, FGD1) | CHD | Uncle | Deceased |
3 | “The child had a hole in the heart” (U3, FGD1) | CHD | Relative | “Is fit and fine after 2–3 operations” |
4 | “She has a little cut on her lips” (U4, FGD1) | OFC | Cousin | “Independent” |
5 | Cleft lip /palate, two fingers fused (U2,FGD1) | Multiple malformation | Aunt | Not married, lives with participants mother |
6 | “He had a hearing defect. The baby was not able to cry, he had a defect in his legs” (U1, FGD1) | Multiple malformation | Friend | Assisted reproduction, expired after birth |
7 | “Her baby was born with a spinal issue so the baby never crawled or never walked. He is like a one month old baby, a boy who is 19–20 years old. He is just a vegetable lying on a bed. He never sat up because of the spinal cord issue”. (U1, FGD1) | NTD? | Neighbour | 19–20 year old, has remained confined to a room since birth, requires profound support for daily activities |
8 | “Her legs were folded inwards” (U4,FGD1) | Limb defect | Mother | Operated at 2 or 3 years of age, walks without a problem |
9 | Foetal Alcohol Syndrome, “very difficult child”. (U2,FGD1) | FAS | Friend | Going through therapy |
10 | “The child has severe alcohol syndrome, it is called something like that” (U2,FGD1) | FAS | Friend | Adopted child, 11 years old going through therapy |
11 | “She can't walk, she can't talk, she can't do any work on her own. Everything has to be done for her” (U4,FGD1) | DD | Relative | |
12 | “He is dependent on everybody else for everything. He can walk, go to the toilet, but every other function has to be done for him including feeding”(U2,FGD1) | DD | Maids sister’s son | 7–8 year old |
13 | “They got her married to this autistic guy” (U2,FGD1) | Autism | Maid | Died |
14 | “She was fine for four or five years and then she had a fever in her head. She can't speak because of the fever. She can't do anything now”. (U4,FGD1) | Acquired disability | Cousin | Living with family, requires profound support for daily activities |
15 | “Some problem in movement, something like polio” (U3, FGD1) | Acquired disability | Acquain-tance | |
16 | “After sonography, the doctor said that your baby's head is bigger than his body” (U4, FGD1) | | Daughter | Anomaly not present at birth |
17 | “During the 5-6th month of pregnancy, they did sonography. Doctor told them that the baby is not growing that much, maybe you should not continue with the pregnancy. But she took the risk but the child died”. (U7,FGD2) | Intrauterine foetal death /stillbirth | Neighbour | |
18 | “The child is still there but only his body is growing otherwise mentally or other development is not there”. (U7,FGD2) | DD | Neighbour | Home care, requires profound support for daily activities |
19 | “Since birth, one eyeball is not formed”. (U8,FGD2) | Vision impaired | Friend’s daughter | Told that the condition is not amenable to treatment |
20 | “He cannot speak. Also he cannot fold his legs and sit”. (U5,FGD2) | ? | Friend’s child | Toddler |
21 | “She cannot hear since birth”. (U6,FGD3) | Hearing impaired | Sister-in- law’s relative | Attending college, uses hearing device |
22 | “Normal child, but only club foot” (U9,FGD3) | CTEV | Friend’s child | Corrected with surgery |
23 | Child with severe disability, “She cannot move or eat. Just lies there”. (U12,FGD3) | DD | Relative | Died at age 7 |
24 | “She has a problem in her mind, and she also has a problem in her heart”. (U11,FGD3) | DD | Brother’s daughter | 14–15 year old, behaves like a child |
25 | “She has been born handicapped, now she is 14 years old, but she has been bed-ridden all these 14 years”. (U12,FGD3) | DD | Relative | 14 years old |
26 | “He is abnormal” (U12,FGD3) | DD | Acquaint-ance | |
27 | Baby died during delivery (U12,FGD3) | Stillbirth | Friend | |
28 | “My elder son whenever he got hurt he used to hold his teeth tight and no air could go in. We used to put fingers in his mouth to open it. His hands and legs would turn outwards and he used to turn bluish” (U11,FGD3) | ? | Son | Cured after prayers and saints’ blessings |
29 | Some problem with the child(U9,FGD3) | | Work acquaint-ance | |
30 | Cleft lip and ear anomaly (R13,FGD4) | Multiple malformation | Sisters’ relatives | Sign of the eclipse as mother was cutting vegetables, surgery was done. |
31 | Ureter and anus not developed (R16,FGD4) | Anorectal malformation | Aunt’s pregnancy | Doctors advised abortion, not done, baby expired 5 days after birth |
32 | “It (mother withholding urine during the eclipse period) can cause … water to fill (the baby’s) kidney (and cause damage)”. (R14,FGD4) | Renal anomaly | Relative | Detected during ultrasound scan, pregnancy terminated |
33 | “One of his legs is short, he walks with a limp” (R15,FGD) | DDH | Acquain-tance | Independent |
34 | “There was no fault in the sonography (report), but she is mentally retarded. (R14,FGD4) | DD | Relative | Doctors said child will survive only for 3–4 years ,treatment started at 4–5 months of age including visits to specialists. Presently 8–9 years old, profoundly dependant for daily activities |
35 | Disabled (R14,FGD4) | DD | Neighbour | Adult, elder brother uses the financial assistance provided to him |
36 | “From 6–7 years, his leg muscle growth stopped. He used to walk on his heels. He cannot walk now. He moves by crawling. But now use of his hand is getting less and less”. (R14,FGD4) | Neuro-muscular condition | Relative (father-in- laws’ sisters’ grandson) | 18 year old. Dropped out from school. Dependent on family. |
37 | Babies were joined at the time of birth (R15,FGD4) | Conjoined twins | Have heard of this condition from someone | Surgery done, one child survived |
38 | “They realized in the fifth month that the baby didn't have a half-valve on one side of the heart. Therefore, she underwent an abortion with the advice of the doctor”. (R17,FGD5) | CHD | Sister-in- laws’ pregnancy | Pregnancy terminated |
39 | “I have a cousin who has a hole in her heart, but she has had an operation. Success. She has no problem now”. (R20,FGD5) | CHD | Cousin | Detected after child complained of chest pain. Attending high school |
40 | Condition occurred 1–2 years after birth. Had high fever, fever affected the brain. Child is not able to hear, speak, or understand anything. (R17,FGD5) | Acquired disability | Aunts’ brothers’ son | 30–35 years old |
41 | Had polio during childhood. (R18,FGD5) | Acquired disability | Aunt’s sister’s daughter | Married to a handicapped person like her, has one child, who does not have disability |
42 | Had polio and problem in walking. Was operated. (R19,FGD5) | Acquired disability | Acquaint-ance | Can work in the farm now, 30–35 years old |
43 | “Her brain does not grow, her body grows, but she does not understand anything” (R17,FGD5) | DD | Brother’s daughter | 4–4.5 years old |
44 | Skin was not fully developed, loose skin, kept under glass (incubator), child delivered in 8th month, half body was black, vomited after delivery (R17,FGD5) | Prematurity | Sister’s son | Child is fine, in high school |
45 | Ultrasound scan detected that baby did not have a skull (R23,FGD6) | NTD (anencephaly) | Brother’s child | Pregnancy terminated |
46 | Eyelids and eyebrows were attached (R23,FGD6) | Eye anomaly | Daughter of acquaint-ance | Doctors had separated eyelids and eyebrows, but she still does not look like a normal person |
47 | “Legs are folded” (R22,FGD6) | Limb defect | Acquaint-ance | 40–45 years of age, receiving government disability assistance |
48 | “He cannot speak, he cannot hear, that is, complete mentally challenged (matimand)” (R24,FGD6) | DD | Sister’s sister-in- laws’ son | 20 years, profoundly dependant for activities of daily living |
49 | Hearing impaired (R23,FGD6) | Hearing impaired | Sister-in- laws uncle’s son | Family died by suicide |
50 | Mentally challenged (R21,FGD6) | DD | Person in another village | |
51 | Knocks door continuously, when hungry gives bowl (R23,FGD6) | DD | Son of acquaint-ance | According to father, this is due to past karma |
52 | Intellectual impairment (R24,FGD6) | DD | Aunt’s grand daughter | Died at the age of 12 years |
53 | “intelligence is not like that of a normal person, does one action repetitively” (R23,FGD6) | Autism | Neighbour’s sister’s son | Receiving treatment, enrolled in a school in Pune |
54 | Limb defect (R22,FGD6) | Limb defect | Neighbours’ brother | Locomotor disability, now 20–22 years old |
55 | No blood supply (to the foetus). Detected in the 4th month of pregnancy. (R21,FGD6) | Pregnancy complication | Cousin sister | Pregnancy terminated |
56 | Foetus was like a bunch of grapes (R22,FGD6) | Molar pregnancy | Sister | Pregnancy terminated |
57 | Had birth complication, amniotic fluid lost, did sonography but the baby was dead (R21,FGD6) | Stillbirth | Own experience | Stillbirth |
58 | Had pregnancy complications, blood pressure increased during pregnancy and delivery, baby’s blood pressure also increased, baby used to be very silent, had sense/ life in her upper body only. (R21,FGD6) | Pregnancy complication | Distant relative | Died after 3 weeks |
59 | “Babies lip was cut”. (R21,FGD6) | Multiple gestation | Sister | Triplets, only one baby survived. “While walking something had came in the way, and she was hit by it. This caused her to deliver early in the 6th month”. |
60 | Had hole in the heart. Whatever milk was fed to the child spilled out of the hole, due to which baby expired (R23,FGD6) | CHD | Sister-in- laws baby | Deceased |
61 | Hole in the heart (R22,FGD6) | CHD | Acquaint-ance | Died at the age of 25 years |
Knowledge Of Causation And Prevention
There was some knowledge on causation, but these were discussed in the context of general pregnancy practices like good nutrition during pregnancy, supportive environment, and respect for women during pregnancy (Table 4). Nearly all women mentioned marriage among relatives and self-medication as causes. Other factors mentioned were family history of a birth defect, maternal general health status, maternal mental health, need for respect during pregnancy, supportive family environment, one mention of anxiety about Covid-19 during pregnancy, physical exposures (specifically chemical and pesticides in food), poor diet during pregnancy (including ‘hybrid’ food implying inferior nutrient content), fall during pregnancy, assisted reproductive methods, abortion medication, alcohol consumption, and repeated use of ultrasound during pregnancy (Table 4).
Table 4
Women’s opinion on causes of congenital anomalies
Causes of congenital anomalies | |
Heredity | “People say the culprit of this condition is heredity and the tablets and tonics that were taken during pregnancy” #R13, FGD4 |
Consanguineous marriages | “You will also see a lot of congenital anomalies in endogamous marriages in south India. It’s not uncommon to see a lot of albino’s, people who are blind or have deformities in their extremities” #U2,FGD1 |
Medicines | “ Taking medicine for headache causes the child to become handicapped ” #R14,FGD4 |
“For abortion, she took pills in one, one and a half months. But that was not aborted, means they did sonography, but nothing was told to them (that is, the abortion did not occur). #R16,FGD4 |
Maternal health, diet, environment | “Sometimes mothers become anaemic due to low blood, also if you don’t get proper sunlight then for the first month the baby will be yellowish in colour” #U10,FGD3 |
“Food quality is not good because of all the hybrid food and the pesticides that are used ” #U9,FGD3 |
“Endosulfan was sprayed on trees. That caused many birth defects” #U10,FGD3 |
“The lifestyle, that is daily chores at home, office, everyday exertion, the surrounding environment, work related stress, all these things (cause) a lot of mental stress” # U7,FGD2 |
Fall | “ So may be when she falls down, the disability happens” #U9,FGD3 |
Ultrasonography | “Nowadays doctors ask us to do more sonography. Due to that diseases of uterus and abortion, or child is born defected” #R23,FGD6 |
Beliefs | “I have heard that the family is cursed because for past three to four generations a boy or girl is born normal, but later develops some psychological problems” #U1,FGD1 |
| “Elderly people tell us not to go out after 6–7 pm, especially pregnant ladies ” #U6,FGD2 |
| “No, God never does bad things to anyone. Whatever it is, it belongs to what we do” #R17,FGD5 |
| “We should hear good things, say good things, pray to God. We don’t follow this and they are the reasons” #U10,FGD3 |
Alcohol | “My mother assumes that because my dad was an alcoholic when she was pregnant, that’s what caused it (fused, low lying kidneys with short ureter) but I have no idea, honestly”. #U2,FGD1 |
Assisted reproduction | “ it was a IVF baby” #U1,FGD1 |
Lay beliefs predominated understanding of causation. The association between maternal activities during an eclipse and congenital anomalies like ‘cut lip’, ‘crooked legs’ or a missing body part was mentioned by all women. Rural women mentioned God’s will and destiny.
How God decides, it happens. It is part of everyone’s destiny (Participant R21, FGD6).
Karma (consequences of one’s deeds) was mentioned.
The (intellectually impaired) son …. knocks on the door continuously and when he is hungry, he gives the bowl. When asked, the Brahman (religious man) said these are fruits of our past karma (Participant R23, FGD6).
Past sins were also cited as causes of congenital anomalies.
Then he says (father of a child with a severe disability) what sins have I done? No one does any sin. It is the effect of sins in a previous life” (Participant R23, FGD6).
Majority of participants were undecided about the truth behind these beliefs, but were hesitant to not follow these practices, in fear of an adverse outcome.
Beliefs are carried on from generation to generation. We can’t do anything about it (Participant U4, FGD1).
The two urban participants who had pregnancy complications mentioned prenatal tests (quadruple marker test, genetic tests) and a rural woman mentioned “color doppler” tests. The risks of repeated ultrasound as a cause of congenital anomalies were stated by both urban and rural women.
Sometimes by exposure to X-rays (ultrasound), the child can be born mentally retarded. So, it depends on one’s destiny, how much to take advantage of and how much to lose (Participant R23, FGD6).
Several participants believed that by requesting multiple ultrasonographic examinations, medical professionals were responsible for causing congenital anomalies. There was no mention of preconception care, use of folic acid supplementation or rubella immunization. Several women were of the opinion that these conditions could not be prevented
Whenever such a child is born, is it in anyone’s hand? (Participant R23, FGD6).
2. Abortion was widely suggested for untreatable foetal anomalies
Decision To Seek Abortion
According to participants, the decision to terminate a pregnancy detected with a congenital anomaly would be dependent on whether the condition could be treated or not, on the financial status of the family, and doctor’s advice. The term untreatable implied any condition that would lead to the birth of a child with a disability.
If there is defect in the legs and if that is going to be alright after treatment, then (gestures indicating pregnancy should be continued). But if the child is blind, or mentally not developed, then in such situations, there is no point in giving birth to such a child. Abortion will be the correct advice in that situation” (Participant R17, FGD5).
Three reasons appeared to influence the recommendation for termination of a pregnancy for foetal malformation. Firstly, a child with a disability was considered a lifelong burden.
A disability is a disability. If the baby is born, the baby will also face a lot of difficulties in surviving. It is a crime, abortion, we shouldn’t do that or tell someone to do it. But still, in my personal opinion I think if in the beginning we come to know, we should not bring the baby to the world to make him or her suffer” (Participant U10, FGD3).
Most participants believed that the decision to terminate or continue the pregnancy should rest with the mother, although one group of participants believed that it was necessary to involve the whole family in the decision. The second reason to universally recommend pregnancy termination was the maternal burden of caregiving.
They say one stitch in time saves nine. So if you do something (abortion) when there is time, all the questions (challenges of managing a child with a disability) that lie ahead are solved (Participant U1,FGD1).
The third reason was that there was lack of knowledge about raising a child with a disability, so that abortion would be a more convenient decision.
We don’t have the information available to treat them, how they grow, how to take care. You can’t just give birth and leave them. You have to raise the child; he is going to grow so what to do about it…. the entire family should think about this (Participant U2, FGD1)
There was a minority view that abortion was wrong.
But mistakes are also God’s creation, good or bad is it in our hand? This (child) is given to us for taking care (Participant R23, FGD6).
Knowledge On Legal Provisions
There was limited knowledge on legal provision for termination of a malformation affected pregnancy. Due to highly publicised advertisements on penalties for sex-selective abortion in India, women were aware that there was a legal gestation limit beyond which abortion was not permitted. However, none of the participants were aware that congenital anomalies could be terminated beyond this date. Lack of such knowledge was the source of apprehension among participants in one group, as the FGD was being recorded.
Participant R23: That covering, or shield (of the skull) was not there. They got to know in the 5th month, and they did the abortion in the 6th month. It was a baby boy”
Participant R22: That is not good, knowing the sex of the child, whether a girl or boy. Will there be any legal problems for us?” (pointing at the recorder, FGD6).
Directive Counselling For Pregnancy Termination
Directive counselling by medical professionals was commonplace.
When I was three months pregnant one doctor directly told me, if you are thinking about abortion, only then come to me, otherwise don’t (Participant U8, FGD2, participant with diabetes).
Parent’s decisions appeared to be of little consequence.
His ureter and anus were not developed, and doctor told them from the sonography report that there was a problem, so, don’t go for the baby, do an abortion. But she did not want to do the abortion. (At the time of delivery) after seeing all those reports, xxx hospital was not ready to admit her as they (parents/family) had already been told (to not continue the pregnancy), as the baby would not survive. The baby died after five days (Participant R16, FGD4).
Several participants stated that they would follow doctor’s advice, but not all participants were willing to accept directive counselling.
All those doctors… the way they treated me …. I feel like going and showing them, look this is my (healthy) baby. In our family, we were assertive. But suppose a family takes this decision (to terminate the pregnancy) because of the advice given by doctors? (Participant U8, FGD2, diabetic woman, directed not to continue the pregnancy).
3. Children With Disabilities Were Viewed As A Burden
Stigmatizing attitudes
Children with disabilities were viewed as a burden. Some participants believed that a child with a disability had to be accepted. Shared caregiving (“His grandmother sits with him. Yes, someone is always there for him”, Participant R14, FGD4) was mentioned by several participants. Inclusion of children in social activities was also cited. The majority opinion was however that a child with a disability would be “trouble” for the family. “Investment” in terms of treatment and special schooling was questioned, as several participants believed that there was likely to be little improvement even after treatment (exactly why invest in something like this”, Participant U2, FGD1). Stigmatizing attitudes towards children with disabilities was apparent, as they were perceived to be aesthetically displeasing.
People passing by would look at him with revulsion, look how he is drooling, look at his hands and legs (Participant U7, FGD2).
They were also perceived as being dangerous.
These children who are not bed ridden are very aggressive (Participant U12, FGD3).
Another stigmatizing attitude was pity for the mother and the family.
I really pity them and pray that this should not happen to any mother (Participant U1, FGD1).
Stigmatizing attitudes were cited to be responsible for isolation of disabled children and their families. Examples were a child not being brought out of his room for 19–20 years (Participant U1, FGD1), and parents feeling ashamed to present the child in public.
They don’t take him anywhere. They say they can’t take him, but I think there is a certain degree of - what will other people say” (Participant U2, FGD1).
The extreme consequences of stigma were evident from the description of the death by suicide of a family of a child with congenital hearing impairment, who were distant relatives of a participant (Punekar News, 2021).
People from their village and surrounding areas would say, you are a doctor, and you can’t cure your (hearing impaired) child? He (doctor who died by suicide) said (in a suicide note) we know it is wrong, but we are not able to tolerate our son’s insult (Participant R23, FGD6).
The arguments justifying abortion cited three factors, preventing maternal emotional distress (there will be a lot of mental pressure throughout her life, Participant U1, FGD1) and maternal blaming associated with a disabled child.
Everyone will blame the woman…. What the baby wants–nobody is going to be involved. They will only blame the mother who will be doing all the work (of caregiving) (Participant U8, FGD2).
Rural women said that “men give a lot of mental stress to women (Participant R23, FGD6), and catering to household needs would place additional demands on a mother with a child with a disability. All participants suggested ways of easing the burden of a woman with a disabled child.
Whatever has been served on your plate could happen to anybody else. In this situation, whatever support is needed should be provided (Participant U1, FGD1).
Ways for assisting included providing physical help in caregiving, financial help, and being “encouraging”.
Minimal Knowledge On Medical Options And Rehabilitation
Knowledge about treatment and rehabilitation for children with congenital anomalies was minimal. Surgery for heart defects, club foot and orofacial clefts was mentioned by women who had relatives or neighbors with these conditions. While it was believed that surgery could cure the defect, there was also the opinion that some conditions could not be treated.
There are conditions when there is no treatment even though a person has money (Participant R14, FGD4).
There was significantly more knowledge about government medical and disability services among rural women (free of cost medical services, financial assistance for persons with disability, assistive devices like three-wheeled cycles for children with locomotor disability, hearing aids for hearing impaired children, reservation in employment and special schools). Women’s knowledge on rehabilitation was obtained by interaction with families of persons with disabilities and from community-based health and social welfare service information sources.
Several participants felt strongly that rehabilitation, including special schooling must be provided to children with disabilities. There was mention of several instances of encouraging children with disabilities to be independent, for example by selling incense sticks in the neighborhood. Most participants agreed that the decision to provide rehabilitation therapy and special schooling would depend on the awareness of the family about these services, and the financial situation of the family. The perceived benefits from providing rehabilitation care was also cited as influencing the decision to provide therapies.
If there is not going to be any income from this child, then they will think, let the child be as it was born, let him be at home, they are not going to get any returns (Participant U1, FGD1).
Rehabilitation of children with disabilities was reported to be difficult, as participants cited instances where special schools expressed their inability to manage children with special needs. (These children disturb children who are getting better. So, the school said take your child home, Participant R17, FGD5).
Other reasons cited for discontinuation of special education were parental perception that there was no improvement in the child, difficulty in transporting the disabled child, or due to parental concerns that children were not properly cared for at school (Participant R17, FGD5).
Implications For Birth Defects Education
The data from this study can be mapped to frame a conceptual framework that utilizes the sub-themes and themes to identify the target audience, content and timing of birth defects education. As depicted in Fig. 1, women are the primary targets, with information resources aimed at familiarising women on common congenital anomalies, their causes and prevention, the utility and limitations of ultrasound scans, and the legal rights of women to decide about a pregnancy diagnosed with a foetal malformation. The data identify two other targets of birth defects education. Parents/prospective parents need information on common congenital anomalies and their causes in order to prevent maternal blaming, medical and physical rehabilitation services, social welfare schemes, and information on Indian disability laws and the rights of persons with disabilities. Parent information material should include information on support groups. Communities should be the third target group, with information about these conditions, and disability sensitization messages.