Understanding perspectives on neural tube defect management: insights from Jordanian parents

Figures & data

Table 1. Attitudes and knowledge of cases and controls’ parents toward TOP.

Question		Answer	Frequency	Percentage
Would you choose to abort your baby if they had a:	Lethal malformation	Yes	105	73.4%
		No	38	26.6%
	Severe brain dysfunction	Yes	79	55.2%
		No	64	44.8%
	Severe bodily dysfunction but healthy brain	Yes	55	38.1%
		No	88	61.5%
	Mild brain dysfunction	Yes	30	21%
		No	113	79%
	Mild bodily dysfunction (doesn’t prevent education, work, or marriage)	Yes	12	8.4%
		No	131	91.6%
Do you agree with the following statements?^b	Abortion is parent’s right^a	Agree/strongly agree	108	75.5%
	Abortion ends a life/soul that has been completely formed^a	Agree/strongly agree	116	81.1%
	Abortion decision should be made by both parents	Agree/strongly agree	135	94.4%
	Abortion has long-term effects on maternal mental health^a	Agree/strongly agree	114	79.75
	I will never accept abortion^a	Agree/strongly agree	68	47.6%
	Abortion is justified in some cases^a	Agree/strongly agree	121	84.6
	Abortion should be illegal^a	Agree/strongly agree	49	34.3%
	Abortion is not a religious issue	Agree/strongly agree	28	19.6%
Do you agree with the following statements?^c	Legally, a mother has the right for abortion	Agree/strongly agree	65	45.5%
		Neutral	18	12.6%
	Legally, abortion is allowed in certain cases	Agree/strongly agree	123	86%
		Neutral	9	6.3%
	Legally, abortion is not allowed regardless of the case	Agree/strongly agree	16	10.2%
		Neutral	12	8.4%
	Current abortion law is effective at preventing abortion	Agree/strongly agree	43	30.1%
		Neutral	49	34.3%
	Every public hospital should provide abortions	Agree/strongly agree	68	47.6%
		Neutral	14	9.8%
In case of early diagnosis of an NTD, before 19 weeks of gestation (before soul is created in some religious beliefs), Which would you choose?		Abortion	61	42.7%
		Continue without intervention	15	10.5%
		Intrauterine surgery	56	39.2%
		Postnatal surgery	11	7.7%
In case of early diagnosis of an NTD, before 24 weeks of gestation (before the age of viability where neonates can survive outside the maternal uterus), Which would you choose?		Abortion	11	7.7%
		Continue without intervention	27	18.9%
		Intrauterine surgery	84	58.7%
		Postnatal surgery	21	14.7%
In your opinion, is religious input important for making decisions about abortion?		Yes	139	97.2%

^a These items were included in the attitude score reported in Table 2.

^b This item was a four-point Likert scale question ranging from strongly disagree to strongly agree (disagree/strongly disagree are not represented in the table).

^c This item was a five-point Likert question ranging from strongly disagree to strongly agree with a neutral option (disagree/strongly disagree is not represented in the table).

Table 2. Demographic characteristics and current health ­status of NTD patients.

Variable	Category	p Value	Odds ratio	CI lower limit	CI upper limit
Predictors of positive attitudes toward TOP
Child with NTD	NTD cases	.648	1.183	.576	2.427
	Non-NTD children	Reference
Patent’s level of education	Postgraduate/bachelor’s	.021	.417	.199	.876
		Reference
Living area	North/south	.118	2.630	.784	8.830
	Center	Reference
Parent’s age	Age >40	.261	.647	.303	1.382
	Age ≤40	Reference
Number of children	Children >3	.424	.719	.320	1.614
	Children ≤3	Reference

Table 3. Demographics and health status of children with NTDs.

Question	Answer	Frequency	Percentage
Is your baby with NTD dead or alive?	Alive	65	91.5%
	Dead	6	8.5%
Is your baby a male or a female?	Male	29	40.8%
	Female	42	59.2%
Type of malformation	Spina bifida	65	91.5%
	Encephalocele	6	8.5%
Was abortion offered to you by your doctor?	Yes	17	24.3%
	No	53	75.7%
Were you aware of NTDs prior to that pregnancy?	Yes	10	14.1%
	No	61	85.9%
Was your pregnancy, of the child with the NTD, planned?	Yes	34	47.9%
	No	37	52.1%
Did you take folic acid supplements prior to that pregnancy?	Yes	14	20%
	No	56	80%
Does your child suffer from hydrocephalus?	Yes	51	71.8%
	No	20	28.2%
If you answered "yes" to the previous question, when was hydrocephalus diagnosed?	Antenatal	23	45.1%
	Postnatal	17	33.3%
	After postnatal surgery	11	21.6%
How would you rate the mental/cognitive development of your child compared to their peers?	Severely delayed	6	9.1%
	Moderately delayed	8	12.1%
	Normal	52	78.8%
What is the status of your child’s motor function	Uses wheelchair	30	46.2%
	Can move with the help of others	8	12.3%
	Can move without the help of others	12	18.5%
	Completely independent	15	23.1%
How would you rate the medical care that your child has received?	Weak/unsatisfactory	7	9.8%
	average	21	29.6%
	Satisfactory/excellent	43	61.6%

Figure 1. Time of diagnosis for NTDs in affected patients. Perception of parents of NTD children toward TOP and intrauterine surgery.

Table 4. Perception of parents of NTD children toward TOP and intrauterine surgery.

Question	Answer	Frequency	Percentage
If there were a way to make an early diagnosis of NTDs in pregnancy, would you do it?	Yes	68	95.8%
	No	3	4.2%
In case of early diagnosis of an NTD (before 19 weeks), given that abortion is allowed legally and religiously, what are the chances you would abort your baby?	Highly unlikely	24	33.8%
	Unlikely	7	9.9%
	Likely	23	32.4%
	Highly likely	17	23.9%
In case of early diagnosis of an NTD (before 24 weeks), given that abortion is allowed legally what are the chances you would abort your baby?	Highly unlikely	35	49.3%
	Unlikely	15	21.1%
	Likely	9	12.7%
	Highly likely	12	16.9%
Based on the two previous questions, please select the reasons for choosing "likely" or "highly likely". (More than one answer can be selected)	To decrease burden on parent	17
	Because there is no treatment for the disease	15
	To avoid the child’s suffering	33
	Because religion allows it	16
	For the safety of the mother	14
Based on the two previous questions, please select the reasons for choosing "unlikely" or "highly unlikely". (More than one answer can be selected)	Prefer to continue and deal with the consequences	19
	Abortion in religion is the murder of a soul	41
	First child after recurrent miscarriages	1
	Not accepting the opinion that religion allows abortion in these cases	16
	I don’t fully trust the doctor’s diagnosis	12
	Social norms	2
If an intrauterine surgical option to correct NTDs were available, how likely are you to undergo the surgery?	Possible	63	88.7%
	Impossible	8	11.3%
Now after hearing the risks and benefits of surgical intervention, how likely are you to undergo the surgery?	Possible	53	74.6%
	Impossible	18	25.4%
If your answer to either of the two previous questions was "impossible", Please mention your reasons. (More than one answer can be selected)^a	Medical causes – danger to mother	17
	Medical causes – danger to fetus	8
	Financial reasons	7
	Logistic reasons	2
	Social reasons – religious beliefs	2
	Social reasons – opinion of others	1

^a Examples for each of these causes were mentioned to respondents.

Data availability statement

Data are available upon request.