Sociodemographic characteristics
The study included a predominantly female population, with 79.9% being women. The majority of participants were between the ages of 31–50 years (60.5%), and the ethnic group with the highest representation was Han (69.2%). The majority of participants resided in urban areas (88.3%) and were highly educated, with 92.3% having attained a college degree or higher. Most participants were married (72.1%), while only a small proportion reported having a religious affiliation (1.3%). Among the study sample, 69.9% reported having children, while 26.8% reported having close relatives or friends who had children with birth defects. The majority of participants worked in maternal and child-related medical institutions (68.6%), with over half working in clinical service departments (55.2%). A minority of participants reported receiving training related to birth defects prevention and control (35.1%), and even fewer had received ethics training related to birth defects (25.3%) (see Table 3).
Table 3
Characteristics of participants (N = 750)
Variables | | Number (N) | Percentage (%) |
Gender | | | |
| Male | 151 | 20.1 |
| Female | 599 | 79.9 |
Age (years) | | | |
| ≤ 30 | 258 | 34.4 |
| 31–50 | 454 | 60.5 |
| ≥ 51 | 38 | 5.1 |
Ethnicity | | | |
| Han | 519 | 69.2 |
| Minority | 231 | 30.8 |
Current residence | | | |
| Urban (including counties and towns) | 662 | 88.3 |
| Rural | 88 | 11.7 |
Education background | | | |
| High school and below (including secondary school) | 59 | 7.8 |
| Junior college and undergraduate college | 620 | 82.7 |
| Master’s and above | 71 | 9.5 |
Marital status | | | |
| Unmarried | 188 | 25.1 |
| Married | 541 | 72.1 |
| Other (divorced, widowed) | 21 | 2.8 |
Religious affiliation | | | |
| Yes | 10 | 1.3 |
| No | 740 | 98.7 |
Children | | |
| Yes | 524 | 69.9 |
| No | 226 | 30.1 |
Relatives/friends with children with birth defects | | |
| Yes | 201 | 26.8 |
| No | 549 | 73.2 |
Unit Type | | | |
| Maternal and child-related medical and health institution a | 514 | 68.6 |
| General hospital | 154 | 20.5 |
| Other (community health service centers, township health centers) | 82 | 10.9 |
Professional title | | | |
| Primary-level professional title | 228 | 30.4 |
| Intermediate-level professional title | 276 | 36.8 |
| High-level professional title | 140 | 18.7 |
| None | 106 | 14.1 |
Type of work | | | |
| Full-time | 653 | 87.1 |
| Part-time | 97 | 12.9 |
Participants (multiple choice) | | |
| Clinical service departments b | 475 | 55.2 |
| Maternal and child health sector c | 279 | 32.4 |
| Other d | 107 | 12.4 |
Received training related to birth defect prevention and control in the last 3 years | | |
| Yes | 263 | 35.1 |
| No | 487 | 64.9 |
Received training on ethics related to birth defects in the last 3 years | | |
| Yes | 190 | 25.3 |
| No | 560 | 74.7 |
a Maternal and child-related medical institutions refer to institutions that specialize in maternal and child health care institutions, including maternal and child health stations and hospitals.
b Clinical service departments include gynecology, obstetrics, pediatrics, genetic counseling, radiology, and assisted reproduction.
c Maternal and child health departments encompass the health department, women's health, child health, premarital/preconception health, and health education and information sections.
d Other refers to participants in professions related to maternal and child health services not included in the above categories.
Attitudes Of Health Professionals Toward Topfa
The results of the survey revealed that there was a slight variation in the proportions of health professionals who supported or opposed the birth of fetuses with congenital heart disease or finger loss. Specifically, 45.5% of professionals believed that a fetus with congenital heart disease should be born, while 54.5% thought it should not be born. Similarly, 50.8% of professionals believed that a fetus with finger loss should be born, while 49.2% believed that it should not be born. In contrast, the attitudes of professionals toward fetuses with cleft lip and palate and phenylketonuria varied widely, with 63.5% believing that a fetus with cleft lip and palate should be born and 36.5% believing that the fetus should not be born. For a fetus with phenylketonuria, only 39.7% believed that it should be born, while 60.3% believed that it should not be born. The results are presented in Fig. 1.
Considerations Of Health Professionals On Birth Of Fetuses With Birth Defects
A comprehensive analysis of the four cases of birth defects revealed that maternal and child health professionals tended to consider similar factors as important across all cases. For these four cases, the three most frequently selected factors by professionals out of 11 were “the impact of fetal disease on fetal function and growth,” “the severity of fetal disease,” and “the assessment of indications for fetal disease by professionals and related professional advice.” The top three factors in terms of importance were consistent with the top two factors most frequently selected by professionals, with the exception of the third factor, which was the independent choice of the pregnant woman and her family, as shown in Table 4.
In cases where professionals believed that the fetus should have been born in all four scenarios, their top three factors of importance and the top three most frequently selected factors were similar to those of all professionals, with only a slight variation in ranking. Conversely, for those who believed that the fetus should not have been born in the four cases, the top two most important factors and the top two most frequently selected factors in each case were consistent with those chosen by all professionals. However, the third most important and frequently considered factor differed, namely, “the possible negative impact of the fetus' illness on the family or a family member.”
Table 4
Health professionals' considerations regarding birth of fetuses with birth defects
Factors considered by health professionals | Case 1 Congenital heart disease | Case 2 Cleft lip and palate | Case 3 Finger loss | Case 4 Phenylketonuria |
| Number(N) | Mean ± SD | Number(N) | Mean ± SD | Number(N) | Mean ± SD | Number(N) | Mean ± SD |
·All health professionals | N = 750 | | N = 750 | | N = 750 | | N = 750 | |
The effect of fetal autoimmune diseases on fetal body function and growth and development | 496 | 6.25 ± 4.587 | 473 | 5.95 ± 4.673 | 497 | 6.26 ± 4.569 | 528 | 6.72 ± 4.463 |
The severity of fetal diseases | 462 | 6.11 ± 4.936 | 460 | 6.13 ± 4.951 | 477 | 6.42 ± 4.925 | 499 | 6.76 ± 4.868 |
The independent choice of the pregnant woman and her family | 359 | 4.56 ± 4.982 | 369 | 4.70 ± 4.974 | 358 | 4.68 ± 5.060 | 350 | 4.57 ± 5.038 |
Evaluation of indications for treatment of fetal diseases by clinical professionals and related professional advice | 403 | 4.03 ± 4.096 | 386 | 3.90 ± 4.149 | 374 | 3.60 ± 3.953 | 378 | 3.71 ± 4.053 |
·Health professionals who believe that a fetus should be born | n = 341 | | n = 476 | | n = 381 | | n = 298 | |
The effect of fetal autoimmune diseases on fetal body function and growth and development | 207 | 5.50 ± 4.556 | 281 | 5.44 ± 4.650 | 224 | 5.39 ± 4.615 | 179 | 5.55 ± 4.632 |
The severity of fetal diseases | 204 | 5.78 ± 4.844 | 291 | 6.03 ± 4.898 | 235 | 6.10 ± 4.896 | 184 | 6.18 ± 4.941 |
The independent choice of the pregnant woman and her family | 198 | 5.52 ± 4.923 | 263 | 5.26 ± 4.941 | 196 | 5.00 ± 5.009 | 140 | 4.51 ± 4.935 |
Evaluation of indications for treatment of fetal diseases by clinical professionals and related professional advice | 209 | 4.61 ± 4.121 | 263 | 4.23 ± 4.199 | 195 | 3.74 ± 4.011 | 159 | 4.00 ± 4.165 |
·Health professionals who believe that a fetus should not be born | n = 409 | | n = 247 | | n = 369 | | n = 452 | |
The effect of fetal autoimmune diseases on fetal body function and growth and development | 289 | 6.87 ± 4.524 | 192 | 6.83 ± 4.589 | 273 | 7.16 ± 4.347 | 349 | 7.50 ± 4.177 |
The severity of the fetal disease | 258 | 6.40 ± 4.999 | 169 | 6.28 ± 5.048 | 242 | 6.74 ± 4.941 | 315 | 7.14 ± 4.786 |
The possible negative impact of the fetal disease on the family or a family member | 227 | 4.63 ± 4.264 | 133 | 4.06 ± 4.298 | 193 | 4.16 ± 4.102 | 249 | 4.43 ± 4.134 |
Assessment of the indications for treatment of fetal diseases by clinical professionals and related professional advice | 194 | 3.54 ± 4.015 | 123 | 3.32 ± 4.002 | 179 | 3.45 ± 3.892 | 219 | 3.52 ± 3.970 |
SD = Standard deviation |
Health Professionals' Attitudes On Family Member’s Decision-making Rights For Fetuses With Birth Defects (Dup: Abstract ?)
The attitudes of professionals toward who should make the final decision regarding the birth of a fetus with a birth defect varied across the four scenarios, as shown in Table 5. In the case of congenital heart disease, 321 (42.8%) professionals agreed with the idea of parents' decision to keep the child, while 291 (38.8%) disagreed. Notably, in the case of cleft lip and palate, 401 (53.5%) professionals agreed with the idea of parents' decision to keep the child, while 206 (27.5%) disagreed. Regarding grandparents having the right to decide whether the child should be born: 193 (25.7%) agree, while 395 (52.7%) disagree. In the case of finger loss, 331 (44.1%) professionals agreed with the idea of parents being able to decide whether to terminate the pregnancy, while 249 (33.2%) disagreed. But there was an equal number of professionals who agreed and disagreed with the idea of grandparents having the right to decide whether the child should be born: 272 (36.3%) agreed, while 283 (37.7%) disagreed. In the case of phenylketonuria, 352 (46.9%) professionals agreed with the father's decision not to want the child, while 213 (28.4%) disagreed. Regarding the mother's decision to keep the child, 237 (31.6%) professionals agreed and 359 (47.9%) disagreed. See Table 5.
Table 5
Attitudes of health professionals regarding the different role in each scenario
| Ideas of different roles in each case | Agree | Uncertain | Disagree |
Case 1 (Congenital heart disease) | The parents want to keep the baby | 321(42.8%) | 138(18.4%) | 291(38.8%) |
Case 2 (Cleft lip and palate) | The parents want to keep the baby | 401(53.5%) | 143(19%) | 206(27.5%) |
The grandparents wanted the mother to have an abortion | 193(25.7%) | 162(21.6%) | 395(52.7%) |
Case 3 (Finger loss) | The parents want to give up the baby | 331(44.1%) | 170(22.7%) | 249(33.2%) |
The grandparents thought the baby could be born | 272(36.3%) | 195(26%) | 283(37.7%) |
Case 4 (Phenylketonuria) | The mother decided to keep the baby | 237(31.6%) | 154(20.5%) | 359(47.9%) |
The father doesn't want the baby | 352(46.9%) | 185(24.7%) | 213(28.4%) |
Health professionals were more consistent in their selection of final decision-making authority across the four types of birth defects. The majority of professionals (75–78%) preferred the option of "joint decision-making by husband and wife," followed by the options of "pregnant woman" (9–12%) and "joint decision-making by family" (9–10%). A minority chose "husband" (2–3%) and "grandparents" (0–3%), as shown in Fig. 2.
Associations Between Health Professionals' Attitudes Toward Topfa And Sociodemographic Variables
In order to explore potential associations between health professionals' attitudes toward TOPFA and sociodemographic variables, binary logistic regression analysis was employed. The results of this analysis are presented in Table 6, which outlines the associations observed among health professionals' attitudes and various sociodemographic variables.
In terms of sociodemographic characteristics, our study found that religious health professionals (OR = 5.52;95% CI = 1.14–26.85) and those who had received birth defect prevention and control-related training (OR = 1.79; 95% CI = 1.12–2.85) were more likely to choose that the fetus with congenital heart disease (Case 1) should be born. For cleft lip and palate (Case 2), health professionals aged 51 years and older (OR = 2.40; 95% CI = 1.00–5.72) were more likely to select that the fetus should be born. Part-time professionals (OR = 0.39; 95% CI = 0.22–0.66) and health professionals with intermediate-level professional titles (OR = 0.50; 95% CI = 0.27–0.92) were more likely to choose that the fetus should not be born. For phenylketonuria (Case 4), health professionals in clinical services (OR = 1.42; 95% CI = 1.00–2.01) and maternal and child health departments (OR = 1.40; 95% CI = 1.02–1.91) preferred that the fetus should be born, while professionals who are minorities (OR = 0.68; 95% CI = 0.47–0.98) and married (OR = 0.54; 95% CI = 0.32–0.90) were more likely to choose that this fetus should not be born.
Table 6
Associations between health professionals' attitudes and sociodemographic variables
Covariates | Categories | Odds ratio | B | SE | | P-Values | 95% CI |
Case 1 (Congenital heart disease) | | | | | | |
Religious or not | | | | | | | |
| Yes | 5.52 | 1.71 | 0.81 | 4.49 | 0.034* | 1.14–26.85 |
| No (ref.) | | | | | | |
Received training related to birth defect prevention and control in the last 3 years | | | | | |
| Yes | 1.79 | 0.58 | 0.24 | 6.01 | 0.014* | 1.12–2.85 |
| No (ref.) | | | | | | |
Case 2 (Cleft lip and palate) | | | | | | |
Age (years) | | | | | | | |
| ≤ 30 (ref.) | | | | | | |
| 31–50 | 1.24 | 0.21 | 0.23 | 0.83 | 0.362 | 0.78–1.95 |
| ≥ 51 | 2.40 | 0.87 | 0.44 | 3.88 | 0.049* | 1.00–5.72 |
Type of work | | | | | | | |
| Full-time (ref.) | | | | | | |
| Part-time | 0.39 | -0.95 | 0.28 | 11.93 | 0.001* | 0.22–0.66 |
Professional title | | | | | | | |
| None (ref.) | | | | | | |
| Primary-level professional title | 0.63 | -0.46 | 0.29 | 2.49 | 0.114 | 0.35–1.12 |
| Intermediate-level professional title | 0.50 | -0.69 | 0.31 | 4.97 | 0.026* | 0.27–0.92 |
| High-level professional title | 0.72 | -0.32 | 0.34 | 0.91 | 0.341 | 0.37–1.41 |
Case 4 (Phenylketonuria) | | | | | | |
Ethnicity | | | | | | | |
| Han Chinese (ref.) | | | | | | |
| Ethnic minority | 0.68 | -0.39 | 0.19 | 4.41 | 0.036* | 0.47–0.98 |
Marital status | | | | | | | |
| Unmarried (ref.) | | | | | | |
| Married | 0.54 | -0.62 | 0.26 | 5.65 | 0.017* | 0.32–0.90 |
| Others (divorced, widowed) | 0.60 | -0.51 | 0.52 | 0.94 | 0.333 | 0.22–1.68 |
Clinical service departments | | | | | | | |
| Yes | 1.42 | 0.35 | 0.18 | 3.92 | 0.048* | 1.00–2.01 |
| No (ref.) | | | | | | |
Maternal and child health sector | | | | | | | |
| Yes | 1.40 | 0.33 | 0.16 | 4.35 | 0.037* | 1.02–1.91 |
| No (ref.) | | | | | | |
* p < 0.05.