| Literature DB >> 31940763 |
Wei-Ju Chen1, Shixi Zhao2, Tse-Yang Huang3, Oi-Man Kwok4, Lei-Shih Chen5.
Abstract
With the rapid growing rate of autism spectrum disorders (ASDs), prenatal genetic testing (PGT) has been offered to detect various genomic disorders, including ASD, in Taiwan. However, disparities exist in this area, as there is limited research on factors associated with PGT utilization and relevant decision-making that may guide the regulations and ethical guidelines for culturally appropriate PGT services in Taiwan. This study proposed a comprehensively integrated theoretical framework for examining the intention to undergo PGT to detect ASD susceptibility genes and subsequent abortion decision-making among Taiwanese mothers of children affected by ASD. Survey data from 333 mothers of children with ASD in 236 elementary schools with special education services in Taiwan were collected and analyzed using structural equation modeling. Approximately two-thirds of the participants (66.6%) would undergo PGT to detect ASD susceptibility genes; more than half (53.1%) would terminate the hypothetically ASD-affected pregnancy. Abortion intention was associated with age, religion, attitudes toward PGT for detecting ASD susceptibility genes, and willingness to undergo such PGT. This study explores the potential impacts of PGT on Taiwanese society, and the findings are applicable to countries heavily influenced by Chinese culture, areas with Asian immigrants, and Western countries with such PGT services and/or research available.Entities:
Keywords: Taiwan; abortion; autism spectrum disorders; mothers; prenatal genetic testing; structural equation modeling; termination of pregnancy
Mesh:
Year: 2020 PMID: 31940763 PMCID: PMC7013751 DOI: 10.3390/ijerph17020476
Source DB: PubMed Journal: Int J Environ Res Public Health ISSN: 1660-4601 Impact factor: 3.390
Sample characteristics.
| Variable | M (SD)/% |
|---|---|
| Age | 38.93 (4.88) |
| Education level | |
| Below college | 67.9% |
| College or above | 32.1% |
| Marital status | |
| Married | 90.1% |
| Others | 9.9% |
| Annual household income | |
| Less than NT$600,000 (~US$19,745) | 35.3% |
| NT$600,000–1,200,000 (~US$19,745–39,489) | 41.0% |
| Above NT$1,200,000 (~US$39,489) | 23.7% |
| Employment status | |
| Employed | 55.1% |
| Not employed | 44.9% |
| Religion | |
| Folk religion | 27.6% |
| Buddhism | 27.6% |
| Christianity | 10.0% |
| No religion | 22.4% |
| Multiple religions | 12.4% |
| Previous abortion experience | |
| Yes | 42.9% |
| No | 57.1% |
| Family history of ASD | |
| Yes | 35.7% |
| No | 64.3% |
| Severity level of the child(ren) with ASD a | 1.58 (0.76) |
| Current age of child(ren) with ASD | 9.61 (2.13) |
| Knowledge of PGT for detecting ASD susceptibility genes b | 0.33 (0.22) |
| Perceived genetic etiology of ASD | |
| Yes | 43.4% |
| No | 56.6% |
M, mean; SD, standard deviation; %, percentage; NT$, New Taiwan Dollars; ~US$, conversion to United States Dollars; ASD, Autism Spectrum Disorders. a In Taiwan, the severity level of children’s ASD is categorized as mild, moderate, severe, or profound [35,36]. The minimum and maximum severity scores were 1 (i.e., mild) and 4 (i.e., profound), respectively. In this study, 170 children (48.9%) were categorized as mild, 125 children (35.9%) were diagnosed with a moderate level, 44 children (12.6%) were in the severe category, and 9 children’s (2.6%) severity level was profound. b The knowledge of PGT for detecting ASD susceptibility genes was assessed using seven multiple-choice questions, and the scores were computed utilizing the sum of correct responses divided by seven. The minimum and maximum knowledge scores were 0 and 1, respectively.
Description, reliability, validity, and example questions of the psychosocial constructs measured in the survey.
| Table. | Definition | No. of Items | Example Question | M a/% | SD a | Min a | Max a | TheoreticalRange b | Reliability: Cronbach’s α c | Validity: CFA d |
|---|---|---|---|---|---|---|---|---|---|---|
| Perceived severity of ASD | α Overall = 0.89 | χ2 = 51.85, df = 19, | ||||||||
| Parent-wise perceived severity | Beliefs regarding the seriousness of ASD and its negative impacts on parents’ lives | 4 | Treatment and education regarding ASD cause extra financial burden on the caregivers [on a 4-point scale ranging from strongly disagree to strongly agree] | 3.38 | 0.54 | 1.25 | 4.00 | 1–4 | α = 0.88 | |
| ASD-child-wise perceived severity | Beliefs regarding the seriousness of ASD and its negative impacts on children with ASD | 4 | ASD affects social life of the children with ASD [on a 4-point scale ranging from strongly disagree to strongly agree] | 3.28 | 0.51 | 1.50 | 4.00 | 1–4 | α = 0.81 | |
| Perceived benefits of PGT for detecting ASD susceptibility genes within a fetus | α Overall = 0.93 | χ2 = 121.49, df = 39, | ||||||||
| General benefits | Beliefs regarding the helpfulness of PGT for detecting ASD susceptibility genes overall | 6 | ASD genetic testing is helpful in early treatment and utilization of relevant resources [on a 4-point scale ranging from strongly disagree to strongly agree] | 3.19 | 0.46 | 2.00 | 4.00 | 1–4 | α = 0.91 | |
| Family planning-related benefits | Beliefs regarding the helpfulness of PGT for detecting ASD susceptibility genes in family planning | 5 | ASD genetic testing might be helpful in family planning for parents of children with ASD [on a 4-point scale ranging from strongly disagree to strongly agree] | 2.96 | 0.56 | 1.00 | 4.00 | 1–4 | α = 0.91 | |
| Perceived barriers to undergoing PGT for detecting ASD susceptibility genes within a fetus | α Overall = 0.83 | χ2 = 63.14, df = 24, | ||||||||
| Testing-related barriers | Beliefs regarding testing related obstacles in undergoing PGT for detecting ASD susceptibility genes | 5 | The process of undergoing ASD genetic testing is uncomfortable [on a 4-point scale ranging from strongly disagree to strongly agree] | 2.58 | 0.47 | 1.00 | 4.00 | 1–4 | α = 0.70 | |
| Social discrimination barriers | Beliefs regarding the prejudice and discrimination related obstacles in undergoing PGT for detecting ASD susceptibility genes | 4 | The testing results might lead to discrimination against people with ASD [on a 4-point scale ranging from strongly disagree to strongly agree] | 2.66 | 0.60 | 1.00 | 4.00 | 1–4 | α = 0.88 | |
| Subjective norms related to PGT for detecting ASD susceptibility genes within a fetus | α Overall = 0.91 | χ2 = 161.07, df = 42, | ||||||||
| Professionals | Views and influence of physicians, other non-physician health professionals (e.g., nurses, social workers, occupational/physical/speech therapists, and psychologists), and school teachers on the uptake decision-making of PGT for detecting ASD susceptibility genes | 3 | If you were pregnant, physicians would recommend PGT for detecting ASD susceptibility genes within your baby [on a 4-point scale ranging from very unlikely to very likely] | 9.23 | 2.87 | 1.67 | 16.00 | 1–16 | α = 0.82 | |
| Family members | Views and influence of spouse, spouse’s biological family, participants’ own biological family, and their children without ASD on the uptake decision-making of PGT for detecting ASD susceptibility genes | 4 | If you were pregnant, your spouse would suggest you undergo PGT for detecting ASD susceptibility genes within your baby [on a 4-point scale ranging from very unlikely to very likely] | 6.31 | 2.69 | 1.00 | 16.00 | 1–16 | α = 0.92 | |
| Other people | Views and influence of friends, neighbors, other parents of children without ASD, and general public on the uptake decision-making of PGT for detecting ASD susceptibility genes | 4 | If you were pregnant, your friends would suggest you undergo PGT for detecting ASD susceptibility genes within your baby [on a 4-point scale ranging from very unlikely to very likely] | 4.33 | 2.03 | 1.00 | 12.00 | 1–16 | α = 0.89 | |
| Attitudes toward PGT for detecting ASD susceptibility genes within the fetus | Beliefs and values about PGT for detecting ASD susceptibility genes | 4 | All pregnant women should undergo PGT for detecting ASD susceptibility genes within their babies [4-point scales ranging from strongly disagree to strongly agree and from very unimportant to very important] | 9.01 | 3.41 | 2.25 | 16.00 | 1–16 | α = 0.83 | χ2 = 4.70, df = 2, |
| Self-efficacy in undergoing PGT for detecting ASD susceptibility genes within the fetus | Confidence in going through PGT for detecting ASD susceptibility genes | 4 | If you were pregnant, considering the factor of time, on a scale of 0 to 10, how confident are you in undergoing PGT for detecting ASD susceptibility genes within your baby? [11-point scale ranging from 0 to 10] | 6.13 | 3.11 | 0 | 10.00 | 0–10 | α = 0.93 | χ2 = 9.57, df = 3, |
| Perceived recurrence risk of having another child with ASDe | Beliefs regarding the chance of having another child with ASD | 1 | Suppose you plan to have another child; the chance of having another child with ASD is ______ % [0-100% (0% = child will not have ASD; 100% = child will definitely have ASD)] | 36.53 | 27.68 | 0 | 100.00 | 0–100 | ||
| Intention to undergo PGT for detecting ASD susceptibility genes within the fetus e | Likelihood of undertaking PGT for detecting ASD susceptibility genes in the future | 1 | If you were pregnant, how likely would you to undergo PGT for detecting ASD susceptibility genes within your baby? [4-point scale ranging from very unlikely to very likely] | 2.89 | 0.83 | 1.00 | 4.00 | 1–4 | ||
| Intention to terminate ASD-affected pregnanciese | Likelihood in decision regarding continuation or termination of ASD-affected pregnancies in the future | 1 | If PGT results indicate that you might have a child with ASD, what would be your choice? [give birth to the child or do not keep the child (abortion)] | Give birth to the child: 46.9% | ||||||
No., number; M, mean; %, percentage; SD, standard deviation; Min, minimum; Max, maximum; α, alpha; CFA, confirmatory factor analysis; ASD, autism spectrum disorder; χ, chi-square; df, degrees of freedom; RMSEA, root mean square error of approximation; CFI, comparative fit index; SRMR, standardized root mean square residual. a Descriptive statistics of the collected survey data for each of the whole scale/subscale. b Possible range of scores for each of the whole scale/subscale. c An acceptable reliability was considered for those with a Cronbach’s α equal or greater than 0.70 [49].d An acceptable construct validity was considered for those with a RMSEA smaller than 0.10, CFI greater than 0.90, and SRMR smaller than 0.08 [47]. e Cronbach’s alpha and confirmation factor analysis could not be conducted as it was a single-item measure.
Figure 1Structural model: factors associated with intention to undergo prenatal genetic testing (PGT) for detecting autism spectrum disorders (ASD) susceptibility genes and to terminate affected pregnancies among Taiwanese mothers of children with ASD in our sample, controlling for socio-demographic variables, knowledge, and perceived genetic etiology of ASD. Due to the multicollinearity related to the child’s age, time since ASD diagnosis was not included in this final model. Only the statistically significant associations (represented using solid lines) are presented in this figure. * p < 0.05. ** p < 0.01. *** p < 0.001.