Parental expectations of raising a child with disability in decision-making for prenatal testing and termination of pregnancy: A mixed methods study

• Published in: Patient education and counseling 2020-11, Vol.103 (11), p.2373-2383
• Main Authors: Ngan, Olivia Miu Yung, Yi, Huso, Bryant, Louise, Sahota, Daljit Singh, Chan, Olivia Yiu Man, Ahmed, Shenaz
• Format: Article
• Language: English
• Subjects: Abortion, Induced - psychology; Adult; Child, Preschool; Decision Making; Disability; Disabled Children; Female; Humans; Male; Mixed-methods; Motivation; Nursing; Parenting; Parents - psychology; Pregnancy; Prenatal Diagnosis - methods; Prenatal testing; Surveys and Questionnaires; Termination of pregnancy
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2020.05.010

•Attitudes of termination of pregnancy varied based on fetal conditions.•Providers and parents reported different attitudes of termination of pregnancy.•Their attitudes are affected by parental expectations of a child with disability.•Social implications of advance of genetic prenatal testing needs to be addressed. To examine attitudes toward prenatal testing and termination of pregnancy (TOP) among parents and obstetric providers in relation to their views on raising a child with disability. An explanatory sequential mixed methods study. A survey among 274 parents and 141 providers was followed by interviews with 26 parents and 10 providers. Using multivariate analysis, the relationships between attitudes were examined. Thematic analysis was used to identify the reasons behind the attitudes. In comparison with providers, parents reported more positive attitudes toward raising a child with disability and more moral views about TOP. Providers reported more variations in attitudes toward offering prenatal testing and TOP. Significant associations were found between attitudes toward prenatal testing, raising a child with disability, reproductive autonomy, and TOP. Three major themes were identified: (1) meanings of parenthood from genetic tests; (2) views toward TOP and parental responsibility; and (3) implications of advanced extended prenatal genetic testing. Perceived social–cultural norms of disabilities and parental expectations of raising a child with disability influence decision-making regarding TOP. As more conditions of the fetus are able to be detected, the social–cultural implications of the technology and disabilities need to be addressed in antenatal care.