Factors associated with knowledge of and satisfaction with newborn screening education: a survey of mothers

Abstract

Purpose:Effective parental education about newborn blood-spot screening may facilitate prompt follow-up, reduce psychosocial harms, and promote trust in screening programs. However, little is known about the aspects of education delivery and content that are of most importance for fostering understanding and meeting parental expectations. We aimed to identify elements of newborn blood-spot screening education and their associations with mothers' knowledge and satisfaction levels.Methods:We conducted a survey (by mail) of 1,712 mothers who were residing in Ontario, Canada, and whose infants had recently undergone newborn blood-spot screening.Results:We received 750 completed questionnaires (response rate 47%). Factors associated with respondents' higher knowledge of newborn blood-spot screening were higher level of education (odds ratio = 2.79), English being spoken at home (odds ratio = 1.96), receiving an information sheet at the time of newborn blood-spot screening (odds ratio = 1.57), and receiving information about how to interpret the results (odds ratio = 2.65). Factors associated with being satisfied were: receiving information prenatally (odds ratio = 2.35), from a health-care professional (odds ratio = 4.54), or from an information sheet at the time of newborn blood-spot screening (odds ratio = 1.72); and receiving messages about the purpose of screening (odds ratio = 3.78), the communication process (odds ratio = 2.57), the interpretation of the results (odds ratio = 4.19), and sample-handling methods (odds ratio = 3.13).Conclusion:Promoting mothers' understanding and meeting their expectations with respect to education about newborn blood-spot screening may require greater engagement with prenatal providers. It also calls for a greater emphasis on communicating with mothers about how blood samples are handled and about the meaning of the test results.

Provision of information about newborn screening antenatally: a sequential exploratory mixed-methods project

“…Furthermore, in a sample of 750 mothers in Ontario, the variation in understanding across topics was as follows: purpose of NBS, 88% understood; how screening is conducted, 85%; the importance of screening, 72%; and how the results would be stored or what happens to the sample after testing, < 15%. 77 This pattern was repeated in a study of 548 post-partum mothers in Texas: 59.1% of women did not know what newborn bloodspots were 30 and 68.2% and 71.4%, respectively, did not realise that a positive result indicated that there could be alterations in either their own or the father's DNA. Knowledge about where they would go to get a second sample or how they would receive the results of screening was also very low, which is of importance in the USA as there is a reliance on parents to proactively seek further testing.…”

“…76 Other studies, however, suggested that parents were not aware of their limited knowledge. For example, in one of the studies reporting the highest levels of awareness of the purpose of NBS (82%; n = 712), only one-third of parents knew that it was possible to receive a false-positive result, 77 an important part of preparing parents for the outcomes of NBS. A further survey of 154 parents from one laboratory in England found that parents had a greater understanding of the process of and rationale for screening than of condition-related information.…”

“…Although numerous papers focused on parents' information needs, these were sometimes inferred from guidelines or from health professionals' views rather than by asking parents directly. Studies using parent samples found that the following topics were valued: l testing -how this is carried out 14,66,70,76,77 l results -when they are provided and how 14,26,63,70,76,77 l the purpose of screening 62,63,70,77 l choice 14,62,66,70,72 l conditions screened for: 14,70,76 ¢ detailed 76 ¢ basic and implications 12,14 l storage 30,68,77 l treatment 63,70,76 l carriers 29,64,78 l the importance of having a child screened/benefits 62,63 l risks -infections 70,78 l the need for further samples/how to respond if in the USA 26,78 70 l information about the fact that screening uses deoxyribonucleic acid (DNA) 70 l heritability 76 l screening alternatives (e.g. testing later in life) …”

Consent for newborn screening: parents’ and health-care professionals’ experiences of consent in practice

“…[6][7][8]14,15 In Canada, screening is considered routine and proceeds unless parents explicitly object -an opt-out approach. 6,[16][17][18] In contrast, some US states have legislation requiring explicit consent, whereas others institute an opt-out approach. [19][20][21] Other jurisdictions, such as the United Kingdom, offer NBS strictly on an informed choice basis.…”

Telessaúde: avaliação de websites sobre triagem auditiva neonatal na Língua Portuguesa

“…Such findings were similar to those described in previous works that analyzed the content on the Teste do Pezinho and showed that the orientation materials do not contemplate all aspects on the approached theme (17)(18)(19) . The quality of orientation to parents is extremely important, considering that it may reflect in higher adherence in all stages of the process of identification and intervention in hearing loss (1,3,20) . This way, it is noteworthy the importance of the websites approaching the benefits of the NHS because it is not enough that the parents know this enables ------+ --2 + + + + + -+ + + + 3 + + + ---+ + + -4 + the early identification of the disability, but that the first year of life is considered to be critical for the development of the child, and the best result will be obtained if the intervention begins within this period.…”