Oral and written information about newborn screening should be concise and given to parents by primary prenatal care providers
Q How knowledgeable are parents of newborns and their healthcare providers about newborn screening? What are their impressions, as well as those of newborn screening professionals, about the content and timing of newborn screening education?
Purposeful sample of 51 parents (16–39 y, 94% women) of infants <1 year of age who had experience with newborn screening; 78 healthcare professionals (23–72 y, 55% women) who provided prenatal or newborn care (24 family physicians, 17 paediatricians, 11 obstetricians, 11 labour and delivery nurses, and 15 other professionals); and 9 state newborn screening professionals (35–60 y, 67% women) (4 nurses, 3 physicians, 1 social worker, and 1 laboratory supervisor).
22 focus groups were conducted, each lasting about 1 hour, with 2–12 individuals per group. Most focus groups were conducted in person and audiotaped. 1 focus group and 3 individual interviews were conducted by telephone. Group moderators used scripted questions developed specifically for each type of participant. The main themes were identified and categorised.
(1) Knowledge and awareness of initial newborn screening information. Parents knew little about newborn screening. Most stated they had received no information before the birth, and, although many recalled receiving a brochure in hospital after the birth, few had read or remembered the information. Providers assumed that the absence of questions from patients about newborn screening reflected a lack of interest. Few providers were aware of the specifics of newborn screening in their states. (2) Knowledge and understanding of the process of informing parents and providers of the results of newborn screening. Most parents preferred to be given screening results by their own providers and only if there was a problem. Parents who received requests for retesting from the health department were often alarmed and confused because they were not aware of the possibility of retesting or the state’s involvement. Only clinicians who provided postnatal care received test results; some felt that test result reporting was too slow. Screening professionals identified parents’ failure to designate a primary care provider as a barrier to reporting results, requiring the health department to contact parents directly when retesting was needed. (3) Informed consent and costs. Most parents were not concerned about consent or costs. Most providers and screening professionals felt that requiring parental consent would decrease test uptake. Providers were unaware of the costs of screening and who paid. (4) Recommendations for how newborn screening information needs to be communicated to parents. All groups agreed that education about newborn screening would best be communicated by the primary prenatal care provider during routine visits in the third trimester, accompanied by a concise brochure in the woman’s first language. (5) Recommendations for what parents and providers want and need to know. Both parents and providers felt that parents initially need only limited information about newborn screening: that screening will be done, that it will benefit their baby, that retesting is a possibility, and how parents will be notified of results. Providers and screening professionals agreed that providers do not require detailed education about screening but do need resources for additional information for themselves and parents.
Parents of newborns and their healthcare providers had limited knowledge about newborn screening. Parents wanted concise verbal information from their primary prenatal care provider. All groups recommended that a brief, easy to understand brochure be given to parents before the birth.
- Jacqueline Cusworth-Aerts, ACNP, MHSc
The study by Davis et al was designed in response to the 1999 American Academy of Pediatrics Newborn Screening Task Force recommendation that research be done on improving patient education about newborn screening for genetic and other disorders.1
Although 49 of 51 US states and territories had educational pamphlets available, Davis et al performed a qualitative study to determine parent and provider knowledge and awareness of newborn screening; to gather opinions from parents, providers, and newborn screening professionals about the content and timing of newborn screening education; and to use consensus data to formulate recommendations and develop educational materials for parents and providers. This was an ambitious task for this study design.
Davis et al acknowledged 3 limitations to their study. Firstly, they used a purposeful sample from 6 US states. Although the sample included a mix of parents, healthcare providers, and newborn screening professionals, it did not represent the US population as a whole. Participants were chosen based on availability of collaborators who could access providers and parents. Secondly, only 3 parents were identified who had received a false positive test result for their infants. Therefore, recommendations from parents about how to deal with such results are limited. Lastly, the individuals conducting the focus groups were also involved in data analysis and had opportunity to bias or influence the results.
With a qualitative study design, the next step is to explore the themes developed. Davis et al developed educational materials for parents and healthcare providers despite acknowledgement of the study’s limitations. Overcoming problems in disseminating materials and maintaining the supportive infrastructure required to deal with test results still needs review. False positive results have increased with mass screening2 and may cause parental stress and parent-child dysfunction.3 There are many barriers to good quality provision of educational materials, including a lack of comprehensive quality assurance practices, outsourcing, financial constraints, and perceived communication problems with providers who treat these patients.4 Professional societies, such as the American Academy of Pediatrics, could be instrumental in making this programme more uniform and streamlined.
For correspondence: Dr T C Davis, Department of Pediatrics, Louisiana State University Health Sciences Center, Shreveport, LA, USA.
Source of funding: Health Resources and Services Administration.