Newborn Screening Knowledge and Attitudes Among Midwives and Out-of-Hospital-Birth Parents.

Midwifery and nursing are collaborative partners in both education and practice. Understanding needs and barriers to clinical services such as newborn screening is essential. This study examined knowledge and attitudes of midwives and out-of-hospital-birth parents about newborn blood spot screening (NBS). Descriptive and cross-sectional surveys were distributed to midwives and out-of-hospital-birth parents from birth center registries and the Utah Health Department of Vital Records. Seventeen midwife surveys (response rate: 17%) and 113 parent surveys (response rate: 31%) were returned. Most midwives and out-of-hospital-birth parents reported satisfactory knowledge scores about NBS. Only 5% of parents (n = 6) did not participate in NBS. Most midwives reported that NBS is important and encouraged patients to consider undergoing NBS. Some concerns included the lack of education for both midwives and out-of-hospital patients and the trauma and accuracy of the heel prick soon after birth. Both midwives and out-of-hospital-birth parents expressed a need for improved NBS education. Additional studies are needed to ascertain whether this trend is seen with similar populations throughout the United States, to further elucidate the factors that drive NBS nonparticipation, and to develop educational resources for midwives and their patients.

Early access to biological neonatal screening: coordination among child care action programs.

OBJECTIVE: To verify factors associated with early newborn access to biological neonatal screening. METHOD: A cross-sectional quantitative study was carried out with all newborns who underwent tests in healthcare units, hospitals, and laboratories of a city in the state of São Paulo, Brazil, with programs linking healthcare information. The following variables were investigated: child's age at collection (dependent); place of collection; date of collection; and type of user (independent). Descriptive and inferential statistics were applied. RESULTS: Records of 15,652 screenings were found in the two years analyzed. In the first year analyzed, 7,955 births and 7,640 (96.0%) tests were recorded, of which 5,586 (73.1%) were undertaken with newborns between three and five days old. In the next year analyzed, 8,316 births and 8,012 (96.3%) screenings were recorded, of which 7,025 (87.6%) were undertaken with newborns in the same age group. A statistically significant association was found between the variables "child's age" and "type of user" in one year, and between the variables "child's age" and "place of collection" in both years. CONCLUSION: Early access to these tests enables the screening of diseases and referral for treatment. The present study contributes to the management of child care programs by presenting strategies linking data and actions to improve access to biological neonatal screening.

Lessons learnt from implementing change in newborn bloodspot screening processes over more than a decade: Midwives, genetics and education.

OBJECTIVE: To explore midwives' roles and education requirements in newborn bloodspot screening (NBS) for genetic conditions, as programs and supporting education evolve over time. BACKGROUND: NBS processes are evolving and will continue to evolve with new genetic and genomic technologies. Midwives have a critical role in facilitating NBS, as they are the primary healthcare professional to interact with parents at the time of collecting the bloodspot. As new consent processes and genomic technologies are incorporated into NBS, midwives need to stay up-to-date with these changes, so that parents can make an informed decision about having the test and future use of the DNA sample. RESEARCH DESIGN/SETTING: We used a cross-sectional approach to analyse midwives' knowledge and behaviour in 2005/6 and 2016, with changes in NBS processes and education introduced in 2011. FINDINGS: We found midwives' NBS knowledge improved in 8/18 areas after a 10-year period, mostly related to process changes, but there was also an increase in misconceptions regarding which conditions are screened. Areas of significant improvement were not consistently explained by participation in continuing professional development (CPD). We found midwives used official brochures and NBS collection cards to guide discussions with families. Changes to the NBS collection cards, together with the content of CPD materials, aligned with the significant improvements and deficits we observed. When considering potential changes to future maternity care that incorporates emerging genomic technologies, midwives indicated the main barrier was their lack of knowledge; the majority (60.3%) reported supervision support to attend genomics CPD. KEY CONCLUSIONS: Changes in NBS practice should be implemented through multifaceted programs that include education sessions and procedural prompts. The NBS collection card should be seen not just as a legal consent document but also as an educational tool. IMPLICATIONS FOR PRACTICE: As NBS programs evolve through the addition of conditions screened for or changes to technology or consent processes, multiple strategies should be applied to upskill midwives to ensure they can best support parents to make informed choices.

Examination of the newborn: the key skills--Part 4 the testes.

Midwives are increasingly performing the examination of the newborn. In the final of this four-part series, we consider the importance of the examination of the testes in the screening process. The significance of history taking, knowledge of risk factors and the testes examination will be explored, along with referral pathways that the National Screening Committee requires, as will be highlighted. The impact of late detection and poor referral of undescended testes on the lives of children and adults will also be considered.

Part 2: The cardiovascular system and congenital heart disease.

Midwives are increasingly performing the examination of the newborn. In the second of a four-part series, this article considers the importance of the cardiovascular examination in the screening process. The significance of history taking, knowledge of risk factors and auscultation of the heart will be explored. The necessity for early detection and treatment of congenital cardiac abnormalities, along with the prerequisite referral pathways that the Newborn infant physical examination (NIPE) requires will also be highlighted.

Examination of the newborn: the key skills. Part 3: the hips.

Midwives are increasingly performing the examination of the newborn. his article considers the importance of the examination of the hips in the screening process. The significance of history taking, knowledge of risk factors and the hip examination will be explored. The necessity for early detection and treatment of hip abnormalities, along with referral pathways that the National Screening Committee quires will be highlighted. The impact of late detection of developmental dysplasia of the hip (DDH) on the lives of families and children will also be considered.

Examination of the newborn: the key skills. Part 1. The eye.

Midwives are increasingly performing the examination of the newborn. In the first of a four-part series, this article considers the importance of the eye examination in the screening process. The significance of history taking, knowledge of risk factors and the detection of the red reflex will be explored. The necessity for early detection of retinoblastoma, congenital cataracts and glaucoma, and the prerequisite referral pathways that the Newborn infant physical examination (NIPE) requires will also be highlighted.

Expanding the role to assisted birth.

There is an identified clinical need for this programme. Staff develop knowledge and skills that enhances both quality and efficiency of care. The programme is educationally innovative, while adhering to sound educational and quality principles. Various outcomes of the assisted birth practitioner programme are being explored and evaluated as an action research study for a PhD thesis being undertaken by Jean McConville at the University of Bradford.

Newborn blood spot screening.

The U.K. Newborn Screening Programme Centre (UKNSPC) launched the first UK-wide standards and policies for newborn blood spot screening, together with a national pre-screening information leaflet for parents in December 2004. These standards are included in a document pack that has been sent recently to all heads of midwifery and local screening coordinators. This article describes the standards and policies, as well as the supporting guidelines, that are relevant to midwifery.

Neonatal examination: are midwives clinically effective?

The objective of the pilot study was to test the appropriateness of an audit tool developed to determine the clinical effectiveness of midwives carrying out neonatal examination of the newborn. The audit was undertaken by reviewing retrospective data, collected from midwives' personal clinical records of neonates and the case records of the babies they had examined. The data was gathered over a period of 18 months, and included the records of 482 term babies. The setting was a district general hospital in the east of England. The participants were all midwives who had successfully completed the neurobehavioural examination of the newborn course, and practising at a local district general hospital. The findings of the study indicate that the audit tool was sufficiently robust to test the clinical effectiveness of midwives' detection of specific congenital abnormalities. Clinical effectiveness rates were reassuringly high. The study also began to highlight the positive impact on the improvement of the service available to women. A further study has been started to compare the clinical effectiveness rates between professional groups.