Abstract
This study was planned to determine maternal attitudes and knowledge about newborn screening. The universe of the descriptive study consisted of postpartum mothers living in the centers of three provinces in the north and east of Turkey. The sample included mothers who were older than 18 years of age, who could read and write Turkish, whose babies were in the 24th and 72nd hour after birth, and who volunteered to take part in the study. The study was completed with 407 mothers. The data were collected with the face-to-face interview method by the researchers using the “Descriptive Information Form” and the “Maternal Attitudes and Knowledge Survey about Newborn Screening.” The results showed that 40.3% of the mothers were between the ages of 25 and 30 years, 52.8% received information about newborn screening, 61.1% received this information during pregnancy (27.3% in the first trimester and 33.8% in the last trimester), and most of the information was provided by a healthcare professional (77.8%). Mothers with only one child (p = .001) and those with nuclear families (p = .024) were found to have lower maternal attitudes and knowledge about newborn screening. The study showed that the level of knowledge of Turkish mothers about newborn screening is inadequate in general. In particular, the knowledge and attitudes of mothers with nuclear families, those with one child, and those not having regular check-ups during pregnancy are inadequate. Improving mothers’ understanding of screening tests will lead to more successful screening program implementation and earlier detection and care of newborns with a disease.
Keywords: Newborns, Neonatal screening, Mothers, Knowledge and attitudes, Turkey
Introduction
Newborn screening is a public health program that was designed around 60 years ago to identify and treat issues that are not evident after birth and treat them early to protect and improve newborn health (Guthrie and Susi 1963; Powell 2019). The diseases detected by the newborn screening program are mainly congenital metabolic diseases but also include endocrinological, hematological, immunological, and cardiovascular diseases and hearing screening (El-Hattab et al. 2018; Therrell et al. 2015). These disorders, which if not diagnosed early can cause major health problems, incapacity, or even death, are difficult to identify clinically and require urgent treatment (Bailey and Zimmerman 2019).
In the first few hours or days after birth, heel blood samples are taken on filter sheets and repeated with a second sample at family health centers in the first 2 weeks of the newborn’s life (Powell 2019; Therrell et al. 2015). These procedures aim to prevent the possibility of serious health problems that may arise with early diagnosis and treatment and reduce the cost of possible health care (Powell 2019).
Mothers should have adequate knowledge and positive attitudes about newborn screening. Studies on mothers’ level of knowledge about newborn screening show that most mothers have inadequate knowledge (Franková et al. 2019; Silva et al. 2017; Kasem et al. 2022) and do not even remember whether they received information (Blom et al. 2020). Some studies suggest that even mothers who receive information from health professionals have insufficient awareness of certain aspects of newborn screening (Franková et al. 2019).
Healthcare practitioners should use their educational position to inform parents about the content of screening programs, how to implement them, and how to monitor the results (Powell 2019; Therrell et al. 2015). In most European countries, parents are informed about newborn screening (IJzebrink et al. 2021). Those who are given information regarding newborn screening have more positive views toward screening and lower levels of worry and anxiety (Lam et al. 2018; Silva et al. 2017). Mothers prefer to receive information in the prenatal period (Kasem et al. 2022; Arduini et al. 2017) and during newborn screening (Silva et al. 2017). Prenatal education is effective in improving knowledge in the postnatal period (Botkin et al. 2016).
The prevalence of consanguineous marriages, a major risk factor for genetic diseases, is about 25% in Turkey (Hacettepe University Institute of Population Studies 2022). The prevalence of autosomal recessive disorders and congenital malformations caused by consanguineous marriages is rising, posing a severe public health concern (Erdem and Tekşen 2013). Newborn screening programs, one of the critical steps to prevent this, started in Turkey in 1983 with phenylketonuria screening and became a national program in 1994. Today, comprehensive screening programs are offered free of charge by the Ministry of Health in all health centers (Fidan et al. 2022).
Parents have the right to object to the implementation of newborn screening, which is an obligatory public health program. Therefore, what needs to be done at this point is to educate parents through health professionals and involve them in the decision-making process. To this end, parents’ lack of knowledge about newborn screening should be determined. Numerous studies (Kasem et al. 2022; Coupal et al. 2020; Sieren et al. 2016) have been conducted to examine maternal attitudes and knowledge about newborn screening in countries where the screens encompassing multiple tests have been adopted comprehensively and for a long time at the national level (Therrell et al. 2015). However, to the best of our knowledge, no multicenter study has been conducted on this subject in Turkey. After all these considerations, our study aims to determine maternal attitudes and knowledge about newborn screening in Turkey and close the gap in this field. The research questions sought to be answered are as follows.
Research questions
What is the level of knowledge of newborn baby mothers about newborn screening in Turkey?
What are the attitudes of mothers in Turkey toward newborn screening?
What are the variables that affect the knowledge and attitudes of mothers of newborn babies toward newborn screening in Turkey?
Materials and methods
Design
This research was planned in a descriptive and correlational design.
Setting and sample
The study was conducted in university and state hospitals in three cities in the north and east of Turkey between June and August 2022. The population of the study consisted of mothers who met the inclusion criteria in the centers of three cities located in the north and east of Turkey, and the population size was determined in line with the data received from the relevant institutions. The sample size was calculated using the sample size formula for known populations. In the study, the smallest sample size was calculated as 381 at a 95% confidence interval using the formula n = [(N.t2.p.q) / d2.(N − 1) + t2.x.p.q]. Considering that the standard error will decrease, and the study power will increase as the sample size increases, a total of 407 patients were included in the study, and the power of the sample to represent the population was found to be 93.75%. The inclusion criteria were being older than 18 years, reading and writing Turkish, being within 24 and 72 h after delivery (Fidan et al. 2022; Loeber et al. 2021), and volunteering to participate in the study. Since it is not possible to collect data from the whole country and the researchers work in the centers where the data was collected, the research was carried out in these regions.
Data collection tools
To collect the data, the Descriptive Information Form and the Maternal Attitudes and Knowledge about Newborn Screening Survey were used.
The descriptive information form
Developed based on the literature (Arduini et al. 2017; Kasem et al. 2022; Newcomb et al. 2013) to determine the socio-demographic characteristics of the mothers, the form consists of 29 questions about the maternal age, education level, and employment status; paternal education and employment status; income; family type; place of residence; social insurance; having a consanguineous marriage; hereditary diseases in the family; pregnancy information; and mothers’ knowledge about newborn screening programs.
The maternal attitudes and knowledge about newborn screening survey
The scale was developed by Newcomb et al. (2013). Its Turkish validity and reliability were performed by Erbay (2020), and it consists of 13 items. It is a 5-point Likert-type scale with 0 = strongly agree, 1 = agree, 2 = not sure, 3 = disagree, and 4 = strongly disagree options. As the score obtained from the scale increases, the knowledge and attitudes of mothers decrease. The highest and the lowest scores that can be obtained from the scale are “0” and “65.”
Cronbach’s α value was found to be 0.79 in the original scale. In the internal consistency reliability of the subscales, Cronbach’s α value varies between 0.83 and 0.88. In the Turkish version of the scale, Cronbach’s α coefficients of the subscales range between 0.609 and 0.773. In this study, the Cronbach alpha value was 0.818 for the subscale of mothers’ attitudes toward newborn screening tests (2, 4, 5, 7, 12, 13), 0.795 for the subscale of concepts related to newborn screening tests (8, 9, 10), 0.561 for the subscale of mothers’ knowledge about newborn screening tests (1, 3, 6, 11), and 0.849 for the total scale.
Data collection
The researchers obtained the data through face-to-face interviews with mothers who volunteered to participate in the study between the 24th and 72nd hours after delivery, outside of the babies’ care, treatment, and feeding hours. Adhering to the mask, distance, and hygiene standards, the researcher collected data from each mother separately using the Descriptive Information Form and the Maternal Attitudes and Knowledge about Newborn Screening Survey, respectively. Data collection took an average of 15 min.
Statistical analysis
IBM SPSS 25.0 (Statistical Package for Social Sciences) package program was used in the evaluation of the data. Percentage values, arithmetic mean, standard deviation, median, and minimum/maximum values were used to present descriptive statistics of the data. Kolmogorov–Smirnov normality test and Q-Q plots were used to determine whether the data were normally distributed. Since the data were not normally distributed, the Mann–Whitney U test was used for two independent group comparisons, and the Kruskal–Wallis test was used for more than two independent group comparisons. p < 0.05 was accepted as statistically significant.
Ethical considerations
This study was performed in line with the principles of the Declaration of Helsinki. Ethical approval was obtained from the Clinical Research Ethics Committee of a state university (date: 21.06.2022/document ID: E-18457941-050.99-52847) and from the relevant institutions to conduct the research. All mothers who agreed to participate in the study were informed about the purpose of the study and the research process and that they could withdraw from the study at any moment without giving any reason. Informed consent was obtained from all patients for being included in the study.
Results
Descriptive characteristics of the mothers involved in the study are given in Table 1. It was found that 40.3% of the mothers were 25–30 years old, 28.8% were high school graduates, and 50.9% were housewives. Of the spouses, 31.7% were high school graduates, and 92.6% were employed. Of the mothers, 87.2% had a nuclear family, 53.3% lived in the city center, 86.5% had social insurance, 51.6% had an income equal to their expenses, 87.7% had no hereditary disease in their families, and 88.2% had no consanguinity marriage.
Table 1.
Descriptive characteristics of mothers (n = 407)
| Descriptive characteristics | n | % |
|---|---|---|
| Age | ||
| 18–24 years | 49 | 12.1 |
| 25–30 years | 164 | 40.3 |
| 31–35 years | 119 | 29.2 |
| ≥ 36 years | 75 | 18.4 |
| Education level | ||
| Primary school dropout | 14 | 3.4 |
| Primary school graduate | 50 | 12.3 |
| Secondary school graduate | 62 | 15.2 |
| High school graduate | 117 | 28.8 |
| University and above | 164 | 40.3 |
| Employment status | ||
| Employed | 200 | 49.1 |
| Unemployed | 207 | 50.9 |
| Education level of the spouse | ||
| Primary school dropout | 14 | 3.4 |
| Primary school degree | 47 | 11.5 |
| Secondary school degree | 53 | 13.1 |
| High school degree | 129 | 31.7 |
| University and above | 164 | 40.3 |
| Employment status of the spouse | ||
| Employed | 377 | 92.6 |
| Unemployed | 30 | 7.4 |
| Family type | ||
| Nuclear family | 355 | 87.2 |
| Extended family | 52 | 12.8 |
| Place of residence | ||
| City | 217 | 53.3 |
| Province | 157 | 38.6 |
| Village/town | 33 | 8.1 |
| Having a social insurance | ||
| Yes | 352 | 86.5 |
| No | 55 | 13.5 |
| Income status | ||
| Income less than expenses | 102 | 25.1 |
| Income equal to expenses | 210 | 51.6 |
| Income more than expenses | 95 | 23.3 |
| Hereditary disease in the family | ||
| Yes | 22 | 5.4 |
| No | 357 | 87.7 |
| Do not know | 28 | 6.9 |
| Parental consanguinity | ||
| Yes | 48 | 11.8 |
| No | 359 | 88.2 |
| Total | 407 | 100.0 |
Table 2 shows the characteristics of the mothers regarding their pregnancy and infant. Of the mothers, 29.0% had their first pregnancy, 37.6% had a living child, and 72.0% had a planned last pregnancy. About 55.8% had a baby girl, 95.3% had regular check-ups during pregnancy, and 16.2% were afraid of heel stick sampling. Of the mothers, 52.8% received information about newborn screening, the source of information was mostly health personnel (77.8%), and 27.3% of the mothers received this information in the first trimester of pregnancy, 33.8% in the last trimester of pregnancy, and 41.2% during the newborn screening.
Table 2.
Characteristics of mothers related to pregnancy and infant
| Characteristics | n | % |
|---|---|---|
| Number of pregnancies | ||
| 1 | 118 | 29.0 |
| 2 | 124 | 30.4 |
| 3 | 87 | 21.4 |
| ≥ 4 | 78 | 19.2 |
| Number of living children | ||
| 1 | 153 | 37.6 |
| 2 | 153 | 37.6 |
| ≥ 3 | 101 | 24.8 |
| Planning status of the last pregnancy | ||
| Yes | 293 | 72.0 |
| No | 114 | 28.0 |
| Gender of baby | ||
| Girl | 227 | 55.8 |
| Boy | 180 | 44.2 |
| Having regular check-ups during pregnancy | ||
| Yes | 388 | 95.3 |
| No | 19 | 4.7 |
| Fear of having a heel prick sampling | ||
| Yes | 66 | 16.2 |
| No | 341 | 83.8 |
| Receiving information about newborn screening | ||
| Yes | 215 | 52.8 |
| No | 192 | 47.2 |
| Source of information on newborn screening* | ||
| Healthcare worker | 168 | 77.8 |
| Internet | 71 | 32.9 |
| Family members/relatives | 44 | 20.4 |
| Friends | 34 | 15.7 |
| Family members/relatives, etc | 27 | 12.5 |
| Other (TV, radio, etc.) | 14 | 6.5 |
| Time of receiving information about newborn screening* | ||
| During screening | 89 | 41.2 |
| Last trimester | 73 | 33.8 |
| First trimester | 59 | 27.3 |
| Total | 407 | 100.0 |
*More than one answer was given
Table 3 shows the responses of the mothers to the questions related to newborn screening. About 41.3% did not know whether the newborn screening test was compulsory or not, 21.1% did not know that newborn screening programs were performed only with heel stick sampling, 29.0% did not know that one heel stick sampling is sufficient for screening, and 51.1% did not know that the baby should be fed for at least 2 days for heel stick sampling in the screening test. Regarding hearing screening in newborns, 0.5% of the mothers answered “no” and 2.9% answered “do not know.” About vision screening in newborns, 14.5% of the mothers answered no and 13.5% answered do not know. To the question of whether newborns should be screened for hip dislocation, 7.4% of the mothers answered no and 8.4% answered do not know. Of the mothers, 10.1% and 16.2% answered “yes” and “I do not know” to the statement that the tests for newborn screening are chargeable, respectively.
Table 3.
Mothers’ information about newborn screening (n = 407)
| Newborn | n | % |
|---|---|---|
| A screening test is compulsory | ||
| Yes | 190 | 46.7 |
| No | 49 | 12.0 |
| Do not know | 168 | 41.3 |
| Screening programs are conducted only with heel prick sampling | ||
| Yes | 86 | 21.1 |
| No | 121 | 29.7 |
| Do not know | 200 | 49.2 |
| One heel prick sampling is sufficient for screening | ||
| Yes | 118 | 29.0 |
| No | 129 | 31.7 |
| Do not know | 160 | 39.3 |
| The baby should be fed for at least 2 days (48 h) for heel prick sampling in the screening test | ||
| Yes | 154 | 37.8 |
| No | 45 | 11.1 |
| Do not know | 208 | 51.1 |
| Hearing screening is performed | ||
| Yes | 393 | 96.6 |
| No | 2 | 0.5 |
| Do not know | 12 | 2.9 |
| Vision screening is performed | ||
| Yes | 293 | 72.0 |
| No | 59 | 14.5 |
| Do not know | 55 | 13.5 |
| Hip dislocation is checked | ||
| Yes | 343 | 84.3 |
| No | 30 | 7.4 |
| Do not know | 34 | 8.4 |
| Screening tests are chargeable | ||
| Yes | 41 | 10.1 |
| No | 300 | 73.7 |
| Do not know | 66 | 16.2 |
The total and subscale scores of the Maternal Attitudes and Knowledge about Newborn Screening Survey total and subscale scores are given in Table 4. The mean score of the subscale of the Maternal Attitudes and Knowledge about Newborn Screening Survey was 6.74 ± 6.00, the mean score of the subscale of concepts related to newborn screening tests was 5.45 ± 5.01, the mean score of the mothers’ knowledge about newborn screening tests subscale was 5.74 ± 6.01, and the mean total score of the Maternal Attitudes and Knowledge about Newborn Screening Survey was 17.93 ± 17.00.
Table 4.
The Maternal Attitudes and Knowledge about Newborn Screening Survey total and subscale scores
| Surveys | ± SD | Med (min–max) | 25p | 50p | 75p |
|---|---|---|---|---|---|
| The maternal attitudes about newborn screening test subscale | 6.74 ± 6.00 | 6 (0–24) | 3.00 | 6.00 | 10.00 |
| The subscale of concepts related to newborn screening tests | 5.45 ± 5.01 | 5 (0–12) | 3.00 | 5.00 | 7.00 |
| The maternal knowledge about newborn screening test subscale | 5.74 ± 6.01 | 6 (0–16) | 4.00 | 6.00 | 8.00 |
| The total score of the Maternal Attitudes and Knowledge about Newborn Screening Survey | 17.93 ± 17.00 | 17 (0–52) | 11.00 | 17.00 | 24.00 |
The total and subscale scores of the Maternal Attitudes and Knowledge about Newborn Screening Survey according to some variables are shown in Table 5.
Table 5.
Total and subscale scores of the Maternal Attitudes and Knowledge about Newborn Screenings Survey according to some variables
| Scales | 1 | 2 | 3 | 4 |
|---|---|---|---|---|
| ± SD | ± SD | ± SD | ± SD | |
| Age | ||||
| 18–24 years | 7.00 ± 6.16 | 5.35 ± 3.10 | 5.27 ± 3.76 | 17.61 ± 11.05 |
| 25–30 years | 6.22 ± 5.14 | 5.37 ± 3.24 | 5.58 ± 3.02 | 17.16 ± 9.12 |
| 31–35 years | 6.84 ± 5.52 | 5.29 ± 2.82 | 5.73 ± 3.35 | 17.87 ± 9.63 |
| ≥ 36 years | 7.57 ± 4.57 | 5.95 ± 2.77 | 6.41 ± 3.05 | 19.93 ± 8.44 |
| Test* | 6.383; .094 | 3.206; .361 | 6.808; .078 | 6.860; .076 |
| Education level | ||||
| Primary school dropout/degree | 8.27 ± 4.79a | 5.97 ± 2.48 | 7.03 ± 2.80a | 21.27 ± 8.30a |
| Secondary school degree | 5.50 ± 4.55b | 5.05 ± 2.99 | 5.40 ± 3.17b | 15.95 ± 9.15b |
| High school degree | 7.11 ± 5.41ab | 5.70 ± 3.12 | 5.91 ± 3.19b | 18.73 ± 9.30ab |
| University and above | 6.36 ± 5.54ab | 5.22 ± 3.14 | 5.24 ± 3.31b | 16.82 ± 9.70ab |
| Test* | 14.143; .003 | 5.373; .146 | 20.340; .000 | 17.546; .001 |
| Employment status | ||||
| Yes | 7.84 ± 6.24 | 5.86 ± 3.33 | 5.70 ± 3.91 | 19.40 ± 11.18 |
| No | 5.69 ± 3.93 | 5.05 ± 2.64 | 5.78 ± 2.40 | 16.52 ± 7.08 |
| Test** | − 2.983; .003 | − 2.561; .010 | − 1.218; .223 | − 2.329; .020 |
| Education level of the spouse | ||||
| Primary school dropout/degree | 7.13 ± 4.81 | 5.69 ± 2.81 | 6.77 ± 3.05a | 19.59 ± 8.75 |
| Primary school degree | 6.40 ± 4.91 | 5.53 ± 3.01 | 5.68 ± 3.02b | 17.60 ± 8.56 |
| Secondary school degree | 6.08 ± 4.87 | 5.00 ± 2.84 | 5.43 ± 3.21b | 16.51 ± 8.83 |
| High school degree | 7.24 ± 5.86 | 5.69 ± 3.22 | 5.62 ± 3.32b | 18.54 ± 10.20 |
| Test* | 3.653; .301 | 6.823; .078 | 9.568; .023 | 7.889; .051 |
| Employment status of the spouse | ||||
| Yes | 6.88 ± 5.39 | 5.44 ± 3.06 | 5.68 ± 3.26 | 18.01 ± 9.60 |
| No | 5.10 ± 3.55 | 5.57 ± 2.45 | 6.43 ± 2.65 | 17.10 ± 6.90 |
| Test** | − 1.573; .116 | − .247; .805 | − 1.480; .139 | − .230; .818 |
| Family type | ||||
| Nuclear family | 6.48 ± 5.31 | 5.46 ± 3.07 | 5.61 ± 3.22 | 17.55 ± 9.38 |
| Extended family | 8.56 ± 4.90 | 5.35 ± 2.66 | 6.65 ± 3.11 | 20.56 ± 9.34 |
| Test** | − 3.196; .001 | − .231; .817 | − 2.401; .016 | − 2.252; .024 |
| Place of residence | ||||
| City | 6.70 ± 5.67 | 5.26 ± 3.14 | 5.47 ± 3.52a | 17.42 ± 10.27 |
| Province | 6.93 ± 4.96 | 5.73 ± 2.94 | 6.10 ± 2.93b | 18.76 ± 8.48 |
| Village/town | 6.18 ± 4.27 | 5.36 ± 2.56 | 5.82 ± 2.35a | 17.36 ± 7.63 |
| Test* | 1.419; .492 | 1.824; .402 | 7.867; .020 | 5.107; .078 |
| Having a social insurance | ||||
| Yes | 6.67 ± 5.41 | 5.39 ± 3.07 | 5.63 ± 3.27 | 17.69 ± 9.61 |
| No | 7.20 ± 4.50 | 5.84 ± 2.69 | 6.44 ± 2.88 | 19.47 ± 8.04 |
| Test** | − 1.363; .173 | − 1.178; .239 | − 2.185; .029 | − 2.072; .038 |
| Income status | ||||
| Income less than expenses | 6.39 ± 5.16 | 5.51 ± 2.91 | 5.48 ± 2.97 | 17.38 ± 8.03 |
| Income equal to expenses | 6.59 ± 5.23 | 5.53 ± 3.27 | 5.86 ± 3.25 | 17.98 ± 9.78 |
| Income more than expenses | 7.46 ± 5.58 | 5.21 ± 2.53 | 5.76 ± 3.45 | 18.43 ± 10.04 |
| Test* | 2.124; .346 | 1.250; .535 | 1.624; .444 | .528; .768 |
| Hereditary disease in the family | ||||
| Yes | 7.14 ± 7.74 | 4.18 ± 3.45a | 6.36 ± 4.09 | 17.68 ± 13.14 |
| No | 6.72 ± 5.17 | 5.59 ± 2.98b | 5.77 ± 3.20 | 18.08 ± 9.16 |
| Do not know | 6.71 ± 4.68 | 4.64 ± 2.98a | 4.89 ± 2.73 | 16.25 ± 9.52 |
| Test* | .446; .800 | 7.020; .030 | 1.901; .387 | 1.045; .593 |
| Parental consanguinity | ||||
| Yes | 7.40 ± 5.35 | 5.31 ± 2.75 | 6.75 ± 2.94 | 19.46 ± 9.45 |
| No | 6.66 ± 5.29 | 5.47 ± 3.06 | 5.60 ± 3.24 | 17.73 ± 9.41 |
| Test** | − .884; .377 | − .390; .696 | − 2.426; .015 | − 1.194; .232 |
| The number of pregnancies | ||||
| 1 | 6.83 ± 5.72 | 5.32 ± 3.10 | 5.48 ± 3.40a | 17.64 ± 10.18 |
| 2 | 6.45 ± 5.03 | 5.26 ± 2.95 | 5.44 ± 3.01a | 17.15 ± 8.48 |
| 3 | 6.59 ± 5.42 | 5.45 ± 3.22 | 5.72 ± 3.19a | 17.76 ± 9.93 |
| ≥ 4 | 7.26 ± 4.96 | 5.95 ± 2.78 | 6.62 ± 3.23b | 19.82 ± 8.98 |
| Test* | 2.033; .566 | 2.481; .479 | 10.753; .013 | 5.451; .142 |
| The number of living children | ||||
| 1 | 6.10 ± 5.00a | 5.03 ± 2.87a | 5.17 ± 3.22a | 16.29 ± 9.06a |
| 2 | 6.74 ± 5.56ab | 5.51 ± 3.22ab | 5.66 ± 3.09a | 17.91 ± 9.38ab |
| ≥ 3 | 7.73 ± 5.22b | 6.01 ± 2.85b | 6.72 ± 3.24b | 20.46 ± 9.56b |
| Test* | 7.407; .025 | 7.348; .025 | 17.859; .000 | 13.709; .001 |
| Planning status of the last pregnancy | ||||
| Yes | 6.65 ± 5.18 | 5.41 ± 3.01 | 5.57 ± 3.28 | 17.63 ± 9.40 |
| No | 6.98 ± 5.60 | 5.55 ± 3.07 | 6.18 ± 3.05 | 18.72 ± 9.46 |
| Test** | − .230; .818 | − .429; .668 | − 2.026; .043 | − .929; .353 |
| Gender of baby | ||||
| Girl | 6.56 ± 5.15 | 5.28 ± 3.01 | 5.83 ± 3.12 | 17.66 ± 9.24 |
| Boy | 6.98 ± 5.48 | 5.67 ± 3.03 | 5.63 ± 3.36 | 18.28 ± 9.66 |
| Test** | − .772; .440 | − 1.089; .276 | − .608; .543 | − .459; .646 |
| Having regular check-ups during pregnancy | ||||
| Yes | 6.63 ± 5.32 | 5.43 ± 3.06 | 5.68 ± 3.24 | 17.74 ± 9.50 |
| No | 9.16 ± 4.21 | 5.79 ± 2.04 | 7.00 ± 2.56 | 21.95 ± 6.65 |
| Test** | − 2.600; .009 | − .625; .532 | − 1.942; .052 | − 2.528; .011 |
| Fear of having a heel stick sampling | ||||
| Yes | 7.39 ± 5.11 | 5.33 ± 2.78 | 5.94 ± 3.31 | 18.67 ± 9.42 |
| No | 6.62 ± 5.33 | 5.47 ± 3.07 | 5.70 ± 3.21 | 17.79 ± 9.43 |
| Test** | − 1.368; .171 | − .398; .690 | − .414; .679 | − .547; .584 |
| Receiving information about newborn screenings | ||||
| Yes | 6.67 ± 6.09 | 5.39 ± 3.22 | 4.98 ± 3.64 | 17.03 ± 10.79 |
| No | 6.83 ± 4.26 | 5.52 ± 2.79 | 6.59 ± 2.42 | 18.94 ± 7.51 |
| Test** | − 1.802; .072 | − .534; .594 | − 6.373; .000 | − 3.333; .001 |
The superscripts a, b, and c show within-group differences in each group, and the measurements with the same letters are similar
1 Maternal attitudes about newborn screening test subscale, 2 Concepts about newborn screening test subscale, 3 Maternal knowledge about newborn screening test subscale, 4 Total of the Maternal Attitudes and Knowledge about Newborn Screenings Survey
*Kruskal Wallis test
**Mann-Whitney U test was used, Chi-square/z; p values are given
The attitude subscale scores of mothers with a primary school dropout/degree were higher than those of mothers with a secondary school degree, and the attitude subscale scores of mothers with three or more children were higher than those of mothers with one child, showing a statistically significant difference between the groups (p = 0.003, p = 0.025, respectively). The attitude subscale scores of the mothers who were not employed/housewives, those who had a nuclear family, and those who had regular check-ups during pregnancy were lower (p = 0.003, p = 0.001, p = 0.009, respectively).
Mothers who were employed and had no hereditary disease in their family had lower scores in the subscale of attitudes toward newborn screening tests (p = 0.010, p = 0.030, respectively). Mothers with three or more children had higher scores on the subscale of concepts related to newborn screening tests than mothers with one child (p = 0.025).
The subscale scores of the maternal knowledge about newborn screening tests were higher in mothers who were, like their spouses, primary school dropouts/graduates, who had an extended family, who lived in a province, who did not have social insurance, who had consanguinity marriage, who had four or more pregnancies, who had three or more children, whose last pregnancy was not planned, and who did not receive information about newborn screening (p = 0.000, p = 0.023, p = 0.016, p = 0.020, p = 0.029, p = 0.015, p = 0.013, p = 0.000, p = 0.043, p = 0.000, respectively).
The total scores of the Maternal Attitudes and Knowledge Survey about Newborn Screenings were higher in mothers who were primary school dropout/graduates than those who were secondary school graduates (p = 0.001). The total scores of the Maternal Attitudes and Knowledge about Newborn Screening Survey were higher in mothers who were employed, who lived in a large family, who had no social insurance, who had three or more children, who did not have regular check-ups during pregnancy, and who did not obtain information about newborn screening (p = 0.020, p = 0.024, p = 0.038, p = 0.001, p = 0.011, p = 0.001, respectively).
Discussion
This study was conducted to determine maternal attitudes and knowledge about newborn screening and the factors affecting them. It is expected that determining the maternal attitudes and knowledge about newborn screening, who are the primary caregivers of newborns, will have a favorable impact on the achievement of health promotion targets connected to newborn screening. Identifying the variables influencing mothers’ knowledge and attitudes on this issue will help the essential actions to promote the success of national efforts of these programs and will serve as evidence for international evidence comparison. No multicenter studies, to the best of our knowledge, have investigated maternal attitudes and knowledge about newborn screening, and the factors affecting them in Turkey.
In this study, it was determined that mothers needed informative support regarding newborn screening. It was determined that mothers especially needed information on the method of newborn screening, the number of scans, and the feeding criteria required for screening (Table 3). These findings in the study were found to be in strong agreement with research findings in other studies (Erbay 2020; Kasem et al. 2022; Schwan et al. 2019; Twfeeq and Abed 2016). These results should be used by healthcare professionals serving newborn mothers and integrated into healthcare practices.
In this study, it can be said that the knowledge (information about the diseases screened and the role of genetic factors, interpretation of the results of screening tests) and attitudes (necessity of screening tests, mothers’ concern about the risk of screening tests, confidence that the results of screening tests will not be shared) of mothers in Turkey about newborn screening are at a low level (Table 4). In a study evaluating the knowledge and attitudes of Saudi mothers toward newborn screening, it was determined that the knowledge of mothers was quite limited (Al-Sulaiman et al. 2015).
According to the findings, women in Turkey have little understanding and attitude toward newborn screening. The majority of mothers replied I do not know to the items in the “Maternal Knowledge and Attitudes about Newborn Screening Scale” (Table 3). In another study evaluating Saudi mothers’ knowledge and attitudes concerning newborn screening, mothers’ understanding was found to be relatively limited (Al-Sulaiman et al. 2015). In the international literature, various studies with results consistent with this research have been conducted (Arduini et al. 2017; Fitzpatrick et al. 2019; Franková et al. 2019; Kasem et al. 2022; Coupal et al. 2020) and mothers’ level of knowledge on this subject is moderate or insufficient, and they need further information.
Informing parents about newborn screening is regarded as an essential component of the screening procedure (Franková et al. 2021). According to the results of this current study, most mothers (77.8%) got information on newborn screening from health staff (nurses, midwives, etc.) (Table 2). Similarly, it is reported that the necessary information about newborn screening is provided by healthcare professionals (Araia et al. 2012; Newcomb et al. 2019; Kasem et al. 2022). In many European countries, physicians, nurses, and midwives are in charge of providing postnatal information regarding newborn screening (Franková et al. 2021). Another research that evaluated the maternal attitudes and knowledge about a newborn screening during the prenatal trimester discovered that mothers mostly received information from midwives (Gagnon and Sandall 2007). In this study, the second source of information for mothers was social media such as the internet/newspaper/radio/TV/Facebook. Franková et al. found that 22% of mothers used the internet as a source of information (Franková et al. 2019). Web pages for newborn screening have been produced on the internet, a major media tool for health information (Patterson et al. 2015). Despite this, healthcare providers may be regarded to have an essential role to play in improving mothers’ knowledge and views toward newborn screening during the prenatal and postnatal periods.
In this study, 41.2% of the mothers stated that they received information when the baby was screened and 61.1% received information in the prenatal period (27.3% in the first trimester and 33.8% in the third trimester) (Table 2). In a similar study conducted in New Zealand, 73% of mothers were most frequently informed after birth and 60% in the third trimester (Kerruish et al. 2008). In another study, almost half of the mothers reported that the most appropriate time to receive information about newborn screening was the last trimester (Kasem et al. 2022). In a study conducted with the participation of 27 countries, 37% of the participants indicated that prenatal information should be provided (Franková et al. 2021). Given that the postnatal time is a particularly sensitive phase for both infant care and the mother, this data ought to be provided during the prenatal period (Arduini et al. 2017; Fitzgerald et al. 2017). Pregnant women have more time, can assimilate information better, and receiving early education increases their satisfaction levels (Krishnan et al. 2019).
In this study, a relationship was found between mothers’ knowledge about newborn screening and the number of living children (Table 5). In a similar study conducted in Jordan, a relationship was found between the number of children and the knowledge level of mothers (Kasem et al. 2022). The significant relationship between having living children and the sub-dimensions of the scale may be attributable to the fact that the same screening procedures were applied to the previous children. In this study, a positive correlation was also found between the number of pregnancies and the knowledge status of mothers. Franková et al. emphasized that multiparous mothers had better awareness of newborn screening (Franková et al. 2019; Jatto et al. 2018), which may have resulted from the fact that multiparous mothers had more contact with health service providers.
In this study, mothers with consanguinity marriage had higher knowledge of newborn screening concepts (Table 5). In contrast to our study, no significant difference was found between the consanguinity marriage status and individuals’ knowledge and attitudes toward newborn screening in a similar study (Erbay 2020).
There are several advantages to having an extended family. In this familial setting, people learn to share and educate one another. These informative and cautious attitudes are also useful in making proper health decisions. In this study, women with extended families had higher levels of knowledge and attitudes. Some previous studies have shown that there are more inappropriate traditional practices and information in extended family models (Zeyneloğlu and Kısa 2018). Nevertheless, the family model was not analyzed in any study exploring knowledge and attitudes concerning newborn screening, and no outcomes relating to this finding were discovered. This is the study’s most remarkable result.
Conclusion
It can be said that informing mothers about newborn screening should be an integral part of the screening program. Diseases identified through the screening program require rapid and effective treatment. Families and healthcare professionals have critical roles to play in this context. It is recommended that the awareness level of mothers on this issue be enhanced and the appropriate training programs (online training modules, training booklets) be standardized in the health care system to achieve the intended success in health services focusing on newborn screening. It is recommended that these training programs be given by health professionals, who are primary caregivers, in centers providing primary health care services and in clinics where interaction with the mother is high in the postpartum period.
Author contribution
Conceptualization: Türkan Kadiroğlu, Gamzegül Altay, Gamze Akay, Çiğdem Can Bayrak; methodology: Gamzegül Altay, Gamze Akay, Çiğdem Can Bayrak; writing — original draft preparation: Gamzegül Altay, Gamze Akay; writing — review and editing: Türkan Kadiroğlu; supervision: Türkan Kadiroğlu, Gamzegül Altay.
Declarations
Ethical approval
This study was performed in line with the principles of the Declaration of Helsinki. Ethical approval was obtained from the Clinical Research Ethics Committee of a state university (date: 21.06.2022/document ID: E-18457941-050.99-52847) and from the relevant institutions to conduct the research. All mothers who agreed to participate in the study were informed about the purpose of the study and the research process and that they could withdraw from the study at any moment without giving any reason. Informed consent was obtained from all patients for being included in the study.
Conflict of interest
The authors declare no competing interests.
Footnotes
Publisher's note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
References
- Al-Sulaiman A, Kondkar AA, Saeedi MY, Saadallah A, Al-Odaib A, Abu-Amero KK. Assessment of the knowledge and attitudes of Saudi mothers towards newborn screening. BioMed Res Int. 2015;2015:718674. doi: 10.1155/2015/718674. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Araia MH, Wilson BJ, Chakraborty P, Gall K, Honeywell C, Milburn J, Ramsay T, Potter BK. Factors associated with knowledge of and satisfaction with newborn screening education: a survey of mothers. Genet Med. 2012;12:963–970. doi: 10.1038/gim.2012.87. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Arduini G, Balarin M, Silva-Grecco R, Marqui A. Knowledge of puerperal mothers about the Guthrıe test. Conhecımento Das Puérperas Sobre O Teste Do Pezınho. Rev Paul Pediatr. 2017;35(2):151–157. doi: 10.1590/1984-0462/;2017;35;2;00010. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Bailey DB, Jr, Zimmerman SJ. The future of newborn screening: why and how partnerships will be needed for success. N C Med J. 2019;80(1):28–31. doi: 10.18043/ncm.80.1.28. [DOI] [PubMed] [Google Scholar]
- Blom M, Bredius RGM, Jansen ME, et al (2020) Parents' perspectives and societal acceptance of implementation of newborn screening for scid in the netherlands. J Clin Immunol 41(1):99-108. 10.1007/s10875-020-00886-4 [DOI] [PMC free article] [PubMed]
- Botkin JR, Rothwell E, Anderson RA, Rose NC, Dolan SM, Kuppermann M, Stark LA, Goldenberg A, Wong B. Prenatal education of parents about newborn screening and residual dried blood spots: a randomized clinical trial. JAMA Pediatr. 2016;170(6):543–549. doi: 10.1001/jamapediatrics.2015.4850. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Coupal E, Hart K, Wong B, Rothwell E. Newborn screening knowledge and attitudes among midwives and out-of-hospital-birth parents. J Perinat Neonatal Nurs. 2020;34(4):357–364. doi: 10.1097/JPN.0000000000000525. [DOI] [PMC free article] [PubMed] [Google Scholar]
- El-Hattab AW, Almannai M, Sutton VR (2018) Newborn screening: History, current status, and future directions. Pediatr Clin North Am 65(2):389-405. 10.1016/j.pcl.2017.11.013 [DOI] [PubMed]
- Erbay EA (2020) Validity and reliability of Turkish maternal knowledge and attitudes scale about newborn screening (Master’s thesis). University of Health Sciences Gulhane Institute of Health, Child Health and Diseases Nursing Program, Master’s Thesis, Ankara
- Erdem Y, Tekşen F. Genetic screening services provided in Turkey. J Genet Couns. 2013;22(6):858–864. doi: 10.1007/s10897-013-9644-9. [DOI] [PubMed] [Google Scholar]
- Fidan Ç, Örün H, Alper AB, Ünver ÇN, Şahin ÖC, Uğurlu Z, Akdur R, Taruscio D. Expanded newborn bloodspot screening: developed country examples and what can be done in Turkey. Intractable Rare Dis Res. 2022;11(2):63–69. doi: 10.5582/irdr.2022.01039. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Fitzgerald C, Heery E, Conneally N, Linnane B, George S, Fitzpatrick P. An evaluation of pregnant women’s knowledge and attitudes about newborn bloodspot screening. Midwifery. 2017;45:21–27. doi: 10.1016/j.midw.2016.11.007. [DOI] [PubMed] [Google Scholar]
- Fitzpatrick P, Fitzgerald C, Somerville R, Linnane B. Parental awareness of newborn bloodspot screening in Ireland. Ir J Med Sci. 2019;188(3):921–923. doi: 10.1007/s11845-018-1949-0. [DOI] [PubMed] [Google Scholar]
- Franková V, Dohnalová A, Pešková K, Hermánková R, O’Driscoll R, Ješina P, Kožich V. Factors ınfluencing parental awareness about newborn screening. Int J Neonatal Screen. 2019;5(3):35. doi: 10.3390/ijns5030035. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Franková V, Driscoll RO, Jansen ME, et al. Regulatory landscape of providing information on newborn screening to parents across Europe. Eur J Hum Genet. 2021;29(1):67–78. doi: 10.1038/s41431-020-00716-6. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Gagnon AJ, Sandall J. Individual or group antenatal education for childbirth or parenthood, or both. Cochrane Database Syst Rev. 2007;3:CD002869. doi: 10.1002/14651858.CD002869.pub2. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Guthrie R, Susi A. A simple phenylalanine method for detecting phenylketonuria in large populations of newborn infants. Pediatrics. 1963;32:338–343. doi: 10.1542/peds.32.3.338. [DOI] [PubMed] [Google Scholar]
- Hacettepe University Institute of Population Studies (2022) [database on the Internet]. Available from: http://fs.hacettepe.edu.tr/hips/dosyalar/Ara%C5%9Ft%C4%B1rmalar%20-%20raporlar/2018%20TNSA/TNSA2018_ana_Rapor_compressed.pdf. Accessed 26 Sept 2022
- IJzebrink A, van Dijk T, Franková V, Loeber G, Kožich V, Henneman L, Jansen M. Informing parents about newborn screening: a European comparison study. Int J Neonatal Screen. 2021;7(1):13. doi: 10.3390/ijns7010013. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Jatto ME, Ogunkeyede SA, Adeyemo AA, Adeagbo K, Saiki O. Mothers’ perspectives of newborn hearing screening programme. Ghana Med J. 2018;52(3):158–162. doi: 10.4314/gmj.v52i3.9. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Kasem A, Razeq N, Abuhammad S, Alkhazali H. Mothers’ knowledge and attitudes about newborn screening in Jordan. J Community Genet. 2022;13(2):215–225. doi: 10.1007/s12687-021-00572-x. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Kerruish NJ, Webster D, Dickson N. Information and consent for newborn screening: practices and attitudes of service providers. J Med Ethics. 2008;34(9):648–652. doi: 10.1136/jme.2007.023374. [DOI] [PubMed] [Google Scholar]
- Krishnan LA, Van Hyfte S, Richards K. Newborn hearing screening: early education = more satisfied mothers. Am J Audiol. 2019;28(3):617–627. doi: 10.1044/2019_AJA-19-0007. [DOI] [PubMed] [Google Scholar]
- Lam M, Wong E, Law CW, Lee H, McPherson B. Maternal knowledge and attitudes to universal newborn hearing screening: reviewing an established program. Int J Pediatr Otorhinolaryngol. 2018;105:146–153. doi: 10.1016/j.ijporl.2017.12.021. [DOI] [PubMed] [Google Scholar]
- Loeber JG, Platis D, Zetterström RH, et al. Neonatal screening in Europe revisited: an ISNS perspective on the current state and developments since 2010. Int J Neonatal Screen. 2021;7(1):15. doi: 10.3390/ijns7010015. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Newcomb P, True B, et al. Maternal attitudes and knowledge about newborn screening. MCN. 2013;38(5):289–294. doi: 10.1097/NMC.0b013e31829a55e2. [DOI] [PubMed] [Google Scholar]
- Newcomb P, True B, Wells JN, Walsh J, Pehl S. Informing new mothers about newborn screening bloodspot repositories during postpartum hospitalization. MCN Am J Matern Child Nurs. 2019;44(6):332–337. doi: 10.1097/NMC.0000000000000562. [DOI] [PubMed] [Google Scholar]
- Patterson RP, Roedl SJ, Farrell MH. Internet searching after parents receive abnormal newborn screening results. J Commun Healthc. 2015;8(4):303–315. doi: 10.1179/1753807615Y.0000000007. [DOI] [Google Scholar]
- Powell CM. What is newborn screening? N C Med J. 2019;80(1):32–36. doi: 10.18043/ncm.80.1.32. [DOI] [PubMed] [Google Scholar]
- Schwan K, Youngblom J, Weisiger K, Kianmahd J, Waggoner R, Fanos J. Family perspectives on newborn screening for X-linked adrenoleukodystrophy in California. Int J Neonatal Screen. 2019;5(4):42. doi: 10.3390/ijns5040042. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Sieren S, Grow M, GoodSmith M, Spicer G, Deline J, Zhao Q, Lindstrom MJ, Harris AB, Rohan AM, Seroogy CM. Cross-sectional survey on newborn screening in Wisconsin Amish and Mennonite communities. J Community Health. 2016;41(2):282–288. doi: 10.1007/s10900-015-0094-1. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Silva MPC, Contim D, Ferreira LA, Marqui ABTD. Guthrie test: pregnant women’s perception during prenatal care. Rev Bras Saúde Materno Infantil. 2017;17:291–298. doi: 10.1590/1806-93042017000200005. [DOI] [Google Scholar]
- Therrell BL, Padilla CD, Loeber JG, Kneisser I, Saadallah A, Borrajo GJ, Adams J. Current status of newborn screening worldwide: 2015. Semin Perinatol. 2015;39(3):171–187. doi: 10.1053/j.semperi.2015.03.002. [DOI] [PubMed] [Google Scholar]
- Twfeeq WF, Abed LM. Knowledge and attitudes of mothers toward newborn screening test in Baghdad City. Diyala J Med. 2016;10(1):66–74. [Google Scholar]
- Zeyneloğlu S, Kısa S. Traditional practices for maternal and newborn care among Turkish postpartum women. Appl Nurs Res. 2018;39:148–153. doi: 10.1016/j.apnr.2017.11.018. [DOI] [PubMed] [Google Scholar]