Knowledge, Attitude, and Psychological Impact of Newborn Screening on Saudi Mothers

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Evaluating Knowledge, Attitude, and Psychological Impact of Newborn Screening Testing on Saudi Mothers

Ayman Al-Sulaiman, Amal Saadallah,

Objective: To assess the attitude and knowledge of the Saudi women toward newborn screening program.

Methods: A total of 425 Saudi women were enrolled in the study from different regions in Saudi Arabia completed structured questionnaire which sought their views about newborn screening services.

Results: Much progress has been made, but the infrastructure needed for

comprehensive newborn screening is not yet available. In general, there were positive attitudes toward NBS among Saudi women. However, Knowledge of the NBS benefit was limited which might influence resembling when it needed. In addition, there were lack of communication and counseling to the NBS clients.

Conclusion: There was a positive attitude toward the program and the majority agreed to apply the NBS program to all newborn in all regions. However; they raised several concerns to improve, the availability of medication and formulas, genetic counseling, education materials and awareness. All of these aspects should have a positive impact on improving and expanding the newborn screening program.

Keywords Knowledge, Atitude, Newborn screening (NBS) program,

Introduction

Newborn screening national services have expanded over the years in developed and in some developing countries. These programs screen for congenital conditions that, if not identified and treated early, could result in catastrophic health consequences, including death (Therrell, Johnson, & Williams, 2006). It is important to realize that newborn screening if intended as a national service needs to secure several bases from which it could spring forward. Otherwise, it will remain stagnant or it will proceed in a staggered, incomplete, or irregular mode void of the true benefits intended for a nation.

Newborn screening, which represents one of the major advances in child health of the past century, has been carried out in Saudi Arabia since the 1980s. Saudi Arabia is a country of about 25 million inhabitants, of whom around 4 million are expatriates, and almost all the population is Muslim. Saudi Arabia comprises five large provinces (Makkah, Medina, Riyadh, Qassem, and the Eastern Province) and seven small regions. State of World Population 2006. Available at: http://www.unfpa.org/swp/2006/english/introduction.html. Last accessed: 24 Oct. 2008.

Fant, Clark, and Kemper (2005) highlighted the importance of educating parents and healthcare professionals about newborn screening and its practices. Kemper, Fant, and Clark. (2005) declared that educating parents and physicians about newborn screening is demanding because of the rarity and involvedness of the conditions. Kemper et al thus advice that newborn screening programs must take a vigorous role in the education process. In the United Kingdom, Hargreaves, Stewart, and Oliver (2005) performed a study to access the mode and extent of informing parents. The results were as follows. Most parents were minimally informed before the test was done, most midwives did not draw attention of parents to the significance of the tests, and parents of unaffected children heard nothing more after the blood sample was taken.

Newborn screening has been implemented in a number of different disease contexts. Evaluation studies of this service mainly focus on appraisal of treatment outcomes. The social and psychological impacts of the screening program as well as attitudes towards it have been the focus of only a few studies (3, 6, 8), with no studies even done in Saudi Arabia. Because success of NBS programs depends in a big portion on parental participation and approval, this study intends to focus on those aspects in an attempt to evaluate the outcome of the NBS offered by the MOH in Saudi Arabia.

Aims of the Study

The study aims are assessing the attitudes and knowledge of the Saudi women towards the newborn screening program; and their psychological impact of the program

RESULTS

A total of 425 participants were enrolled in the study from different regions in Saudi Arabia. All participants were females and have at less one pregnancy. 175 of the mothers from the clinical genetics with affected child screened by newborn screening program for different 16 diseases and 250 pregnant women from Obstetrics and gynecology clinic. The majority 326 (76.7%) of the mothers have their delivery at the hospital and almost half of the participants 201 (47.3%) their child has been tested throw NBS program.

Demographic data of the participants, the age of the mothers range (30-35) years. Education of the mothers 234 (55.2%) completed high school education and 190 (44.8%) had completed diploma and above school education. The majority of the mother 257 (60.5%) were a house wife.

knowledge of the participants about the NBS

Participants were asked if they have a background about NBS before or after delivery. 96 (22.6%) said yes, 300 (70.6%) said no, and 29 (6.2%) were not sure. Only 266 (62.6%) of the participant think that the test is a blood sample, 360 (84.7%) think that the sample taken from both sex and only 147 (34.6%) of the participants said that the test dun for some genetic disorder.

Treatment satisfaction

100 / 175 of the mother whom their babies were tested (57%) reported that NBS treatment was offering at the right time and only 84/175 (48%) were satisfied of taken the medication at right time.

Service satisfaction

Participant's satisfaction of receiving their results from the hospital. 115 (57.2%) were satisfied. The results were sending by different medical staff to the participants. 56 (27.8) by a doctor, 29 (14.4%) by a nurse, 11 (5.5%) by coordinators, 35 (17.4%) by the phone, and 11 (5.5%) were not sure.

Requesting to repeat the sample. 161answer this question 82(50.9%) only the original sample, 27 (16.8%) two time and, 33 (20.5%) three time, and 20 more than three time (12.4%).

Refusing to re-sample by the participants. 153 answering this question 133 (87%) did not refused, 32 (20.8%) refused to re-sample

Waiting to get the result, participants were asked about the period of time to get their results. 48 (11.2%) between two to five days 55 (12%) between six to ten days 322 (75.8%) more than ten days.

The importance of the genetic counseling

401 (94.4%) of the participants think that genetic counseling is very important services before and after having the NBS.

Attitude toward NBS

387 (91.1%) of the participants support the program and think it's important to the public

Table 1: Demographic data for health care professional

Parameter

Frequency

Percent

Age range (median)

30-35 ( )

Education Level

University or below

Medical School and above

26

24

52%

48%

Region

North

South

East

West

Medal/Central

5

11

14

3

20

9.4%

20.8%

26.4%

5.7%

37.7%

MATERIALS AND METHODS

We conducted a cross-sectional survey of A total of 425 participants were enrolled in the study from different regions in Saudi Arabia. All participants were females and have at less one pregnancy. 175 of the mothers from the clinical genetics with affected child screened by newborn screening program and 250 pregnant women from Obstetrics and gynecology clinic completed a structured questionnaire which sought their views about newborn screening services.

Both the research advisory and ethical committee of King Faisal Specialist Hospital and Research Centre approved the study. The ethical committee waived the consent form. All information obtained from this study was treated with confidentiality. Semistructured questionnaires were selected as the most appropriate instrument because of its capacity to generate quantifiable data from all the studied groups. These approaches made it possible to measure what a person knew (knowledge or information), what a person liked and disliked (values and preferences), and what a person thought (attitudes and beliefs). To fulfill the research purposes and answer the research questions properly, different questionnaires were designed to identify the subject’s knowledge, attitudes, and concerns regarding NBS programs. The questionnaire was sent to different hospital around the kingdom of Saudi Arabia via email to corresponding coordinator for the newborn screening program which in his turn disrepute the questionnaire to the subject and collected back than send it to the King Faisal Specialist Hospital and Research Centre Riyadh. The questionnaires were coded and entered into the Statistical Package for the Social Sciences (SPSS) program. All data were analyzed and summarized in the form of frequencies and percentages.

DISCUSSION

The primary aim of newborn screening (NBS) is the early detection and treatment of certain disorders in order to mini­mize morbidity and mortality in early childhood. The inauguration of the hypothyroidism newborn screening program in Saudi Arabia 17 years ago to detect and prevent hypothyroidism was a milestone in the management of this group of inherited genetic disorder (11). It’s not surprising to see from our survey that most mothers were supporting NBS and think it is very important program.

Despite the fact that the Saudi mother supporting NBS still some limitation appeared in this study. According to the finding of this study it was found that only 27% were satisfied about receiving the result from the hospital. It is a crucial time between the staff and parents if mortality, morbidity, and disabilities are to be avoided. Which, the primary aim of the follow-up program is to a locate infants with abnormal screening results and facilitate timely diagnostic testing and management to communicate with parents.

Lack of knowledge means that lack of information about the nature of the test, including false positive and negative and the need for repeat testing, can lead to problems, generating anxiety in the mother if she receives a request for a repeated testing for her baby unaware that the most likely reason is due to an adequate initial sample. Larsson A, Therrell BL. Newborn screening: the role of the

obstetrician. Clin Obstet Gynecol. 2002;45:697–710; discussion 730–732 . It was found in this study that 22.6% have a back ground about the nature of the test, almost the third of the participants have no idea of which kind of sample need to be collected nor the kind of diseases need to be tested and 84.7% reported that blood sample taken from both sex. In addition, 20.8% refused to resamble. Obstetrician, pediatrician and nurses should be involved in the education of parents regarding the availability of newborn screening tests, the benefits of early detection of disorders for which screening is performed, the risks that exist for newborn infants who do not receive screening, the process of screening and follow-up.

A US study from Maryland found that mother who had greater knowledge of NBS were less likely to favor consent for screening for their babies. The study concludes that mother most having knowledge of the nature of the test were least likely to provide consent and increased parental compliance with follow-up. (Troug RD. Is "informed right of refusal" the same as "informed consent"? Journal of Clinical Ethics 1996;7: 87-89).

Given the medication at writ time and the way of dietician is the core of the NBS. It was found in this study that only 48% were satisfied with medication that been offered by the hospitals. Saying that care should be accessible, family centered, continuous, comprehensive, coordinated, compassionate, and culturally competent. American Academy of Pediatrics, Medical Home Initiatives for Children With Special Needs Project Advisory Committee. The medical home. Pediatrics. 2002;110:184–186.

Thus, the needed infrastructure is a limited available, and education of the public, genetic counseling and the medical community is almost lacking. Therefore, implementation of newborn screening in a way that will eventually lead to a true evidence-based approach will require collaboration, genetic counseling, education, adequate funding for research, and an infrastructure that provides a larger role for a central body

References

Therrell, BL, Johnson, A, & Williams, D. (2006). Status of newborn screening programs

in the United States. Pediatrics, 117; S212-S252.

State of World Population 2006. Available at: http://www.unfpa.org/swp/2006/english/introduction.html. Last accessed: 24 Oct. 2008.

Fant, K E., Clark, S J., & Kemper, A R. (2005). Completeness and complexity of

information available to parents from newborn-screening programs. Pediatrics, 115;

1268-1272.

Kemper, A R., Fant, K E., and Clark, S J. (2005, July-August) Informing parents about

newborn screening. Public Health Nursing, 22(4), 332—338.

Hargreaves, KM, Stewart, RJ, Oliver, SR. Informed choice and public health screening

for children: The case of blood spot screening. Health Expectations (2005), 161–171.

3Faulkner, L. Feuchtbaum, S. Graham, J. Bolstad, & G. Cunningham. The newborn screening education gap: What prenatal care providers do compared with what is expected. American Journal of obstetrics and Gynecology. (2006, January), 194 (1); 131-137.

6 Kim S, Lloyd-Puryear MA, Tonniges TF. Examination of the communication practices between state newborn screening programs and the medical home. Pediatrics (2003), 111(2); e120- e126.

8. [My paper]Parsons EP, King JT, Israel JA, & Bradley DM. Mothers’ accounts of screening newborn babies in Wales. Midwifery (2006), 23; 59-65.

11. Saadallah AA & Rashed, MS. Newborn screening: Experiences in the Middle East and North Africa. Journal of Inherited Metabolic Diseases (2007, August), 30(4); 482-489.

Larsson A, Therrell BL. Newborn screening: the role of the

obstetrician. Clin Obstet Gynecol. 2002;45:697–710; discussion 730–732 .

Troug RD. Is "informed right of refusal" the same as "informed consent"? Journal of Clinical Ethics 1996;7: 87-89

American Academy of Pediatrics, Medical Home Initiatives for Children With Special Needs Project Advisory Committee. The medical home. Pediatrics. 2002;110:184–186.

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