University of perpetual Help System

Sto. Nino, Binan, Laguna

College of Nursing

Mother’s Knowledge and Attitude towards

Newborn Screening

Submitted by:

Castro, Nicky Joy F.

Javellana, Abigail P.

Juarez, Wilma C.

Lacuit, Arlyn T.

Landrito, Michelle O.

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 Chapter 1

The Problem and Its Setting

INTRODUCTION

Newborn Screening is a simple method to find out if your baby has congenital

metabolic disorder that may lead to retardation

and even death. It is a preventive health service that should be available to all

neonates. Newborn Screening no longer refers to the screening test itself, but

encompasses the entire element essential to all neonates to have access to a screening

system that has optimal quality and performance.DOH,(2006)

Newborn Screening is recognized internationally as an essential preventive

public health program for the identification only of disorders among newborns that can

affect their long term health detection, diagnosis and treatment for specific genetic

disorders. Metabolic infectious congenital disorders can lead to significant reduction of

death, disease and associated disabilities. Guthrie,(2000)

In the Philippines, newborn screening program has been mandated by

Presidential Proclamation No. 540 signed by President Gloria Macapagal Arroyo in

2004 in pursuant to the Early Childhood Care and Development Act (ECCD) which aims

to promote the rights of children survival, development and special protection of the

children with full recognition of the nature of childhood and its specific needs.

The advancement of newborn screening in developed countries has succeeded in

reducing morbidity and mortality associated with certain congenital disorders. Screening

within the first few days after birth allows timely medical intervention for diagnostic

patient resulting in more favorable outcomes. Through prompt and appropriate medical

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management, affected children identified though newborn screening can lead to normal

lives. There is still a lack of public awareness concerning the benefits of newborn

screening. The recently passed newborn screening act of 2004 will ensure that every

newborn in the Philippines is given the opportunity to be offered newborn screening.

This policy statement describes the role of the pediatrician, parents, hospital

administrators and government. It supports the effort of the Department of Health and

the National Institute of Health towards the nationwide implementation of newborn

screening. Diane B. Paul,(2008)

Dr. Juanita Basilio, medical officer 7 of the NCDPC said “Newborn Screening is

an essential public health strategy that enables the early detection of several inheritable

conditions which, if left untreated, could lead to mental retardation or even death.

Newborn screening can result to the early diagnosis and treatment of abnormalities

which when properly treated and connected can lead to the child’s normal growth and

development”.

Dr. Basilio Iso said “there is urgent need to create public awareness on the

important of newborn screening. Newborn screening is an integral part of routine

newborn care in many countries but in the Philippines, only about 2 percent of newborn

are properly screened for detects”. Manila bulletin,(2006)

Many of these are metabolic disorders often called "inborn errors of

metabolism" that interfere with the body's use of nutrients to maintain healthy tissues

and produce energy. Other disorders that screening can detect include problems with

hormones or the blood. In general, metabolic and other inherited disorders can hinder

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an infant's normal physical and mental development in a variety of ways. And parents

can pass along the gene for a certain disorder without even knowing that they're

carriers. With a simple blood test, doctors often can tell whether newborns have certain

conditions that could eventually cause problems. Even though these conditions are

considered rare and most babies are given a clean bill of health, early diagnosis and

proper treatment can make the difference between lifelong impairment and healthy

development.

In the early 1960s, scientist Robert Guthrie, PhD, developed a blood test that

could determine whether newborns had the metabolic disorder phenylketonuria (PKU).

People with PKU lack an enzyme needed to process the amino acid phenylalanine,

which is necessary for normal growth in kids and for normal protein use throughout life.

However, if too much phenylalanine builds up, it damages the brain tissue and can

eventually cause substantial developmental delay. If kids born with PKU are put on a

special diet right away, they can avoid the developmental delay the condition caused in

past generations and lead normal lives. Since the development of the PKU test,

researchers have developed additional blood tests that can screen newborns for other

disorders that, unless detected and treated early, can cause physical problems,

developmental delay, and in some cases, death. (Louis E. Bartoshesky, MD, MPH)

This study aims to evaluate Barangay. Sto Niňo Biňan Laguna to explore

mothers’ knowledge and attitudes towards newborn screening. Specifically, there

awareness and on how they respond with regards to newborn screening. It generally

aimed to evaluate the extent of their knowledge, attitude and the compliance of mothers

towards newborn screening.

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Theoretical/ Conceptual Framework

The Casey Model of Nursing (1988) comprises the five concepts of child, family,

health, environment and the nurse. The philosophy behind the model is that the best

people to care for the child is the family with the help from various professional staff.

There should therefore be a partnership between parents and caregivers.

In connection to the study, Philosophy represents the unity and relationship between

the nurse and the family to achieve the best health condition of the child as possible.

This includes the responsibility of the nurses to undergo the child into Newborn

Screening to evaluate the possible abnormalities that may occur to the child.

The theory of Human Becoming by Parse (1995) emphasizes free choice of personal

meaning in relating value priorities, co-creating of rhythmical patterns in exchange with

the environment. Parse believed that each choice opens certain opportunities while

closing others since each individual makes his or her choices, the role of the nurse is

that of guidance not decision maker.

In relation to the study the nurse serve as a guide for women in gathering correct

information on newborn screening and during their decision making concerning the

screening of their child.

Using both theories, a nurse can utilize the philosophy, purpose and practice of

nursing while serving as a guide to the mothers in order for them to make the right

decision that are advantageous to their children when it comes to the benefits of

newborn screening test.

Operational Framework
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This study deals with the level extent of knowledge and attitudes towards newborn

screening. The operational model shows the significant relationship of independent and

dependent.

The independent variable is the level of mother’s knowledge on newborn screening.

The researchers wanted to evaluate the extent of knowledge of each mother and other

member of the family regarding on the importance of newborn screening and what it is

all about.

The dependent variable is the attitude of mother’s towards the newborn screening.

Newborn screening is an organized process of identifying medical conditions in

newborn babies that, if untreated, can cause developmental delays, serious illness, or

even death. Generally, these conditions cause no symptoms in the first days of life.

Screening programs have therefore been developed to identify and treat babies with

these conditions before permanent damage occurs.

Mothers demographic Profile

Age
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Educational Attainment
Extent of knowledge about Attitude of mothers about
newborn screening Newborn Screening

Ensure
women to
have
adequate
time to
consider
screening
Diagram of the extent of information knowledge, practices in

the importance of newborn screening

among selected respondents of Barangay Sto. Niňo Biňan, Laguna.

Statement of the Problem

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 The purpose of this study was to evaluate the knowledge and attitude of mothers

on newborn screening in the selected respondents of Barangay Sto.Ni ňo Biňan

Laguna.

Specifically, the study will seek to answer the following questions:

1. What is the demographic profile of the mothers in terms of the ff:

1.1 Age

1.2 Educational attainment

2. What is the knowledge of mothers on newborn screening?

3. What is the attitude towards newborn screening?

4. Is there a significant relationship between the knowledge of the mother and

their attitude towards newborn screening?

Statement of the Hypothesis

There is no significant relationship between the knowledge of the mothers and their

attitude towards newborn screening.

Assumption of the Study

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The researchers assume that:

1. Newborn screening is a must for babies after giving birth.

2. Providing knowledge to the parents will let them ensure that they recognize their

responsibilities in promoting their child’s right to health and full development

3. Newborn screening is critical for the baby to receive treatment that may be life

saving.

Scope and Delimitation of the Study

The scope of the study is all about the knowledge and attitudes of the mothers

about newborn screening. The researcher chooses the Brgy. Sto Ni ňo, Biňan, Laguna

as their representative respondents.

Their primary reason is to evaluate the mother’s knowledge and their attitudes

towards newborn screening and the educational program provided to them. The

researcher s will get only 50 respondents so that the result will be easy to measure.

Significance of the Study

Through strong advocacy and good communication, the attitude and knowledge of the

public especially the mothers will help them understand screening advantages and

importance in promoting wellness.

Study will benefit the following:

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Selected Respondents. One of the beneficiary of the study for they will learn the

importance newborn screening, the advantages and the kind of attitude they need to

have.

Siblings of the selected Respondent especially the newborn and the infants. They

can prevent diseases if they can have newborn screening and with the help of the

extent of knowledge of their mothers.

Health Care Team. This will provide an inference that they can utilize to produce

awareness on the importance of newborn screening in a community setting with health

education dissemination. It can facilitate in an intervention to increase health education

program about newborn screening in amending the process if information giving about

specific information of the said program.

Nursing Profession. This will provide them an initial assessment on the knowledge

and attitude of mothers towards newborn screening which can be a basis of the

promotion of health among children in the community through health teaching.

Nurse Education. This may introduce a way of helping nursing student in nurturing

their chosen career by making them see the real and practical site where nursing

service is very much needed. This can also develop their efficiency as nurse educator in

formulating tools for health teaching.

Nursing Student. They will benefit from the study because development of health

education program can build their confidence in facing people in the community through

information giving. This can also enhance their inquiring on the important of screening in

the promotion of health.

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Future Researchers. This study will serve as reference for future studies using the

same or different variables.

Definition of Terms

The following terms and concepts were used and defined within the context of the

study.

Newborn. Means a child from the time of complete delivery to 30 days old.

Newborn screening.  is a simple procedure to find out if your baby has a congenital

metabolic disorder that may lead to mental retardation and even death if left untreated.

Evaluation. Process of evaluating the extent of respondent’s idea in newborn screening

Parent education. It refers to the various means of providing parents or legal

guardian’s information about newborn screening.

Health Care Provider. The term means physicians, nurses, midwives, nursing aides

and traditional birth attendants.

Attitude. Refers to the mental and emotional position or feeling of the respondent with

regards to their compliance towards newborn screening

Knowledge. Is an accumulated fact, truth, principle, information and understanding

regarding newborn screening.

CHAPTER 2

Review of Related Literature and Studies

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 Through the review of related literature and related studies, researcher was

provided the knowledge and background on the topic or subject being studied. Reading

these literature and studies will help the researchers determine what has been done in

the past and will give the researchers pointers on how to develop or make some

progress on the status of the study.

State of the Art

The information that was gathered contributes knowledge and understanding not only of

the researchers but as well as the respondents were taken into consideration. Similar studies

were derived from thesis, books, journals, magazines, and internet that were utilized to explore

generally accepted views, principles and theories which could either be supportive or

contraindicating to researcher’s data.

Related Literature

Newborn screening is an organized process of identifying medical conditions in

newborn babies that, if untreated, can cause developmental delays, serious illness, or

even death. Generally, these conditions cause no symptoms in the first days of life.

Screening programs have therefore been developed to identify and treat babies with

these conditions before permanent damage occurs. In the United States, these

programs are usually mandated by state public health laws. In 1964, phenylketonuria

(PKU) became the first disorder subject to generalized newborn screening.

Phenylketonuria causes mental retardation due to the baby's inability to metabolize the

amino acid phenylalanine, which then accumulates in the blood. It can be successfully

treated with a diet low in phenylalanine. PKU is diagnosed through a blood sample.

Since 1964, technological advances allow screening for many more diseases on the

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same blood sample, including adrenal hyperplasia, biotinidase deficiency, blood

sample, including cystic fibrosis, galactosemia, homogystinuria, hypothyroidism, maple

syrup urine disease, and sickle cell disease. Abnormal results are reported to the baby's

doctor with recommendations for further confirmatory testing and treatment. Screening

for hearing impairment was implemented in the 1970s. Initially, only known risk factors,

such as a family history, prompted a hearing test. In the 1990s, universal newborn

hearing screening began to be implemented in the United States and in Europe.

Children with moderate to severe hearing impairment benefit by diagnosis and

treatment early in life to maximize speech and language development. (John H.

Vollman, 2002)

Many public health departments promote newborn screening through a routine

blood and hearing test performed at the hospital after birth to detect rare conditions.

Although conditions like galactosemia, phenylketonuria (PKU), sickle cell anemia,

adrenal hyperplasia, Cystic Fibrosis, and hearing loss are rare, they can all significantly

impact the life of affected newborns and their families. Some of these and other

conditions commonly screened for in heel stick tests can even be fatal. Many of the

conditions that state health departments often mandate in screening panels can also be

treated and improved if identified early, potentially saving lives and millions of health

care dollars in later treatment procedures or emergency visits that could be avoided by

early detection. (Katherine Brind'Amour, 2009)

DOH ensure that Newborn Screening Centers are strategically located in order to be

accessible to the relevant public and provide services that comply with the standards

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approved by the Committee upon the recommendation of the NIH. No Newborn

Screening Center shall be allowed to operate unless it has been duly accredited by the

DOH based on the standards set forth by the Committee. At a minimum, every Newborn

Screening Center shall: (i) have a certified laboratory performing all tests included in the

newborn screening program, (ii) have a recall/follow up programs for infants found

positive for any and all of the heritable conditions; (iii) be supervised and staffed by

trained personnel who have been duly qualified by the NIH; and (iv) submit to periodic

announced or unannounced inspections by the Reference Center in order to evaluate

and ensure quality Newborn Screening Center performance.

Newborn screening for a metabolic disorder could lead to false positives, adding

stress to parents, costing money and possibly subjecting a baby to unnecessary follow-

up treatment and dietary restrictions. But the benefits of diagnosing these children early

and preventing the risk of mental retardation, disability or death outweigh the costs of a

false positive. Published studies of expanded newborn screening in a U.S. setting have

resulted in favorable cost-effective ratios for screening for this illness but did not include

primary data for quality of life effects for a false positive screen. Results show that

newborn screening remains cost-effective after accounting for the measured loss in

quality of life associated with a false positive screen." (Lisa A. Prosser,Ph. D.)

Related Studies

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 When examining the interrelation between psychosocial factor and preventive

health behavior, it is important to recognize the knowledge is of paramount importance

in the formulation of perception which is commonly referred to as belief and attitude in

the behavioral literature. The health belief model related largely to the cognitive factors

predisposing a person to a health behavior, concluding with a belief in ones self efficacy

for the behavior. The model leaves much still to be explained by factors enabling and

reinforcing one’s behavior and these factors become increasingly important when the

model is used to explain and predict more complex lifestyle behavior that needs to be

maintained over a lifetime.

In the study of Gennaccaro M, Waisbren SE, Marsden D. (2005), The knowledge

gap in expanded newborn screening: survey results from pediatricians in

Massachusetts. Massachusetts currently offers an optional expanded newborn

screening program that tests for 20 biochemical genetic disorders in addition to the

mandated newborn screening tests, including phenylketonuria (PKU) and nine other

biochemical genetic disorders. We conducted a mail survey of 550 pediatricians listed in

the 2000 Massachusetts Healthcare Directory to determine pediatricians' preparedness

in discussing expanded newborn screening and its results with families, and to

determine in what specific format physicians in Massachusetts would prefer to receive

educational materials and updates. Of surveys mailed, 35% (190/550) were returned

within the allotted 3 weeks: 25 pediatricians (14%) were unaware of expanded newborn

screening; 78 respondents (42%) indicated feeling less than prepared talking about test

results with families; 100 pediatricians (54%) indicated a lack of information about

metabolic disorders; 134 (73%) preferred information sent in postal mailings, 62 (34%)

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preferred grand rounds, 60 (33%) preferred educational seminars, and 58 (32%)

preferred websites. Other formats receiving preferences of less than 30% included e-

mail (27%), phone calls (8%), video (6%), and distance learning (1%). Pediatricians are

ill-prepared for expanded newborn screening for biochemical genetic disorders. To

address this problem, pediatricians in Massachusetts indicated a preference for

unsolicited periodic mailings including short reviews and brochures.

Effect of Informed Parental Consent on Mothers' Knowledge of Newborn

Screening (Holtzman, Faden and Horn, 1983), for them to determine whether

knowledge was improved as a result of obtaining informed consent from parents for

newborn screening of their infants for phenylketonuria (PKU) and other hereditary

metabolic disorders, new mothers in seven Maryland hospitals were interviewed either

before receiving a standard disclosure (n = 210) or after giving consent (n = 418). The

mean knowledge score of the women interviewed after giving consent was significantly

higher (P < .001). Receiving the disclosure was a more powerful predictor of knowledge

score, accounting for 40% of the variance, than demographic factors, which accounted

for 9%. Women whose consent was obtained just prior to discharge tended to have

lower knowledge scores than women whose consent was obtained earlier (P = .03).

Women with higher knowledge scores were somewhat less likely to favor consent than

women with lower scores. Although consent may not be appropriate for some low-risk

procedures, informing parents can be easily and inexpensively accomplished.

Davis TC, Humiston SG, Arnold CL, et al.,(2007), they had a research on how

knowledgeable are parents of newborns and their healthcare providers about newborn

screening. What are their impressions, as well as those of newborn screening

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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 pediatricians,

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

categorized.

The term attitude is widely used by the public to denote a psychological state that

predisposes a person to act favorably or unfavorably to an event or situation. This

viewpoint favors defining attitude as having several component and restricted definition.

(Allport, 1954) defined attitude as a mental and neural state of readiness, organized

through experience, exerting a directive or dynamic influence upon the individuals

response to all objects and situation with which it is related.(p.810)

(Eagly and Chaiken, 1993), define attitude as a psychological tendency that is

expressed by evaluating a particular entity with some degree of favor or disfavor.(p.1)

Although formal definition of attitude vary, most contemporary social psychologist seen

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to agree that the characteristics attribute of attitude is its evaluation (pro-con, positive-

negative) dimension (Ajzen, 1993, Ajzen 1989, Fishbein and Ajzen, 1975).

The Pediatricians' Attitudes Toward Expanding Newborn Screening (Acharya,MD,

Ackerman,AB, Ross MD, 2005), Traditional population screening focuses on conditions

for which early treatment prevents severe morbidity and mortality. The classic example

in pediatrics is newborn screening for phenylketonuria, which began in the 1960s. In

1968, Wilson and Jungner delineated 10 criteria that would justify population screening.

These criteria have been reaffirmed by many newborn screening task forces as the

standard for adding conditions to newborn screening programs. Today, however, some

newborn screening programs are expanding to include conditions that may not meet all

of the traditional screening criteria. Little is known about pediatricians' attitudes toward

expanding screening. We examine the attitudes of pediatricians and pediatric

subspecialists toward screening for cystic fibrosis (CF), Duchenne muscular dystrophy

(DMD), fragile X, and type 1 diabetes. METHODS: A cross-sectional survey was

conducted of 600 pediatricians, including those who are members of the section of

genetics, endocrinology, pulmonology, and neurology of the American Academy of

Pediatrics. For each condition, pediatricians were queried about (1) testing high-risk

infants, (2) newborn screening, and (3) population screening or testing beyond the

newborn period. Demographic data were also collected. RESULTS: A total of 232 (43%)

of 537 eligible pediatricians returned surveys. More than 75% support testing high-risk

infants for all conditions except type 1 diabetes. CF was the only condition for which

>50% supported newborn screening. Newborn screening was preferred over screening

older infants for all conditions except fragile X. Subspecialty affiliation did not have a

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significant impact with respect to attitudes about testing high-risk children, newborn

screening, or screening beyond infancy. We analyzed the data by the number of

patients with the queried condition under the physician's care and by the number of

affected family members. Neither aspect was significant. We also analyzed the data by

gender, by year of residency graduation, and by geographic location. None of these

factors revealed significant differences in responses. For each condition, 8% to 41% of

physicians would personally choose to test their own infant. We found that physicians'

opinion about what they would want for their own children correlated with their attitude

about population newborn screening. Those who would personally choose testing of

their own infants were highly likely to support newborn screening for CF (98%), DMD

(94%), and fragile X (98%), but only 78% of those who would personally opt for newborn

screening of type 1 diabetes would also endorse population-based screening. This was

statistically significant for each condition. Those who would choose not to test their own

infants were significantly less likely to support newborn screening of the general

population. One third of those who did not want to test their own newborns for CF

supported population screening, whereas only one fifth supported DMD and fragile X

population screening. For type 1 diabetes, 98% of those who would not personally

choose newborn testing did not want it offered as a population screening program.

CONCLUSION: Most physicians support diagnostic genetic testing of high-risk children

but are less supportive of expanding newborn screening, particularly for conditions that

do not meet the Wilson and Jungner criteria. Willingness to expand newborn screening

does not correlate with professional characteristics but rather with personal interest in

testing of their own children.

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Pediatricians' Attitudes about Screening Newborns for Infectious Diseases (Schittek,

Koopman and Ross, 2010), the U.S. Health Resources and Services Administration

(HRSA) commissioned the American College of Medical Genetics (ACMG) to

recommend a uniform newborn screening (NBS) panel. The ACMG sent out a survey to

stakeholders to evaluate 80 metabolic and genetic conditions and 3 infectious diseases

(Human Immunodeficiency Virus (HIV), Toxoplasmosis (Toxo), and Cytomegalovirus

(CMV)). In March 2005, the ACMG/HRSA report recommended a panel including 29

metabolic and genetic conditions and 25 secondary targets. This panel was endorsed

by the newly-formed U.S. Advisory Committee on Heritable Disorders and Genetic

Diseases in Newborns and Children (Advisory Committee). Decisions about infectious

diseases were deferred by the ACMG/HRSA committee due to limited survey responses

and lack of expertise of surveyed stakeholders and committee members. The Advisory

Committee has not pursued these conditions further. In this manuscript, we examine the

attitudes of U.S. pediatricians toward targeted and universal screening of newborns for

these three infectious diseases. Members of the American Academy of Pediatrics (AAP)

sections of infectious disease (n = 150) and community pediatrics (n = 150) plus 13

contributors to the AAP Red Book were surveyed by email or fax. Of eligible

pediatricians, 113 of 297 (38%) returned surveys. Seventy-four percent supported either

targeted or universal NBS for HIV, 57% for Toxo, but only 42% for CMV. The majority of

respondents support screening newborns for HIV and Toxo. The Advisory Committee

ought to solicit a systematic evaluation of these conditions to determine whether they

should be included in the uniform panel. As a conclusion, These are the first data about

the perceived utility of testing and screening infants for HIV, Toxo, and CMV in the

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United States by two groups of pediatric providers. Both community pediatricians and

infectious disease physicians are highly supportive of population screening for HIV and

more modestly supportive of screening for Toxo, but reject population screening for

CMV given current testing methods and treatments. These findings signal the need for

the Advisory Committee to evaluate infectious diseases for inclusion into the uniform

panel.

In the study on developing a conjoint analysis survey of parenteral attitudes

regarding voluntary newborn screening ( Whitehead,Brown and Layton,2010), Newborn

screening for genetic conditions is conducted in all 50 states, but parent’s opinions of

such screening are largely unknown. As newborn screening has expanded from a few

relatively common conditions requiring early treatment to a broader spectrum of

conditions with uncertain prognosis, it is important to understand parent’s views. Stated

preference surveys provide quantifiable data on parent preferences about features of

newborn screening tests, that economic value of testing and the effect of a test’s

features on its probable uptake and value.

They conducted formative research and developed a stated preference survey

on parent’s preferences regarding voluntary newborn screening. We reviewed the

literature on parent’s attitudes towards newborn screening and factors related to those

attitudes and developed a list of condition and test attributes. They narrowed the list by

expert review and conducted focus groups with parents of infants to determine if they

understood the attributes and to see which attributes parent’s viewed as relevant.

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 They found that some parent’s struggled with the probability-based attributes.

The most relevant attributes were developmental disability, physical disability,

incidence, recurrence, lifespan, sensitivity and cost. The survey developed from this

study could provide data for economic evaluation, test prioritization and educational

material development.

RELATIONSHIP OF KNOWLEDGE AND ATTITUDE

In the Elaboration Likelihood Model, or ELM (Petty and Cacioppo, 1986), cognitive

processing is the central route and affective processing, is often associated with the

peripheral route. The central route pertains to an elaborate cognitive processing of

information while the peripheral route relies on cues or feelings.

The ELM suggest that true attitude change only happens through the central

processing route that incorporate both cognitive and affective component as opposed to

the more heuristics-based peripheral route. This suggests that motivation through

emotion alone will not result in an attitude change.

(Lang CW, Stark AP, Acharya K and Ross LF, 2009) Maternal knowledge and

attitudes about newborn screening for sickle cell disease and cystic fibrosis in where

Illinois introduced mandatory newborn screening (NBS) for sickle cell disease (SCD) in

1989 and for cystic fibrosis (CF) in 2008. We examined maternal understanding of NBS

for SCD and CF, and their knowledge of the genetics, symptoms, and treatments of

both conditions. Our methods consisted of conducting interviews of inpatient post-

partum women (>18 years and English speaking). Our results showed that of the 388

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eligible participants, 34 self-identified as sickle cell carriers, 1 with SCD and 1 as a CF

carrier. Almost 3/4 were African American (282/387). Although all but 5 women had

prenatal care, only 35% (133/378) recalled their prenatal care provider mentioning NBS,

and only 56% (217/388) of participants recalled nursery staff mentioning NBS. There

was more self-reported familiarity with SCD (3.32/5) than CF (1.97/5, P < 0.001). Over

2/3 (260/388) of participants could not answer CF knowledge questions because they

had never heard of CF. Among those who had heard of the conditions, mean

knowledge scores were 66% for SCD (n = 372) and 63% for CF (n = 128). Bivariate

analysis identified education, age, race, marital status, and insurance status as

statistically significant. After linear regression education remained significant for both

conditions. We conclude that in a sample of predominantly African American post-

partum women, we found poor understanding of NBS, greater familiarity with SCD, and

significant knowledge gaps for both SCD and CF. There are many missed educational

opportunities for educating parents about NBS and specific conditions included in NBS

panels in both the obstetric clinics and the nursery.

Maternal views on infant hearing loss in a developing country (Olusanya, LUxon and

Wirz, 2006), is concern on Parental support for infant hearing loss. OBJECTIVE: To

elicit the views of mothers and would-be mothers in order to ascertain their knowledge

on infant hearing loss and their attitudes towards infant hearing screening. METHODS:

A structured questionnaire consisting of 15 questions was administered to 101 mothers

(mean age 31.6 ± 7.3 years, range: 21–55 years) attending two community hospitals in

Lagos, Nigeria. The responses were evaluated by descriptive statistics, factor analysis

of the principal components and multiple regression analysis. The reliability of the two

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main domains (knowledge and attitude) was tested for internal consistency by

Cronbach's alpha coefficient. RESULTS: Maternal knowledge was highest for measles

(73%; mean score 2.54) and ear discharge (73%; mean score 2.51) but low for birth

asphyxia (37%; mean score 1.90), traditional medicine (42%; mean score 2.03) and

jaundice (47%; mean score 2.09) as causes of hearing loss. Attitude towards neonatal

screening was positive in majority of mothers (92%; mean score 2.84) and there was a

high acceptance of hearing aids as an early intervention option (84%; mean score 2.70).

Five factors (eigenvalue > 1) were extracted after principal component analysis with the

attitude variables loading highly and exclusively on one factor. Age was the only

demographic variable that was associated with a domain (knowledge) after multiple

regression analysis. The component scales for the two domains were highly internally

consistent (alpha coefficients of 0.84 and 0.83). CONCLUSION: Contrary to the

concerns often expressed about parental support for infant hearing screening programs

in developing countries, this study suggests that current parental knowledge and

attitude favor early detection and intervention of childhood hearing impairment.

Moeller PhD, White PhD and Shisler MS, (2006), Primary Care Physicians'

Knowledge, Attitudes, and Practices Related to Newborn Hearing Screening in where

the Universal newborn hearing screening focuses on providing the earliest possible

diagnosis for infants with permanent hearing loss. The goal is to prevent or minimize the

consequences of sensorineural hearing loss on speech and language development

through timely and effective diagnosis and interventions. Pediatricians are in a key

position to educate families about the importance of follow-up, if they are well informed.

The objective of this study was to survey the attitudes, practices, and knowledge of

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primary care physicians in relation to newborn hearing screening and follow-up.

METHODS. A survey was created on the basis of input from focus groups with primary

care physicians. Surveys (n = 12211) were sent to primary care physicians in 21 states

and 1 territory (Puerto Rico) regarding practices, knowledge, and attitudes related to

universal newborn hearing screening. The response rate was 16.1% (n = 1968).

RESULTS. Physicians reported a high level of support for universal newborn hearing

screening; 81.6% judged it to be very important to screen all newborns for hearing loss

at birth. Although physicians reported confidence in talking with parents about screening

results, they indicated a lack of confidence in discussing follow-up procedures and

intervention needs. Several important gaps in knowledge were identified, and these

represent priorities for education, as based on their relevance to medical management

and parent support. Physicians expressed a strong preference for action-oriented

resources. CONCLUSION. Pediatricians and other primary care providers recognize the

benefits of early detection and intervention for permanent hearing loss in infants. The

current system of newborn hearing screening can be enhanced by strengthening the

medical community's involvement in the process from screening to follow-up. Physician

roles will be supported through the provision of action-oriented resources that educate

parents about the importance of follow-up and that prepare professionals to incorporate

appropriate surveillance procedures in daily practice.

Gary Hoffman (2003), screening mass population for congenital disorders has

proven to be a very successful and well accepted public health activity. Most babies

born with one of the screened for disorders appear very normal at birth and don’t show

clinical symptoms for a few weeks or months after birth. Even when clinical symptoms

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are obvious, the diagnosis is often difficult due to similarities with other childhood

medical conditions and is often too late to reverse the clinical damage that has already

occurred. Therefore, for maximum benefit to the infant, detection must occur before

clinical symptoms are evident. Children affected with these disorders, without early

detection and treatment, usually depend upon other state funded programs for long

term care.

DOH (2005), The Department of Health (DOH) will intensify efforts to improve

newborn screening (NBS) services in the country, saying nothing much has improved

since the passage of the Newborn Screening Act in 2004. DOH records showed that as

of December 2007, only 15.6 percent or 234,000 of the 1.5 million babies born annually

have undergone NBS procedures. Dr. Yolanda Oliveros, director of the DOH’s National

Center for Disease Prevention and Control, said that NBS is important because it could

detect and help stop debilitating illnesses of infants. “Newborn screening is a very

simple procedure that can save the lives of the newborn. It will ensure that newborns

will grow healthy and normally. We hope that parents would allow their infants to go

through this procedure,” she said.  Oliveros noted that NBS procedure costs only P550.

In NBS, blood is extracted from an infant’s foot to test for five illnesses – congenital

hypothyrodism (CH), congenital adrenal hyperplasia (CAH), galactosemia (GAL),

phenylketonuria (PKU), glucose-6-phosphate dehydrogenase deficiency (G6PD Def).

CH is caused by lack or absence of thyroid hormone which is essential for the growth of

the brain and body, while CAH is an endocrine disorder that causes severe salt loss,

dehydration and abnormally high levels of male sex hormones in both boys and girls.

GAL, on the other hand, prevents babies from processing galactose or the sugar in the

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milk, leading to liver and brain damage and cataracts. Babies with PKU experience

excessive accumulation of phenylalanine in the blood, causing brain damage. Those

with G6PD Def suffer hemolytic anemia due to lack of the G6PD enzyme. The

procedure is ideally done on the second or third day after a child is born but it can also

be performed 24 hours from birth. Some disorders are not detected if the test is done

earlier. Oliveros noted that prior to 2005, NBS coverage was a dismal three to five

percent. This improved two years later when the DOH beefed up its information

campaign about the program and after the Philippine Health Insurance Corp. began

including the procedure in its benefit packages. The DOH has made NBS a “mandatory

licensing requirement for all hospitals.” Last Feb. 1, Health Secretary Francisco Duque

III reiterated this requirement in a memorandum to all DOH officials and hospital

directors.

Gaps to be bridged by the Present Study

The studies presented above are relevant to the present study. It has almost same

issues with regards to the awareness, their attitudes and knowledge about newborn

screening. The professional mentioned in the above studies has differ and come up with

the same idea on the said topic. A past interview was made orally and in written and it

ended up by the same reasons and idea of the respondent involve in the study. Majority

of the respondent don’t have enough knowledge in the importance of newborn

screening and the diseases that may occur if newborn screening is not applied.

Synthesis of the Art

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 Gary Hoffman (2003), screening mass population for congenital disorders has

proven to be a very successful and well accepted public health activity. Most babies

born with one of the screened for disorders appear very normal at birth and don’t show

clinical symptoms for a few weeks or months after birth. Therefore, for maximum benefit

to the infant, detection must occur before clinical symptoms are evident. Children

affected with these disorders, without early detection and treatment, usually depend

upon other state funded programs for long term care.

DOH based on the standards set forth by the Committee. At a minimum, every

Newborn Screening Center shall: (i) have a certified laboratory performing all tests

included in the newborn screening program, (ii) have a recall/follow up programs for

infants found positive for any and all of the heritable conditions; (iii) be supervised and

staffed by trained personnel who have been duly qualified by the NIH; and (iv) submit to

periodic announced or unannounced inspections by the Reference Center in order to

evaluate and ensure quality Newborn Screening Center performance.

Carlie Driscoll, PhD, Ensuring optimal health for newborns is a concern shared by a

whole host of medical and allied health professionals. Clinicians, researchers, and

policymakers from a diverse range of specialties regularly engage in collaborative

practice in the first stage of attaining this goal; in the early detection of newborn

diseases and disorders. In order to provide the highest quality of service, the

Audiologist, for example, must not only be well versed in hearing screening systems,

but also in genetic screening, as the new frontier of screening brings an amalgamation

of these previously distinct systems.

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Newborn screening for a metabolic disorder could lead to false positives, adding stress

to parents, costing money and possibly subjecting a baby to unnecessary follow-up

treatment and dietary restrictions. But the benefits of diagnosing these children early

and preventing the risk of mental retardation, disability or death outweigh the costs of a

false positive. (Lisa A. Prosser,Ph. D.)

As a member of the health team, it is important for nurses to now the stares of

conformity regarding the newborn screening program. This will aim to determine the

campaign method and attitude on newborn screening among mothers.

CHAPTER 3

RESEARCH METHODOLOGY

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This chapter represents the type of method used in the research, the respondents and

sampling method and the research instruments that have been used. It also show the

type of statistical treatment that applied in order to analyze and interpret the data

gathered information.

RESEARCH DESIGN

The descriptive method was used in his study. This is the most appropriate method in

inquiry about the present status and condition of a particular phenomenon. Concepts

and procedure of general description, analysis and classification are discussed and

illustrated in considerable detail. The researcher will utilize descriptive type of research

in order to determine the knowledge and attitude of the mothers towards newborn

screening.

SOURCE OF DATA

The studies were composed of 50 selected mother in Sto. Nino, Binan, Laguna. Books,

Journals and Internet were secondary source used to gather some information that

were included in this research. Questionnaire are use as the research tool to generate

empirical data in answering the research problem. The researcher conducts a survey in

Sto. Nino, Binan, Laguna for the researcher to process data gathering.

POPULATION OF THE STUDY

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The locale of the study is in Barangay Sto. Ni ňo Biňan, Laguna which is suited for our

respondents. The representative respondents came from family lived in urban areas.

Ages ranged 20-30 years with the mean age of the sample being 25 years. The number

of children the women had ranged from one child to six with the averaged being four

children.

AGE FREQUENCY PERCENTAGE

20-22 13 26%
22-24 14 28%
24-26 9 18%
26-28 8 16%
28-30 6 12%
TOTAL 50 100%
EDUCATIONAL FREQUENCY PERCENTAGE
ATTAINMENT

COLLEGE 12 24%
HIGH SCHOOL 35 70%
ELEMENTARY 3 6%
TOTAL 50 100%

The majority of the women stated that they had heard of newborn screening prior to

receiving the survey. They reported receiving information from a variety of sources.

Awareness of newborn screening:

Sources of information Most popular sources reported

Midwife 16
Previous pregnancy 8

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 From pamphlet 2
Family or friends 23
Internet 1
Total 50

SAMPLING TECHNIQUE

The researcher employed purposive sampling. They had specifically chosen the

respondent in the urban area / low class families.

INSTRUMENTATION AND VALIDATION

For data gathering, researchers carefully designed questionnaires to the respondents

ensuring that this information is in a form that can be objectively analyzed in order to

elicit the needed data that pertained to the topic under study. This consisted on different

parts and specific purposes. Part I collecting data on the respondents profile, Part II

deals with level of knowledge and there attitude in newborn screening. Interview was

used by the researcher to the respondents to supplement primary source of data, it also

gave opportunity for the respondent to clarify questions concerning the survey. Further,

it gave flexibility to give follow up questions or discuss issue concerning the topic of

study that was not clearly expounded by the questionnaire. The observation was also

been an excellent source of data. Observational findings are considered strong in validity

because the researcher is able to collect a depth of information about a particular

behavior.

EVALUATION OF SCORING

The options to the items of the questionnaire that were in the Likert Scale within the

continuum of five were as follows the corresponding assigned points.

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 Assigned points Class interval Verbal interpretation
5 4.51-5.00 Very much aware
4 3.51-4.50 Aware
3 2.51-3.50 Moderately aware
2 1.51-2.50 Less aware
1 1.00-1.50 Not aware at all

DATA GATHERING PROCEDURE:

The researchers went to Barangay Sto. Ni ňo Biňan, Laguna to conduct a survey but

before giving the survey form, the researchers first give letter to the respondents as a

means of asking permission. As the respondents allowed the researcher to conduct a

survey, the survey form was given individually.

STATISTICAL TREATMENT USED

To establish solution to the problem, numerical presentation and analysis of the data

gathered for this study. For in depth analysis and interpretation of data, the following

techniques were used:

1) Frequency and percentage distribution. Percentage was used to find the ratio of

frequency of response to the number of respondents by applying this formula:

P = f / N x 100

Where: P = Percentage

f = frequency

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 N = total number of respondent

2) Weighted Mean, used to determine the knowledge and attitude of the respondent

on the newborn screening.

The formula for weighted mean is:

∑ fx
WM= ---------------------
N

Where: WM = weighted mean

f = frequency
x = assigned weight
∑ = summation symbol
N = total number of respondents

3) Pearson Product Moment Correlation, used to determine the magnitude and

direction of the relationship between (a) profile variable and level of knowledge

on newborn screening (b) profile variable and attitude on newborn screening.

The formula for Pearson r is:

n∑xy - ∑x ∑y
Rxy = --------------------------------
√ [n∑x2 – (∑x)2] [n∑y2 (∑y)2]

Where: r = degree of relationship between x and y

x = the observed data for the independent variable

y = the observed data for the dependent variable

n = sample size

The degree of linear relationship can be interpreted through the use of range of

value (Bermundo, 2005) for the Pearson Product Moment Correlation.

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