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Chapter I Newborn Screening Awareness and Acceptability among Selected Mothers at Candelaria Municipal Hospital: An Assessment
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). According to World Health Organization (WHO) figures, about two million babies are born in the Philippines every year, and not all are aware, however, that 33,000 babies are at risk of life threatening disorders that could cause mental retardation and even death. Over 99% of parents agree for their baby to have the NBS test and overall about 1 out of every 1000 babies tested (0.1%) will be diagnosed with a condition as a result of having NBS (WHO, 2007). In response to growing concerns over the health of children, newborn screening for congenital disorders began in the United States in 1961, when Dr. Robert Guthrie designed an assay for the pre-symptomatic identification of patients with Phenylketonuria (PKU) using dried blood absorbed into special filter paper. Newborn screening has since been a routine component of quality newborn care in the United States with newborn coverage of about 100%. The test involves prickling the babys heel to obtain a small blood sample, which is then sent to a special laboratory for the testing. The test is best done within 24
hours, or at least 48 hours after a baby is born. Even though each disease by itself is rare, all together these diseases affect 1 in 1500 babies. If untreated, they can lead to health problems, such as poor growth or mental retardation (London, 2007). This form of testing is known as screening because it involves testing a whole population - in this case, newborn babies. All babies are tested even if they do not have any obvious signs of a condition that affects their metabolism, endocrine and blood (Stewart, 2007). In order to provide optimum level of health for the children and infants, different researches and programs were inducted to promote development. In July 2000, the
Philippine NBS Project was cited for outstanding health research by the Philippine Council for Health Research and Development. In October 2000, the NBS Project had already screened 135,000 babies, 53 of which were confirmed to have one of the disorders included in the program. But perhaps the most dramatic achievement, by far, of the Philippine NSB Project is the approval into law on April 7, 2004; Republic 9288, entitled, AN ACT PROMULGATING A COMPREHENSIVE POLICY AND A NATIONAL SYSTEM FOR ENSURING NEWBORN SCREENING. This Newborn Screening Act of 2004 ensures that every newborn in the Philippines is given the opportunity to be offered newborn screening. It is the policy of the state to protect and promote the right to health of the people, including the rights of children to survival and full and healthy development as normal individuals. In pursuit of such policy, the State shall institutionalize a national newborn screening system that is comprehensive, integrative and sustainable, and will facilitate collaboration among government and non-
government agencies at the national and local levels, the private sector, families and communities, professional health organization, academic institutions and non-
governmental organization. The National Newborn Screening System shall ensure that every baby born in the Philippines is offered the opportunity to undergo newborn screening and thus be spared from heritable conditions that can lead to mental retardation and death if undetected and untreated. (McKinney, 2007) The implementation of this law has found renewed impetus through an earlier Proclamation No. 540, signed by former President Gloria Macapagal Arroyo on January 20, 2004, declaring the 1st week of October of each year National Newborn Screening Week. However, the greatest challenge remains: making newborn screening available to all Filipino babies. A critical point of concern is the lack of public awareness about the benefits of newborn screening. Moreover, and perhaps because of low awareness, there appears to be some resistance from mothers to the idea of subjecting babies to the screening procedure. Even the law acknowledges that NBS may not be acceptable to some parents, as evidenced by Article 3, Section 7 of the Newborn Screening Act, thus: Sec. 7. Refusal to be Tested a parent or legal guardian may refuse testing on the grounds of religious beliefs, but shall acknowledge in writing their understanding that refusal for testing places their at risk for undiagnosed heritable conditions. A copy of this refusal documentation shall be made part of the newborn screening database. Indeed, the goal of NBS to become program for major disease prevention in the Philippines has yet to be realized. This is where public support is required so that our policymakers and health administrators can be compelled to integrate this technology as part of the Filipino health routine.
It is this challenge that has prodded the researchers to conduct a study on the determinants of NBS awareness and acceptability, albeit on a limited scale. The researchers have chosen to conduct their study at Candelaria Municipal Hospital as they have found out that out of the average of 101 pregnant mothers who give birth on the hospital, only 45% of them are subjecting their infants to Newborn Screening.
Statement of The Problem The study aimed to assess the awareness regarding Newborn Screening and also, the underlying factors that promote the acceptability of Newborn Screening among Filipino mothers, specifically among selected mothers in Candelaria Quezon who had just delivered their babies at the Candelaria Municipal Hospital (CMH). The following specific problems were sought to be addressed:
1. What are the characteristics of selected respondent-mothers in terms of:
a. Nature of the screening program b. Availability and accessibility of the program c. Significance of NBS program
3. What is the level of acceptance of the respondents on Newborn Screening?
4. What are the variables that affect the acceptance of the respondents on Newborn
Screening? 5. What are the implications of this study to the following : a. Health Education b. Program Development c. Community Health Nursing
THEORETICAL 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 as well as to educate the parents, specifically the mothers beforehand, on the benefits of having the Newborn Screening done on their child. Moreover, it was also based on the Theory of Human Becoming by Rosemarie Rizzo Parse (1995). It 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, pregnant women are the ones responsible on
deciding whether to subject or not to subject their child on Newborn Screening. The nurse will only serve as a guide for women in gathering correct information on newborn screening and during their decision making concerning the screening of their child.
Conceptual Paradigm
The purpose of this study is to assess NBS awareness and its acceptability among selected mothers --- whether they submit or not their child on Newborn Screening. In the diagram shown above, the Inputs included are Social Influence, which refers to the Economic Problems or fear of the mother to be discriminated when results of such NBS is achieved. Educational Status of the mothers was also considered for their level of understanding regarding the program would affect their acceptance of it. Culture and Religion would be referring to Role of traditional healers, values & norms of a person, family influence & decision making pattern. Socioeconomic Status would be the financial capability of the mother. Meanwhile, Education refers to the mothers knowledge regarding NBS which may affect her acceptance of the certain procedure; Services on the Hospital refers to Method and quality of testing, competence of provider, delivery of the result, and confidentiality and privacy implemented in the hospital. Together, all these factors may affect the perception and acceptance of the mothers regarding NBS. If a mother is knowledgeable or aware about the different advantages given by the NBS on the infant, and is financially capable of having the procedure done so, and is also satisfied with the services offered by a certain institution, she may decide to accept the procedure to be done on her child and this may mean early detection of conditions present on the child which may suggest prompt treatment accordingly. Moreover, child survival intervention through immunization, screening, nutrition, education, sanitation and better health care is primarily the mothers responsibility, and all these depend heavily on her capacity
Because childs health is affected by factors other than physiology by family relationship, by living conditions in their home and communities, by political activities--the NBS program may have to develop strategies to address womens roles from vantage points outside the clinic. As the NBS program looks toward the future, it will face several challenges: the need to publicize and market its services and programs to gain a larger client base; efforts to make operations sustainable instead of reliant on grants from donors; and decision about how many services to provide and to whom.
Assumptions For purposes of this study, the researchers have moved along the following assumptions: 1. Newborn screening is a must for babies after giving birth.
2. Provide knowledge to the parents will let them ensure that they recognize their
Scope and Delimitation of the Study The result of this study have been obtained from direct interviews and analysis of the checklist questionnaires that were distributed among respondents, who constitute a sample size of 30 selected mothers who had delivered their babies at the Candelaria Municipal Hospital within the period February 2012 to March 2012 which was the time of collection samples.
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Care was also undertaken to determine ---whether by herself or with the influence of other members of the family, or friends. The researchers have remained mindful of the general observation that a key component of the Newborn Screening acceptability is the provision of not only Newborn Screening services, but also information on the program itself.
Significance of the Study This study aimed to assess the potential of full implementation, particularly since provision of law mandate the availability of this procedure to all Newborn children. The researchers expected this study, therefore, to impact on the following sectors/areas: To the respondents, for it will make them more knowledgeable or if they are not aware, give them full knowledge of the importance and benefits of NBS as the researchers communicate and conduct interviews with them. To the nurses, for it will provide them awareness about the important role nurses play in NBS promotion and the provision of health information and will help them gain confidence towards health education through repeated interaction with the mothers. For the nursing profession, it will serve as basis for formulating more programs to implement in order that all children will undergo the Newborn Screening program.
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For the Policymakers, it will inquire them to have immediate feedback about the provision of the NBS law that may require fine- tuning and/or amendment.
Definition of Terms The researchers have defined the following terms, either operationally or contextually, to afford the readers a clearer understanding of the study and its results: Awareness: It is the state or ability to perceive, to feel, or to be conscious of
events, objects or sensory patterns. In this level of consciousness, sense data can be confirmed by an observer without necessarily implying understanding. Acceptability: The level of acceptability of the given situation that also includes satisfaction of what is required and what is the standard. Candelaria Municipal Hospital: This is a secondary hospital located at Candelaria
Quezon where in the researchers would conduct their study on selected mothers regarding NBS awareness and acceptability. Mother: It refers to a female parent who nurtures and rears her newborn child. Newborn: It means a child from complete delivery up to 30 days of life. Newborn screening (NBS): It is a simple procedure to find out if your baby has a rare metabolic disorder. Although your baby may look healthy at birth, you cannot be certain that he will not develop negative outcomes caused by these metabolic
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disorders. If the disorders are left untreated, they may lead to physical disabilities, mental retardation, and even death. Chapter II Review of Literature and Related Studies This chapter contains literature and prior studies related to the researchers study which may help in lending context and enrich the discussion of the subject matter. This gave the researchers full understanding of the subject being investigated and studied.
Related Literature Newborn Screening (NBS) programs identify children who are born with serious genetic, metabolic, hematologic, infectious or auditory disorders. These children generally appear normal at birth but have an inherent condition that will lead to disability or death without intervention. Screening is performed on blood samples that have been collected shortly after birth and dried on a filter paper. To ensure that the specimen can be reevaluated if warranted by the initial screening result, extra samples are collected in the form of multiple blood spots on a standardized form. Individual states may store these extra samples for use in the quality control of current test and the development of new tests. In addition, residual dried blood spots also have many potential uses in public health and bioemedical research (Olson, 2010) According to DOH (2011) Newborn screening (NBS) is a public health program aimed at the early identification of infants who are affected by certain
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genetic/metabolic/infectious conditions. Early identification and timely intervention can lead to significant reduction of morbidity, mortality, and associated disabilities in affected infants. NBS in the Philippines started in June 1996 and was integrated into the public health delivery system with the enactment of the Newborn Screening Act of 2004 (Republic Act 9288). From 1996 to December 2010, the program has saved 45 283 patients. Five conditions are currently screened: Congenital Hypothyroidism, Congenital Adrenal Hyperplasia, Phenylketonuria, Galactosemia, and Glucose-6-Phosphate
Dehydrogenase Deficiency. According to National Institutes of Health- UP Manila (2010), Newborn Screening Promotion, NBS test costs only Php. 500 at a very reasonable price. The DOH Advisory Committee on Newborn Screening has approved a maximum allowable fee of P50 for the collection of the sample. According to Department of Health (DOH) 2011, Newborn screening is available in participating health institutions (hospitals, lying-ins, Rural Health Units and Health Centers). If babies are delivered at home, babies may be brought to the nearest institution offering newborn screening. According to ACOG (2003) Parent education about newborn screening should start well before the time of delivery and labor. The babys pediatrician, family physician, or other health care provider should introduce information about newborn screening to parents during the third trimester. Education on newborn screening should be included during the pre-admission process. Community health agencies for pregnant women should
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also include this education. Obstetrician-gynecologists can continue to work to improve the health of their patients by informing expectant families of the newborn screening process. According to Nieto (2009), the following are the common diseases found in newborn screening test: CH (Congenital hypothyroidism) - is a condition of thyroid hormone
deficiency present at birth. Approximately 1 in 4000 newborn infants has a severe deficiency of thyroid function, while even more have mild or partial degrees. If untreated for several months after birth, severe congenital hypothyroidism can lead to growth failure and permanent mental retardation. Treatment consists of a daily dose of thyroid hormone (thyroxine) by mouth. Because the treatment is simple, effective, and inexpensive, nearly all of the developed world practices newborn screening to detect and treat congenital hypothyroidism in the first weeks of life. CAH (Congenital adrenal hyperplasia) - refers to any of several autosomal recessive diseases resulting from mutations of genes for enzymes mediating the biochemical steps of production of cortisol from cholesterol by the adrenal glands (steroidogenesis). Most of these conditions involve excessive or deficient production of sex steroids and can alter development of primary or secondary sex characteristics in some affected infants, children, or adults. Approximately 95% of cases of CAH are due to 21-hydroxylase deficiency. GAL (Galactosemia) - is a rare genetic metabolic disorder which affects an individual's ability to properly metabolize the sugar galactose. Lactose in food (such as dairy products) is broken down by the body into glucose and galactose. In individuals with galactosemia, the enzymes needed for further metabolism of
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galactose are severely diminished or missing entirely, leading to toxic levels of galactose to build up in the blood, resulting in hepatomegaly (an enlarged liver), cirrhosis, renal failure, cataracts, and brain damage. Without treatment, mortality in infants with galactosemia is about 75%. PKU (Phenylketonuria) - is an autosomal recessive genetic disorder characterized by a deficiency in the enzyme phenylalanine hydroxylase (PAH). This enzyme is necessary to metabolize the amino acid phenylalanine to the amino acid tyrosine. When PAH is deficient, phenylalanine accumulates and is converted into phenylpyruvate (also known as phenylketone), which is detected in the urine. PAH is found on chromosome number 12.Left untreated, this condition can cause problems with brain development, leading to progressive mental retardation and seizures. However, PKU is one of the few genetic diseases that can be controlled by diet. A diet low in phenylalanine and high in tyrosine can be a very effective treatment. There is no cure. Damage done is irreversible so early detection is crucial. G6PD Deficiency - is an X-linked recessive hereditary disease characterized by abnormally low levels of the glucose-6-phosphate dehydrogenase enzyme (abbreviated G6PD or G6PDH). It is a metabolic enzyme involved in the pentose phosphate pathway, especially important in red blood cell metabolism.
Screening is quick and safe. The heel prick may cause brief discomfort to your newborn, but holding or feeding them during collection will help. There is a very small risk
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of infection because we are making a small break in the skin, but using gloves and cleaning the heel beforehand will minimize this risk - Newborn Screening for the health of your baby (www.health.vic.gov.au). As a parent, one may refuse newborn screening for her baby only if her religious beliefs and practices do not allow this testing. If she refuses to have the test done, she may be asked to sign a paper stating that she refused to have her baby tested for these very serious disorders (www.aaroncyuntalan.com) According to Newborn Screening Reference Center (2012), Newborn screening results are available within seven to fourteen (7 - 14) working days after the newborn screening samples are received in the NSC. A negative screen means that the result of the test indicates extremely low risk of having any of the disorders being screened. A positive screen means that the baby is at increased risk of having one of the disorders being screened. Newborn screening (NBS) is important because a baby with one of these illnesses will appear perfectly healthy and by the time symptoms are visible, irreparable damage can occur damage such as mental retardation or, in countless instances, death. This program is essential nowadays because it is a procedure that determines whether the infant has a congenital defect or anomaly. A mother should always be aware of her infants condition, because once newborn screening procedure is being done and the result has been revealed that the infant is positive for any of the congenital disorders/anomalies, it is being followed up by series of medication, but if the infant did not undergo the procedure and has any of the congenital defects present at birth, it would be a life-long burden not only for the family but especially for the child. (London, 2007)
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Greater education for mothers contributes to new skills, beliefs, and choices about sound health and nutritional practices that directly influence the proximate determinants of child health. For instance, knowledge obtained during a mothers education can affect choices about antenatal care and about childrens nutrition, hygiene, and health care. To the extent that more-educated mothers make healthier choices for themselves during pregnancy, education will have a direct effect on the health of the child at birth (Miller and Rodgers, 2005). According to Deaton (2003) Richer, better-educated people live longer than poorer, less-educated people. According to calculations from the National Longitudinal Mortality Survey which tracks the mortality of people originally interviewed in the CPS and other surveys, people whose family income in 1980 was greater than $50,000, putting them in the top 5 percent of incomes, had a life-expectancy at all ages that was about 25 percent longer than those in the bottom 5 percent, whose family income was less than $5,000. Related Studies Local According to Toletino MJ, (March 2008) based on his findings in his research, Comparison between Selected Primiparas and Multiparas in the level of Awareness regarding Newborn Screening at Quezon Medical Center, the respondents, Multiparas are aware and the Primiparas were unaware of it. According to Ayrette E. Paderes, (March 2005) her findings based on her research at Tayabas Community Hospital in Tayabas Quezon, respondents where highly aware of
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the facts, procedure of newborn screening despite the false or negative statement about newborn screening. According to Marquez KJ (January 2008), her findings based on her research at Lucena Medical Mission Group of Hospital and Health Cooperative, Lucena City, the respondents were highly aware with regard to newborn screening. It is concluded that postpartum mothers delivered their babies in private hospital were aware on newborn screening test and concluded also that state needs to improve communication in promoting newborn screening test in public hospitals.
Foreign According to the study published on May 2006, Pediatrics Vol. 117 entitled: Recommendation for Effective Newborn Screening Communication: Results of focus group with parents and experts that recommended prenatal and primary care providers be involved in educating about newborn screening. Professional societies and state health professional should work together to encourage parent and provider education. Usesfriendly patient provider educational materials, such as those we developed, could from the basis for this education approach. According to Dr N J Kerruish, Department of Womens and Childrens Health Information and consent for newborn screening: practices and attitudes of service providers (2008) 93% of LMC in New Zealand report giving parents information concerning NBS, most frequently after delivery (73%) and in the third trimester (60%). The majority (85%)
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of LMC currently obtain some form of consent (verbal or written) for NBS from parents and consider this to be the ideal approach (94%). Despite this a significant minority of LMC (23%) reported considering that NBS should be mandatory. Of those in our survey who believed that NBS should be mandatory, paradoxically most (89%) still believed that some form of parental consent should be obtained; of those who believed testing should not be mandatory, only a small proportion (10%) would accept parental refusal without question . (Science Daily, Feb 2010), outweigh the costs of a false positive, according to new U-M research published in the February issue of the journal Pediatrics."Published studies of expanded newborn screening in a U.S. setting have resulted in favorable costeffective ratios for screening for this illness but did not include primary data for quality of life effects for a false positive screen," says Lisa Prosser, Ph.D., Research Associate Professor in the Division of General Pediatrics at the University of Michigan Health System and the study's lead author. "Our results show that newborn screening remains costeffective after accounting for the measured loss in quality of life associated with a false positive screen" (Benefits Outweigh Risks Associated with Newborn Screening for Disorder- Chung Yin Kong; Ph.D ; Donna Rusinak, B.A ; and Susan L. Waisbren, Ph.D Benefits Outweigh Risks Associated With Newborn Screening for Disorder Feb2010 ). What is known about communication with parents about newborn bloodspot screening? (2003), it states that the need for education about the role and limitations of screening and the meaning of test results. Research specifically about uptake has little relevance while newborn screening is fully integrated with routine maternity care and refusal rates are negligible. Research about decision aids and informed consent may
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become more relevant with the offer of more screening programmes and the need to seek informed consent, whether this is for screening itself, the reporting of results, or the storage of bloodspots for clinical reasons or research (Stewart; Oliver -What is known about communication with parents about newborn bloodspot screening? May2003). Kemper AR et al. (2005) states that fifty programs provide standardized information about screening, and 32 of these have information available in multiple languages. Most programs (n=36) believe that parents should be informed about newborn screening as a part of prenatal care; however, none has rules or regulations requiring this. Five require documented informed consent; only one provides the consent form in a language other than English. Hospitals and birthing centers are required by many programs to educate families, including providing information (n=12), obtaining informed consent (n=5), informing parents of the right to refuse screening (n=13), and documenting refusal on institutionally developed forms (n=9) (Kemper AR et al. - Informing parents about newborn screening 2005).
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Chapter III Research Methodology This chapter tackles on how the researchers approached the topic as well as how the instrument materialized and how it was be distributed to obtain the necessary information. It also describes the methodology used in this study by identifying the steps used in this research process and is consisting of research design, sample, setting, measurements, data collection, data processing and analysis.
Research Design This study which is entitled Newborn Screening Awareness and Acceptability among Selected Mothers of Candelaria Municipal Hospital, seeks to assess the level of understanding of the mothers regarding Newborn Screening and their level of acceptance of the procedure. The researchers utilized the descriptive method of research through quota sampling technique. In quota sampling the selection of the sample is made by the interviewer, who has been given quotas to fill from specified sub-groups of the population. Descriptive research is a design which aims to describe the nature of a situation as it exist at the time of the study and to explore the cause of particular phenomena. (Ardales, 1998) Descriptive Method was regarded as the most appropriate method to be used.
Research Locale
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Candelaria Municipal Hospital in Candelaria Quezon, was chosen by the researchers as the locale of their study. The locale is near the town proper. The research population who served as the sources of data was made up of mothers who were present on the hospital during the conduction of this study and has a newborn child subjected or not subjected to newborn screening. An allocated number of respondents were chosen as subjects to partake in the study, the number chosen by the researchers or allocated by the researchers will be enough to represent the general population of the respondents taking into consideration the percentage of marginal error.
The Research Subjects There were more than 100 documented cases of delivery at Candelaria Municipal per month. Thirty percent (30%) of the delivery rate per month was selected from this total population, with 30 questionnaires to be distributed. The questionnaires were distributed to those mothers who were present during the period of data gathering.
Data Gathering Tool The survey instrument is a self-made questionnaire, which was used to assess the awareness and acceptability of NBS among selected mothers who delivered their babies in Candelaria Municipal Hospital.
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Specifically, a simple survey will be employed. Researchers decided to paraphrase the original instrument designed for this study into the national language, Filipino, to assure wider comprehension among respondents. To establish content validity of the instrument, the questionnaire was submitted to an experienced research adviser who was asked to evaluate the items for clarity and appropriateness, and most were accepted with few revisions. The instrument was pre-tested on eight (8) mothers in a selected facility to determine readability and understanding by respondents.
Data Gathering Procedure Personal or face-to-face surveys were conducted among the respondents, thus assuring that responses are immediately gathered after each interview. The confidentiality of each participants responses was assured during the interview. The researchers provided formal letters of communication for the Medical Director, Chief Nurse of the hospital and to the Head Nurse of the OB-Gyne department to gain permission on conducting the said study.
Instrumentation The researchers gathered data that supported the study awareness and acceptability in Newborn Screening. The data were gathered in different sources such as; books, articles and even in different websites. After gathering some data, the researchers
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formulated a survey type of questionnaire based on its sub-problems. From English language, the questions were translated to Filipino language for easy understanding of the respondents. The researchers also conducted a pilot testing to selected mothers to make sure that the questions were appropriate to the respondents so that the researchers would collect the proper data. The first part of the questionnaire is the checklist about respondents demographic profile which was composed of age, civil status, educational attainment, monthly income and maternal history. The second part of the questionnaire is regarding Level of Awareness regarding Newborn screening. It consists of three (3) parts: Nature of Screening, Availability and Accessibility of the Program and Significance of Newborn Screening Program. The third part of the questionnaire contains seven (7) item questions about the Level of Acceptance on Newborn Screening, so as the fourth part which is composed of nine (9) questions regarding Factors that Influences Acceptance of Newborn Screening. The researcher came up with 3 and 4 points scale for questions with varying degrees of responses. Responses to items on second part are made on the following scale: 1 - Unaware, 2 Not so Aware, 3 Aware, 4 Fully Aware. The following are the scale of the third part: 1 - Unacceptable, 2 - Acceptable, 3 - Highly Acceptable. Meanwhile, the following are the scale of the fourth part: 1 - Doesnt Affect, 2 - Affects, 3 - Highly Affects.
Data Processing
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1. Frequency Percentage Distribution To answer the sub-problem `1(demographic profile of the respondents), the researchers utilized simple statistical method such as frequency ranking technique. The frequency method is the simplest method that can be obtained by getting the frequencies of similar responses and ranking them according to the frequency obtained. The percentage conversion can also be used by converting frequencies into percentage using the formula;
P = f/n x 100 Where the formula stands for: P = percentage equivalent f = the frequencies of similar responses n = is referable to the number of respondents involved in the study
2. Weighted Arithmetic Mean To answer sub-problem 2, 3 and 4 (respondents awareness regarding Newborn Screening; Nature of Screening, Availability and Accessibility of the program & Significance of Newborn Screening; the Level of Acceptance of Newborn Screening and Variables that Affect the Acceptance of Mothers on Newborn Screening), the
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researcher used the Likert Scale in the analysis of the central tendencies of the data that they gathered. The researchers knew that the Likert Scale is the most appropriate method in the statistical treatment of their data measuring the degree of agreement of the respondents. The Likert Scale depended on the response from the questionnaire given to the respondents. Measure probability or measure of central tendencies of responses was also utilized in the course of treatment of the data gathered. The mean weight was highly commendable for interpreting data that have varying degrees responses. The formula for the mean weight is; X = __wf___ n Whereas: X = weighted mean summation of weighted frequency total number of population
wf = n=
MEAN AND DESCRIPTIVE MEANING USED IN THE STUDY Table I. 4-point Scale Table for Verbal Description of Level of Awareness Regarding Newborn Screening
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Weighted Mean 1 2 3 4
Range of Weighted Mean 1.00 1.75 1.76 2.50 2.51 3.25 3.26 - 4.00
Table II. 3-point Scale for Verbal Description of Level of Acceptance of Newborn Screening Weighted Mean 1 2 3 Range of Weighted Mean 1.00 1.67 1.68 2.35 2.36 3.00 Qualitative Description Unacceptable Acceptable Highly Acceptable
Table III. 3-point Scale for Verbal Description of Variables that Affect the Acceptability of the Respondents on Newborn Screening Weighted Mean 1 2 3 Range of Weighted Mean 1.00 1.67 1.68 2.35 2.36 3.00 Qualitative Description Doesnt Affect Affects Highly Affects
For a thorough understanding of the collected data from the respondents, data were presented into graphs and tables. Data processing is important for nursing researcher
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because this is a process of interpreting such gathered data in order to come up with the result of the study.
Chapter IV Presentation, Analysis, and Interpretation of Data This chapter presents findings of the study based on the mothers awareness and acceptability of Newborn Screening with the following objectives:
1. To identify the mothers awareness regarding newborn screening, its nature,
procedure. The following are tables and chart that corresponds to the questions result. The first category shows the different charts of respondents profile according to Age, Civil Status, Educational Attainment, Monthly Income, and Maternal History. The second category provides the findings about questions under: Level of Awareness regarding Newborn Screening, Level of Acceptance on Newborn Screening, Factors that Influences Acceptance of Newborn Screening. The data were presented in numerical as well as text
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terms, and the tables consisted of the demonstrated scores, descriptive statistics and collective data. With the participation of the admitted mothers in Candelaria Municipal Hospital, the researchers were able to distribute thirty questionnaires and all of them were able to answer it.
Ag e
3% 10% 3% 3% 17%
Below 18 19 - 21 22 - 24 25 - 27
27% 37%
28 - 30 31 - 33 34 above
FIGURE 2. Percentage distribution of the Respondents According to Age Figure 2 presents the data of the respondents in terms of their age. The sample was composed of 30 selected mothers who had just delivered their babies in CMH. This figure
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shows that 37% (11 mothers) of the total respondents were within the age range of 22-24 while 27% (8 mothers) were within the age range of 25-27 years old, 17% (5 mothers) were within the age range of 19-21years old, 10% (3 mothers) were within the age range of 28-30. And only 3% (1 mother) of the respondents are in ages 18 and below, 31 to 33 and 34 and above. These data indicates that most mothers are in their stage of Young Adulthood, wherein they are of more focus on accomplishing maternal tasks and is getting ready for developing the ability to manage a home and assume responsibilities for her child. (Taylor, 2005)
Civil S tatus
Single
47% 53%
Married
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In figure 3 the data is according to the respondents civil status. This chart shows that majority of the respondents are single with the average of 53% (16 mothers). Meanwhile, 47% (14 mothers) were married. As cited in Single Parent Center.net (2011), single parenting is becoming a rapidly rising trend in the society. It is of course not only through pre-marital sex or divorce that spouses are often left alone with a child. The cause of single parenting stretch much wider than that. Studies in the US alone indicate that there are four single parents to every ten parents, there two single parents for every ten adults in the country. Single parents are said to be less knowledgeable than those mothers who are married when it comes to attending the needs of their children. This is because married mothers are frequently more experienced in decision making concerning the health of their children. Also, mothers who are married possess much sense of their own maternal competency in performing care for their infants and children.
53%
College Graduate
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Figure 4. Percentage distribution of the Respondents According to Educational Attainment ` In figure 4 the data of the respondents are presented in terms of educational attainment. It shows that 53% (16 mothers) of the total respondents were able to finish high school, 20% (6 mothers) were college undergraduate, 10% (3 mothers) were able to finish college, 7% (2 mothers), were able to finish elementary, 7% (2 mothers) were high school undergraduate, and only 3% (1 mother) were elementary undergraduate. It only indicates that most of the respondents are high school graduates that are engaged to the study. This data illustrates the maturity of the mothers specifically in understanding child care. The level of education of the mothers can greatly affect her understanding of Newborn Screening as her knowledge of it depends on how high her educational attainment was. Greater education for mothers contributes to new skills, beliefs, and choices about sound health and nutritional practices that directly influence the proximate determinants of child health. For instance, knowledge obtained during a mothers education can affect choices about antenatal care and about childrens nutrition, hygiene, and health care. To the extent that more-educated mothers make healthier choices for themselves during pregnancy, education will have a direct effect on the health of the child at birth (Miller and Rodgers, 2005).
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MonthlyIncom e
0% 17% 37% 3% 0%
5,000 below 5,001 - 10,000 10,001 - 15,000 15,001 - 20,000
43%
In Figure 5, the data of the respondents in terms of monthly income are presented. It shows that 43% (13 mothers) have a monthly income of 5,001-10,000 per. On the other
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hand, 37% (11 mothers) have a monthly income of 5,000 and below, 17% (5 mothers) have a monthly income of 10,000-15,000, 3% ( 1 mother) has a monthly income of 20,000 -25,000, and none of them have monthly income of 25,000 and above,15,000 to 20,000. It only shows that most of the respondents earn 5,000 to 10,000 per month and eventually they can afford to subject their child to NBS. Mothers with higher socioeconomic status are considered to be more knowledgeable and has higher level of educational attainment. According to Deaton (2003) Richer, better-educated people live longer than poorer, less-educated people. According to calculations from the National Longitudinal Mortality Survey which tracks the mortality of people originally interviewed in the CPS and other surveys, people whose family income in 1980 was greater than $50,000, putting them in the top 5 percent of incomes, had a life-expectancy at all ages that was about 25 percent longer than those in the bottom 5 percent, whose family income was less than $5,000.
Parity
17% 6% 7% 43% 27%
1 2 3 4 5
G ravida
6% 17% 27 % 7%
1
4 3%
2 3 4 5
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In figure 6 the data of the respondents are presented in terms of their maternal history. This chart shows that majority of the respondents are primiparas with an average of 43% (13 mothers). Meanwhile, 27% (8 mothers) have 2 children, 17% (5 mothers) have 3 children, 7% (2 mothers) have 5 children, 6% (2 mothers) have 4 children. According to Toletino MJ, (March 2008) based on his findings in his research, Comparison between Selected Primiparas and Multiparas in the level of Awareness regarding Newborn Screening at Quezon Medical Center, the respondents, Multiparas are aware and the Primiparas were unaware of it. But nowadays, primiparas had gain knowledge about newborn screening, because the health care provider provides information about the test before giving birth to their first child.
Table IV. Level of awareness of the respondents about NBS Table IV.A
STATEMENT a. Nature of Screening 1. Newborn Screening is a simple procedure to find out if your baby has a rare metabolic disorder. 2. Newborn Screening is a program of the Department of Health. 3. The attending physician or the birth attendant is responsible in explaining the screening test results to the parents. 4. Newborn Screening test aids in early detection of five congenital metabolic diseases of the newborn. 5. The baby must undergo NBS after 24 hours but not later than three (3) days of his/her birth. 6. Newborn screening is safe. 7. Newborn Screening Tests are done through UA 1 NA 2 A 3 FA 4 N WM VD Rank
2 1 1 1 2 1 4
8 4 7 2 4 4 4
17 18 16 20 18 15 16
3 7 6 7 6 10 6
3 0 30 3 0 30 3 0 30 3
7 3 4 2 5 1 8
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19
2.63
Aware
Legend:
WM VD R
Table IV shows that the Level of Awareness of the Respondents about Newborn Screening, where the scale of 1 means Unaware while the scale of 4 refers to Fully Aware. This table is divided into three subcategories. The first subcategory is concerned with the Nature of the Screening. As shown in the table, majority of the respondents are aware that Newborn screening is safe, obtaining a mean of 3.07. It is also shown in the table that the second with the highest mean is the awareness that Newborn Screening test aids in early detection of five congenital metabolic diseases of the newborn with 3.03 which falls also on Aware. The third item with the highest mean is Newborn Screening is a program of the Department of Health with 2.98 (Aware). Obtaining the least mean is the item Newborn Screening Tests are done through heel prick method to get blood samples with Aware and the score of 2.53. As cited in www.health.vic.gov.au. Screening is quick and safe. The heel prick may cause brief discomfort to your newborn, but holding or feeding them during collection will help. There is a very small risk of infection because we are making a small break in the skin, but using gloves and cleaning the heel beforehand will minimize this risk. Mothers are aware of the procedure but it has the least mean as shown on the table above, and as cited in, Newborn screening is a simple procedure. Using the heel prick method, a few
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drops are taken from the baby's heel and blotted on 1 a special absorbent filter card. The blood is dry 3 to for 4 hours and sent to the Newborn Screening Laboratory.
Table IV. B
UA 1 NA 2 A 3 FA 4
STATEMENT
WM
VD
Rank
b. Availability and Accessibility of the Program 1. Newborn Screening is available in participating Newborn Screening facilities (hospital, lying-ins, rural health units and health centers). 3 2. The facilities providing NBS are within accessible locations. 4 3. The NBS program is within financial capability of the family. 1
3 8 3
18 11 14
6 7 12
30 30 30
2 3 1
Legend:
WM VD R
The second subcategory of Table IV is about the Availability and Accessibility of the Program. The scale of 1 means Unaware while the scale of 4 means Fully Aware. Majority of the respondents are aware of NBS program is within financial capability of the family which obtained the mean of 3.17 While, Newborn Screening is available in participating Newborn Screening facilities (hospital, lying-ins, rural health units and health centers) which obtains 2.7 and the mothers are not so aware of The facilities providing NBS are within accessible locations with the average of 2.43.
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According to Department of Health (DOH) 2011, Newborn screening is available in participating health institutions (hospitals, lying-ins, Rural Health Units and Health Centers). If babies are delivered at home, babies may be brought to the nearest institution offering newborn screening. According to National Institutes of Health- UP Manila (2010), Newborn Screening Promotion, NBS test costs only Php. 500 at a very reasonable price. The DOH Advisory Committee on Newborn Screening has approved a maximum allowable fee of P50 for the collection of the sample Newborn Screening Promotion. Table IVC.
UA STATEMENT c. Significance of Newborn Screening 1 NA 2 A 3 FA 4 N WM VD Rank
1. Newborn Screening test is important to ensure the infants good health condition. 2. It helps in detecting the metabolic disorders of an infant so that it would not lead to further deterioration of the childs health status. 3. When diagnosed early of disorders, there is a chance of excellent prognosis and the baby may be spared from lifelong impairment and can enjoy normal life. 4. If my baby is not screened, it could lead to severe mental retardation and even death.
19
30
3.13
Aware
18
30
2.73
Aware
17
30
2.9
Aware
17
30
2.67
Aware
Legend: VD R -
The third subcategory of Table IV is about the Significance of Newborn Screening. Majority of the respondents are aware that Newborn Screening test is important to ensure the infants good health condition obtaining a mean of 3.13. With a mean of 2.9, the respondents are aware that if the child was diagnosed early of having one of the
39
disorders, there is a chance of excellent prognosis and the baby may be spared from lifelong impairment and can enjoy normal life. The respondents are aware with the least mean of 2.67 that If their baby is not screened, it could lead to severe mental retardation and even death.
Newborn screening (NBS) is important because a baby with one of these illnesses will appear perfectly healthy and by the time symptoms are visible, irreparable damage can occur damage such as mental retardation or, in countless instances, death. This program is essential nowadays because it is a procedure that determines whether the infant has a congenital defect or anomaly. A mother should always be aware of her infants condition, because once newborn screening procedure is being done and the result has been revealed that the infant is positive for any of the congenital disorders/anomalies, it is being followed up by series of medication, but if the infant did not undergo the procedure and has any of the congenital defects present at birth, it would be a life-long burden not only for the family but especially for the child. (London, 2007)
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Statement 1. I understood everything that the nurse/ hospital worker/ doctor told me about NBS test. 2. I am financially capable to have my child undergo NBS. 3. I would like to subject my child for NBS, since my first child had undergone to this test too. 4. NBS is not against my cultural and religious beliefs 5. The hospital emphasizes promotion of NBS based on the policies and standards of the institution. 6. I am prepared to whatever results the NBS test may give. 7. I would like to subject my child for newborn screening
UA 1
A 2
HA 3
N 30 30 30 30
RANK 5 7 3 1
1 2 1 0
23 22 16 11
6 6 13 19
1 2 3
15 14 15
14 14 6
30 30 30
2 4 6
Legend:
WM VD R
Table V shows the Level of Acceptance on newborn screening, where the scale of 1 Unacceptable, while the scale of 5 refers to Highly Acceptable. As shown in the table, majority of the respondents highly accepts that NBS is not against their cultural and religious beliefs, obtaining the mean of 2.63. It shows that in the hospital setting, The hospital emphasizes promotion of NBS based on the policies and standards of the institution with a mean of 2.37. On the other hand, with a mean
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of 2.33, respondents accept and would like to subject their child for NBS, since their first child had undergone to this test too. Moreover, obtaining the least mean in the item I am financially capable to have my child undergo NBS with a score of 2. Most mothers accept the fact that they are financially capable of subjecting their child to the test. As cited in www.slh.wisc.edu, as a parent, you may refuse newborn screening for your baby only if your religious beliefs and practices do not allow this testing. If you refuse to have the test done, you may be asked to sign a paper stating that you refused to have your baby tested for these very serious disorders. According to National Institutes of Health- UP Manila (2010), Newborn Screening Promotion, NBS test costs only Php. 500 at a very reasonable price. The DOH Advisory Committee on Newborn Screening has approved a maximum allowable fee of P50 for the collection of the sample Newborn Screening Promotion.
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Table VIII. Variables that Influence the Acceptability of Newborn Screening among Respondents
DA Statement 1. Personal experience of health and illness as well as parenting. 2. Interest and knowledge in health matters. 3. Influence of friends and other people. 4. Religious and Cultural belief of my family. 5. The provider of information regarding Newborn Screening. 6. Financial Capability to undergo Newborn Screening. 7. Quality of Services rendered under the NBS program. 8. Policies/ Standard Procedures Set by the Hospital. 9. The possibility for a positive result of the test. 1 0 6 6 7 5 7 5 2 8 A 2 11 9 6 8 6 9 15 9 5 HA 3 19 15 18 15 19 14 10 19 17 N 2.63 1.9 2 1.8 2.13 1.77 1.83 2.43 1.77 WM 2.63 1.9 2 1.8 2.13 1.77 1.83 2.43 1.77 VD Highly Affects Affects Affects Affects Affects Affects Affects Highly Affects Affects Rank 1 5 4 7 3 8.5 6 2 8.5
Legend:
WM VD R
As shown in the table majority of the mothers responds that Highly Affects their Newborn Screening Acceptance Personal experience of health and illness as
well as parenting with a mean of 2.63 and Policies/ Standard Procedures Set by the Hospital obtaining a mean of 2.43. However, the least item are the Financial Capability to undergo Newborn Screening and The possibility for a positive result of
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Parent education about newborn screening should start well before the time of delivery and labor. The babys pediatrician, family physician, or other health care provider should introduce information about newborn screening to parents during the third trimester. Education on newborn screening should be included during the pre-admission process. Community health agencies for pregnant women should also include this education. The American College of Obstetrics and Gynecology (ACOG) Committee on Genetics Opinion Number 27, October 2003 states: "Obstetrician-gynecologists can continue to work to improve the health of their patients by informing expectant families of the newborn screening process." According to the study published on line on May 2006, Pediatrics Vol. 117 entitled: Recommendation for Effective Newborn Screening Communication: Results of focus group with parents and experts that recommended prenatal and primary care providers be involved in educating about newborn screening. Professional societies and state health professional should work together to encourage parent and provider education. Uses- friendly patient provider educational materials, such as those we developed, could from the basis for this education.
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Chapter V Summary, Conclusion, And Recommendation This chapter presents the summary of the study, formulated conclusion and recommendation offered. The method used to conduct the study has been taken into account. A discussion of the significance of the findings that included the implication to in and on for nursing profession will follow with respect to education for mothers about Newborn Screening Program. Limitations of the study are discussed along with recommendation for further research.
Summary This study was conducted within Candelaria Municipal Hospital in Candelaria Quezon, which aims to seek out, the Newborn Screening Awareness and Acceptability among Selected Mothers at Candelaria Municipal Hospital: An Assessment. The descriptive method of research was utilized and self-made questionnaire served as the principal data gathering instrument. The study was conducted in the month of February 2011. There are 30 respondents who filled up every questionnaire. Participant completed the questionnaire in the said hospital and returned the questionnaires immediately after answering. The results of the questionnaire were tabulated and interpreted from which the findings and conclusion were drawn. The purpose of this study was to:
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1. Assess the mothers level of awareness of the Newborn Screening Program. 2. Identify mothers acceptance of the Program. 3. Assess the mothers awareness of the factors that affects Newborn Screening. The following are the summary of findings of the study based from all the data presented, analyzed and interpreted in Chapter IV: 1. Demographic Profile of the Respondents
1.1 A total of thirty (30) respondents were chosen for this study. 1.2 Majority of the respondent- mothers are of age 22-24. 1.3 When grouped according to Civil Status, 16 (53%) out of 30 are
able to finish Elementary , 10% are able to finish college. School (7%), Elementary (3%)
1.5 Majority of the sample has a monthly income of 5,001- 10,000
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multigravidas are composed of, one child, two children (27%), three chid (17%), four child (7%), five child (7%). 2. Level of Awareness regarding Newborn Screening
2.1 Majority of the respondents are aware that Newborn screening
is safe, obtaining a mean of 3.07 while the least obtained the mean of 2.53 which is the item Newborn Screening Tests are done through heel prick method to get blood samples.
2.2 Majority of the respondents are aware that The NBS program is
within financial capability of the family which obtained the mean of 3.17. It shows that mothers are aware of The facilities providing NBS are within accessible locations, with an average weighted mean of 2. 43
2.3 Majority of the mothers are aware of Newborn Screening test is
important to ensure the infants good health condition with an average weighted mean of 3.13. It shows that mothers aware of the statement If my baby is not screened, it could lead to severe mental retardation and even death with an average weighted mean of 2.67.
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tweighted mean of 2.67. While the respondents only Accepts the item I am financially capable to have my child undergo NBS with a least mean of 2. 4. Variables that Influences Acceptance of Newborn Screening
4.1 Majority of the mothers responds that it Highly Affects their
Newborn Screening Acceptance in Personal experience of health and illness as well as parenting with a mean of 2.63 and Policies/ Standard Procedures Set by the Hospital obtaining a mean of 2.43. However, the least item are the Financial Capability to undergo Newborn Screening and The possibility for a positive result of the test with both a mean of 1.77.
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Conclusion Based from the results of the researchers data gathering, they arrived at the following conclusions:
1. Majority of the respondents are ages 22-24, ,most of the mothers are
Single and High School graduate. The respondents earns 5,000 to 10,000 monthly and most of them are primapara.
2. Respondents are aware that the Newborn Screening is safe. The
respondents are also aware that Newborn Screening test aids in early detection of five congenital metabolic diseases of the newborn and that Newborn Screening is a program of Department of Health. They have little knowledge that Newborn Screening Tests are done through heel prick method to get blood samples.
3. The respondents are less aware that the facilities providing NBS are
within accessible locations while the respondents are much aware that The NBS program is within financial capability of the family and Newborn Screening is available in participating Newborn Screening Facilities.
49
ensure the infants good health condition. The mother respondents are also aware that When diagnosed early disorders, there is a chance of excellent prognosis and the baby may be spared from lifelong impairment and can enjoy normal life and it also helps in detecting the metabolic disorders of an infant so that it would not lead to further deterioration of the childs health status. The respondents are least aware that If their baby is not screened, it could lead to severe mental retardation and even death.`
5. Mothers highly accept that the hospital emphasizes promotion of NBS
based on the policies and standards of the institution and that NBS is not against their cultural and religious beliefs. the respondents would like to subject their child for NBS, since their first child had undergone to this test too. I am financially capable to have my child undergo to this test is the least acceptable for the respondents. 6. Mothers responded that all factors affect their acceptance of Newborn Screening for their child which includes Personal Experience of health and illness as well as parenting, Interest and knowledge in health matters, Influence of friends and other people, Religious and Cultural belief of my family, The provider of information regarding Newborn
50
Screening, Financial Capability to undergo Newborn Screening, Quality of Services rendered under the NBS program, Policies/ Standard Procedures Set by the Hospital and The possibility for a positive result of the test.
7. Mothers responded that Personal Experience of health and illness as
well as parenting and Policies/Standard Procedures set by hospital highly affects them in accepting Newborn Screening. The respondents also responded that The provider of information regarding NBS and the rest of the tatements affects them in accepting the test. The Financial capability to undergo NBS least affect to the respondents.
Recommendations:
Based on conclusions mentioned above, the researchers of this study hereby recommend the following:
1. Implement an effective health education plan for the mothers who are
health education needs to be considered. This includes those professionals directly involved with implementation of the NBS
51
programme, those providing information and education as well as NBS programme staff.
b. Student nurses should also take part on educating the pregnant
mothers in the OB ward in order to make sure that they are given enough information on what NBS is for.
2. Certain programs must be formulated to provide reinforcement NBS
among mothers.
a. For the hospital, the institution must plan to implement a program
that will conduct a seminar to pregnant woman before their delivery to strengthen the health education of Newborn Screening.
b. Also, further policy development regarding best practice in the
timing and distribution of information about NBS should be required. 3. The area of Community Health Nursing must also be given priority. a. For the midwives of the community, they should have formal education plan for the mothers regarding the different congenital disorders which will be taught to them during prenatal visit in order for them to gain knowledge and understanding of how NBS could help towards early detection of these disorders.
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b. Provide some leaflets for pregnant mothers containing information regarding NBS procedure and its importance so that mothers may read it and learn at home if they dont have enough time to go to the Barangay Health Center. 4. Future studies should be done on the effectiveness of the health education plan and programs implemented on the communities and the particular hospital studied. It would provide them basis if they still have to implement more programs or improve their strategies on health education.
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REFERENCES Books
Olson, Steve. (2010) Challenges and Opportunities in Using Residual Newborn Screening Samples for Translational Research. Washington, D.C., The National Academic Press.
London, Marticia (2007). Maternal and Child Nursing Care (3rd Edition). Washington D.C.
Stewart, Heather. (2007) Maternal & Child Nursing Care (2nd Edition)
Journals
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Ayrette E. Paderes, (March 2005). Level of Awareness on Newborn Screening of Selected Mothers in Tayabas Quezon.
Deatus, Angus (2003) Health, Income and Inequality. Fant KE, Clark SJ, Kemper AR. (2005) Completeness and complexity of information available to parents from newborn screening
Jane Miller and Yana Rodgers (2005) Mothers Education and Childrens Nutritional Status: New Evidence from Cambodia. Vol. 26; pp. 132-134
Kemper AR, Fant KE, Clark SJ. (2005) Informing parents about newborn screening. Public Health Nurs.
Moyer VA, (2008) Expanding newborn screening: process, policy, and priorities. Hastings Cent Rep.;pp. 3231
Stewart; Oliver (May 2003). What is known about communication with parents about newborn bloodspot screening?
The American College of Obstetrics and Gynecology (ACOG) Committee on Genetics Opinion Number 27, October 2003
55
Toletino MJ, (March 2008). Comparison between Selected Primiparas and Multiparas in the level of Awareness regarding Newborn Screening at Quezon Medical Center.
Pediatrics Vol. 117 entitled: Recommendation for Effective Newborn Screening Communications
Electronic Sources
Department of Health, Republic of the Philippines (2011 October) Where is Newborn Screening available Retrieved February 2012, from
http://www.doh.gov.ph/node/766
Depertment of Health, Republic of the Philippines (2011 October) Newborn Screening Retrieved Feb 2012, from
http://www.doh.gov.ph/content/newborn-screening
The LawPhil Project Arellano Foundation (2004, April 07). Republic of the Philippines, Congress of the Philippines Retrieved January 2012, from http://www.lawphil.net/statutes/repacts/ra2004/ra_9288_2004.html
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N Dickson (2008, January 24) Information and consent for newborn screening: practices and attitudes of service providers. Retrived January 2012, from http://jme.bmj.com/content/34/9/648.abstract
National Institutes of Health - UP Manila (2010) Newborn Screening Promotion https://sites.google.com/site/vylhphilippines/vylhadvocacies/newbornscreening-promotion/basic-information-on-newborn-screening from
Newborn
Screening
for
the
Health
of
your
baby
2011
http://www.health.vic.gov.au/nbs/downloads/nbs_dl.pdf
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APPENDICES
APPENDIX A
Calayan Educational foundation Incorporated College of Nursing Lucena City Date:
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Dr. Grace S. Mirando MD., MHA, PHSAE Chief of Hospital Candelaria Municipal Hospital Candelaria, Quezon THRU: Mrs. Myrnalita Trinidad RN. OB Head Nurse Candelaria Municipal Hospital Candelaria, Quezon Dear Sir/Madamme: Good day! We are senior nursing students of Calayan Educational Foundation Incorporated and we will be conducting a study entitled Newborn Screening Awareness and Acceptability of Selected Mothers In Candelaria Municipal Hospital, An Assessment as a requirement for the course Bachelor f Science in Nursing. In connection with this, may we request from your good office for permission to conduct the aforementioned study. Rest assured that all findings will be treated with utmost confidentiality. Hoping for your favorable consideration. Thank you very much. Respectfully yours, Jieneth Angoy Emiliano Suayan BSN IV Approved By: Mr. Nelson J. Hugo, MAT Research Professor Noted By: Dr.Maria Theresa S. Imperial Dean, College of Nursing
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Petsa:__________ Sa mga kinauukulan, Kami po ay nagsasagawa ng aming pananaliksik na pinamagatang NEWBORN SCREENING AWARENESS AND ACCEPTABILITY OF SELECTED MOTHERS IN CANDELARIA MUNICIPAL HOSPITAL: AN ASSESSMENT. Ang layunin po ng pag-aaral na ito ay upang malaman ang mga salik na nakaiimpluwensya upang ipa-newborn screening o hindi ipa-newborn screening ng mga nanay ang kanilang mga sanggol pagkatapos ipanganak. Hinihingi po naming ang inyong partisipasyon para sa pag-aaral na ito. Maaasahan po ninyong ang mga impormasyong makukuha mula sa inyo ay mapapanatiling pribado. Maraming salamat po.. Lubos na gumagalang, Jieneth Angoy Emiliano Suayan Mga Mananaliksik Endorsed By: Mrs. Sonia A. Delantar, MAN Tagapayo Ni-notahan ni: Mr. Nelson J. Hugo, MAT Research Professor APPENDIX C QUESTIONNAIRE
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Part I: Demographic Profile Direction: Check ( / ) or fill up the spaces provided according to your responses. A. Age: _____ B. Civil Status: _____ Single _____ Married C. Educational Attainment Graduate Elementary High Schoool College Not Applicable Undergraduate
D. Monthly Income ____ 5,000 and below ____ 5,001 10,000 ____ 10,001 15,000 ____ 15,001 20,000 ____ 20,001 25,000 ____ 25,001 and above E. Maternal History ____ No. of Pregnancies ____ No. of Deliveries
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Direction: Read each item carefully. Indicate your answer by putting a check ( / ) on the box which corresponds to your answer guided by the following: Scale: 4 Fully Aware 3 Aware 2 Not so Aware 1 Unaware
Part III. LEVEL OF ACCEPTANCE ON NEWBORN SCREENING Direction: Read each item carefully. Indicate your answer by putting a check ( / ) which corresponds to your answer guided by the following: Scale: 3 2 1 Highly Acceptable Acceptable Unacceptable
Statement 1. INewborn screening is safe the nurse/ hospital worker/ 6. understood everything that 7. doctor toldScreening Tests test.done through heel prick Newborn me about NBS are 2. Imethod to get blood samples. my child undergo NBS. am financially capable to have 8. IThe blood samples will my sent infor NBS, since my first 3. would like to subject be child the Newborn Screening Laboratory this test too. child had undergone toand the result will be released 7 to 14 working days after newborn religious sample 4. NBS is not against my cultural andscreening beliefs is received in emphasizes promotion of NBS based on the 5. The hospitalthe NBS center. B. policies and standards of the institution. Availability and Accessibility of the Program 1. I am prepared to whatever results the NBS test may give. 6. Newborn Screening is available in participating 7. Newbornlike to subject my child for newborn screening I would Screening facilities (hospital, lying-ins, rural health units and health centers). 2. The facilities providing NBS are within accessible locations. 3. The NBS program is within financial capability of the family. C. Significance of Newborn Screening Program 1. Newborn Screening test is important to ensure the infants good health condition. 2. It helps in detecting the metabolic disorders of an infant so that it would not lead to further deterioration of the childs health status. 3. When diagnosed early of disorders, there is a chance of excellent prognosis and the baby may be spared from lifelong impairment and can enjoy normal life. 4. If my baby is not screened, it could lead to severe mental retardation and even death.
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Part IV. Variables that Influences Acceptance of Newborn Screening Direction: Read each item carefully. Indicate your answer by putting a check ( / ) which under the box that corresponds to your answer guided by the following: Scale: 3 2 1 Highly Affects Affects Doesnt Affect
2 1
Statement 3 That factors that affects my acceptability of Newborn Screening includes: 1. Personal experience of health and illness as well as parenting. 2. Interest and knowledge in health matters. 3. Influence of friends and other people. 4. Religious and Cultural belief of my family. 5. The provider of information regarding Newborn Screening. 6. Financial Capability to undergo Newborn Screening. 7. Quality of Services rendered under the NBS program. 8. Policies/ Standard Procedures Set by the Hospital. 9. The possibility for a positive result of the test.
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APPENDIX D PALATANUNGAN
Unang Bahagi: DEMOGRAPHIC PROFILE Direksyon: Lagyan ng tsek ( / ) o isulat ang sagot sa patlang na naayon sa iyong tugon. A. Edad: _____ B. Estado Sibil: _____ Hindi Kasal _____ Kasal C. Antas ng Edukasyon Natapos Hindi Natapos
D. Buwanang Kita ____ 5,000 pababa ____ 5,001 10,000 ____ 10,001 15,000 ____ 15,001 20,000 ____ 20,001 25,000 ____ 25,001 pataas
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Ikalawang Bahagi. ANTAS NG KAALAMAN TUNKOL SA NEWBORN SCREENING Direksyon: Basahin ng mabuti ang bawat katanungan. Lagyan ng tsek ( / ) ang kahon na ayon sa iyong sagot. Gabay: 1 Hindi Alam 2 Hindi Gaanong Alam 3 Alam 4 Alam na Alam
NEWBORN SCRENING AWARENESS A. Pagsasagawa ng NBS 1. Ang NBS ay isang simpleng pamamaraan
Mga Pahayag
65
`4
upang malaman kung ang bagong panganak na sanggol ay nagtataglay ng mga bihirang sakit sa metabolismo. 2. Ang Newborn Screening ay isang program ng Department of Health (DOH). 1. Ang doktor o kumadrona ay ang responsable sa pagpapaliwanag ng resulta ng newborn screening sa mga magulang. 2. Ang Newborn Screening ay naglalayong malaman ng mas maaga, kung ang sanggol ay mayroong alinman sa limang sakit sa metabolismo. 3. Ang sanggol ay dapat sumailalim sa NBS pagkatapos ng 24 oras ngunit hindi lalagpas ng tatlong (3) araw pagkapanganak. 4. Ang Newborn screening ay ligtas. 5. Ang Newborn Screening ay ginagawa sa pamamagitan ng pagtusok sa sakong ng bata upang makakuha ng sample ng dugo. 6. Ang sample ng dugo ay ipadadala sa Newborn Screening Laboratory at ang resulta ay makukuha pagkatapos ng 7 hanggang 14 araw pagktanggap ng sample. B. Availability and Accessibility of the Program 1. Ang NBS test ay makikita sa iba't ibang mga pasilidad tulad ng ospital, lying-in, rural health unit at health center. 2. Ang mgaahensya na nagbibigay ng NBS test ay madali at malapit na puntahan. 3. Ang programa ng NBS ay abot kaya ng bawat pamilya. C. Kahalagahan ng Newborn Screening Program 1. Ang NBS ay importante para masigurado ang mabuting kondisyon ng sanggol. 2. Nakatutulong ito na malaman ang sakit sa metabolismo ng bata upang nang sa gayon ay hindi na ito makasira pa sa kalusugan ng sanggol. 3. Kapag nalaman ng maaga ang sakit ng sanggol, may tsansa na mgkaroon ng magandang prognosis at ang sanggol ay maaaring makaligtas sa mga kapansanan at magkaroon ng normal na buhay. 4. Kapag ang sanggol ay hindi na-screen, maaari itong humantong sa kapansanan sa pag-iisip at maging sa pagkamatay ng sanggol.
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Ikatlong Bahagi. ANTAS NG PAGTANGGAP SA NEWBORN SCREENING. Direksyon: Basahin ng mabuti ang bawat katanungan. Lagyan ang tskek ( / ) ang kahon na ayon sa iyong sagot. Scale: 1 2 3 Hindi Tanggap Tanggap Tanggap na Tanggap 1 2 3
1.
2.
3. 4. 5. 6. 7.
MGA PAHAYAG Naintidihan ko lahat ng sinabi ng nurse/doctor tungkol sa NBS. Ako ay may pinansyal na kakayahan upang ipanewborn screening ang aking anak.. Gusto kong ipanewborn screening ang aking anak tulad ng aking naunang anak. Ang aking relihiyon at kultura ay hindi hadlang sa NBS. Binibigyang-diin ng hospital ang NBS base sa mga patakaran ng institusyon. Ako ay handa sa kahit ano mang maging resulta ng NBS. Gusto kong sumailalim sa NBS ang aking sanggol.
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Ikaapat na Bahagi. MGA SALIK NA NAKAKAIMPLUWANSYA SA PAGTANGGAP NG NBS Direksyon: Basahin ng mabuti ang bawat katanungan. Lagyan ang tskek ( / ) ang kahon na ayon sa iyong sagot. Scale: 1 Hindi Nakakaapekto 2 Nakakaapekto 3 Higit na Nakakaapekto Mga Pahayag 1 2 3 Ang mga salik na nakaiimpluwensya sa aking pagtanggap sa newborn screening ay ang mga sumusunod: 1. Personal na karanasan ng pagkakaroon ng karamdaman at pagiging magulang 2. Interes at kaalaman sa kalusugan 3. Impluwensya ng mga kaibigan at ng ibang tao 4. Relihiyon at kultura ng aking pamilya 5. Tagapagbigay ng Impormasyon Tungkol sa NBS. 6. Pinansyal na kakayahan upang ipa-newborn screening ang aking anak. 7. Kalidad ng Serbisyo na ibinibigay ng programa ng NBS 8. Patakaran ng Ospital 9. Ang posibilidan ng positibong resulta para sa NBS.
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CURRICULUM VITAE
NAME: JIENETH T. ANGOY HOME ADDRESS: Blk. 9 Lot 11, Krisanta Village, Pagbilao Quezon Email Address: jieneth16@yahoo.com Contact Number: 09084102958
Nationality: Filipino Date of Birth: May 16, 1991 Place of Birth: Lucena City
Educational Background Tertiary CALAYAN EDUCATIONAL FPUNDATION INC Red-V Lucena City Bachelor of Science in Nursing 2012
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Seminars Attended Certificate of Attendance Disaster Management Certificate Attendance Basic Life Support First Aid 2012 2011 2009
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CURRICULUM VITAE
NAME: EMILIANO M. SUAYAN HOME ADDRESS: Kinatihan I, Candelaria, Quezon Email Address: emilsuayan@ymail.com Contact Number: 09478812208
Nationality: Filipino Date of Birth: September 11, 1989 Place of Birth: Candelaria, Quezon
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CALAYAN EDUCATIONAL FPUNDATION INC Red-V Lucana City Bachelor of Science in Nursing Secondary LADY MEDIATRIX INSTITUTE Candelaria, Quezon
2012
2006
Seminars Attended Certificate of Attendance Disaster Management Certificate Attendence Basic Life Support First Aid 2012 2011 2008