Surfacing the Lived Experience of Filipino Mothers: A Child with Cleft Lip Chapter 1 THE PROBLEM AND ITS BACKGROUND Introduction Nowadays, a lot of mother is having a cleft lip child that found out after the birth and even not knows the cause of the problem. They feel distressed and guilty or sometimes blaming their self. Caring a child who cannot feed is another exhausting situation to the mother. It is important to take good care of them and accept the condition. Mother influence also nurtures the psychosocial perception of the child.
The expectation, attitudes and support shown by the mother can influence the child behavior in their existing condition. They become tolerable one or being protective, but treat them as normal as the same by the other child. Furthermore, once aware of that the child with cleft lip may not be communicate in a regular manner as the other child can do. Working in a child with cleft lip is challenging. It may become frustrating, burden and sometimes disappointing. It requires patience, dedication and understanding and above all the love we can give to them.
This challenge is shared by pediatricians, psychologist, social worker, speech therapist, special education teachers, nurses, and parents of persons with cleft lip and foremost by individuals with cleft lip. Kirschner and La Rossa, 2000, stated that, cleft lip and palate may be caused by exposure to teratogens such as alcohol, anticonvulsant and isotretinoin, but there is little evidence to link isolated clefts to any single teratogenic agent with the exception of phenytoin. Use of phenytoin during pregnancy is associated with tenfold increase in the incidence of cleft lip.
The incidence of cleft lip among mother who smoke during pregnancy is twice as great as the incidence is mother who does not smoke during pregnancy. What is being done to improve the personality and boost self esteem of the child? How the parents provide the special needs of the child with regards to their education, nutrition, speech etc. How they help to socialize the child with other? So many questions are asked. Yet, there are few answers. There is a lot concern that address with regards to parenting to a child with cleft lip. Mother is the key source of essential information needed to address challenges faced by child with cleft lip.
It is in this light that this research will be conducted. It sought to identify the concerns and problems faced by mother in caring of a child with cleft lip. Approximately 7,000 newborns (one of every 930 births) are born with cleft lip and/or cleft palate each year in the United States. Cleft lip and palate describe a condition in which a split remains in the lip and roof of the mouth. Although cleft lip and palate are two distinct anomalies, they frequently occur together. Cleft lip with or without cleft palate occurs in 60-75% of the cases. Twenty-five to forty percent are isolated cleft palate.
During growth in utero (in the womb) the lip or palate, which develop from the edges toward the middle, fail to grow together. Such a failure is a consequence of the abnormal migration and proliferation of facial embryonic tissues called mesenchyme. The defect occurs most often among Asians and certain Native American groups, less frequently among whites, and least often among African Americans. (Thomas, 2000) Statistically, approximately one in every 600 newborn babies will be born cleft. We may say that in the Philippines there are one cleft in every 500 newborns.
There are some racial differences in the incidence of clefts. There is a need to establish grounds on which to base efforts to develop better, appropriate and effective programs that suit the quality of life the person with cleft lip. It is preferred that a child with anomalies specifically cleft lip be taught to assure an aggressive role and a sense of leadership. Mother of a child with cleft lip is in the best position to provide the information needed. Their concerns about the kind of quality life they want for their child will most likely be the guiding framework for developing appropriate and providing suitable care.
Emphasizing the specific needs of children with cleft lip perceived by their parents can help in determining what kind of attitude, concern and understanding is needed to improve the necessary management. The researchers choose to study and entitled this thesis “Surfacing the Lived Experience of Filipino Mothers: A Child with Cleft Lip “to know how the mother take care the needs of the child. Statement of the Problem The study aimed to know the lived experience of the mother with cleft lip child. Specifically, this study will seek answers to the following questions: 1.
What characterized the lived experiences of the mother whose child has congenital anomalies, specifically cleft lip? 2. What are the major and minor themes that would be extracted on this study? Significance of the study This study may provide empirical data to be used as a guideline to anticipate the optimum care and support to a child with deformity. This study will be beneficial to the following: Patient/Client. To be able to understand how children with the abnormality cope up. As well how to socialize with other children and in the community.
And also, for them to be able to understand why such abnormality like cleft lip occurs. Health Care Provider/ Nurses. Can benefit with this research because it provides understanding regarding this birth defect. They will know how to take care of the Childs needs. And also what kind of nursing intervention or management is appropriate with a certain situation. We should keep on understanding especially in speech impairment of a child. As a provider of care, let’s give patience and sympathy to this child that needs a positive outlook. Parents.
Can benefit from this study, as they comfort their child in good outlook of life beyond their deformity. It helps the parents to take care the special needs of the child in terms of nutritional, emotional, psychological and spiritual factors. As the child gets older, the parents can guide them on how to socialize with others. This research will serve as a guideline to the parents in making decision according to the developmental concern of a child with cleft lip. Furthermore family member can help the child how to improve their self esteem. Health Institution.
This research would be a big help to the institution to identify their agency for having case of these abnormalities. As they promote a medical intervention to this patient like free operation to correct this deformity. And also how they improve the self esteem and how they handle the needs of the children with such abnormalities. Community. Can benefit from this as a guideline on how they interact in a child with a cleft lip. To give optimum understanding as they socialize and live without deformity. From this society, do not discriminate this people instead accept their physical problem as we communicate with them. Future Researcher.
Can benefit from the result of this study as a reference for further study to improve intervention services to a child with cleft lip and improve existing treatment. Scope and Limitation of the Study This study focused on a mother who has a child with cleft lip on how to take cared the developmental needs and concern of the child. The research aimed to identify the feelings and emotion that facing the mothers on taking care of their child needs in everyday life. The study was conducted at Valenzuela, City. This study involves in-depth interviews using semi-structured questionnaire and actual observations to utilize in gathering data.
Chapter 2 REVIEW OF RELATED LITERATURE AND STUDIES This chapter presents the different literature and past studies related to the current research. The said literature makes this study more reliable and detailed. Coping Mechanism of the Parents Beaumont (2005) found that mothers of children with clefts, who were unprepared for the birth of a child with undiagnosed cleft experienced more grief, whereas mothers who had a child and whose baby had been diagnosed with a cleft, whilst the fetus was still in the womb, tended to be more positive and were not so shocked at the birth.
Synder et al (2005), found that relative to norms, more parents of children with craniofacial anomalies (CFAs) experienced serious levels of parenting stress at times 1 and 2; however, fewer children with CFAs experienced serious levels of adjustment problems. Parenting stress during infancy predicted psychosocial adjustment in toddlerhood but was mediated by parenting stress in toddlerhood.
Parents high on stress at both assessments showed clinical levels of total parenting stress and parent-child dysfunctional interaction when their children were infants; their toddlers showed higher levels of maladjustment than those with parents elevated on parenting stress during only infancy. Jackson et al (2000) emphasize that documented a number of social interactions where parents derive their coping strategies from. These include support from family, assistance from multidisciplinary team in the clinic, and contact with other parents who are in a similar situation.
These social interactions eventually affect the parents’ ability to focus on the positive aspects of the situation, their self-efficacy, and commitment to and love for the child. Goldstein et al (2001) stated that there is emerging research on parents’ response to the “diagnostic event. ” That is, the point at which parents first hears about and begins to cope with their child’s cleft diagnosis. There tends to be a sharp contrast between the information that parents recall being given during the diagnostic visit and the information that they desired.
Young et al. (2001) found that parents expressed a desire for more information about feeding, other factors that may be associated with clefting (eg, developmental delay), and normal, as well as abnormal, findings from their child’s examination (eg, “her muscle tone is normal”). Parents also wanted healthcare providers to use accurate and sensitive descriptions of their child’s deformity (eg, “cleft lip” vs “birth defect” or “harelip”) and to provide reassurance that their child’s cleft was not their fault and that their child was not in pain.
As might be expected, parents’ concerns evolve over time. Initial worries focus on the pragmatics of feeding, timing of lip repair surgery, and possible embarrassment upon introducing the newborn child to others. Souse et al (2009) found that there is a scarcity of studies on gender issues in parenting cleft lip and palate (CLAP) babies. The birth of a CLAP child presents an immediate visible handicap that is distressing to parents.
The aims and objectives of this study are to determine the influence of gender on the attitude of parents on the birth of CLAP babies, to articulate the adverse effects on parents following the birth of CLAP babies and to make suggestions on ways of ameliorating these effects. The study shows that the birth of a CLAP child has adverse effects on its parents. The effects are greater on their mothers. Parents’ reactions, combining shock and grief, showed in 92% of mothers compared with 28% of fathers (p less than 0. 01). Sixty percent of fathers were calm or indifferent compared with 4% of mothers (p less than 0001).
The adverse effects on mothers were accentuated by the husband’s attitude to his wife, the reaction of in-laws, polygamy, poverty and societal influence. It is suggested that there is a need for public enlightenment programmes to educate parents of CLAP babies and the general public on management of CLAP deformity, and the establishment of centres to cater for the socio-psychological need of the people affected cannot be overemphasized. It is concluded that gender plays an important role in parents’ reaction to the birth of CLAP babies; and that the adverse effects are greater on the mothers.
Wong et al (2005) found that Chinese parents would first express initial shock and disbelief upon learning their children’s illness. However, the parents would quickly accept the situation as fated, and eventually the distress would decrease. To help themselves cope, parents would seek information and emotional support. Sadler (2005) interviewed nurses who worked with parents with cleft lip children and found that after the diagnosis, parents were left confused, tense, isolated and vulnerable. Mothers had limited information and support on how to breastfeed the cleft-lip babies.
The interviews also indicated that parents’ responses may differ. Whilst some parents were surprised and overwhelmed and had difficulty coping, other parents still tried to gather information and wanted to talk about their child’s problems. Richman (2000) stated that given the physical deformities that children with cleft lip and palate have, it can be assumed that these children may experience social and mental health problems. Several studies have indicated that children with cleft lip are more socially withdrawn and inhibited especially in the classroom.
Sandberg et al (2002) stated that, the birth of an infant is an exciting and stressful event, even when the pregnancy, labor, and delivery go well. For the parents of an infant born with a facial anomaly, however, it can be a devastating experience. Facial clefting is one of the most common birth deformities. Feelings of fear, guilt, resentment, inadequacy, shame, and grief are common among parents and family members of babies born with cleft deformities. (1) Such feelings can interfere with parent-infant bonding and may have psychosocial effects on both the infant and family members. 2) Reactions of family members, friends, and even strangers can be painful for the parents of these babies. The usual smiles of others often turn to looks of discomfort and surprise. Infants with facial deformities also may have substantial feeding difficulties and impaired speech development. Speech difficulties, in combination with abnormal facial appearance, can heighten parental stress and decrease acceptance from society when repair of a cleft lip and palate are delayed.
Early repair of cleft lip and palate deformities during the neonatal period improves parent-infant bonding; aids in feeding, which promotes growth; and has positive effects on speech development. Cause and Effect Kirschner and la Rossa, 2000 stated that approximately 60%-80% of children born with cleft lip and palate are males. Female have the higher frequency of isolated clefts of the secondary palate. Unilateral cleft are nine times more common than bilateral clefts and occur twice as frequently on the left side. Isolated bilateral cleft lip is common; approximately 86% present with palatal clefts.
Approximately 68% of unilateral cleft lip has an associated palatal cleft. Jeneby (2006) stated that, there are many causes for of cleft lip and palate. Problems with genes passed down from one or both parents, drugs, viruses, or other toxins can all cause such birth defects. Cleft lip and palate may occur along with other syndromes or birth defects. A cleft lip and palate can affect the appearance of one’s face, and may lead to problems with feeding and speech, as well as ear infections. Problems may range from a small notch in the lip to a complete groove that runs into the roof of the mouth and nose.
These features may occur separately or together. Risk factors include a family history of cleft lip or palate and other birth defect. About 1 out of 2,500 people have a cleft palate. According to Wilkins-Haug (2003), prenatal diagnosis with fetal ultrasound is not reliable until the soft tissue of the fetal face can be visualized at 13-14 weeks. The sensitivity of fetal ultrasound for facial clefting is almost 100% when Cleft lip and Palate is associated with other structural anomalies. In associated CL/CP, sensitivity may be 50% with CP; an intact lip is most difficult to diagnose prenatally.
According to Merritt (2005), although the majority of clefts are nonsyndromic (have no associated identificable syndrome), associated syndromes occur in varying frequencies according to the specific defect; it is estimated that 10%-50% of children with CL/CP have an associated syndromes. Bender (2000), stated that maternal nutrition, especially folic acid deficiency, has been linked to clefting in humans, as have maternal alcohol ingestion and smoking during pregnancy. Munger (2004), evidence shows that maternal smoking early in pregnancy is associated with a 1. -2 fold increase in the risk for orofacial clefts, especially isolated clefts, with the risk increasing proportionately with the number of cigarettes smoked. According to Murray (2007), emphasized that, scientists supported by the National Institute of Dental and Craniofacial Research (NIDCR), part of the National Institutes of Health, report that women who smoke during pregnancy and carry a fetus whose DNA lacks both copies of a gene involved in detoxifying cigarette smoke substantially increase their baby’s chances of being born with a cleft lip and/or palate.
According to the scientists, about a quarter of babies of European ancestry and possibly up to 60 percent of those of Asian ancestry lack both copies of the gene called GSTT1. Based on their data, published in the January issue of the American Journal of Human Genetics, the scientists calculated that if a pregnant woman smokes 15 cigarettes or more per day, the chances of her GSTT1-lacking fetus developing a cleft increase nearly 20 fold. Globally, about 12 million women each year smoke through their pregnancies.
Murray, a scientist at the University of Iowa and senior author of the study, noted that parents who are considering having a child and need added motivation for the mother to quit smoking might one day be tested to determine their GSTT1 status. Because the fetus inherits its genes from both mother and father, the test would determine the likelihood of the baby developing without the GSTT1 gene to detoxify the cigarette smoke. “A test that indicates the GSTT1 gene is present certainly would not eliminate a baby’s risk of a cleft because many other genetic and environmental factors can be involved,” said Murray. But the opposite result would give the mother one more compelling reason to quit smoking for her own health and for the sake of her child. ” The United States, about one in every 750 babies is born with isolated, also called nonsyndromic, cleft lip and/or palate. The condition is correctable but typically requires several surgeries. Families often undergo tremendous emotional and economic hardship during the process, and children frequently require many other services, including complex dental care and speech therapy. Christiansen and his colleagues (2004) turned to their existing database of kids with clefts, their parents, and siblings.
In all, the scientists analyzed 5,000 DNA samples from both continents – including 1,244 from children born with clefts. Importantly, the families in Denmark and Iowa provided the opportunity to independently confirm the findings in two distinct populations. According to Smith (2010), although multiple genes have been identified as genetic risk factors for isolated, non-syndromic cleft lip with/without cleft palate (CL/P), a complex and heterogeneous birth defect, interferon regulatory factor 6 genes (IRF6) is one of the best documented genetic risk factors.
Johansen et al (2008), emphasized that, a population-based case-control study was carried out in Norway between 1996 and 2001. The aim was to evaluate the association between maternal intake of vitamin A from diet and supplements and risk of having a baby with an orofacial cleft. Data on maternal dietary intake were available from 535 cases (188 with cleft palate only and 347 with cleft lip with or without cleft palate) and 693 controls. The adjusted odds ratio for isolated cleft palate only was 0. 47 (95% confidence interval: 0. 24, 0. 94) when comparing the fourth and first quartiles of maternal intake of total vitamin A.
In contrast, there was no appreciable association of total vitamin A with isolated cleft lip with or without cleft palate. An intake of vitamin A above the 95th percentile was associated with a lower estimated risk of all isolated clefts compared with the 40th–60th percentile (adjusted odds ratio = 0. 48, 95% confidence interval: 0. 20, 1. 14). Maternal intake of vitamin A is associated with reduced risk of cleft palate only, and there is no evidence of increased risk of clefts among women in our study with the highest 5% of vitamin A intake.
Bethesda (2010) stated that, a birth defect is a problem that happens while a baby is developing in the mother’s body. Most birth defects happen during the first 3 months of pregnancy. One out of every 33 babies in the United States is born with a birth defect. Jones (2002) stated that, the concept that infants with CL or CP are at increased risk for failure of maternal attachment has recently been challenged. In few studies, maternal-infant attachment was not negatively affected when measured at 1 year.
Abraham (2006) sited that, in the early weeks of development, long before a child is born, the right and left sides of the lip and the roof of the mouth normally grow together. Occasionally, however, in about one of every 800 babies, those sections don’t quite meet. A child born with a separation in the upper lip is said to have a cleft lip. A similar birth defect in the roof of the mouth, or palate, is called a cleft palate. Since the lip and the palate develop separately, it is possible for a child to have a cleft lip, a cleft palate, or variations of both. Treatment Sanberg et al. 2002), emphasized that CP repair was previously postponed until a later age than the repair of the CL to take advantage of palatal changes that take place with normal growth. With advanced surgical and anesthesia techniques, many surgeons are currently performing palatal repairs in the neonatal period. According to Merrit (2005), CP repair was previously postponed until a larger age than repair of the CL to take advantage of palatal changes that occur with normal growth. With advanced surgical and anesthetic techniques, many surgeons are performing palatal repair in the neonatal period.
According to Magallona (2008), cleft lip surgery also known as Cleft Palate Surgery restores the lip anatomy of individuals with inborn deformities, making it as normal as possible. Cleft lip or Cleft Palate is a congenital malformation that happens during the period of upper lip development. According to Parkash (2003), cleft lip with or without cleft palate (CL/CP) is one of the most common structural birth defects, with treatment including multiple surgeries, speech therapy, and dental and orthodontic treatments over the first 18 years of life.
Providing care for these patients and families includes educating patients and parents about the genetics of CL/CP, as well as meeting the immediate medical needs. Congenital Anomaly According to Healthline (2005), a congenital anomaly may be viewed as a physical, metabolic, or anatomic deviation from the normal pattern of development that is apparent at birth or detected during the first year of life. Under this definition, Mendelian genetic disorders (e. g. , phenylketonuria), chromosomal abnormalities (e. g. , Down syndrome), tumors (e. g. , Wilms’ tumor),infections (e. g. rubella, toxoplasmosis, herpes virus, cytomegalovirus, HIV, and syphilis), exposure to teratogenic agents (e. g. , cocaine, tobacco, or alcohol), maternal disease (e. g. , maternally transmitted autoantibodies, phenylketonuria), and pure bad luck or accident (e. g. , a twisted umbilical cord) can all contribute to the development of a congenital anomaly. It is important to determine which of these predisposing conditions have led to the anomaly, because knowledge of the etiologic agent or agents influences not only therapy, but also prevention in the case of future pregnancies. Human Development
According to Advocate for Youth (2008), human development is a lifelong process of physical, behavioral, cognitive, and emotional growth and change. In the early stages of life—from babyhood to childhood, childhood to adolescence, and adolescence to adulthood—enormous changes take place. Throughout the process, each person develops attitudes and values that guide choices, relationships, and understanding. According to Krueckeberg (2000), one study found that children with CL/CP were at greater risk for developmental problems during the second year of life than previously expected.
Nutrition Lawrence (2005) stated that, the infant with CL with or without CP should not go hungry, and the mother should not spend hours struggling with an unsuccessful system. Hooper (2007) emphasized that, squeezable bottles appear easier to use than rigid feeding bottles for babies born with clefts of the lip and/or palate, however, there is no evidence of a difference in growth outcomes between the bottle types. There is weak evidence that breastfeeding is better than spoon-feeding following surgery for cleft.
There was no evidence to suggest that maxillary plates assist growth in babies with clefts of the palate. No evidence was found to assess the use of any types of maternal advice and/or support for these babies. Lawrence (2005), emphasized that, there is evidence that breast-feeding infants with CL/CP is protective for otitis media. Dental Care Keach (2006), reveal that, a child with a cleft lip/palate requires the same regular preventive and restorative care as the child without a cleft.
However, since children with clefts may have special problems related to missing, malformed, or malpositioned teeth, they require early evaluation by a dentist who is familiar with the needs of the child with a cleft. Speech According to Karnell (2000), it is common for children who are born with a cleft palate to have speech problems at some time in their lives. Over half of them will require speech therapy at some point during childhood. However, many children who are born with a cleft palate develop normal speech by the age of 5. THEORETICAL FRAMEWORK Neuman’s Systems Model
Betty Neuman (Neuman ; Fawcett, 2002), a community health nurse and clinical psychologist, developed a model based on the individual’s relationship to stress, the reaction to it, and reconstitution factors that are dynamic in nature. Reconstitution is the state of adaptation to stressors. Neuman views the client as an open system consisting of a basic structure or central core of energy resources (physiologic, psychologic, sociocultural, developmental, and spiritual) surrounded by two concentric boundaries or rings referred to as lines of resistance.
The lines of resistance represent the internal factors that help the client defend against a stressor. Outside the lines of resistance are two line of defense. The inner or normal line of defense, depicted as a solid line represents the person’s state of equilibrium or state of adaptation developed and maintained over time and considered normal for that person. The flexible line of defense, depicted as a broken line, is dynamic and can be rapidly altered over a short period of time. It is a protective buffer that prevents stressors from penetrating the normal line of defense.
Certain variables can create rapid changes in the flexible line of defense. Neuman categorizes stressors as intra-personal stressors, those that occur within the individual; interpersonal stressors, those that occur between individuals and extrapersonal stressors, those that occur outside the person. The individual’s reaction to stressors defends on the strength of the lines of defense. When the line of defense failed, the resulting reaction depends on the strength of the lines of resistance. As part of reaction, a person’s system can adapt to a stressor, an effect known as reconstitution.
The neuman model emphasized the three stressors that will be a good explanation to the study. First the intrapersonal stressor, which occurs through the individual like the mother, may blame their self for having with a child deformity like cleft lip. It can feel anger and hate for themselves that complicate the situation. Think some inquiry how it happens during their pregnancy. Second the interpersonal stressor can occur both individual, the stress may feel both the mother and the child, the child attention focus on cleft, asking why it happen to his/her that lead to low self esteem and feel that they are different from others.
And lastly the extrapersonal stressor, occur outside the person, it talk about the crowds that affect the child socialization to other people and also to the mother itself that depend to the others may say to the present condition of the child. Nursing intervention focused on retaining or maintaining the system stability. These interventions are carried out on three preventive levels: primary, secondary, and tertiary. Primary prevention focuses on protecting the normal line of defense and strengthening the flexible line of defense.
Secondary prevention focuses on strengthening internal lines of resistance, reducing the reaction, and increasing resistance factors. Tertiary prevention focuses on re-adaptation and stability and protects reconstitution or return to wellness following treatment. Betty Neuman’s model of nursing is applicable to a variety of nursing practice settings involving individuals, families, groups, and communities. RESEARCH PARADIGM Major Theme: * Reverse upward Minor theme: * Acceptance * Patience * Positive thinking * Support Major Theme: * Reverse downward Minor Themes: * Self Pity * Depression
Gather data through; * In-depth interview using semi-structured question * Actual observation * Audio recording * Coding of data * Cool and warm analysis Characterized the lived experiences of the mother whose child has congenital anomalies, specifically cleft lip. INPUT PROCESS OUPUT FIGURE NO. 1 RESEARCH PARADIGM DEFINITION OF TERMS Acceptance. One of the minor the theme. Cleft lip. Is a congenital anomaly that will be present at birth. Depression. One of the minor theme of the study. Development. The growing to maturity of the child. DNA. It identify the genetic information of human.
Fear. One of the minor themes of the study. Gene. A hereditary unit consisting of a sequence of DNA that occupies a specific location on a chromosome and determines a particular characteristic in an organism. Needs. A necessity to live a healthy life. Orofacial clefts. A congenital malformations characterized by incomplete formation of structures separating the nasal and oral cavities: lip, alveolus, hard and soft palate. Orthodontics. The dental specialty and practice that correct irregularities of the teeth, as by the use of braces. Patience. One of the minor themes of the study. Phenylketonuria (PKU).
A genetic disorder that is characterized by an inability of the body to utilize the essential amino acid, phenylalanine. Positive thinker. One of the minor themes of the study. Self Esteem. An overall evaluation or appraisal of his or her own worth. Self pity. One of the minor themes of the study. Socialization. A person activity towards other and in society. Supportive. One of the minor themes of the study. Ultrasounds. A device use to detect abnormality during pregnancy like cleft lip. Chapter III REASEARCH METHODOLOGY This chapter presents and describes the methods and procedures to be utilized in the research study.
It will include the Research Design, Locale and Population of the Study, Description of the Respondents, Data Gathering, Instrumentation and Procedure. It also determine the different techniques in gathering some information regarding the topic, which requires strategy and styles that are needed to apply in the description of the study. RESEARCH DESIGN Qualitative Research Qualitative research is elastic and flexible and is concerned with the subjective meaning of one’s life experience. It focuses on insights or perception of individuals of the phenomenon under investigation.
Qualitative research involves an emergent design, one which takes from in the field as the study unfolds. (Polit et al, 2004) Phenomenology deals with subjective consciousness. Phenomenological research probes into the human experience to illuminate the complexity of individual perception. It is aimed at interpretive understanding. The general design for research consists of three phases. These include tentative conceptualization and general exploring of dimensions, filling in or checking leads, and confirmation of prototypal description. The content of phenomenological research consists of three types of questions.
These include basic inner processes experienced by everyone at some point in life; experiences believed to be important sociological or psychological phenomena of our time; and changes or transitions that are very common or of special importance. Phenomenological research is valuable to empathetic understanding. It is phenomenology because it interprets the study of human experience. The aim is to examine and clarify human situations, events, meanings, and experiences “as they spontaneously occur in the course of daily life. Byrne (2001) First, we choose to conduct a qualitative research because it focuses on human behaviors.
It seeks to answer the questions why and how of its topic through the analysis of unstructured information -things like in-depth interview, observation and recording videotapes. Aside from that qualitative research doesn’t need a large number of populations. It can be conducted even if you only have 1 or more participants. It is also used to gain insight into people’s attitudes, behaviors, concerns, motivations, aspirations, culture or lifestyles. Second, we choose phenomenological studies under qualitative research because we intend to focus on the experiences of the mother with a cleft lip child.
Phenomenological approach seeks to describe daily living experiences. RESEARCH SITE The study “Surfacing the Lived Experience of Filipino Mothers: A Child with Cleft Lip”. The locale of the study will be held at Valenzuela City. The total participant is 3 mothers. DESCRIPTION OF THE RESPONDENTS The participant is 3 mothers of a child with cleft lip at the age of 3-10 years old. The mother ages from 28-45 years old. The first participant is Mrs. Nenita Federipe, 45 yrs old and a housewife, a resident of Brgy Sabinp Alley Valenzuela City.
Her son name is John Daniel Federipe, 10 yrs old of age. The second participant is Mrs. Jenalyn Guillermo, 29 yrs old and a secondary science teacher in profession and a resident of Brgy Tanguile St. Villa Liwayway Valenzuela City. Her daughter name is Pan Guillermo, 7 yrs old of age. The third participant is Mrs. Isabel Sarto, 48 yrs old and a housewife, a resident of Brgy Mabolo Valenzuela City. Her son name is Rey Angelo Sarto, 4 yrs old of age. Interviews conducted to solicit information not specified in the questionnaire and for clarifications of details vaguely written in the questionnaire.
DATA GATHERING, INSTRUMENTATION AND PROCEDURES As the research is qualitative, various methods for data collection employed such as: consent, observation, personal interview and conversations with the participants. Schedule will be adapted for the collection of primary data. Semi-structured questionnaire used in this study in the form of open ended questions. Open ended questionnaire requires participants to answer in their own words. The answer to open-ended questionnaires is much more difficult to tabulate and analyze but provide more information than the survey form to collect.
Data collection is especially useful for documenting the actual progress other course development and may affect on the process of designing and implementing the program. Since the study is qualitative, in-depth interview was utilized as the research instrument in the study. Interviews are a far more personal form of research than questionnaires. In the personal interview, the interviewer works directly with the participants. Unlike the surveys, the interviewer has the opportunity to probe or to ask follow-up questions. And, interviews are generally easier for the participants, especially if what are sought are opinions or impressions.
Interviews can be very time consuming and they are resource intensive. The interviewer is considered a part of the measurement instrument and interviewers have to be well trained in how to respond to any contingency. SAMPLING TECHNIQUE The researcher used purposive sampling technique in the study, because purposive sampling starts with a purpose in mind and the sample is thus select to include people of interest and exclude those who do not suit the purposive. Subjects are selected because of some characteristic like the two mothers having a child cleft lip during their growth and development. DATA ANALYSIS
The process of evaluating data using analytical and logical reasoning to examine each component of the data provided. This form of analysis is just one of the many steps that must be completed when conducting a research experiment. Data from various sources is gathered, reviewed, and then analyzed to form some sort of finding or conclusion. Hinson (2004) clarifies the significance of the units chosen to measure behavior-environment relation, showing how issues of scale and level analysis bear upon both ontogenic and phylogenic selection and elucidate some differences between behavioristic, mechanistic and mentalistic approaches.
Furthermore, units extended in time, place and perhaps complexity enable the analysis of complex and symbolic behavior, including behavior characterized by “traits language” which is usually viewed as beyond the behavioral pale. The repertory grid is a technique for identifying the ways that a person construes (interprets/ gives meaning to) his or her experience. It provides information from which inferences about personality can be made, but it is not a personality test in the conventional sense.
Behavioral specificity is important. Careful interviewing to identify what the individual means by the words initially proposed, and careful consideration of the ratings the client wishes to use to position elements on constructs in order to express that meaning precisely, are required. Cool Analysis is the process of culling significant statement, extracting response related to the topic and deleting response which are not significant. Warm Analysis is the grouping, sorting and giving name to the theme.
Repertory grid construction. Through the data collected, the researchers carefully analyze all the information gathers through in-depth interview using semi-structure questionnaire. It provides a significant data that will answer the question to seek clarification. CHAPTER 4 RESULT AND DISCUSSION As a Qualitative research under the phenomenological studies, the identification of the lived experience of Filipino mothers having a cleft lip child is the main concern of this study as presenting the gathered data. Cool and Warm Analysis
The richness and thickness of the key informants experience has made the researcher to rise up with the theme eidetic of the lived experience of Filipino mothers with a cleft lip child. Using the cool and warm analysis, two major themes emerged. The feeling and emotion of the (3) three mother engaging in caring to their child as the key informants which provide all the necessary information that the researcher needed for this study. Through this, the researchers cope up with the central themes: Reverse Upward and Reverse Downward.
The researchers choose the Hours Glass Model to represent the major and minor theme of this study. Therefore the upper base of the glass is the Reverse Upward and the lower base is the Reverse Downward as the major theme respectively. The falling sand represents the Reverse Downward that coped up with minor themes; self pity or fear and depression that show the feeling of the mother when there’s a problem arises regarding with the child. The semi-clear glass filled with sand represent the Reverse Upward theme that emerged, minor theme include acceptance, patience, positive thinking and support.
This means that there enlightenment or hope beyond the condition of the mother to their child. The pictural representation of the identified major and minor themes of this study is summarized in the “Hours Glass Model Eidetic of the Lived Experience of the Filipino Mother’s having a Cleft Lip Child” (Figure 1) REVERSE UPWARD D REVERSE DOWNWARD Figure 1. Hours Glass Model Eidetic of the Lived Experience of the Filipino Mother’s having a Cleft Lip Child Reverse Upward The participants are being optimistic for having a child with abnormality such as cleft lip.
The moving upward stage are characterized by the theme as follows; acceptance, patience, positive thinker and supportive. Acceptance The participants truly accepted the child beyond their abnormality. As the insight focus, they learned to accept the child as God gift to them. As key informant noted; Participant 1. “ wala kang magawa kung hindi tanggapin mo nalang kung ganyan, regalo sya ng Diyos sa akin” Participant 2. “ normal naman sya, madali naman tanggapin yun, may solusyon naman sa ngayon diba” Participant 3. ok lang na ano, tanggapin,basta tanggap ko sya yun ang binigay ng Diyos eh” Patience The participants expressed the act of patience to their child as they provided the optimum care to the child needs for survival. As key informant verbalized; Participant 1. “ayun kailangan may pasensya, malawak ang pasenya kasi nanay ka eh,andyan nanaman may gagawin ka,lalabhan na naman 3 kumot kasi useless diaper sa kanya kasi nililihis nya yung ari nya. ” Participant 2. “ hindi sya maka suck sa bote nya, dinadrop naming yun minsan sa tsupon” Participant 3. yung ano, yung pag-aalaga mo sa kanya ng halos 15 hours” Positive Thinker The feelings of the participant emerged with this, as they looked the positive outcome over the negative one through engaging the determination in caring their child. As the key informants noted; Participant 1. “syempre si God unang-una kasi wala yun,wala kang kakapitan, na wag kang magkakasakit maaaruga mu sila” Participant 2. “ open ang isip ko, open minded, hindi negative siguro,hindi nag-iisip ng hindi maganda” Participant 3. “nagbi2gay lakas sa akin yung anu, pagmamahal ko sa anak ko, “ Support
The participants were being supportive to the child in terms of encouragement and emotional support as they interact to the people around them that will boost their self esteem and personality. As they verbalized; Participant 1. “ syempre pupurihin mo yung ano, kung anung maliit na bagay na ginagawa nya,iappreciate mo” Participant 2. “ pag may nagsabi sa kanya na ang panget mo,may ganyan ka, ang isasagot mo hindi maganda ako” Participant 3. “ ang kanyang pangangailangan sa pamamagitan ng anu, tulong din ng asawa ko financial nya, suporta nya,emotional” Reverse Downward
This are times were the participants felt of giving up. The depressing situations have been encountered through the negative insight in life. Self Pity and Fear The feeling of pity and fear of the participants to their child are directed with this through the situation that gives them certain unconsciousness. As the key informants noted; Participant 1. “ inaaway sya minsan sa school tapos binabump, ginaganun talaga, naaawa ako eh para bang aping-api sya” Participant 2. “ normal naman sya, pwera nalang kung may nanunukso” Participant 3. kabado ka baka anu mangyari sa kanya,lumala yung sakit nya” Depression The participants were depressed and felt guilty when they first knew that their child has cleft lip. As key informant verbalized; Participant 1. “ mahirap nga eh, kasi andun yung tanong na bakit? , tapos umiiyak ako kasi hindi ako makapaniwala, sinisilip ko sya sa window yung maliwanag” Participant 2. “ iniiyakan ko sya kasi kawawa sya, dahil nasabi ko hindi sya normal tska kung pano sya tatratuhin ng ibang tao” Discussion Most kids experience teasing at some point and it can be very difficult for them to handle.
Kids with a cleft lip or other physical differences can be easy targets because the differences are so visible. But you can help your son by encouraging him to express how he feels, showing him that you understand, and talking through some strategies for dealing with it. For example, teach him to be assertive (but not aggressive) and to use a proud voice to tell the child who is making fun of him to stop. Other strategies might include ignoring or walking away, finding a “safe” person or a friend to be near, or telling a teacher or another adult.
Some kids like to think of short phrases or jokes to say in response to teasing, but remind your son not to tease back, fight, or say something hurtful in return, which can only make the situation worse. You also can help him become more resilient by offering your support, and encouraging activities and friendships that develop his strengths. Get him involved with organized activities — like music or sports — that he enjoys and where he can thrive. (Lyness, 2010) Many studies indicate that parents of children born with medical deformities experience a degree of psychological distress.
This assumption has been documented in several studies that show that a child’s illness seems to, very quickly, affect and change their parents’ psychological well-being. (Azarnoff, 2000) CHAPTER 5 SUMMARY OF FINDING, MODERATUM GENERALIZATION AND RECOMMENDATION Summary of Findings The interviews were conducted at Valenzuela City last July 17, 2011. It’s obtained to solicit information necessary for the research process that answers the question. The first participant is Mrs. Nenita Federipe, 45 yrs old and a housewife, a resident of Brgy. Sabino Alley Valenzuela City. Her son name is John Daniel Federipe, 10 yrs old of age.
The second participant is Mrs. Jenalyn Guillermo, 29 yrs old and a secondary science teacher in profession and a resident of Brgy. Tanguile St. Villa Liwayway Valenzuela City. Her daughter name is Pan Guillermo, 7 yrs old of age. The third participant is Mrs. Isabel Sarto, 45 yrs old and a housewife, a resident of Brgy. Mabolo Valenzuela City. Her son name is Rey Angelo Sarto, 4 yrs old of age. Results of in-depth interview and actual observation showed that the mother spoke knowledgeably and about cleft lip. Throughout the interview they emphasized on how they provide the needs of the child as they accepted the child condition.
Despite of this, they give so much understanding, care and love as they show their support to boost the child self esteem and personality. As they nurture their child, they provide the specific things to do in having a normal life as the other child can do. To conclude, all the various concerns, the mother-participant in this study was coping with the presence condition and care of their child with cleft lip. They adjusted with the stress experiences to their child to the psychological factors like social functioning in the community.
Moderatum Generalization Based on the findings extracted from the experience of the mothers having a child with cleft lip, major and minor themes rise up. Through the major themes: Reverse Upward and Reverse Downward the researchers realized that the mothers with a cleft lip child experiencing mixed emotion in caring their child condition. At first they felt depress and fear when they know the existing abnormality of the child and even worse when there’s a problem encountered as the physiologic and psychosocial events are the contributing factors.
Meanwhile, by the mother is being an optimistic one they accept the child condition as God gift to them, to be cared, understand and love as they can. At this point the mother shows support that not burden and frustrate the child personality. All the dedication and encouragement of the mother to their child give an extreme outlook in life as they faced the challenges of life. Recommendation In light of the research findings, recommendations regarding support systems, programs, services and research, are proposed. 1.
For the family members especially to the mother, it is important to strengthen and enhance the self esteem of the child to ensure the well-being. Shows support and appreciate the things they do, in this case the child perception will be focus that their not different from other. 2. For the community, don’t be judgmental to the person has an abnormality, instead communicate with respect to them. 3. For the health institution and government, provide a necessary fund for this cleft lip patient to correct their deformity by means of surgery and other intervention they needed to improve self functioning. . For the health care provider, as we cater this patient with the level of understanding in providing the optimum care to our patients as advocate of health. Focus in caring them instead of their physical deformity that will help in strengthening their personality. 5. Lastly to the future researcher, as this study will be used as reference for other qualitative research, give emphasis to the existing condition and other intervention for the improvement of life and other professionals to lessen the stress to experience.
Reflection In the journey of this study, the researcher realized that how a mother is sad and depress when she knew that her child has a congenital anomaly specifically cleft lip. They felt burden and embarrass when somebody insult or bully their child condition. As a mother, when their child felt that they are different from other or “asking what my situation is”, they felt hopeless in that situation to answered.
But as time pass by they push to be strong enough as they faces the difficulties in life in caring their child as they fully accept the condition with God’s guidance. The researcher deeply open their mind not to be judgmental to this people but understand their situation or problem as common human being to be socialize and not to isolate. The researchers want to salute this mother in taking their child at their best and give all the patience, support, care and most of all the love that this child needed.