LIVED EXPERIENCES OF MOTHERS HAVING CHILDREN WITH CONGENITAL ANOMALIES: A PHENOMENOLOGICAL STUDY

ABSTRACT This qualitative study was conducted to explicate the lived experiences of mothers in caring for their child with congenital anomalies. Caregiving is an evolutionary human life experience within the circle of health illness wherein connections are co-created and expressed in actions of concern, responsibility, and attentiveness, hence, familial caregiving of a child with congenital anomalies as an experience is multidimensional. It is also important to remember that the caring process, while responsive to the childs special needs, should be empowering and not foster too much dependence. The child with disability should be expected to move toward interdependence, acts and evaluates situations on his/her own whenever she is able to make choices, and takes the consequences for the decisions made. Guided by qualitative research methods, participants were sought until data saturation occurred. This qualitative study consisted of 8 participants. Data were collected through recorded open ended interviews and exploratory questions or probes. The analysis included concurrent data collection, constant examination of conceptual interactions, and the conditions under which they occurred. Themes that emerged includes difficulty in providing and maintaining health, distinct means of food preparation, prominence of superstitions and belief in supernatural forces, individualized child care, social and familial conflicts and acceptance and means of coping. Although most of the participants stated that taking care of a child with special needs costs them extra effort, still they consider the event as a blessing and not a burden in life. Most of them believed that God gave them a gift thus, an opportunity to take care for these children because of some certain reasons. Various themes were identified in the study but still they need to be improved, hence, findings are not generalizable.

OBJECTIVES OF THE RESEARCH This study aims to explore the lived experiences of mothers in taking care of their child with congenital anomalies. METHODS In depth recorded interviews were conducted with eight (8) mothers who has a child with apparent congenital anomalies whether it was diagnosed or undiagnosed and treated or untreated. The recorded interviews were later transcribed, translated into English and was checked by a grammarian to ensure accuracy of participants information. The researchers created an informed consent which the participants must be able to understand through explanation by the researchers. Then after being given with the information contained in the consent, a signature by the participant is affixed. During the data gathering procedure, the researchers explained to the participants the flow of the individual interview. The participants were also informed about the purpose of the study, the confidentiality of their identities and their right to refuse or withdraw their participation in the study. The data collected were clustered and interpreted thoroughly based on the participants response during the individual scheduled interview.

DATA ANALYSIS After the data gathering, researchers were able to identified six themes namely difficulty in providing and maintaining health, distinct means of food preparation, prominence of superstitions and belief in supernatural forces, individualized child care, social and familial conflicts and acceptance and means of coping.

CONCLUSIONS The results of this study imply that the participants: 1. 2. Treat their experiences of being mothers of children with congenital anomalies as a blessing rather than a burden in life. Although they had difficulties in providing and maintaining their childrens health, mothers always ensure tha t they provide the utmost care they could ever give even if it would mean additional effort. Believe that having such a child was considered to bring good luck while others said that it is a blessing. Believe that whatever they are going through, they will be able to make it as long as there is guidance from above and that there are no challenges that is big enough to devastate them as long as they have a strong faith in Him. As well as the other family members were able to cope up with the challenges of dealing with people who have little understanding about the childs condition and dealing with family conflicts by the time it arise. Lastly in relation to acceptance and means of coping, the participants were asked how it was like to be a mother of a child with congenital anomalies, most of them said that the Considers the experience as difficult and that it was really tough. Despite the troubles and the hardships they went through, most of them still do believe that having a different child can be considered as a blessing and a gift from God.

INTRODUCTION: Congenital anomaly is any abnormal structural or medical condition that is present at birth. This can be recognized before birth (prenatal), at birth or even long after birth (postnatal). Congenital anomalies include minor physical defect such as birthmark, severe defects like Congenital Heart defect and combinations of either abnormalities affecting several parts of the body (Agim et al., 2011). The birth of the child with major anatomical congenital anomalies alters family functioning in several ways. Parents have to abandon their expectation s of a healthy child and have to cope with the painful experience of raising a severely ill child, either temporary or life-long. The circumstances place a heavy financial, emotional and family burden on parents (Connor et al., 2010). World Health Organization (2012) reported that approximately 3.2 million birth defect related disabilities are recorded every year and congenital anomalies affects approximately 1 in every 33 infants born worldwide. In the Philippines, according to a recent statistical data from the Department of Health, only 0.6 were born with congenital anomalies which comprise 4.8% out of 1,046 live births by the year 2006. Out of 8,001 live births from year 2011-2012 in a government hospital in General Santos City, only 59 cases of congenital anomalies were recorded which comprises 0.73% of the total live birth.

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RECOMMENDATIONS The following are the recommendations formulated by the researchers: 1. To ensure their childs health, the researchers recommend that the participants may seek some additional means to improve their way of providing care such as learning some food recipes that are nutritious and creativity in preparing foods to encourage their child to eat more. Seeking support from government offices which offer assistance in medical and other professional health services and livelihood programs for additional income for the family. 2. The results showed how caregiving responsibilities became one of the main concerns of the family members. With this, conflicts within the family can arise, so the researchers recommend that the family may go through a counseling session to let them understand and see the essence of the situation beyond the negativity. 3. The result should be considered by those who are in the medical field that the importance of understanding the experience of these mothers should be taken into consideration when dealing with them should the need arise. The results also recognizes the growing need for support group wherein the mothers are able to meet with other people who have the same experiences as them and that through this people, they may have better understanding of their childrens current situation. 4. The investigation recommend to future researchers that they may also conduct this type of study to discover the relationship of caregiving roles of mothers of their children with congenital anomalies and the increasing risk of developing stress related effects on health.

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RESEARCHERS:

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Chillen Mae I. Palarpalar, SN Cheysser B. Macadaag, SN Alaina Jane P. Norris, SN Joraine V. Dela Cerna, SN Charles T. Budao, SN Jessa C. Villarta, SN