Methods: Descriptive phenomenology approach by Husserl with purposive sampling technique was used to capture the essence of coping behavior carried out by mother toward their children with FC in Bali, Indonesia. The study was approved by the Institutional Review Board of Udayana University in Bali with approval number 1828/ UN.14.2/ KEP/ 2017. All participants were given a comprehensive explanation of the study, both in writing (written synopsis or information and written informed consent) and verbally. They were invited to sign the consent form and consented to their interview being recorded. Face-to-face in-depth interviews were conducted until the data is saturated by applying the Francis method and using semi-structured interview guide with open-ended questions. Interviews were tape-recorded and field notes were taken following each interview. Data collection process started in August and ran to September 2017. Colaizzi’s (1978) seven steps were used to analyze the verbatim transcripts. Credibility, transferability, dependability, and confirmability by Lincoln and Guba (1994) were applied to ensuring the trustworthiness of results.
Results: Data were collected from 20 mothers who have experience in taking care children with FC, at least 2 weeks after discharge from the hospital or until they were declared free of FC. One cluster theme “fight for freedom” and four subthemes emerged from the analysis: seeking help, fighting alone, turning to a higher power, and protecting completely. The cluster theme explained a set of actions performed by the mothers to maintain their dignity as an independent woman and to be free from loss of self-control caused by their children who suffer from FC. Seeking help is the coping behavior that most of the mothers engaged in, and it is the strategy typically applied when the mothers face a problem. This help-seeking behavior is done to fulfill the desire to share responsibility and seek reassurance or even to ensure that the child will not suffer from serious problems. They use a variety of support systems, such as health care professionals, family, friends, neighbors, co-workers, and the Internet or even the help from shaman. Fighting alone indicates that the mothers were in a period of loss of their ‘healthy child.’ In the midst of this downfall, they struggle to rise even without the help of others. They seem to be generating self-responsibility to build a sense of internal control and mastery. This behavior may be a way to prevent the anxiety and negative emotions from becoming greater. The findings of this study highlight the mothers return to a belief in God since they consider the problems beyond their ability. Although they may be disappointed with their fate, they realize that this problem is one way to reach God. Faith in God is known to help to decrease maternal concerns and lower the life burden of the caregiver since it creates hope and restructures their mind to be more positive. Regarding protecting completely, the mothers saw themselves as the ultimate protector of the child since they did not get help from others. This complex form of prevention performed by the mothers tended to make them overprotective and to do whatever they believe to be true without paying attention to the potential dangers that might arise from this form of response. They may seem selfish and may apply avoidance coping mechanisms just to relieve their suffering from the impact of FC. They may also be aware that it is difficult to cope with FC and that the actions taken will not work, but they may feel that this is the best way to deal with their worries or problems while taking care of their children with FC. As a consequence, the mothers are reluctant to accept negative feedback and information from others.
Conclusion: “Fight for freedom” was perceived as the essence of lived experience of maternal coping behavior toward their children with FC. They were found to use emotion-focused coping more, which made them adapt negatively to problems encountered. The findings emphasize the need for further education and social support to guidance mother to use more adaptive coping mechanisms toward their children with FC.