|Year : 2017 | Volume
| Issue : 2 | Page : 149-153
Beliefs and perceptions that impair cleft care treatment in Madagascar: A qualitative study during humanitarian mission
Nirina Adrien Jean Vivier Mandrano, Yasuyoshi Tosa, Tomoaki Kuroki, Nobuhiro Sato, Shinya Yoshimoto
Department of Plastic Surgery, Showa University, Shinagawa-ku, Tokyo 142-8666, Japan
|Date of Web Publication||11-Aug-2017|
Nirina Adrien Jean Vivier Mandrano
Department of Plastic Surgery, Showa University, 1-5-8 Hatanodai, Shinagawa-ku, Tokyo 142-8666
Source of Support: None, Conflict of Interest: None
Context: During humanitarian cleft care mission in developing countries, a considerable noncompliance of the patient remains evident despite the provided medical support. According to the literature, social background and beliefs are some of the factors that hamper cleft management in these areas. Aims: In this study, we investigated on these impairments for a better approach to cleft care in Madagascar. Settings and Design: This is a qualitative study conducted in Clinic Ave Maria, Antsirabe, Madagascar, which interviewed parents and patients. Subjects and Methods: One adult patient and nineteen parents of a patient with cleft lip and palate (CLP) were interviewed for a qualitative study. An open-ended, closed-ended semistructured interview was conducted. Results: Analysis of the interview result and a literature discussion were performed. The most believed cause of cleft lip was supernatural forces, diet, and a curse, leading to a strong self-blame and shame inside the community. Thus, CLP is thought to be a supernatural disease, which cannot be totally healed by injection and surgery. A belief leads to a delay, denial of medical care, and/or ignorance and rejection of new explanations. Conclusions: Social background and beliefs of our Malagasy community have a considerable impact on how the patients perceive cleft deformity. These perceptions strongly influence the patient's compliance to medical care. Considering education as a part of the treatment plan during a humanitarian mission can modify the patient's attitude and improve their motivation to a better treatment outcome.
Keywords: Cleft lip and palate care, humanitarian, Madagascar, perception and belief
|How to cite this article:|
Mandrano NA, Tosa Y, Kuroki T, Sato N, Yoshimoto S. Beliefs and perceptions that impair cleft care treatment in Madagascar: A qualitative study during humanitarian mission. J Cleft Lip Palate Craniofac Anomal 2017;4:149-53
|How to cite this URL:|
Mandrano NA, Tosa Y, Kuroki T, Sato N, Yoshimoto S. Beliefs and perceptions that impair cleft care treatment in Madagascar: A qualitative study during humanitarian mission. J Cleft Lip Palate Craniofac Anomal [serial online] 2017 [cited 2021 Oct 16];4:149-53. Available from: https://www.jclpca.org/text.asp?2017/4/2/149/212831
| Introduction|| |
Religion and beliefs are one of the factors that affect the social perception and the reaction to any health problem as well as the utilization of the health services. Furthermore, humanitarian mission conducted in developing countries faces the influence of local belief and social background which are often a hampering factor a hampering factor, especially when a patient refuses treatment even when that is made financially affordable or free. Such reality can be observed with cleft lip and palate (CLP) patients, among so many other illnesses, in developing countries. A person with CLP presents with a facial deformity that sets them apart from what is considered as “normal” or “usual” in the society. This generates a negative feedback for the patient, according to the perceptions of the society towards that person., Each society has its own way to explain the causality and the appropriate care for such deformity according to its understanding. Those beliefs and perceptions affect a set of social reactions toward an individual with CLP and one's family giving them either a positive or a negative image of themselves. Thus, beside positive feedbacks, negative social feedback engages the individual into a defensive behavior to be less stigmatized, to be less discriminated, and/or to maintain social acceptance., Several studies have been published attempting to describe the relation between CLP treatment and the influence of cultural perception in many countries. The etiology of CLP has been attributed to different phenomena depending on cultures: solar eclipses during pregnancy, previous miscarriage, starvation, sins from previous life, curse, transgressions of the ancestor's rules or rituals, God's will or punishment, certain behaviors during pregnancy such as fishing, laughing on somebody with cleft, and eating rabbit meat among others.,,,,, As a direct result on such etiology, negative social feedback affects the individual's psychological development resulting into anxiety, lower self-esteem, or even results in lowering the family position in some societies., Furthermore, ostracism and shame are brought to the individual with CLP, this can also occur to the entire family; thus, the public presentation of the child is avoided, and/or infanticide is practiced in some cultures.,
In Madagascar, religion and beliefs have obvious influences when considering health problems and health care. Circumcision, for example, is done for religious and cultural matters, rather than for scientific reasons. At present, although modern medicine has been progressing in Madagascar, the belief in magic and supernatural events is also well preserved and individuals often tend to seek cure through traditional means. In fact, many kinds of traditional healers are commonly asked for cure in Madagascar depending on the problem: tromba (healers with the ancestor's spirit), mpisikidy (faith and curse or witchcraft), mpanandro (a sort of astrologist), mpanotra (masseuse), mpanao raokandro (herbalists), renin-jaza (midwives), to name a few. However, the understanding of both patients and health-care professionals about that cultural beliefs and perception surrounding the pathology have an important effect on the quality of the treatment outcome.,,, The present study is a qualitative study aiming to investigate the cultural perception of CLP in Malagasy patients and family that we encountered during our mission, to organize a better approach.
| Subjects and Methods|| |
The mission took place at a local clinic in Antsirabe, Madagascar. The research proposal was reviewed and approved by the University Institutional Review Board where the senior author is affiliated. Twenty candidates, operated during the mission, were interviewed to collect information about their general knowledge concerning cleft causality and its treatment. An open-ended, closed-ended semistructured interview was conducted with a researcher speaking the local language (a member of the mission's caregivers). The questionnaire was categorized into four parts: (1) individual information, (2) condition of the delivery, (3) information about cleft (source, causality, care), and (4) information about the cleft treatment (knowledge, expectation) [Annexure 1] [Additional file 1]. Each interview took about 15–25 min, allowing the individual to express themselves with orientation for the open questions. We made sure that the interview was conducted in a private condition, accepting only the patients and/or the patient's parents to be present in the room. In some cases, the patient's grandparents assisted the interview as the mother was not trusted to be mature enough by the family's elder person, and/or the father was not present. The interview was conducted using local language. The interview results were analyzed and discussed with literature to understand the implied behaviors that impairs the adherence to the proposed cleft treatment. The adult patient and parents of young patients were informed that participating in the interview would not affect whether they or their child was chosen to receive surgery. Verbal consent was received before all interviews.
| Results|| |
Twenty individuals were interviewed for the study. There were eleven male and nine female individuals, the average age was 47.8 months (ranged from 8 months to 30 years). There were 16 children with cleft and alveolus with or without cleft palate, three cases of isolated cleft palate, and one isolated cleft lip.
Conditions of birth
Among the individuals, twelve were born in a medical facility (hospital/clinic), eight were born at home, seven with the help of a matron, and one delivered by the father himself (without any medical training).
The main profession of our individuals' parents was cultivator and manufactures. None of the parents were employed in a profession which required education level to be high school or above.
First source of information about the malformation
Five parents heard the first announcement of the malformation from a close person in the family, thirteen from a health worker (from which three were delivered at home), and two from a matron.
Antecedent of cleft in the family
Five individuals had an antecedent of cleft in the family. Two individuals only searched for a similar case in their families after consulting a health worker and hearing about a probable heredity.
First reaction and will to investigate about the malformation
Two of the parents admitted to culpability (self-blame), two parents took the heredity as a curse put on the family. Fourteen parents responsibility of taking care of the child. One family decided to hide their child from the society and one child was rejected by the father. After the announcement of the malformation, 16 parents were curious to get more information about the malformation while four parents did not want to investigate further.
Believed cause and source of the information
None of the parents could give a scientific explanation of how and why cleft occurs, even after consulting a health worker. Only two of the parents were able to give a semblance of scientific response, arguing about taking drugs during pregnancy and heredity. The majority believes in supernatural causes which are divided into three major groups (1) God's will and/or the (Fady) (a social taboo, sacred laws of the ancestors), a local folkloric figure; (2) heredity; and (3) diet.
- God's will: Mostly taken as a curse or a punishment
- Folklore: Mainly based on the Fady, such as laughing at a person who has cleft lip during pregnancy, crossing an axe forgotten on the ground, crushing a pumpkin during pregnancy, tearing a Yam or some other leaves during pregnancy, or the husband of a pregnant woman creates a breach in the paddy field to drain the water.
- Heredity: This is more taken as a curse that passes from generation to generation
- Diet: Eating beef snout (vavanomby, in Malagasy), consuming rabbit meat during pregnancy, taking strong medicine during pregnancy (no specific drug cited), and father's overconsumption of alcohol.
The main source of those beliefs was a trusted person in the family and/or in the society rather than a health worker or any other random source of information.
Knowledge about cleft treatment before coming for the clinic
Seven parents knew about the treatment of CLP before coming to the clinic. Nine parents did not know about a medical treatment. Among those, six ignored that cleft could be treated surgically. Seven knew about the treatment only after consulting at the clinic. Two of the parents heard about the mission through media, three others heard about the mission from a health worker and came to the clinic by curiosity. Eleven of the parents had an overview of the surgical result before coming.
Expectation for the treatment result
The expectation for the treatment was mainly for social integration (eight individuals for everyday life and three individuals for school) followed by functional improvement in feeding and speech for cleft palate (four and two respectively) and one for esthetic improvement (isolated incomplete cleft lip). Two parents did not express any clear expectation. Two of the parents expected physical strength through feeding improvement after the surgery. Functional improvement was expected only after a conversation with a health worker and brief explanation about cleft deformity.
| Discussion|| |
The social understanding and negative reaction against CLP engages individuals and/or their family to a certain behavior aiming to maintain social consideration or to respect divine balance. The most believed cause of cleft lip was, as mentioned at priori, supernatural forces, diet, and curse, which lead the parents and family members to a strong self-blame and shame inside the community. Four of the individuals did not search for more information about the deformity. Three of them were delivered outside the hospital: one delivered by the father himself and two delivered by a matron. Both of those parents believed that the malformation was caused by God's will and/or a punishment resulted of the misbehavior against the Fady and did not expect for specific result from the operation. One individual came to get the treatment by oneself at 30 years old (only at the adult age) after seeing the treatment result of another patient. Even though one had a family history of cleft, during the interview, the patient admitted to believe that it is God who decided to give that burden to the family. That patient knew about the treatment before coming and was expecting speech improvement as a functional satisfactory result (isolated cleft palate). Three of the five individuals who have cleft antecedent in the family accepted heredity as the probable cause of cleft while two others believed in the local folklore the Fady. Despite the family antecedent of malformation, two of our individuals did not give birth in a medical facility. Fourteen of our individuals heard about CLP from a health worker. Two individual's parents (10%) did not want to investigate more about cleft lip without any specific reason. Actually, they believed that cleft occurred according to the local folklore and God's will, they did not know about a probable scientific cause of the malformation. Seven of the parents took their child to the clinic to be treated without knowing what kind of care will be provided to their child. About one-fourth of our individuals first heard about the malformation from a close person and/or respected one in the family, usually an elderly person. The respect to the family's elderly is a very important and valuable principle in Malagasy society. Thus, in such unexpected event as the birth of a child with congenital malformation, it is considered normal to rely on the elder's decision. Usually, the elder is the one in charge of announcing the problem to the family and to decide the appropriate approach to the issue. Despite the parent's feelings, the first reaction of the majority was to do their best to support their child through that faith. Shame and fear of social ostracism pushed some of the parents to avoid the public presentation of the child and one father denied the fact and rejected his child. Such reactions have been reported in some developing societies; in some cases, there are more extreme practices, such as the infanticide., Only two of our individuals expressed self-blame during the interview, however, since the majority of the believed cause was a punishment of misbehavior against the Fady, regret or self-blame was more expected. Nonetheless, the mentioned reason was that those acts of misbehavior could have been done while the mother was not yet aware of her pregnancy; hereby, made some of the individuals consider heredity as a curse put on the family. Among the collected data of the present paper, most believed cause revealed by the interviews was the folklore (the Fady) which is mostly related to God's will since the transgression was not considered intentional. In addition, the consumption of rabbit meat, snout (vavanomby, in Malagasy), the father's overconsumption of alcohol was also mentioned. Those beliefs are quiet similar in many countries, including developed countries a few decades ago.,,,, Two of the 19 parents did not want to ask for either a medical explanation or a further information about one's child's malformation. During the interview, none of none of the parents gave a scientific explanation of the malformation even after consulting a health worker to ask for a treatment. On the other hand, during medical voluntary mission, medical explanations are given in a rush that leaves the patient in confusion or misunderstanding new information. These reactions lead to a delay, rejection, or a noncompliance to the treatment., Forsooth, it is considered dangerous to seek for modern medicine or surgical cure to avoid increasing the wrath of the ancestor or the Gods as reported by John and Micol. As reported by Dagher and Ross, “modern doctors do not take the spiritual side in healing the patient's facial damage; injection and surgery do not take out the root of the problem.” Those reasons among many others can leave the patient or the patient's family with pessimism and depressive condition to seek medical treatment., A treatment that involves many specialties including both medical and surgical fields; furthermore, the surgical treatment does not consist of only one operation for most of the cleft deformities. Fact needs to be informed to the patient and the patient's family to be fully cooperative. Nonetheless, some parents knew about the treatment or have seen the results of the operation on someone from the same social group and took their child to the clinic to be treated. Some individuals ignored the need to undergo general anesthesia, surgery, and have to be hospitalized.
| Conclusion|| |
Each society has different perceptions and beliefs toward CLP malformation. Strong perception that influences the patient's compliance to the proposed medical treatment. Considering education as a part of the treatment plan during humanitarian mission can modify the patient's attitude and improve their motivation to a better treatment outcome. We have learned from this study that education should be considered as a major part of the treatment and not as an optional care. Our next step in this study is to quantify the outcome difference using education as main approach.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
John L, Micol A. Cross-cultural attitudes and perceptions towards cleft lip and palate deformities. World Cult Psychiatry Res Rev 2011;6:127-34.
Weatherley-White RC, Eiserman W, Beddoe M, Vanderberg R. Perceptions, expectations, and reactions to cleft lip and palate surgery in native populations: A pilot study in rural India. Cleft Palate Craniofac J 2005;42:560-4.
Venkatesan S. Socio-cultural dimensions of cleft lip and palate in India. Glob J Interdiscip Soc Sci 2015;4:72-7.
Hutchinson K, Wellman MA, Noe DA, Kahn A. The psychosocial effects of cleft lip and palate in non-Anglo populations: A cross-cultural meta-analysis. Cleft Palate Craniofac J 2011;48:497-508.
Mednick L, Snyder J, Schook C, Blood EA, Brown SE, Weatherley-White RC. Causal attributions of cleft lip and palate across cultures. Cleft Palate Craniofac J 2013;50:655-61.
Dagher D, Ross E. Approaches of South African traditional healers regarding the treatment of cleft lip and palate. Cleft Palate Craniofac J 2004;41:461-9.
Patel Z, Ross E. Reflections on the cleft experience by South African adults: Use of qualitative methodology. Cleft Palate Craniofac J 2003;40:471-80.
Holt GR. Ethical conduct of humanitarian medical missions: I. Informed Consent. Arch Facial Plast Surg 2012;14:215-7.
Kelley JM, Kraft-Todd G, Schapira L, Kossowsky J, Riess H. The influence of the patient-clinician relationship on healthcare outcomes: A systematic review and meta-analysis of randomized controlled trials. PLoS One 2014;9:e94207.
Ross E. A tale of two systems: Beliefs and practices of South African Muslim and Hindu traditional healers regarding cleft lip and palate. Cleft Palate Craniofac J 2007;44:642-8.