Download as pdf or txt
Download as pdf or txt
You are on page 1of 11

The Cleft Palate–Craniofacial Journal 51(2) pp.

189–199 March 2014


Ó Copyright 2014 American Cleft Palate–Craniofacial Association

ORIGINAL ARTICLE

Factors Influencing Maternal Mental Health After the Birth of a Child With a
Cleft in Benin and in Switzerland
Stephanie Habersaat, M.A., Ph.D., Camille Peter, M.A., Chloe Hohlfeld, B.A., Judith Hohlfeld, M.D.

Objective: The main objective of the study is to identify practical and cultural factors
influencing the mental health of mothers of children with an orofacial cleft in Benin and to
compare it with a sample of Swiss mothers in the same conditions.
Method: Thirty-six mothers of children with an orofacial cleft in Benin and 40 mothers of
children with an orofacial cleft in Switzerland were interviewed about practical and emotional
aspects concerning their child and their own lives. Then, they completed the Perinatal
Postraumatic Stress Questionnaire and the Beck Depression Inventory.
Results: Mothers in Benin had significantly higher posttraumatic stress and depression
symptoms compared with mothers in Switzerland. Depression symptoms were higher in
Beninese mothers coming from urban areas, in Beninese mothers with few or no other children,
and in Beninese mothers whose child was operated on at a more advanced age.
Discussion: This study stressed the importance of cultural differences in perceptions of
orofacial clefts in order to provide appropriate care to patients and their families. In particular,
wide campaigns of information should help parents to understand the cleft origin and the
medical staff in small dispensaries to provide adequate support and care. This may diminish
anxiety concerning the child’s short- and long-term prognosis. Creation of a Beninese parental
support group for children with clefts and their families could be another way to provide
information and support where multidisciplinary care is not available.

KEY WORDS: orofacial clefts, cultural impact, humanitarian surgery

Despite the development of health care and surgical European medical practices during wartime respond to
practices in emerging nations, some very specialized vital emergency, for Somalian fighters, amputation repre-
domains such as neuro- or maxillofacial surgery are not sented a bodily injury detrimental to human dignity. Many
performed by local physicians. This gap is filled by fighters preferred to die rather than to survive mutilated
international nongovernmental organizations (NGOs; (Brauman, 2010). Even if, from a medical point a view, the
Brauman, 2010). In the beginning of humanitarian surgery amputation was reasonable, it was socially intolerable. This
in sub-Saharan Africa, indigenous caregivers were extreme- example shows the importance of social perception of the
ly rare among occidental medical teams. Confronted with surgical act in different cultures. In the words of the well-
cultural differences, the need to involve local caretakers known French philosopher and practitioner Georges
became obvious for better communication and for transfer Canguilhem (1966), ‘‘Patients are not interested in the
of medical competence in the long term. For example, function of such or such organ threatened by illness, but in
their ‘pace of life,’ this means the relationships and
during the war in Somalia, occidental humanitarian
integration to their environment’’ (p. 96). Humanitarian
surgeons were confronted with hostile reactions of young
surgery is confronted with difficult situations regarding
militiamen following a limb amputation. Indeed, even if
cultural comprehension and may become deleterious,
losing its first objective of ‘‘repairing’’ (Wall et al., 2006;
Ms. Habersaat is Ph.D. Student and Psychologist and Ms. Peter Habersaat et al., 2012). Therefore, it is of great importance
is Psychologist, Department of Child and Adolescent Psychiatry, to study the cultural impact of disease and surgery in the
University Hospital of Lausanne; Ms. Chloe Hohlfeld is Nurse and
Ms. Judith Hohlfeld is Head, Department of Pediatric Surgery,
developing world, as well as potential risk and protective
University Hospital of Lausanne, Switzerland. factors in the development of mental health problems after
This study was supported by Terre des Hommes Foundation, surgery.
Switzerland; the Fondation pour la Psychiatrie de la Petite Enfance,
Switzerland; and Perbonum Foundation, Liechtenstein.
Orofacial cleft surgery is one of these specialized domains
Submitted May 2012; Accepted September 2012. performed by humanitarian occidental teams, especially in
Address correspondence to: Ms. Stephanie Habersaat, Research West Africa’s poorest countries, such as Benin or Togo.
Unit–SUPEA, Rue du Bugnon 25A, 1011 Lausanne, Switzerland. E-
mail shabersaat@bluewin.ch Moreover, as it affects many aspects of daily life and
DOI: 10.1597/CPCJ-51-02.189 concerns a visible deformity, it may have a great impact on

189
190 Cleft Palate–Craniofacial Journal, March 2014, Vol. 51 No. 2

families and communities. Therefore, it is important to and family in an attempt to explain the unexplainable.
study the cultural influence on perceptions of clefts and the For the family, the mother is often assumed to be
impact of cleft surgery on the ‘‘pace of life’’ of Beninese responsible for this situation: She must have done
children and their families. something wrong to deserve this. The child in itself is
not bad but represents a punishment inflicted on the
Orofacial Cleft Management in Benin family in return for some sin committed. For midwives,
the mothers have been bewitched (Saizonou et al.,
In Benin, a large part of the population lives in rural 2006). The child can be seen as a bad omen or a
areas without access to medical care, and so cleft vengeance from a mortal enemy (Habersaat et al., 2012).
prevalence estimation is difficult. However, studies An unrepaired cleft has severe consequences for the
concerning other sub-Saharan countries reported a child’s life, such as difficulties in speaking (Agbenorku
prevalence of 7 per 10,000 births in Malawi (Msamati et al., 2007), chronic otitis media, and mild to moderate
et al., 2000), of 9 per 10,000 in Sudan (Suleiman et al., hearing impairment (Ramana et al., 2005). Along with
2005), and of 50 per 10,000 births in a rural community functional problems, children and adolescents suffering
in Ghana (Agbenorku et al., 2007). Since the latter study from orofacial cleft often face rejection from the
was conducted using a community-based sample, the community and chronic psychological aggression.
high rate of clefts can be explained by genetic bonds
between members of the village and therefore cannot be Rationale for the Study
extrapolated to the whole population (Agbenorku et al.,
2011). Nevertheless, extensive epidemiological studies For 20 years, the pediatric surgery team of the
usually report few differences in cleft prevalence among University Hospital of Lausanne, Switzerland, has
countries (Tanaka et al., 2012). carried out surgical missions in Benin. It is important
In Benin, monitoring of pregnancies by a physician for specialists working in developing countries to
and ultrasound are rare, and most clefts are discovered understand how the cleft is perceived in the local
only at birth. The delivery occurs at home or in local culture. Migrations of populations and mobile surgical
dispensaries, where information concerning clefts is teams are the source of intercultural contacts and
largely absent among occasional caregivers and neigh- collaboration, making it important to identify the
bors helpers (Kodjogbé et al., 1997; Habersaat et al., specific needs of the families so as to better understand
2012). Adequate medical support may not be provided, their anxieties and provide long-term support.
as larger hospitals are usually far away and expensive In Switzerland, pluridisciplinary and long-term care
(Lule and Ssembatya, 1995; Hodgkin, 1996; Borghi et of clefts has proved its positive impact on families and
al., 2003; Habersaat et al., 2012). Indeed, a study the children’s development. Indeed, clefts are detected
showed that in Ghana, a country much more developed early, and extensive information and support are
in medical assistance than Benin, many clefts were not provided to reduce the impact of the shock of the
repaired because of financial barriers (Donkor et al., announcement and help parents and relatives welcome
2007). and accept the child. A continuous follow-up is then
Young infants cannot be fed efficiently; there are no planned from birth to adulthood involving surgeons,
breast pumps or bottles available to help them use orthodontists, psychologists, and psychiatrists. How-
breast milk or palatal prostheses to obdurate the ever, occidental programs of care do not necessarily
communication between mouth and nose. Mothers feed correspond to the needs of Beninese families and
infants with a spoon or cup and have to buy extra milk cannot be implanted without adjustments. Above all,
(Masarei et al., 2007). This can represent an enormous it is crucial to investigate how Beninese mothers
expense for poor families, in which breast-feeding a experience the birth of a child with a cleft and the
child usually continues until 2 years of age. The adverse presence of occidental surgeons who repair it. A better
conditions often lead to loss of weight during the first understanding of the local traditions and cultural
months of the infant’s life, increased susceptibility to viewpoints should help provide a more adequate
infection, failure to thrive, and often death (Jones, therapeutic program and better long-term results
1988). regarding the quality of life of children with a cleft
Moreover, it is common in Benin, especially in poor and their families.
and rural zones where Voodoo traditional beliefs are Therefore, it is important to compare the impact of a
deeply rooted, to associate inexplicable deformities in cleft on the lives of Beninese and Swiss mothers and to
newborns to witchcraft (Tall, 1995; Habersaat et al., consider some sociodemographic factors that may have
2012). On the contrary, Christian families coming from an influence on the perception of clefts, such as
big cities usually associate the cleft with a divine religion, siblings, type of cleft, or living environment.
intervention or to destiny, as it is in Swiss mothers. For example, religious people reported more life
Mystical explanations may be exacerbated by friends satisfaction, well-being, and ability to cope with
Habersaat et al., OROFACIAL CLEFT CARE IN BENIN AND SWITZERLAND 191

adversity (Koenig and Larson, 2001; Koenig et al., METHOD


2001). The presence of siblings has also been recog-
nized as having an impact on the emotional and social The general design of the study is comparative. We
support to the mother, especially in the case of considered two samples of mothers having a child born
domestic or marital difficulties in sub-Saharan Africa with an orofacial cleft, one from Switzerland and one from
(Niehaus, 1994). Indeed, siblings usually participate in Benin. A mixed design was considered, incorporating
the household work and care of younger children. If qualitative and quantitative methods. The qualitative
the mother cannot earn because of injury or illness, component consisted of a semistructured interview to
siblings work. Siblings can then be of a great support in investigate beliefs, representations, emotions, and aspects
the case in which a younger child has a cleft. In of life with a child with a cleft. The quantitative component
addition, the type of cleft, which influences the consisted of a self-report questionnaire with both Swiss and
possibility of breast-feeding and the visible appearance Benin samples and will consider potential factors influenc-
of the child, may also have a serious impact on ing positively or negatively the impact of a cleft on maternal
maternal mental health. A last important factor is the mental health.
residential area. Families living in rural area are far
from medical centers and more dependent on the Participants
community, which has an influence on the support
provided to the mothers and potential repercussions on Swiss Sample
her mental health. Some studies found greater depres-
sion in rural compared with urban areas (Husaini et al., All families having given birth to a child with an
1982; Linn et al., 1989). orofacial cleft between 2005 and 2009 in the University
Studies on occidental samples, despite the support Hospital of Lausanne were considered for inclusion in
given to families of a child with a cleft, showed an the study. Families were recruited at the maternity ward
influence of the cleft on maternal mental health and, soon after childbirth by the surgeon, who addressed
more precisely, on symptoms of depression and them to the research team. The whole study was clearly
posttraumatic stress (Field and Vega-Lahr, 1984; Tyl explained to each family, and they signed a consent
et al., 1990; Dolger-Hafner et al., 1997; Habersaat et form in accordance with a protocol accepted by the
al., 2009; Skrivan-Flocard and Habersaat, 2009; University Ethics Committee. Seventy-eight percent of
Despars et al., 2011). Therefore, we can suppose that families of infants with an orofacial cleft agreed to take
in countries without financial and medical support, part in the research. Exclusion criteria were children
such as Benin, these psychological symptoms may be with other malformations or medical complications.
enhanced. Three families were excluded for these reasons. A
The present study will investigate the impact of the dropout of six families between 2 and 12 months of
birth of a child with a cleft on maternal depression and infant age was registered. Finally, the cleft group was
posttraumatic stress symptoms in Benin, as compared composed of 40 families.
with Switzerland, considering sociodemographic factors
(religion, residential area, cleft type, and siblings). We Beninese Sample
expect Beninese mothers to report more symptoms of
depression and posttraumatic stress than Swiss mothers. The Terre des Hommes Foundation Bureau in Benin
Moreover, we expect religion, siblings, and living in an was in charge of contacting families having given birth
urban area to be protective against these symptoms in to a child with orofacial cleft in Benin and Togo and
Beninese but not in Swiss mothers. We expect that bringing them to Abomey for a 2-week hospital stay,
mothers of a child with a severe cleft will report higher during which surgical repair was performed. Families
rates of depression and posttraumatic stress symptoms were then recruited by three psychologists of the Swiss
compared with mothers of a child with a less severe cleft research team at the Zou-Collines hospital of Abomey
in Benin. during the presurgical consultation occurring in January
Second, we will investigate the cleft perception in 2010 and January 2011. The whole study was clearly
Beninese versus Swiss mothers, as well as the families’ explained to each family, and they signed a consent
and community’s reaction to the child’s deformity and form in accordance with a protocol accepted by Terre
perceptions of life after the cleft surgery. We expect des Hommes Foundation, the head of the Paediatric
Beninese mothers to report less acceptance of the child’s Department of the Zou-Collines Hospital, and the
cleft by the family and community than Swiss mothers, Beninese Ministry for Public Health. All of the families
because of religious beliefs and less access to medical accepted to take part in the research. Exclusion criteria
information. We also expect that Beninese mothers will were children with other malformations or medical
consider the surgery as very beneficial. complications. Two families were excluded for these
192 Cleft Palate–Craniofacial Journal, March 2014, Vol. 51 No. 2

reasons. Finally, 36 families of children with an intrusions, avoidance, and increased arousal. The score
orofacial cleft were included in the study. is computed by adding positive responses. The alpha
coefficient of the PPQ is .85, and the test-retest was
Procedure reliability of .92 over 2- to 4-week intervals (Hynan,
1998). Concerning the French validation (Pierrehumbert
Swiss Sample et al., 2004), the authors found an internal consistency
of .82.
Families were contacted by the study team when the To assess maternal depression symptoms, the BDI
children were 2 months old, before cleft surgery, for an (Beck et al., 1996) was used in its short version to assess
appointment at the University hospital of Lausanne. A maternal depression symptoms, as mentioned in the
short semistructured interview with the mother was DSM-IV. Each of the 13 items is rated on a 0 to 3 Likert
conducted by the first or second author, based on the scale. The final score is computed by summing up the
Clinical Interview for Parents of High-Risk Infants items. The internal consistency is a ¼ .86 for psychiatric
(CLIP; Meyer et al., 1993). During this interview, the patients and a ¼ .81 for nonpsychiatric patients.
mothers could express their subjective emotional expe- Correlations with clinical ratings were .72 for psychiat-
rience in relation to their infant’s cleft and surgery. ric patients and .60 for nonpsychiatric patients (Beck et
Questions such as, ‘‘What did you think when you first al., 1988). Concerning the French validation, a coeffi-
saw your child?’’ or ‘‘How did your family react when cient of .92 for reliability was found, and the test-retest
they learned of the cleft?’’ were asked. The interviews procedure indicated adequate stability over a 4-month
were videotaped and then transcribed by the research period (Bourque and Beaudette, 1982).
team. Then, the mothers were asked to fill out two The semistructured interview based on the CLIP
questionnaires, one concerning symptoms of posttrau- (Meyer et al., 1993) was used to obtain qualitative
matic stress disorder (PTSD; Perinatal Postraumatic information about family life after the birth of the child
Stress Questionnaire [PPQ]; Quinnell and Hynan, 1999) with a cleft. The CLIP was originally designed for
and another concerning symptoms of depression (Beck parents of preterm infants but can be extended to other
Depression Inventory [BDI]; Beck et al., 1996). clinical situations. This qualitative instrument is
traditionally used by psychologists for planning psy-
Beninese Sample chosocial care in families of high-risk infants. The
interview lasted between 45 minutes and 1 hour and
Interviews with families were conducted in a medical was composed of 20 questions, covering eight themes
office of the pediatric service at Zou-Collines hospital in (infant’s current condition, pregnancy course, delivery,
Abomey by the first, second, and third authors. The relationship with the baby and feelings as a parent
same protocol as for the Swiss sample was applied in [including mental health and beliefs about the cleft],
Benin. Mothers participated in a semistructured inter- reaction to and of medical staff, relationship with the
view (CLIP). Even if the administrative language in family and social support [including sibling and
Benin was French, many uneducated woman could community], medical discharge after birth, and advice).
speak only their tribal language. In these cases, local For the present study, we added a question concerning
nurses were present during the interview to translate the perception of the surgery. Mothers’ narratives were
questions and answers and to serve as a cultural bridge. reported on a coding scheme regarding main themes of
Because of frequent electrical breakdowns, the inter- the interview. Mothers’ main narratives were then
viewed participants were not videotaped but transcribed extracted by the first and second authors separately.
directly by a second researcher present in the room. The Coders’ agreement was made by consensus after
two questionnaires (PPQ and BDI; French version) were discussion.
completed with the help of the nurse and the research-
ers. Data Analysis

Instruments Sociodemographic comparisons were computed using


crosstabs and v2, except for infants’ age (a t test was
Instruments were the same for both samples. The used).
PPQ (Quinnell and Hynan, 1999) was used to assess Regarding the sample properties, nonparametric
maternal posttraumatic stress symptoms. The PPQ is a tests were more appropriate. We used a Mann-Whitney
14-item questionnaire based on Diagnostic and Statisti- U-shaped test to compare posttraumatic stress and
cal Manual of Mental Disorders, fourth edition (DSM- depression symptoms between the Beninese and the
IV), criteria. Each symptom can be rated as present or Swiss sample of mothers as well as to compare
absent. The PPQ is exclusively designed to examine the posttraumatic stress and depression symptoms regard-
prevalence of the three components of PTSD: unwanted ing residential area. We used a crosstab with v2 to
Habersaat et al., OROFACIAL CLEFT CARE IN BENIN AND SWITZERLAND 193

TABLE 1 Information About Beninese and Swiss Samples* TABLE 3 Rate of Depression and Posttraumatic Stress (PTS)
Symptoms According to Residential Area in the Beninese Sample*
Switzerland Benin
(n ¼ 40) (n ¼ 36) P Urban Area Rural Area
(n ¼ 12) (n ¼ 24) P
Gender (male) 30 (75) 15 (42) .001
Infant’s age (mo) 2.28 (.34) 34.9 (19.0) .000 Symptoms of depression 12.16 (6.98) 5.65 (6.97) .018
Birth rank (first) 18 (44) 10 (28) ns Symptoms of PTS 5.75 (2.89 4.45 (3.02) ns
Cleft
* Numbers represent means, with standard deviations in parentheses.
Lip or palate 15 (37) 15 (41)
Lip and palate 9 (23) 6 (18)
Complex 16 (40) 15 (41) ns
Residential area (urban) 12 (28) 12 (34) ns
in cleft populations (Jensen et al., 1988; Gregg et al.,
Religion
Muslim N/D 2 (5)
1994; Lees, 2001). In the Beninese sample, there was a
Christian N/D 24 (67) female predominance (Table 1).
Animism N/D 10 (28) - Residential areas (urban/rural) are assigned regarding
Marital status
the place where the family lives most of the time and the
Married 27 (67) 28 (78)
Not married, but living together 10 (25) 4 (11) possibility of accessing public services. Towns are
Single, divorced 3 (8) 4 (11) ns defined according to United Nations criteria (.20,000
Education (educated) 40 (100) 17 (47) .001
inhabitants, less than 200 m between compounds). Most
* Numbers represent actual numbers, and percentages are in parentheses, except for Beninese participants came from isolated villages in the
infants’ ages, which are means and standard deviations in parentheses. Tests performed
are v2 for all variables, except for infant’s age (t test). north (of Benin and Togo) and were farming or selling.
In the Swiss sample, half of the participants lived in
town and half in the countryside.
assess the repartition of religion considering residential Concerning religion, we have no information about
area in the Beninese sample and a Kruskal-Wallis test the Swiss sample. However, with all of the families being
to assess the influence of cleft type on posttraumatic Swiss from birth, we assume that a large majority are
stress and depression symptoms on the Beninese and from a Christian church,1 with a few possible exceptions
the Swiss samples. Finally, we used correlations to (Bovet and Broquet, 2000). In the case of Beninese
determine a possible association between the numbers families, there is much more contrast. Although 67% of
of offspring in a family and the posttraumatic stress the sample profess to be Christian (mostly Roman
and depression symptoms, as well as between child’s Catholic), many mothers also admit belief in traditional
age at cleft repair and posttraumatic stress and religions, such as Voodoo and Animism.
depression symptoms in mothers. Significance was Educational level was computed based on maternal
considered at P , .05. schooling. If the mother went to school and knows how
Qualitative analyses of the interviews were carried out to read and write, she is considered educated. In the
by two trained psychologists in order to extract relevant Beninese sample, half of the participants were not
information from the mothers’ narratives. Every inter- educated.
view transcription was summarized, and the more
Quantitative Analyses
striking emotional aspects were reported in a table for
both samples.
Results show that mothers of children with a cleft in
the Beninese sample express significantly more symp-
RESULTS
toms of depression and posttraumatic stress compared
with mothers in the Swiss sample (Table 2).
Sociodemographic Comparison
The influence of residential area on symptoms of
posttraumatic stress and depression in mothers was
In the Swiss sample, three-fourths of the participants
tested in the Beninese and Swiss samples (Table 3). In
were men. It is well-known that men are overrepresented
the Beninese sample, we found that mothers of children
with a cleft expressed significantly more symptoms of
TABLE 2 Rate of Depression and Posttraumatic Stress (PTS)
depression when the family lived in an urban area as
Symptoms According to Groups* compared with a rural one.
Such differences in depression symptoms between
Benin Switzerland rural and urban areas were not found in the Swiss
(n ¼ 36) (n ¼ 40) P

Symptoms of depression 7.88 (7.55) 1.56 (2.08) .000


Symptoms of PTS 4.97 (2.99) 1.59 (1.69) .000 1
According to the Swiss Federal Statistical Office (2000), 80% of
* Numbers represent means, with standard deviations in parentheses; the P values the Swiss population is Christian, 11% are agnostic, and 4% are
are calculated using Mann-Whitney U tests. Muslims.
194 Cleft Palate–Craniofacial Journal, March 2014, Vol. 51 No. 2

TABLE 4 Religion in Residential Areas in the Beninese Sample* TABLE 5 Symptoms of Depression and Posttraumatic Stress
(PTS) in Mothers Regarding the Cleft Type in the Beninese and the
Residential Area, N (%) Swiss Sample*
Religion Urban Rural
Beninese Sample Swiss Sample
Christian 11 (91) 13 (54)
Animist 1 (9) 9 (37) Cleft Type Depression PTS Depression PTS
Muslim 0 (0) 2 (9)
Lip or palate 9.1 (8.5) 4.8 (3.3) 1.25 (1.1) 0.66 (.81)
* v2 ¼ 5.138; P ¼ .07. Lip-palate 3.1 (4.8) 5.8 (4.9) 2.6 (3.6) 2.1 (2.0)
Complex1 8.6 (7.0) 4.8 (1.8) 1.3 (1.1) 2.1 (1.7)
P ns ns ns .027

sample. No significant differences in posttraumatic * Numbers represents means, with standard deviation in parentheses.

stress symptoms between residential areas were found


in either the Beninese or the Swiss sample.
Table 4 shows the repartition of religion between living in Cotonou, and reported during interviews,
residential areas in the Beninese sample. In urban areas, explain more clearly the social loneliness in towns: ‘‘I
most families were Christian, whereas Christians repre- didn’t want to go out with my child, because everyone
sented only half of the rural population. For the most stared and laughed at us. I was completely alone’’
part, Animists and Muslims were living in rural zones. (Benin 213), and ‘‘I never went out with him. I even
However, this difference cannot be tested because there didn’t go to Mass because people laughed at me and
were fewer than five values in three cells, and it remains talked behind my back’’ (Benin 224).
only indicative. No difference was found concerning the perception of
Concerning the impact of cleft type on posttraumatic cleft among Christians coming from Switzerland and
stress and depression symptoms, only a tendency was Christians coming from Benin. However, for Christians
found. Swiss mothers tend to express more symptoms of in Benin, the cleft repair was more complicated, as it is
posttraumatic stress when the cleft is severe. However, illustrated in the following narrative of a Christian
the number of symptoms remained low compared with mother: ‘‘My family did not want me to come here.
the Beninese sample. Moreover, standard deviations They say I should not go against God’s will. They said
were very high (Table 5). that, if I brought the child here, I would be a sinner and
A negative correlation was found between the number should be punished’’ (Benin 204). Animists report heavy
of children in the family and depression symptoms (r ¼ rejection from the community. Posttraumatic stress
.356; P , .05) in Beninese mothers. This was not found symptoms, such as nightmares, flashbacks, and so forth
in Swiss mothers. Finally, a positive correlation was were mostly related to the announcement of the cleft in
found in Beninese mothers between the child’s age at the Swiss sample and about fear for survival in the
cleft repair and symptoms of posttraumatic stress (r ¼ Beninese sample.
.455; P , .01). Lack of information among medical staff is often
reported by Beninese mothers. For example, a mother
Qualitative Analyses said, ‘‘At delivery, when the nurse saw my child, she said
that I had been bewitched or cursed’’ (Benin 213),
The qualitative analyses of the interviews showed that whereas another mother reported, ‘‘When I saw my
aspects of greatest concern in the Beninese population child at birth, I was very shocked. Doctors said that it
were centered on survival and rejection from the was very serious and that my child would die. They put
community (Table 6). some tubes and oxygen, and they took the baby away
Table 6 shows a summary of the main concerns on from me’’ (Benin 209).
each CLIP theme and the additional question about
surgery of the two samples. The presence of siblings is DISCUSSION
considered more positive in the Beninese compared
with the Swiss sample, as they are seen as more The main purpose of the study was to assess maternal
supportive and helpful to their mothers. No particu- symptoms of depression and posttraumatic stress after the
larity related to residential area was mentioned in the birth of a child with a cleft in Benin and Switzerland. We
Swiss sample, except for two families living in a small considered sociodemographic factors as playing a potential
village on the mountain, who reported certain tiredness role on maternal mental health, such as residential area,
related to questions asked by neighbors. In Benin, siblings, cleft type, and religion. These factors may be
mothers from rural communities reported high levels of important in understanding the perception and represen-
rejection and a deep emotional impact related to tation of the cleft among African cultures and may help
rejection. In town, Beninese mothers mentioned humanitarian occidental surgeons to communicate better
loneliness. These two phrases of Beninese mothers with patients and their families.
Habersaat et al., OROFACIAL CLEFT CARE IN BENIN AND SWITZERLAND 195

TABLE 6 Main Representations Concerning the Cleft in Beninese and Swiss Narratives Regarding the CLIP Themes

Benin Swiss

Infant’s current condition Low weight, cannot speak, rejected, lonely, eats little No problem related to the cleft mentioned
Pregnancy course No difficulty mentioned Announcement before birth was a difficult time
Delivery Infant was hidden from the mother, anxiety, feeling of No problem related to the cleft mentioned, relief to see to
loss, fear of rejection, and fear for the child child
Relationship with baby and Depression in relation to loneliness, exclusion and fear of Anger related to first reactions of stranger to the child;
feelings as parent death; stress symptoms in relation to practical stress symptoms related to the announcement of the
difficulties, survival risk, and exclusion cleft and child appearance
Reaction of medical staff Rejecting, makes feel guilty, lack of appropriate Overall supportive but sometimes not diplomatic enough
information and care, traditional beliefs
Relatives’ support Siblings: help for household and for caring for the child, Siblings: additional emotional and caring burden; father:
are supportive; father: rejecting and accusing; supportive and helpful; community: the cleft is an
community: the mother has been cursed, rejection accident, none is to blame, unlucky (nonbelievers); God
(Animists); God sent this burden because they can carry sent this burden, because they can carry it (Christians)
it (Christians)
Discharge and beyond In urban area, neighbors help, family feels anonymous, In urban area: no difficulty mentioned; in rural area:
financial difficulties, but close to medical care if child everybody knows each other and asks questions, a bit
has health problems, loneliness; in rural area: rejection tiring
of the child and the mothers, bullying, financial
difficulties, lack of medical follow-up
Advices for care Give more information to medical staff and family Be more supportive when announcing
improvement
Perception of the surgery Possible rehabilitation in the community; fewer financial Fear of anesthesia; painful for the child
and practical problems; in Animists, mother is guilty for
the cleft; the surgery will erase mother’s sin; in
Christians, mother has no right to go against God’s will
and repair the cleft

Socioeconomic Data and Comparability of the Samples statistics are computed. It is also possible that the
Discussion neonatal survival rate of boys with clefts is lower than
for girls (Table 1).
The comparability of the samples can be questioned Concerning educational status, we used only the
as the cultural and economical backgrounds are very information ‘‘can read’’ and ‘‘can write.’’ It would have
different. For instance, the Swiss sample is composed of been better to use a standardized socioeconomical
families having given birth to a child with an orofacial instrument to assess standards of living. However, most
cleft in the Hospital of Lausanne, and they are closely families in the Beninese sample had no bank account, no
followed up and supported by the multidisciplinary salaries, and no idea how much they were earning per
team from childbirth to adolescence. On the other hand, month, as they were living on their land income and
the Beninese sample is mostly composed of poor used barter. Moreover, the educational system, the gross
families not able to afford hospital costs and therefore
domestic product, and social insurances are very
sponsored by an NGO. Moreover, as it has been noted
different between the two countries and make compar-
in women with genital fistulas (Murphy, 1981; Mafakh-
ison of socioeconomical levels very complex.
kharul Islam and Begum, 1992; Wall, 1998; Wall, 2002),
In Switzerland, parents anticipate cleft surgery with
mothers of a child with an orofacial cleft are often
anxiety. The anesthesia is their principal worry, for the
rejected by their families and by their community and
child is very young when it is performed. It is not rare to
stigmatized (Habersaat et al., 2012). These women are
destitute, without any financial and familial resources. see parents ambivalent about repairing the cleft; they
Thus, it is a very fragile and indigent population. have adjusted to their child with his cleft and do not
The Swiss and the Beninese sample are also difficult to want him to suffer or risk his life in surgery (Skrivan-
compare regarding many other parameters, for example, Flocard and Habersaat, 2009). In Benin, even if the
the percentage difference between boys and girls. These surgical act primarily responds to functional require-
differences are difficult to explain and might be due to ments, such as feeding and language, for many mothers
chance. However, we found two studies in Africa it also represents a possible rehabilitation into the
reporting higher rates of girls among the cleft popula- community. Indeed, with the cleft repaired, the visual
tion (Msamati et al., 2000; Suleiman et al., 2005). The aspects of sins imputed to the mothers are erased.
discrepancies could be related to a greater importance Therefore, if, for surgeons, the cleft surgery is a
for girls to have a nice face and marry, which is functional repair, for many Beninese families it is a
sometimes the only way to survive. Thus, we would find social repair (Habersaat et al., 2012). Thus, the way cleft
more girls in clinical services where the epidemiological surgery is anticipated may be very different among
196 Cleft Palate–Craniofacial Journal, March 2014, Vol. 51 No. 2

populations and must be considered when comparing town often had left their village and their family to find
samples of different cultures. work. Therefore, these mothers are deprived of any
Concerning the instruments used in the study, social support from a close family and have to face the
although the BDI has been validated in many languages child’s problems alone. They also often cannot give the
and for many cultures outside the occidental world (e.g., child to a relative because of feeding difficulties and the
Carro et al., 1998; Alansari, 2005; Ghassemzadeh et al., child’s appearance, cannot work, and are then con-
2005; Jo et al., 2007), as far as we know, there is no fronted with financial problems.
validation for sub-Saharan countries. Thus, we propose Our results showed that the more siblings, the less
caution in interpreting the results in the Beninese depression symptoms. Siblings may provide an emo-
sample. Indeed, we have no information about how tional and material support for Beninese mothers, as the
depression and posttraumatic stress symptoms are eldest may help to raise their youngsters, as is the
represented or expressed among the different ethnic traditional setting in sub-Saharan Africa.
groups living in Benin and Togo. Moreover, potential Another possible explanation for the difference found
negative consequences of clefts on maternal mental in depression symptoms between residential areas in
health may be influenced by the interval between birth Beninese mothers is related to religion. Indeed, our
and operations. Indeed, in Switzerland, clefts are results showed that there were more Christian mothers
repaired around the third month of age, whereas in in urban areas. In the Beninese sample, mothers were
our Beninese sample, cleft repair is done at 3 years of interviewed shortly before or during the child’s cleft
age on the average, ranging from 6 months to 7 years repair. If, for Animist families, the surgery was
old, when parents come into contact with the NGO. anticipated as a possible social repair, for Christian
For all the sociodemographic reasons cited above, it is mothers, surgery may produce intense conflicts within
extremely tricky to compare these two samples and must the family. Indeed, in Christian families, the cleft is
be considered as a major limitation in this study. perceived as a divine hardship to be endured as a test of
Therefore, the following results must be interpreted with faith. Repairing the cleft is considered a denial of God’s
caution. will. At the time of surgery, Christian mothers may be
very worried about the future compared with Animist
Quantitative and Qualitative Data Discussion mothers.

Our results suggest that mothers of the Beninese Keys to Improve Humanitarian Pediatric Surgery in Sub-
sample are more depressed and more stressed compared Saharan Countries
with mothers of the Swiss sample. However, as it has
been mentioned before, these results have to be taken Even if quantitative aspects may have an importance,
with caution as the instruments are not validated in sub- qualitative aspects resulting from interviews with the
Saharan cultures and as many confounding variables mothers of children with a cleft brought a very
may intervene. interesting light on perceptions of malformations among
Nevertheless, semistructured interviews showed that West African cultures. Aside from the child’s well-being,
posttraumatic stress symptoms in Beninese mothers it appears that their mothers are severely affected in
concerned aspects of survival (e.g., alimentation, med- their daily life by their child’s affliction. Habits such as
ical costs, severity of potential associated diseases) and going to Mass, to market, and going out are perturbed
exclusion of the community, whereas posttraumatic by the presence of the cleft. In a culture in which social
stress symptoms in Swiss mothers were more centered aspects are associated with survival and in which there
on the shock at the prenatal announcement of the cleft are no maternal, social, or medical insurances, it is of
or at childbirth. This difference in the content of great importance to consider the impact of a visible cleft
posttraumatic memories may also explain the impor- on the whole social group and not only on the child.
tance of the cleft type for Swiss mothers. Indeed, stress It appears, during the interviews, that when mothers
in Swiss mothers especially concerned the physical were well informed about the origin and repair of the
appearance of the child, but no worries about the cleft, they were less stressed and had fewer problems
child’s survival were mentioned, for it is not an issue. with family and relatives. Moreover, they would inform
For Beninese mothers, the striking aspect of the child’s the father and the family about the cleft, cutting short
face was secondary to the fear of death and social mystical explanations. The rejection from peers was
exclusion. almost absent. This observation supports medical
Concerning the residential area, our results showed information campaigns in developing countries. Indeed,
that depression symptoms were higher in urban areas, it is important to undertake prevention campaigns
but only in the Beninese sample. It is possible that the against diseases, but it is also of great importance to
social rupture caused by the birth of a child with a cleft inform the public about malformations, as they may
is more important in town. Indeed, women living in have disastrous long-term social implications.
Habersaat et al., OROFACIAL CLEFT CARE IN BENIN AND SWITZERLAND 197

Most mothers in our Beninese sample were surprised of a computerized program to plan follow-up consul-
to meet so many families with the same problems when tations. Even good surgical repair is not enough;
they arrived at the hospital. The simple fact of being frequent massages of the scar, exercises of lip muscle
hospitalized with other parents in the same situation reinforcement, and speech therapy are necessary for a
was in itself supportive, and the sharing of experiences good result. These postoperative measures cannot be
was therapeutic. This underlines the pertinence of the provided by the surgeon and are up to mothers or local
creation of an association for families of children with doctors, who must be properly informed to provide
clefts. For example, in Switzerland, such associations optimal care. Over the past 10 years, the pluridiscipli-
support families from before birth to adulthood. Aside nary team speech therapist has accompanied the
from psychological support, parents may call the surgical team to provide workshops for the children
association to ask for information about surgeries and and their parents. Even if there is no certified speech
treatment. In Benin and Togo, such an association may therapy in Benin, the parents can replace this essential
provide a platform of communication between families part of follow-up care if properly trained. The speech
and serve as a bridge between NGOs, local clinics, and therapy sessions also provide a platform for continued
patients. Moreover, it could promote or conduct psychological support.
information campaigns about clefts. Unfortunately, a Finally, this study stressed the importance of under-
cleft association is difficult to organize in countries standing cultural differences in the perception of clefts
where the communication between towns and villages is to provide a better global care to patients and their
made difficult by the absence of phones, lack of families. In particular, campaigns of information
electricity, bad roads, and long distances. directed to maternity personnel and the public should
Many mothers in our study reported anecdotes help parents and medical staff in small dispensaries to
showing that the medical staff in small clinics or give appropriate care. This may diminish anxiety
dispensaries was uninformed about clefts. Moreover,
concerning the child’s vital prognosis and magical
personal interpretations came from them at first.
representations that exist concerning the cleft. More-
Medical staff is usually considered the authority when
over, a Beninese association of families with a child with
it comes to disease, so their misunderstandings of clefts
a cleft providing support to others from the same
can have a serious impact. Improving knowledge
cultural background would probably be very helpful,
about clefts in general will also help orient appropriate
especially if we take into consideration the intense
care.
activity in the blogs dedicated to parent information
Children with clefts should be referred to care
sharing. Surgical teams should consider spending part of
centers and operated on as soon as possible. Our
their time giving classes and providing information
results showed that mothers of children with late
repaired clefts showed significantly more symptoms of pamphlets in an effort to raise public awareness and
posttraumatic stress. The longer the cleft is apparent, understanding of cleft lip and palate. The long-term
the longer the mother and child will remain socially impact on the quality of life of the children benefitting
excluded, with the deleterious consequences that we from surgical repair could be enormous.
mentioned before. There is a need for long-term
follow-up of these children, who do not benefit from CONCLUSION
speech therapy, and it is difficult to determine if the
children with a late repaired cleft will have full Our study considered different factors potentially
language recovery. The usefulness and effectiveness affecting mothers of children with an orofacial cleft in
of surgery can be confirmed only if the child’s social Benin. Our results showed that Beninese mothers of
and educational development is normal. This intro- children with a cleft express more symptoms of
duces another key concept, often missing in humani- depression and posttraumatic stress as compared with
tarian surgery, which is the continuity of care. When Swiss mothers. Symptoms of posttraumatic stress were
operating in the developing world, humanitarian higher in Beninese mothers when cleft surgery occurred
surgeons must ensure that patients receive appropriate later after birth. Symptoms of depression were higher in
postoperative care (Wall et al., 2006) and follow-up, Beninese mothers coming from urban areas compared
including the development of a viable surgical backup with mothers coming from rural areas. This difference is
plan in case late complications develop (Wall et al., explained by the lack of a close family in town and by
2006). In the Lausanne program, the agency of the religious beliefs regarding perception of clefts. Finally,
NGO Terre des Hommes has a permanent delegation we found that mothers with other children reported less
in Benin and keeps in contact with families in case of symptoms of depression compared with mothers with
long-term problems after surgery. Moreover, as the few or no other children than the one with the cleft,
same surgical team returns every year, surgeons may perhaps because her ability to produce perfect children
reoperate the child if necessary, and every child is part was not in question.
198 Cleft Palate–Craniofacial Journal, March 2014, Vol. 51 No. 2

REFERENCES Hynan MT. The perinatal post traumatic stress disorder (PTSD)
questionnaire (PPQ). In: Wood R, Zalaquette CP, eds. Evaluating
Agbenorku P, Agbenorku M, Iddi A, Abude F, Sefenu R, Matondo P, stress: A handbook of resources. Lanham, MD: Scarecrow Press;
Schneider W. A study of cleft lip/palate in a community in the 1998:193–199.
South East of Ghana. Eur J Plast Surg. 2011;34:267–272. Jensen BL, Kreibord S, Dahl E, Fogh-Andersen P. Cleft lip and palate
Agbenorku P, Agbenorku M, Sefenu R, Matondo P, Osei D. in Denmark 1976–1981: epidemiology, variability and early somatic
Endemicity of cleft lip/palate in a rural community in South-East development. Cleft Palate J. 1988;25:258–269.
Ghana. J Sci Technol. 2007;27(1):45–50. Jo SA, Park MH, Jo I, Ryu SH, Han C. Usefulness of Beck
Depression Inventory (BDI) in the Korean elderly population. Int J
Alansari BM. Beck Depression Inventory (BDI-II) items characteris-
Geriatr Psychiatry. 2007;22(3):218–223.
tics among undergraduate students of nineteen Islamic countries.
Jones WB. Weight gain and feeding the neonate with cleft: a three-
Soc Behav Pers. 2005;33(7):675–684.
center study. Cleft Palate Craniofac J. 1988;25:379–384.
Beck AT, Steer RA, Brown GK. The Beck Depression Inventory. San
Kodjogbé N, Mboup G, Tossou J, de Souza L, Gandaho T, Guédémé
Antonio, TX: Psychological Corporation; 1996.
A, Houedokoho T, Tohouegnon T, Zomahoun S, Capo-Chichi V,
Beck AT, Steer RA, Carbin MG. Psychometric properties of the Beck
et al. Enquête démographique et de santé, République du Bénin
Depression Inventory: twenty-five years of evaluation. Clin Psychol
1996. Calverton, MD: Institut National de la Statistique et de
Rev. 1988;8(1):77–100.
l’Analyse Economique et Macro International Inc.; 1997.
Borghi J, Hanson K, Acquah CA, Ekanmian G, Filippi V, Ronsmans
Koenig HG, Larson DB. Religion and mental health: evidence for an
C, Burgha R, Browne E, Alihonou E. Costs of near-miss obstetric
association. Int Rev Psychiatry. 2001;13:67–78.
complications for women and their families in Benin and Ghana.
Koenig HG, McCullough M, Larson DB. Handbook of Religion and
Health Policy Plan. 2003;18(4):383–390.
Health: A Century of Research. New York: Oxford University
Bourque P, Beaudette D. Etude psychométrique du questionnaire de
Press; 2001.
dépression de Beck auprès d’un échantillon d’étudiants universi-
Lees M. Genetics of cleft lip and palate. In: Watson ACH, Sell DA,
taires francophones. Can J Behav Sci. 1982;14(3):211–218.
Grunwell P, eds. Management of Cleft Lip and Palate. London:
Bovet C, Broquet R. Le paysage religieux en Suisse. OFS, ed.
Whurr Publishers; 2001:87–104.
Neuchâtel: Swiss Federal Statistical Office; 2000.
Linn J, Husaini BA, Whitten-Stovall R, Broomes LR. Community
Brauman R. La médecine humanitaire. Paris: PUF; 2010.
satisfaction, social support and mental health in rural and urban
Canguilhem G. Le normal et la pathologique. Paris: PUF; 1966. southern Black communities. J Community Psychol. 1989;17:78–
Carro IL, Bernal IL, Vea HB. Depression in Cuba: validation of Beck 88.
Depression Inventory (BDI) and the Dysfunctional Attitudes Scale Lule GS, Ssembatya M. Intention to deliver and delivery outcome. In:
(DAS-A) with Cuban population. Psicologia Clinica Latinoamer- Hatcher RJ, Vlassoff C, eds. The Female Client and the Health-Care
icana. 1998;16:111–120. Provider. Ottawa, Canada: IDRC; 1995.
Despars J, Peter C, Borghini A, Pierrehumbert B, Habersaat S, Mafakhkharul Islam AIM, Begum A. A psycho-social study on
Müller-Nix C, Hohlfeld J. Impact of a cleft lip and/or palate on genito-urinary fistula. Bangladesh Med Res Council Bull.
maternal stress and attachment representations. Cleft Palate 1992;18(2):82–94.
Craniofac J. 2011;48:419–424. Masarei AG, Sell D, Habel A, Mars M, Sommerlad B, Wade A. The
Dolger-Hafner M, Bartsch A, Trimbach G, Zobel I, Witt E. nature of feeding in infants with unrepaired cleft kip and/or palate
Parental reactions following the birth of an infant with a compared with healthy non-cleft infants. Cleft Palate Craniofac J.
congenital malformation: a hypothetical model. Pediatrics. 2007;44(3):321–328.
1997;56:710–717. Meyer EC, Zeanah CH, Boukydis CFZ, Lester BM. A clinical
Donkor P, Bankas DO, Agbenorku P, Plange-Rhule C, Ansah SK. interview for parents of high-risk infants: concept and applications.
Cleft lip and palate surgery in Kumasi, Ghana: 2001–2005. J Sci Infant Ment Health J. 1993;14(3):192–207.
Technol. 2007;18:1376–1379. Msamati BC, Igbibi PS, Chisi JE. The incidence of cleft lip, cleft
Field TM, Vega-Lahr N. Early interactions between infants with palate, hydrocephalus and spina bifida at Queen Elizabeth Central
cranio-facial anomalies and their mothers. Infant Behav Devel. Hospital, Blantyre, Malawi. Cent Afr J Med. 2000;46:292–296.
1984;7:527–530. Murphy M. Social consequences of vesico-vaginal fistula in Northern
Ghassemzadeh H, Mojtabai R, Karamghadiri N, Ebrahimkhani N. Nigeria. J Biosoc Sci. 1981;13:139–150.
Psychometric properties of a Persian-language version of the Beck Niehaus IA. Disharmonious spouses and harmonious siblings:
Depression Inventory-Second Edition: BDI-II-Persian. Depress conceptualising household formation among urban residents in
Anxiety. 2005;21(4):185–192. Qwaqwa. Afr Stud. 1994;53(1):115–135.
Gregg TD, Boyd D, Richardson A. The incidence of cleft lip and Pierrehumbert B, Borghini A, Forcada-Guex M, Jaunin L, Muller-Nix
palate in Northern Ireland from 1980–1990. Br J Orthod. C, Ansermet F. French validation of the ‘‘Perinatal PTSD
1994;21:387–392. Questionnaire’’ assessing parent’s posttraumatic stress reactions
Habersaat S, Peter C, Borghini A, Despars J, Pierrehumbert B, following the birth of a high risk infant. Annales médico-
Müller-Nix C, Ansermet F, Hohlfeld J. Effet du stress sur psychologiques. 2004;162(9):711–721.
l’évolution des représentations parentales au cours des 12 premiers Quinnell FA, Hynan M. Convergent and discriminant validity of the
mois de vie d’un enfant né avec une fente faciale. Neuropsychiatrie perinatal PTSD questionnaire (PPQ): a preliminary study. J Traum
de l’enfance et de l’adolescence. 2009;57:199–205. Stress. 1999;12(1):193–199.
Habersaat S, Peter C, Hohlfeld C, Hohlfeld J. Intervention chirurgi- Ramana YV, Nanda V, Biswas G, Chittoria R, Ghosh S, Sharma RK.
cale en Afrique subsaharienne: médecine humanitaire ou médecine Audiological profile in older children and adolescents with
gratuite? Enfances Psy. 2012;53:139–147. unrepaired cleft palate. Cleft Palate Craniofac J. 2005;42(2):570–
Hodgkin D. Household characteristics affecting where mothers deliver 573.
in rural Kenya. Health Econ. 1996;5:333–340. Saizonou J, Godin I, Ouendo EM, Zerbo R, Dujardin B. La qualité de
Husaini BA, Neff JA, Newbrough JR, Moore MC. The stress- prise en charge des urgences obstétricales dans les maternités de
buffering role of social support and personal competence among référence au Bénin: le point de vue des ‘‘Echappées Belles’’ et leurs
the rural married. J Community Psychol. 1982;10:409–425. attentes. Trop Med Int Health. 2006;11(5):672–680.
Habersaat et al., OROFACIAL CLEFT CARE IN BENIN AND SWITZERLAND 199

Skrivan-Flocard V, Habersaat S. Analyse du discours parental lors de Tyl J, Dytrych Z, Helclova H, Schuller V, Matejcek Z, Berankova A.
la naissance d’un enfant avec une fente orofaciale. Enfance Psy. Psychological and social stress in children with cleft lip and palate.
2009;43. Ceskoslovenska Pediatrie. 1990;45:532–536.
Suleiman AM, Hamzah ST, Abusalab MA, Samaan KT. Prevalance Wall LL. Dead mothers and injured wives: the social context of
of cleft lip and palate in a hospital based population in Sudan. Int J maternal morbidity and mortality among the Hausa of Northern
Nigeria. Stud Fam Plann. 1998;29(4):341–359.
Paediatr Dent. 2005;15:185–189.
Wall LL. Fistari ‘dan Duniya: an African (Hausa) praise-song about
Tall ER. On democracy and Voodoo in Benin. Cahiers d’Etudes vesico-vaginal fistulas. Obstet Gynecol. 2002;100:1328–1332.
Africaines. 1995;35(137):195–208. Wall LL, Arrowsmith SD, Lassey AT, Danso K. Humanitarian
Tanaka SA, Mahabir RC, Jupiter DC, Menezes JM. Updating the ventures or ‘‘fistula tourism?’’: the ethical perils of pelvic surgery in
epidemiology of cleft lip with or without cleft palate. Plast Reconstr the developing world. Int Urogynecol J Pelvic Floor Dysfunct.
Surg. 2012;129(3):511e–518e. 2006;17:559–562.

You might also like