|ORIGINAL RESEARCH REPORT
|Year : 2015 | Volume
| Issue : 2 | Page : 96-102
Psychological distress and perceived stress, among mothers of infants with orofacial clefts in a tertiary hospital in Lagos, Nigeria
Yewande Olufunmilayo Oshodi1, Wasiu Lanre Adeyemo2
1 Department of Psychiatry, College of Medicine, University of Lagos, Lagos, Nigeria
2 Department of Oral and Maxillofacial Surgery, College of Medicine, University of Lagos, Lagos, Nigeria
|Date of Web Publication||17-Nov-2015|
Yewande Olufunmilayo Oshodi
Department of Psychiatry, College of Medicine, University of Lagos
Source of Support: None, Conflict of Interest: None
Background: Arrival of a child with cleft lip or palate is characterized by mixed feelings in the parents. The aim of the study was to determine the magnitude of psychological distress, attributional beliefs on causation, perceived stress symptoms in mothers of infants with cleft lip and palate. Subjects and Methods: Questionnaires about causal beliefs (MCA), the General health questionnaire-version 12 and Perceived stress Scale (PSS) were administered to mothers of babies with cleft lip and palate. Results: Psychological distress was noted in 12 (23.1%) of the cases. On the PSS scale, 9 (17.9%) of the mothers had the perception of more than average stress. A higher proportion of mothers with more than average perceived stress had combined cleft lip and palate (66.7%). Many mothers (n = 43, 82.7%) had no understanding of the cause of their childs deformity. There was a significant relationship between the presence of Psychological distress and the mothers perception of stress (P < 0.005). Thirty-eight (73%) of mothers who had cleft babies admitted to subjective feelings of misery and depression in relation to coping with the deformity and this was significantly associated with the experience of psychological distress (P = 0.016) with 9 (75%) of them having suggestive scores on the GHQ. Also among these mothers those who reported more perceptions of stress also seemed to endorse more subjective feelings of depression (P < 0.05). Conclusion: Mothers of babies with cleft lip and palate can go through difficult emotions that make them perceive their role as being stressful. This has implications on their overall emotional wellbeing. Early maternal mental health screening, health education explaining causation are useful strategies that can be embedded in protocols to help promote both maternal and child mental health in this special population group.
Keywords: Orofacial clefts, maternal stress, psychological distress
|How to cite this article:|
Oshodi YO, Adeyemo WL. Psychological distress and perceived stress, among mothers of infants with orofacial clefts in a tertiary hospital in Lagos, Nigeria. J Clin Sci 2015;12:96-102
|How to cite this URL:|
Oshodi YO, Adeyemo WL. Psychological distress and perceived stress, among mothers of infants with orofacial clefts in a tertiary hospital in Lagos, Nigeria. J Clin Sci [serial online] 2015 [cited 2020 Jan 22];12:96-102. Available from: http://www.jcsjournal.org/text.asp?2015/12/2/96/169689
| Introduction|| |
Clefts of the lip, alveolus, and/or palate (CLP) are among the most common congenital malformations of the head and neck., Worldwide, the prevalence per 1,000 total births of cleft lip and/or cleft palate ranges from around 0.5-2 to 1,000 total births, while more recent figures have identified the prevalence as being about 1 out of every 500 to 1,000 live births worldwide. A recent study in Nigeria identified the prevalence of cleft lip and/or palate as being 0.5 per 1,000.
Due to the deformity and the demands of care, the birth of a child with CLP can be emotionally challenging and stressful for parents, particularly the mothers. The challenges associated with CLP deformities can vary depending on the degree and location of the defect. These include feeding difficulties, speech and language delays, ear infections/hearing loss, esthetic problems, dental anomalies, psychosocial problems, and reduced quality of life.,, To correct the problems, these defects need to be repaired as soon as the patient is fit for surgery.
In addition to the emotional impact, sociocultural interpretations and perceived stigma add further stress to the mothers of such infants. Worldwide, different perceptions have been recorded toward CLP, which often influence the utilization of health services and the labels for, explanations for, and treatments of the diseases. Explanatory models or attributions to causation have played a significant role in how well such mothers are able to cope with the experience of caring for a young child with a orofacial clefts. For instance, a study held in Switzerland and Benin stressed the importance of understanding the cultural differences in perceptions of orofacial clefts in order to provide appropriate care to patients and their families. In that study, they found more posttraumatic stress syndrome (PTSD) symptoms in the women from Benin compared with the women from Switzerland, and also revealed cultural differences in the perception of CLP disorders.
A review by Loh and Ascoli showed a consistent general belief across three different cultures (Chinese, African, and Indian) that the mother is responsible for the occurrence of CLP. The explanations of causation can range from a flawed diet or starvation during pregnancy, to spiritual intervention, to the fact that the pregnant mother looked at a solar eclipse or stared at a rabbit. The support provided and the preference to patronize traditional healers by parents of children with CLP was also highlighted in that review. In some other African cultures, abortion and witchcraft are often thought to be linked with the etiology of CLP, and thus the mother is stigmatized as a witch.
Myths and folk beliefs frequently abound after the birth of a child with orofacial clefts, with a higher prevalence of such attitudes in rural and less educated areas being reported.
In the light of all these cultural experiences, mothers of CLP babies are particularly vulnerable to emotional distress. Extensive research has shown that maternal mental health tends to have implications for infant-mother attachment and the overall mental/physical development of the young child. A study by Despars et al. revealed that there were negative effects on the attachment and bonding among mothers having CLP babies, thus being a possible prelude to negative impact on such a child's emotional development , thus being a possible There are others who have concluded that the mothers of such children can do quite well in forming mother-child relationships and go on to develop good-quality attachment just like other mothers, and this absence of difference was attributed to the presence of pluridisciplinary support that families with such challenges have access to in that study location.
Since the emotional well-being of a mother with a child with CLP is key for the overall well-being of the infant, this index study aimed to determine the magnitude of psychological distress and perceived stress in mothers of infants with CLP in this environment. Given the limited published work locally on the emotional aspect of CLP, the authors believe that the findings of this study will serve as an important step in advocating further research and better support for these mothers and their children.
| Materials and Methods|| |
This was a cross-sectional descriptive survey among mothers of babies with CLP. Cases were recruited from the Maxillofacial Surgery Clinic of Lagos University Teaching Hospital (LUTH). The clinic serves as one of the referral centers for such cases of CLP in the Lagos environs.
Eligible respondents were women aged 15-45 years, at least 6 weeks postpartum with a child with CLP who was aged below 3 years, who could understand English, with no known prior history of psychiatric illness before the birth of the infant, and no other physical deformity in their infant.
The study population consisted of mothers who had infants with CLP deformities at birth and were attending the maxillofacial surgery outpatient clinic. The study participants constituted a proportion of the total patient population attending the clinic and were enrolled consecutively over a period of 6 months. The final sample size obtained was estimated to be representative and appropriately in keeping with the sample sizes in similar studies carried out in other clinic settings.,
Consecutive and eligible participants were enrolled as they came for their routine clinic visits over a period of 6 months. Each participant had an interviewer assist in the administration of the questionnaires to ensure that all items were understood and completed.
A sociodemographic/diagnosis pro forma - This captured details of the respondents' sociodemographic variables, causal beliefs and explanatory models, the type of cleft, and treatment received so far.
Maternal Causative Attribution scale (MCA) - This was used to find out mothers' attitudes to the Mental Retardation, the Questionnaire was designed by Famuyiwa in 2011 (unpublished) and has been used by other researchers locally. It has been found useful in the assessment of mothers with children with chronic disorders. It explores attitudes to diagnosis, feelings of sadness, thoughts of abandoning the child, and understanding of the causation of the child's condition, ong others. The MCA was administered to all eligible mothers with CLP babies. Scores on the MCA were on a Likert scale of 1-3, with higher scores suggesting poorer understanding of causation. The Likert scale is one in which a numerical value is assigned to each potential choice, and a mean figure for all the responses is computed at the end of the evaluation or survey. Likert scales usually have five potential choices ("strongly agree,” “agree,” “neutral,” “disagree,” “strongly disagree").
The General Health Questionnaire, version 12 (GHQ-12) - The GHQ-12 was used to screen for psychological distress/probable psychiatric morbidity in the subjects. Designed by Goldberg in 1972, it is a self-administered screening instrument, sensitive to the presence of psychiatric disorders in individuals presenting in primary care settings and nonpsychiatric clinical settings. It has been used extensively by several authors locally. Its use has been mostly among primary care and general population subjects and it has been found reliable in the studied environment., It assesses for symptoms experienced over the past month. Scores of 3 and above are suggestive of psychological distress, which may be assessed further to determine the presence or absence of definitive psychiatric morbidity. The GHQ-12 was used to assess all participants for psychological distress.
Ten-Item Perceived Stress Scale (PSS) - The PSS is a widely used psychological instrument for measuring the perception of stress. It provides a measure of the degree to which situations in a person's life are appraised as stressful. The items are designed to test how unpredictable, uncontrollable, and overloaded respondents find their lives. The scale also includes a number of direct queries about current levels of experienced stress. The questions in the PSS ask specifically about feelings and thoughts during the last month. In each case, respondents are asked how often they felt a certain way.
On the PSS Likert scale, (as earlier described) higher scores suggest greater experience of stress. The perception of stress was grouped into three groups among the cases by determining the mean total score on the PSS along with the standard deviation. Scores within the mean score + or - the standard deviation were considered markers of average perceived stress and scores above this range were considered more than average perceived stress, while scores below the mean range were considered below-average perceived stress.
Consecutive and willing eligible participants were enrolled as they came for their routine clinic visits over a period of 6 months. Questionnaires were administered to all eligible mothers who consented to the study.
Ethical approval for the study was obtained from the Health Research and Ethics Committee (HREC) of LUTH. Written informed consent was obtained from participating mothers before recruitment into the study. Mothers identified with scores on the GHQ-12 suggestive of psychological distress were counseled and encouraged to seek further expert help if such feelings persisted.
Data were processed using the Statistical Package for Social Sciences (SPSS) version 16 (SPSS for Windows, Version 16.0. Chicago, SPSS Inc) statistical package. Simple frequency distribution was completed for the items (questions) of the measures and descriptive statistics was used to describe the subjects' responses to all items.,
Association between key variables was explored using Chi-square test and Fisher's exact test, and the level of significance was set at <0.05.
| Results|| |
Social and demographic characteristics of the mothers and children
[Table 1] shows the demographic characteristics of respondents. There were 52 cases enrolled for the study. The mothers were aged 16-45 years, with a mean age of 31.2 ± 4.89 years. The majority (74.5%) of mothers were aged 26-45 years. Most of the mothers were married (90.4%), and most of the mothers spent 13-24 h with their child daily (86.3%). The average age of the children was 52 week ± 62 weeks. Most of the children were female (59.6%).
[Table 2] describes the relationship between type of orofacial clefts, maternal psychological distress, perceived stress and attributions of causation. The orofacial cleft defects seen were; Lip deformity (26.9%, n = 14), Cleft Lip and Palate (CLP) (63.5%, n = 33) and isolated cleft palate (9.6%, n = 5). Looking further into the relationship of the orofacial clefts with the mother's psychological distress and perceived stress, of the 12 mothers with psychological distress, 8 (66.7%) had CLP, while on the PSS scale 6 (66.7%) of those with more than average stress had CLP deformity. Lastly On the MCA, 5 (57.1%) of the 8 with more abnormal beliefs had CLP. On all the three scales (GHQ, PSS, MCA), it appeared that most women with abnormal scores were in the category of mothers with CLP deformity in their babies. Though none of these findings were statistically significant it is noteworthy the association with the more severe orofacial deformity.
|Table 2: Relationship between type of orofacial clefts, maternal psychological distress, and perceived stress|
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Maternal psychological distress and causative attributions
Among the mothers with CLP babies, 38 (73.1%) admitted to feeling depressed in relation to coping with the deformity, and this was significantly associated with the experience of psychological distress (P ≤ 0.05). While 12 (23.1%) also endorsed feelings of shame.
On comparing the understanding of the nature of child's illness and the presence of psychological distress, a large proportion of those with psychological distress (66.7%) were found to have no understanding of the causation, while 33.3% had a medical understanding of this deformity. This was statistically significant (P = 0.019) [Table 3].
|Table 3: Maternal psychological distress (GHQ) and causative attributions (MCA)|
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Two thirds of the mothers with psychological distress had not yet received treatment for their children at the time of this study, though this was not a statistically significant relationship [Table 3]. In addition, more than half of the mothers who reported more than average perceived stress had scores confirming psychological distress on the GHQ 12, and this was a statistically significant relationship (P = 0.02).
Perceived stress in mothers with maternal subjective feeling of depression and understanding of illness causation
On further comparison of the perceived stress and the subjective feelings of depression as reported in these mothers, a statistically significant relationship was observed with P < 0.019. The perception of stress in relation to their understanding of the condition showed no significant relationship [Table 4].
|Table 4: Comparing perceived stress in mothers with maternal subjective feeling of depression and maternal understanding of causation|
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| Discussion|| |
The arrival of a child with CLP deformity is characterized by mixed feelings of joy and concern in the parents. In developing countries where mothers play the primary role of childrearing, they may often contend with lack of understanding and the cultural misconceptions associated with having such a child. These experiences all have effects on maternal and child well-being and, as such, are of great importance. According to Despars et al., considering that the family provides the foundation of a child's psychological and social development, the well-being of the mother may represent an important protective factor regarding the child's development. Parents naturally expect a perfect baby without problems. Therefore, the detection of a cleft during pregnancy (or at birth) and the presence of a visible disfigurement may complicate the role of parenthood and the encounter with the infant. Parents can experience a shock and they have to adjust to the loss of the anticipated perfect child; they are likely to experience emotional reactions such as confusion, denial, distress, and guilt, as well as feelings of loss of control, helplessness, and even depression in some cases.
The observed prevalence of psychological distress among the mothers of orofacial cleft babies of 23.1% [Table 1], is similar the estimates of probable psychiatric morbidity as seen in the general population, which had been given as 20-28%. This present study found that most mothers with Cleft Lip and Palate (CLP) seemed to have more psychological distress on the GHQ when compared to those mothers with babies with other orofacial clefts. In addition, these mothers with children with CLP and distress also had more than average stress scores on the PSS and abnormal beliefs of attribution on the MCA. These findings were however not statistically significant [Table 2]. This was, however, not statistically significant, and it is postulated that the obvious facial disfigurement of the infant in these categories may be the possible explanation. It is interesting that of the mothers who had babies with orofacial cleft, 38 (73.2%) had feelings of misery in relation to coping with the perceived deformity [Table 3], this feeling was associated with the experience of psychological distress in over a quarter of them which was statistically significant (P < 0.05). These mothers, however, did not undergo any further interviewing for definite psychiatric diagnosis by the researchers. Some researchers have found that the probable psychiatric morbidity commonly found in mothers with children born with orofacial cleft deformities is depression, and depressive symptoms have been found to be higher particularly in first-time mothers and mothers experiencing delays in treatment of their babies.
About a third of mothers with children born with cleft showing psychological distress had also not received surgical treatment for their babies at the time of the survey. This delay in surgery may have served as a stressor contributing to the observed emotional state of these mothers in this study location, though the delayed surgery was not a statistically significant finding when compared also with mothers without psychological stress. Some self-reports by parents and individuals with CLP, regarding the level of satisfaction post surgery, observed that unrealistic expectations by parents can also play a pivotal role in the development of psychological distress.
Attribution of causation
Among mothers with babies born with cleft deformities, while most accepted the doctor's diagnosis, a small fraction revealed that they had difficulty accepting the diagnosis and a few disbelieved the diagnosis. Though some of the mothers believed that the cause of the cleft was either medical in nature or a spiritual affliction, a significant group had no understanding at all of causation. Witchcraft, self-blame, and misery were other causative attributions and feelings found among these mothers. The attitudes of patients, patients' families, and the community toward the nature and causes of orofacial clefts have been reported to be important to the therapeutic process as well as in the social and emotional development of patients. Only one of the mothers expressed a spiritual belief about causation. This was not the same as findings by earlier researchers. Some studies on beliefs about the causes of cleft deformities exist in the literature, and most of these beliefs are reported to depend on the cultural and religious leanings of the society under study. In Nigeria, many deformities have been attributed to supernatural forces,, as in the Hausa/Fulani, who attribute the etiology to the “will of God." In another study on the cultural beliefs of Nigerians about the etiology of cleft deformities, it was reported that the Igbo, Bini, Urhobo, and Yoruba groups implicated witchcraft, evil spirits, or the devil. In contrast, eclipse and bad luck are the causes most reported to be believed by people in India. In Egypt, some parents believe that their child's cleft was the result of gazing at a camel for too long. It is proposed that the responses obtained in this study are possibly a reflection of the selection process, where the mothers surveyed were part of a hospital population, perhaps including a portion of those who do not hold such beliefs—hence their willingness to make use of orthodox medical services. Mothers who hold firmly traditional beliefs are less likely to resort to hospital services for care. This makes a case for a larger population-based study.
Perception of stress
In the present study, mothers who had children with CLP deformities seemed to experience more psychological distress and more than average perceived stress than those who had children with either only isolated cleft palate deformities or only isolated cleft lip deformities; this finding was, however, not statistically significant. A combined cleft lip and palate deformity is the most severe of the three types of cleft deformities described in this study, and as earlier mentioned, the extent and severity of this class of deformity may be more associated with feelings of shame, worry, and low mood, as well as perceived stress, which are all related to psychological well-being, than the other two cleft types are.
A recent study in 2014 by Habersaat et al., however, suggests that despite the facial disfigurement and stress engendered by treatment during the first months of the infant's life, children with cleft and their mothers often do as well as families without cleft with regard to the mothers' mental health, mother-child relationships, and later quality of attachment. That study emphasized the need for parents to understand the origin of the cleft and receive adequate support and care in promoting good maternal mental health. Thus, while it is not unusual that these mothers become psychologically distressed in the process of caring for the babies, facing the stress of hospital-related demands, and getting to understand the nature of their infant's condition, with adequate support they would have a good chance of doing as well as other mothers who have babies without cleft deformities.
The present study highlights that more than half of those mothers who had higher perception of stress also had scores suggestive of psychological distress and that they reported feelings of depression in relation to caring for their children with CLP. Though there was no clear association of this distress with any specific type of orofacial clefts, the associated emotional symptoms, such as stress, shame, misery, feelings of depression, etc., all experienced in the course of caring for a child with cleft may be seen as a relevant link.
One of the limitations of this study is that no definitive diagnostic tool was employed to further confirm the presence of a psychiatric illness, such as a depressive disorder, among the study participants. A second limitation is that because this was a cross-sectional study with a hospital-based population and a small sample size, the findings are proposed modest inferences and not necessarily generalizable to the larger population.
This study has implication(s) for service/policy development and also in providing a direction for future research. In addition, the study brings to the fore the importance of psychiatry/psychological risks associated with inadequate knowledge about this condition among mothers of children born with cleft lip and palate deformities. Early maternal mental health support with public and individual health education on the subject of orofacial clefts is recommended to be included as part of the protocols of awareness creation and long-term mental health promotion for babies with CLP in this environment.
| Conclusion|| |
Mothers of babies with orofacial cleft had psychological distress in proportions similar to the general population. Lack of an understanding of causation, a more-than-average perception of stress, and feelings of sadness were found to be associated with psychological distress among the mothers of babies with cleft deformities in this study.
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Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3], [Table 4]