week 4 assignments
A pilot study evaluating depression in mothers with children diagnosed with Down syndrome in state health care
M. Swanepoel1 & T. Haw1,2
1 Division of Human Genetics, School of Pathology, Faculty of Health Sciences, The University of the Witwatersrand, Johannesburg, South Africa 2 Clinical Genetic Unit, National Health Laboratory Service, Braamfontein, Johannesburg, South Africa
Abstract
Background Parenting a child who has an intellectual disability has been shown to increase the risk for developing depression. The purpose of this study was to screen for depression and to determine if there is an association between depressive symptoms and certain sociodemographic factors in mothers with a child diagnosed with Down syndrome in state health care facilities in Johannesburg. Methods The study included 30 biological mothers of children between 6 months and 3 years diagnosed with Down syndrome postnatally. The Edinburgh Postnatal Depression Scale (EPDS) was used to assess depression in participants. A 10-item sociodemographic questionnaire was concurrently administered. Data analysis was conducted using de- scriptive and inferential statistical analysis. Results The 30 mothers had a mean EPDS score of 9.1 (SD = 5.89) with scores ranging between 0 and 26. Eight mothers (26.7%) screened positive for depression with an EPDS score of 13 or greater. A statistically significant association was found between
an HIV-positive status and mothers who had an EPDS score of 13 or greater (P = 0.01). No significant association between depression and various other sociodemographic factors was identified. Conclusions Mothers with a child diagnosed with Down syndrome may be vulnerable to developing depression. A significant association was found between a positive HIV status and symptoms of depression, in mothers with a child diagnosed with Down syndrome. This study indicates the need for further investigations assessing the causes and risk factors resulting in postnatal depression in mothers with a child diagnosed with Down syndrome.
Keywords Down syndrome, Edinburgh Postnatal Depression Scale, intellectual disability, maternal depression, postnatal depression, trisomy 21
Introduction
Down syndrome and its incidence in South Africa
Down syndrome, also known as trisomy 21, is a genetic condition which occurs when there is an extra partial or complete copy of chromosome 21 (Bull 2011). Non-disjunction (the failure of segregation of homologous chromosomes during cell division) accounts for 95.0% of cases of Down syndrome, and
952
Correspondence: M. Swanepoel, Division of Human Genetics,
School of Pathology, Faculty of Health Sciences, The University of
the Witwatersrand, National Health Laboratory Service, Corner
Hospital and De Korte Street, Braamfontein, Johannesburg, 2001|
PO Box 1038, Johannesburg, 2000, South Africa
(e-mail: [email protected])
Journal of Intellectual Disability Research doi: 10.1111/jir.12549
VOLUME 62 PART 11 pp 952–961 NOVEMBER 2018
© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
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it occurs more frequently in women of advanced maternal age. The remainder of Down syndrome cases are explained by mechanisms of chromosome translocation or mosaicism (Bull 2011).
Children with Down syndrome have intellectual disability, are short in stature, hypotonic and have distinctive facial features (Bull 2011). They are also at risk of multiple other medical complications including congenital cardiac defects which often need to be corrected surgically (Bull 2011).
Down syndrome is one of the most commonly seen syndromes in genetic clinics across the world (Sheets et al. 2011). Late initiation of antenatal care in South Africa and lack of available screening in most centres means few women have the opportunity to receive prenatal testing and diagnosis of Down syndrome (Urban et al. 2011).
Postnatal depression risk factors and its effect on the child
Postnatal depression is a common mental health issue worldwide; however, data from South Africa suggest that the prevalence may be higher than those reported in other countries (Kathree et al. 2014). Postnatal de- pression occurs predominantly within the first 3 months after birth. The duration of postnatal depression is variable, with many women reportedly still being af- fected between 3 and 6 months after onset but some- times up to 3 or 4 years after onset (Hewitt and Gilbody 2009). Risk factors associated with developing postna- tal depression include a prior history or family history of mental illness, partner conflict, poor social support, obstetric complications and low socioeconomic status (Huang and Mathers 2001; Patel et al. 2002).
Maternal depression can result in child neglect and can impede cognitive development in an infant as a result of reduced responsiveness from the mother (Kathree et al. 2014). Identifying and treating depression in mothers can have a lasting positive outcome not only for the mother but also for other family members (Cuijpers et al. 2014).
Risk for depression in parents of children with Down syndrome
Parenting a child who has an intellectual disability such as Down syndrome increases the risk for developing depression due to less family involvement in social activities and more financial strain,
caretaking responsibilities and time demands for educational activities (Padeliadu 1998; Most et al. 2006; Povee et al. 2012). A study conducted in Switzerland identified that lower education levels, lack of income and partner conflict greatly contrib- uted to feelings of hopelessness that mothers with children with Down syndrome experienced. The au- thors emphasised the importance of psychosocial and socioeconomic support offered to mothers (Yildirim and Yildirim 2010).
A North American study reported that families with children with Down syndrome show remarkable resilience, stating that lower levels of stress are experienced when families have psychosocial support and are well resourced (Van Riper 2007). It has also been found that families with a child who has Down syndrome that is more socially responsive, has better language development and fewer behavioural problems report less maternal stress and better family functioning (Povee et al. 2012). It however remains unclear which factors contribute most to causing parental stress and depression.
Maternal depression studies conducted in South Africa and internationally
We were unable to locate published studies which had assessed symptoms of depression in South Africa, in women who have a child with Down syndrome. However, at least one study has assessed postnatal depression in a population group from the same area (Soweto), and at least two studies have highlighted that antenatal and postnatal depression in different regions in South Africa is a significant cause for con- cern (Ramchandani et al. 2009; Manikkam and Burns 2012; Stellenberg and Abrahams 2015). A cohort study conducted in Soweto, Johannesburg, identified a postnatal depression rate of 16.5% using the Pitt Depression questionnaire and identified exposure to crime, poverty and partner conflict as the highest correlating social stressors which increased the risk for developing postnatal depression in mothers (Ramchandani et al. 2009).
A study which screened for the prevalence of postnatal depression in mothers, in a rural Cape community using the Edinburgh Postnatal Depression Scale (EPDS) and the Beck Depression Inventory in South Africa, showed that 50.3% of the sample screened positive for depression (Stellenberg and Abrahams
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M. Swanepoel & T. Haw • Depression in mothers: children with Down syndrome
© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
2). Similarly, a study which assessed general antenatal depression rates and associated risk factors in the Kwa- Zulu Natal province of South Africa showed that 38.5% of recruited mothers screened positive for depression. Causative risk factors associated with depression in this study included predicted adverse neonatal outcomes, single marital status, unplanned pregnancy and a hu- man immunodeficiency virus (HIV) positive status (Manikkam and Burns 2012).
Most international studies assessing maternal postnatal depression have found lower rates of depression than described in South Africa. Variable rates of postnatal depression have been found in Italy, with a recent study reporting that 4.7% of mothers screened positive for depression on the EPDS whilst an earlier study found 12.6% screened positive (Clavenna et al. 2017). A study done in Australia found that only 3.3% of participants experienced postnatal depression (Ogbo et al. 2018). A study in the USA found a postnatal depression prevalence rate ranging from 8.0% in the state of Georgia to 20.0% in the state of Arkensas (Ko et al. 2017). In Vietnam, which is a developing country, the postnatal depres- sion rate was found to be 18.1% (Murray et al. 2015). Both the study in Australia and Vietnam identified low socioeconomic status and lack of a supportive partner as predominant risk factors (Murray et al. 2015; Ogbo et al. 2018).
Higher rates of postnatal depression have been found in developing countries than in developed countries, which highlights the complexity of the condition and the multiple predisposing factors involved (Ramchandani et al. 2009; Manikkam and Burns 2012; Stellenberg and Abrahams 2015; Clavenna et al. 2017; Ko et al. 2017; Ogbo et al. 2018). The purpose of this study was to screen for depression in mothers with a child diagnosed with Down syndrome in state health care facilities in Johannesburg, South Africa. Further- more, we aimed to determine whether certain sociodemographic factors were positively associated with cognitive and affective symptoms of depressive illness in our study group.
Methods
Participants
The study included 30 biological mothers of children between the ages of 6 months and 3 years who had
been diagnosed with Down syndrome postnatally. The mothers were recruited from the Down Syndrome Support Group and specialist clinics at tertiary hospitals in Johannesburg in the Gauteng Province of South Africa using convenience sampling. Specialist clinics included the Genetic Counselling, Cardiology, Developmental and Endocrine Clinics. All mothers were proficient or had reasonable profi- ciency in English. There was no participation bias, as none of the mothers identified for the study declined to take part in the study.
Procedures
Quantitative data were collected from May to July 2017. The two questionnaires, namely the EPDS and a 10-item sociodemographic questionnaire, were administered to each participant by the principal investigator. Written informed consent was obtained from all mothers who participated.
Upon completion of the EPDS, the principal investigator immediately evaluated the score and enquired further about feelings of depression and risk of self-harm where necessary. All participants who scored 13 or greater on the EPDS questionnaire, and mothers who voluntarily expressed a need for psychological counselling were referred to psychology services at the respective hospital.
Questionnaires
Edinburgh Postnatal Depression Scale
The EPDS was used to screen for depression in participants (Cox et al. 1987). The EPDS is a 10-item self-report screening measure which aims to identify symptoms of depression experienced in the previous 7 days. All questions are scored on a 4-point scale, indicating the presence and severity of a symptom, with a total score range of 0–30. The initial validation of the scale suggested a threshold score of 12 or 13 to be used as an indicator of major depression. It was specifically designed to detect depression in the postnatal period and does not primarily focus on somatic symptoms but rather on the identification of affective and cognitive symptoms (Cox et al. 1987). The time and duration of symptoms identified in mothers was not collected; therefore, no distinction was made between postnatal depression and other depressive illnesses.
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M. Swanepoel & T. Haw • Depression in mothers: children with Down syndrome
© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
The EPDS was chosen because it was previously validated in the Gauteng Province of South Africa, and it was validated against the Diagnostic and Statis- tical Manual of Mental Disorders (DSM-IV) criteria for screening for depression (American Psychiatric As- sociation 1994; Lawrie et al. 1998). The scale was shown to have sensitivity of 80.0%, specificity of 76.6% and does not have to be administered by a health care practitioner specifically trained in psychi- atry and is therefore a valid screening tool for de- pression in South Africa (Lawrie et al. 1998; Manikkam and Burns 2012).
Sociodemographic questionnaire
The sociodemographic questionnaire administered to participants consisted of self-report items based on factors associated with depression in a previous study, namely age of mother, number of children, highest level of education, employment status, source of household income, relationship status and HIV status (Manikkam and Burns 2012). Questions regarding race, social support received from family and friends, age of child at diagnosis and current age of child diagnosed with Down syndrome were also included.
Ethics
Ethical clearance was obtained from the Human Research Ethics (Medical) Committee at The University of the Witwatersrand (Ethics Reference: M170259). Institutional and departmental approval was obtained from the tertiary hospitals.
Data analysis
The data were analysed using GraphPad QuickCalcs and STATA Data Analysis and Statistical Software (Graphpad.com 2017; Stata.com 2017). These freely available software programs were used to conduct descriptive and inferential statistical analysis. Data were organised per measures of central tendency (mean and median), and dispersion analysis was used to determine the range and standard deviation of the collected data. A Shapiro–Wilk test was used to assess the normality of continuous variables.
The relationship between categorical variables and the number of screen positive depressed mothers (EPDS score of 13 or higher) was analysed individually, using two-tailed Fisher’s exact tests and
a chi-square test. The continuous variables (age of mothers, age of child at diagnosis, current age of the child and the number of children) were compared individually against the variables mean depression score, using a t-test, for normally distributed data and a Mann–Whitney U test for non-normally distributed data. These independent calculations aimed to establish and support whether a statistically significant relationship exists between a positive depression screening test score and identified sociodemographic factors. A two-tailed P value of less than 0.05 was considered statistically significant. A multiple regression analysis could not be reliably calculated due to the insufficient sample size.
Results
Sociodemographic characteristics of mothers and children
The ages of the 30 mothers of children with Down syndrome ranged from 25 to 46 years. Table 1 shows the sociodemographic profile of mothers of children with Down syndrome. A majority of the mothers (86.7%; n = 26) were of black African ancestry, with four mothers (13.3%) being of mixed ancestry. A high percentage of mothers (70.0%; n = 21) were in a relationship. The number of children ranged between one and eight with the median number of children being three. At the time of data collection, the children with Down syndrome were between 6 months and 3 years of age. The median age of diagnosis was 3 days, but ranged from 1 day to 1 year after birth.
Six mothers (20.0%) had completed tertiary education in the form of a degree or diploma. Eleven mothers (36.7%) reported that completion of secondary schooling was their highest qualification, and 13 mothers (43.3%) had not completed primary and/or secondary schooling.
Most of the mothers (60.0%; n = 18) were not working with 23.3% (n = 7) being unemployed and 36.7% (n = 11) choosing to be stay-at-home mothers. Twelve mothers (40.0%) reported that they received weekly wages or monthly salaries. Many mothers had more than one source of income including unemployment benefits (10.0%; n = 3), receiving money from family support (43.3%; n = 13) or a monthly care dependency government
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John Wiley & Sons Ltd
social grant (60.0%; n = 18) which is provided to indigent families. All stay-at-home mothers were dependent on receiving a care dependency government social grant. Twenty-one mothers (70.0%) felt that they had sufficient social support from family and friends.
Of the 30 women, 20 (66.7%) said that they were HIV negative, eight (26.7%) said that they were HIV positive and two mothers (6.7%) said that they did not currently know their HIV status.
Outcome of the Edinburgh Postnatal Depression Scale
The 30 mothers had a mean EPDS score of 9.1 (SD = 5.89) with scores ranging between 0 and 26 (max score is 30). Eight mothers (26.7%) had an EPDS score above the screening cut-off of 13. Ten mothers (33.3%) were referred to see a psychologist because two women who had EPDS scores of 10 and 12 respectively, asked for a referral to psychology services.
Comparison of sociodemographic factors and a positive screening score for depression
Along with the sociodemographic profile of mothers of children with Down syndrome, Table 1 also illustrates the outcomes of the two-tailed Fisher’s exact tests and chi-square test calculated for the categorical variables and the categories of the number of mothers who had an EPDS score below 13 and those who had an EPDS score of 13 or greater. No statistical significance was found for race (P = 1.00), relationship status (P = 1.00), level of education (P = 0.47), employment status (P = 0.42) or social support (P = 1.00) and a positive screening score for depression. A statistically significant association was found between an HIV-positive status and mothers who had an EPDS score of 13 or greater (P = 0.01).
Table 2 shows the outcomes of the independent t- test and Mann–Whitney U tests calculated for continuous variables for mothers who had an EPDS score below 13 and those who had an EPDS score of 13 or greater. The current mean age of the children with Down syndrome, of mothers with a significant
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Table 1 Comparison of characteristics of mothers and a positive depression screening score
Categories Frequency Frequency of Mean F exact test
≥13 EPDS score EPDS score (SD) P value Race 1.00 Black 26 (86.7%) 7 (26.9%) 9.38 (5.93) Mixed ancestry 4 (13.3%) 1 (25.0%) 7.25 (6.08)
Relationship status 1.00 Single 9 (30.0%) 2 (22.2%) 7.67 (6.26) Married/partner 21 (70.0%) 6 (28.6%) 9.71 (5.77)
Highest level of education† 0.47†
Some primary/secondary schooling 13 (43.3%) 2 (15.4%) 7.62 (4.09) Completed secondary schooling 11 (36.7%) 4 (36.4%) 10.82 (6.88) Tertiary degree/diploma 6 (20.0%) 2 (33.3%) 9.17 (7.36)
Employment status 0.42 Employed (full time/part time) 12 (40.0%) 2 (16.7%) 8.42 (5.30) Unemployed/stay-at-home mother 18 (60.0%) 6 (33.3%) 9.56 (6.36)
HIV status† 0.01 Positive 8 (26.7%) 5 (62.5%) 13.13 (6.51) Negative 20 (66.7%) 2 (10.0%) 7.30 (4.91)
Social support* 1.00 Yes 21 (70.0%) 5 (23.8%) 8.57 (5.33) No 5 (16.7%) 1 (20.0%) 10.60 (9.10)
EPDS, Edinburgh Postnatal Depression Scale; SD, standard Deviation. *Mothers who indicated ‘unknown HIV status’ and/or ‘sometimes social support’ excluded; therefore, mothers do not total 30. †Chi-square test used due to 3 × 2 contingency table.
Journal of Intellectual Disability Research VOLUME 62 PART 11 NOVEMBER 2018
M. Swanepoel & T. Haw • Depression in mothers: children with Down syndrome
© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
EPDS score was 1 year and 5 months (CI: 5.22– 12.26), and no statistical significance was found (P = 0.40). The median age of mothers who had an EPDS score of 13 or greater was 38 years (IQR: 29.50–42.00). The age of mothers was not found to have a significant effect on the EPDS score obtained (P = 0.42). The median age of children at diagnosis, of mothers who had an EPDS score of 13 or greater was 2 days old (IQR: 1.00–53.23) and did not have a significant effect on the EPDS score obtained (P = 0.73). The number of children of the mothers who had screened positive for depression had a median number of three children (IQR: 1.00–4.00). The number of children was also not associated with depression (P = 0.65).
Discussion
A significant number of mothers with children with Down syndrome in our study screened positive for depression. It is important to contextualise these results within the rates of depression previously identified in South Africa to enable a better under- standing of them. HIV was found to be a factor that was associated with screening positive for depression in our study. This has important implications that need to be considered.
Parental stress of parents with a child with Down syndrome
The rate of depression in mothers of children with Down syndrome has not been well established and
described in the literature to allow comparison with our data. However, several studies show increased levels of stress in parents who have children with Down syndrome (Padeliadu 1998; Most et al. 2006; Norizan and Shamsuddin 2010; Povee et al. 2012). It has been shown in previous studies that parents of children with Down syndrome cope better than parents of children with other causes of intellectual disability (Fidler et al. 2000; Olsson and Hwang 2001; Abbeduto et al. 2004). This finding is attributed mainly to the parents understanding surrounding the nature and mechanism of a Down syndrome diagnosis and less behavioural concerns (Hodapp 2002; Povee et al. 2012).
Sociodemographic circumstances of South African state health care patients
South Africa is a developing country where great dis- parity exists between state and privatised health care (Benatar 2004). Communicable and non- communicable disease has greatly burdened the state health care system, as it serves the majority of South Africa’s impoverished and middle-income population groups (Mayosi et al. 2009). Maternal mental health is often neglected in the state health care system of South Africa, as the burden of disease such as diabe- tes, tuberculosis, HIV, cancer and cardiovascular disease fails to decline (Mayosi et al. 2009; Honikman et al. 2012). With little or no screening for maternal mental health issues in antenatal clinics, many women with mental health problems remain untreated (Honikman et al. 2012).
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Table 2 EPDS scores of mothers and their children diagnosed with Down syndrome and factors relating to their age or their child
test
Variable Sample mean
Mean (EPDS score <13)
Mean (EPDS score ≥13)
SD (EPDS score ≥13) t value P value
Current age of child (months)
19.83 20.77 17.25 9.84 0.88 0.40
Mann–Whitney U test Variables Sample
median Median
(EPDS score <13) Median
(EPDS score >13) IQR
(EPDS score >13) U value P value
Age of mother (years) 40.00 40.50 38.00 29.50–42.00 105.50 0.42 Age of child at diagnosis (days) 3.00 4.00 2.00 1.00–53.23 95.50 0.73 Number of children 3.00 3.00 3.00 1.00–4.00 98.00 0.65
EPDS, Edinburgh Postnatal Depression Scale; SD, standard deviation; IQR, interquartile range.
Journal of Intellectual Disability Research VOLUME 62 PART 11 NOVEMBER 2018
M. Swanepoel & T. Haw • Depression in mothers: children with Down syndrome
© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
Social welfare is the sole source of income for many mothers attending state health care in South Africa (Kathree et al. 2014). In our study, 60.0% of the par- ticipants were receiving a state funded care depen- dency grant, which is granted to those who earn below a certain level of income. Of the mothers screened, 43.3% had not completed their schooling. Being un- educated in an economy where jobs are scarce can be devastating and further reduces prospects and hope for a better future (Kathree et al. 2014). A lack of in- come has directly been linked to a perception of hopelessness in parents of children with Down syn- drome, which in turn increases the risk of developing depression (Yildirim and Yildirim 2010). Of the un- employed mothers in our sample, 33.3% screened positive for depression.
Contextualisation of depression rates identified in the study participants
As previously discussed, postnatal depression is believed to affect between 3 and 13% of all women in developed countries with higher prevalence estimates for developing countries such as Vietnam (Murray et al. 2015; Clavenna et al. 2017; Ko et al. 2017; Ogbo et al. 2018). In our study, 8 mothers (26.7%) screened positive for depression whilst 10 mothers (33.3%) were referred to psychology services for further eval- uation. This is considerably higher than the previous postnatal depression rate of 16.4% found in a cohort of Soweto mothers by use of a different screening tool (Ramchandani et al. 2009). The results of general antenatal depression rates, however, from the Kwa- Zulu Natal population (38.5%), general postnatal depression rates in a Cape rural community in South Africa (50.3%) and postnatal depression (39.0%) in Khayelitsha, South Africa, were found to be much higher than in our study (Hartley et al. 2011; Manikkam and Burns 2012; Lund et al. 2014; Stellenberg and Abrahams 2015). The factors con- tributing to the high rate of postnatal depression in the Khayelitsha study were found to be unemploy- ment, exposure to crime, a lack of support from partners and an HIV-positive status (Hartley et al. 2011).
In areas of South Africa with low socioeconomic status, there are few protective factors, which may increase the risk of postnatal depression (Parsons et al. 2012). Gender inequality in rural communities may
lead to abusive relationships and unplanned teenage pregnancies which significantly increases the risk of postnatal depression (Stellenberg and Abrahams 2015). This inequality and lack of education also contributes to the high rate of HIV infection in com- munities like Kwa-Zulu Natal, where the researchers found an HIV prevalence rate of 39.0% in pregnant women (Manikkam and Burns 2012). Being in an area where unemployment and poverty predominate increases the risk of witnessing or being a victim of violent crime, which further predisposes women to developing depression (Ramchandani et al. 2009). These factors are likely to account for the high rates of antenatal and postnatal depression detected in the South African studies discussed.
As the communities in South Africa vary markedly in terms of socioeconomic status and risk factors for postnatal depression, it is difficult to make meaningful comparisons between studies. Every research sample group needs to be considered on its own merit. The percentage of symptomatic depression identified in our study is high and deserves attention. Our results indicate that mothers in our sample are vulnerable and at risk for developing symptoms of depression which may go undetected. This can have adverse ef- fects on the women themselves, their child with Down syndrome, their other children and their partners (Cuijpers et al. 2014; Kathree et al. 2014).
HIV status and risks for developing depression
South Africa has an alarmingly high prevalence rate of HIV, ranging from 10.4 to 19.9% in low socioeco- nomic areas, with rates as high as 25.2% in individuals between the ages of 25 and 49 years of age (Zuma et al. 2016). The relationship between being HIV positive and depression has been well established in South Africa (Rochat et al. 2013; Lund et al. 2014; Casale et al. 2015; Wouters et al. 2016). Factors pre- viously found to be linked to developing depression in HIV-positive individuals include stigmatisation, so- cial discrimination, fears regarding the future impact on their family, poverty, lack of support, loss of loved ones and the inevitability of death (Andersen and Seedat 2009). The stigmatisation from society results in shame and internalised guilt, which often results in depression, regardless of other personal or socioeco- nomic factors (Simbayi et al. 2007). Peltzer and Shikwane (2011) found that similar factors, including
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M. Swanepoel & T. Haw • Depression in mothers: children with Down syndrome
© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
lack of social support, stigma and discrimination, were also significantly associated with an increased risk of depression in pregnant HIV-positive women.
We found a significant association between an HIV-positive status and a positive depression screening score in mothers of children diagnosed with Down syndrome (P = 0.01). Of eight mothers who said they were HIV positive, five screened positive for depression. Peltzer and Shikwane (2011) found a similarly high rate of depression (45.1%) in their sample of South African HIV-positive mothers, using the EPDS. Pregnant women in South Africa are rou- tinely screened for HIV during their antenatal check- ups, and therefore, many women may only be made aware of their HIV status upon attending an antenatal clinic (Parsons et al. 2012). Receiving devastating in- formation about a chronic illness during pregnancy can be overwhelming for a woman as it evokes con- cerns about fidelity in the relationship and her ability to care for her unborn child. This may lead to ongoing difficulties with bonding between mother and child and can lead to postnatal depression (Parsons et al. 2012).
Multiple interactive factors have been found to result in the development of postnatal depression. It remains unclear as to how having a child with Down syndrome and being HIV positive combine to increase this risk.
Limitations of the study
A larger sample size would have allowed for the possible identification of associations between more variables and a positive depression screening score. Having a control group would have allowed us to determine if mothers of children diagnosed with Down syndrome in state health care have increased rates of depression.
A sampling bias may have resulted in the recruitment of mothers with high-functioning depressive symptoms as the utilisation of clinic services has been shown to be decreased in mothers who suffer from depression as these mothers may be less responsive to their child’s needs and less proactive in preventative medical management (Minkovitz et al. 2005; Balbierz et al. 2015). Many severely depressed mothers may not have been identified due to reduced tendency to attend regular clinic appointments. Therefore, the percentage of
mothers who screen positive for depression may be higher than 26.7%.
Although the EPDS scale is one of the most widely recognised and implemented postnatal depression screening measures, it has been reported to more reliably detect postnatal depression in women with symptoms of anhedonia and anxious affect instead of psychomotor retardation symptoms (Guedeney et al. 2000). Use of a universal cut-off score has been cautioned against, as differences in cultures and languages may lead to great variability in the sensitivity and specificity of the EPDS scale score (Kozinszky and Dudas 2015). It is possible that these limitations may have resulted in some false negative scores.
Conclusion
Symptoms of depression were identified in 8 mothers (26.7%) of children with Down syndrome whilst 10 mothers (33.3%) were referred to psychology services for further assessment. This result indicates that mothers with children diagnosed with Down syndrome may be vulnerable to developing depression. Although it has been found that there is a high rate of postnatal depression in many communities in South Africa, this does not make our finding less important or worthy of attention. Health care professionals should be aware that mothers of children with Down syndrome are at risk of develop- ing depression and should therefore routinely screen and refer them for appropriate treatment and support.
A significant association was found between a positive HIV status and symptoms of depression, in mothers with children diagnosed with Down syndrome (P = 0.01). The cumulative effect of being HIV positive and having a child with Down syndrome on the risk of developing depression still needs to be explored.
Future studies with a larger number of participants could provide more accurate information with regards to the association of various sociodemographic variables and depression. A longitudinal study, including a control group, in which depressive symptoms are evaluated at birth, 6 months and 1 year post birth, would be useful to assess the increase or decrease of the severity of depressive symptoms in mothers. Research indicates the need for further investigations assessing the causes and exacerbating
959 Journal of Intellectual Disability Research VOLUME 62 PART 11 NOVEMBER 2018
M. Swanepoel & T. Haw • Depression in mothers: children with Down syndrome
© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
factors resulting in postnatal depression in mothers with a child diagnosed with Down syndrome.
Sources of Funding
The financial assistance of the National Research Foundation (NRF) towards this research is hereby acknowledged (Grant Reference: SFH160629175157). Opinions expressed, and conclusions arrived at, are those of the author and are not necessarily to be attributed to the NRF. We also wish to acknowledge the Health Science Research Office Biostatistics Department of The University of the Witwatersrand for offering guidance with the statistical analysis.
Conflict of Interest
The authors declare that there is no conflict of interest.
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Accepted 23 August 2018
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M. Swanepoel & T. Haw • Depression in mothers: children with Down syndrome
© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
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