Depressive Symptoms And Stigmatization Among Parents Of Children With Intellectual Disabilities: Cross-Sectional Survey In Public Primary Special Schools In Nairobi, Kenya

study determine the prevalence of depressive and stigmatization A cross-sectional descriptive study design was used to sample 121 parents of children with intellectual disabilities in four public primary special schools in Nairobi, Kenya Data were collected using a researcher designed socio-demographic questionnaire, Beck Depression Inventory (BDI-II) to screen depressive symptoms and the DISC-12 used to determine stigmatization among parents of children with intellectual disabilities. Descriptive statistics were used to examine the depression scores, discrimination and stigma scores. Independent samples t-test, and one-way analyses of variance (ANOVA) were used to identify group differences at the bivariate level. Generalized linear models were used to identify independent predictors of discrimination and Stigma. burden, marital satisfaction and experiences of social exclusion in parents of children with intellectual disabilities. The current study found stigma and discrimination to be significantly related to parent’s depressive symptoms independently of other variables. In the study stigma reflects the extent to which parents felt fairly untreated, self-stigma, their ability to


Abstract Background
Parents of children with intellectual disabilities may develop depressive symptoms and are prone to stigmatization due to stressful challenges encountered when providing care for their children. The study objective was to determine the prevalence of depressive symptoms and stigmatization among parents of children with intellectual disabilities.

Method
A cross-sectional descriptive study design was used to sample 121 parents of children with intellectual disabilities in four public primary special schools in Nairobi, Kenya Data were collected using a researcher designed socio-demographic questionnaire, Beck Depression Inventory (BDI-II) to screen depressive symptoms and the DISC-12 used to determine stigmatization among parents of children with intellectual disabilities. Descriptive statistics were used to examine the depression scores, discrimination and stigma scores. Independent samples t-test, and one-way analyses of variance (ANOVA) were used to identify group differences at the bivariate level. Generalized linear models were used to identify independent predictors of discrimination and Stigma.

Conclusions
The risk of depression is high among parents of children with intellectual disabilities. Results of this study suggest that interventions could be developed that have a focus on the health or well-being of parents. Reduction of societal stigma could reduce psychological distress to parents.
Another risk of parental stress is stigma (Cantwell, Muldoon, & Gallagher, 2015). Stigma refers to negative impacts of behaviour and attitudes from the public (E Goffman, 2009). Stigma has been defined as "an attribute that is deeply discrediting and reduces the bearer 'from whole and usual person' to a tainted discounted one (Erving Goffman, 1963)". In a revised definition of stigma by ( In addition to the limited studies that have been carried out on prevalence of depressive symptoms in parents of children with intellectual disability, anecdotal reports show that the incidence of children with ID is high suggesting the burden of care of such children could be overwhelming to parents in this country leading to depressive symptoms.

Objectives
The overall aim of this study is to establish the prevalence of depressive symptoms and stigmatization among parents of children with intellectual disabilities. The specific objectives aimed at determining the socio-demographic characteristics of parents of children with intellectual disabilities, the levels and severity of depressive symptoms among parents of children with disabilities and, finally, establishing the association between stigmatization and depressive symptoms among parents of children with intellectual disabilities.

Methods
Design and study population We adopted a cross-sectional survey design. The study was conducted among 121 parents of children with intellectual disabilities in four public special schools in Nairobi County. Nairobi is the capital city of Kenya with six special schools closely located within proximity and easily accessible in the capital.
These schools are governed by the county government under the Ministry of Education. Enrolment to these schools is done by the Kenya Institute of Education which make an education assessment and determine level of disability. During the period of the study the total number of learners registered in these schools was estimated at 690. Majority of the learners (90%) experienced mild to moderate intellectual disability. Ten percent of the learners had severe disability. These schools have a specified curriculum on functional academic subjects and vocational training for the mild -moderate learners while life skills and daily living skills are targeting those young people who are severely impaired.

Study Participants
Participants above the age of 18 who were willing to give informed consent were recruited. In the selection of 121 participants we used an estimated prevalence rate of 79% of caregivers with depression from (Mbugua et al., 2011). The Cochrane formula (Czaja & Blair, 2005) was used for the sample size calculation. The formula addresses continuous and categorical statistical variables and applies key risk factors like confidence level that is acceptable (95%) and a precision of 0.05. In order to identify caregivers of children with intellectual impairment we decided to approach special needs schools where the parents could be contacted. This means that we required 186 parents. The total number of children in the four targeted schools is 682. The number was adjusted for a finite population; a total of 121 participants were required. Proportionate samplings were used to enroll the number of parents in each school.

Measures
Socio-demographic characteristics A researcher designed socio-demographic questionnaire was developed to capture the respondent's characteristics as well as their children and family. These included age, income, marital status, and A pre-test baseline assessment was made using these questionnaires was carried out on a few of the subjects to establish the reliability and validity of data collection instruments. The instruments were corrected in close collaboration with the supervisors and other professional in field. Parents attending school meetings in special schools were given verbal as well as written participants form explaining purpose of study and confidentiality was assured. Those who volunteered gave written consent to participate and were told that they could decide to stop filling in the questionnaires anytime. No financial compensation was given for their participation.
Individual questionnaires were provided and participants who required help in completing the questionnaire were assisted by the researcher who read out the questions to them without interpreting them. Parents filled the questionnaires at their own discretion and privacy was safeguarded by allowing them sit where they felt comfortable in the school halls. Completed questionnaires were collected by the researcher, stored safely before analysis was done.
Psychological support was given to parents who elicited emotional distress during and after filling in the questionnaires.

Ethics And Informed Consent
The University of Nairobi/Kenyatta National Hospital Ethics Review Committee provided ethical approval for this study (P100/02/2015). All patients included in this study provided informed consent prior to participation in the study and gave consent for publication of the findings.

Data Management And Statistical Analysis
Descriptive statistics were used to examine the depression scores, discrimination and stigma scales by means of means and standard deviations for continuous variables and proportions for categorical variables. Independent samples t-test, ANOVA, were used to identify group differences. Generalized linear models were used to identify independent predictors of discrimination and stigma. All analyses were conducted using IBM SPSS version 23 (IBM, New York USA).

Socio Demographic Characteristics
Of the 121 parents who participated in the study 77.69% (n = 94) were female. Socio-demographic characteristics of the respondents are presented in Table 1. Parent's age ranged from 18 years to 45 years and above. More than half of the parents 72.7% (n = 88) were in the age band of 36-45 years and above. Most of the parents were married 69.9% (n = 79), Most of the parents 61.1% (n = 69) had post-secondary education at the time of the study were employed 78.5% (n = 95), either working part time, full time or self-employed. More than half (68.8% n = 75) were earning a monthly income of more than Ksh 10,000. Most of those employed were self-employed 38.02% (n = 46). More than ¾ of our sample (83.9%) indicated that they had experienced significant care burden.

Bivariate Associations And Multivariate Analysis
The bivariate association between stigma, the socio-demographic and other characteristics are presented in Table 3. Significant associations are those which were P < 0.05 and these are indicated by bolded values for each of the four subscales.  Table 4 presents the results of multivariate analysis of factors that were significantly associated with the outcomes at the bivariate level.

Unfair treatment sub-scale
Participants who were single and married had significantly lower scores as compared to those who were either divorced or separated. Those who were unemployed had significantly lower scores as compared to those who were employed. No significant associations were found between unfair treatment and depression scores.

Stopping self
Participants with primary and below levels of education had significantly high scores as compared to those with post-secondary education. High scores of stopping self were associated with significantly low depression scores.

Overcoming stigma
Participants who were in the younger age band (18-25 years) had significantly higher scores as compared to those who were old (45 + years), however participants who were ages 26-35 years had significantly lower scores as compared to those aged 45 and above years. Those who were married had significantly low scores as compared to those who were either divorced or separated. Those who were unemployed had significantly lower scores as compared to those who were employed.
Participants with children with intellectual disability ages 10-12 years had significantly high scores as compared to those with children over 18 years. Having a care burden was associated with high scores as compared to those without. High scores were negatively associated with higher depression scores.

Positive treatment
Participants ages 36-45 years had significantly high scores as compared to those aged above 45 years. Respondents with children with intellectual disability aged 10-12 years had significantly higher scores as compared to those with children with intellectual disability aged over 18 years.
Having a care burden was associated with high scores as compared to those without. No significant associations were found between positive treatment scores and depression scores.

Discussion
The study explores the mental health needs of caregivers of children with intellectual disabilities face and leads us to conclude that they is a need to routinely screen caregivers of children with intellectual disability for depressive symptoms. In this study 41.3% of parents met the criterion for being at risk of clinical depression (using a score of 11 or higher using BDI scale). A previous study carried out in Kenya demonstrated a higher prevalence at 79% of caregiver depressive symptoms (Mbugua et al., 2011). This particular study looked at prevalence of depression among caregivers of children with intellectual disability in a rural setting in Kenya. In our study, caregivers lived and worked in various parts of Kenya and their children are registered in Special public primary schools in Nairobi County.
The schools we selected are boarding schools thus the parents are not primary caregivers during the term and only take care of the children during the school holidays. Unlike most day schools where the parent frequently interacts with the child the children in the study were in boarding schools and only had minimal interactions with parents during the school holidays and special school dates such as visiting or parents meetings. There lies the significance of such a study that addresses a diverse sample of caregivers, assessing their mental health needs and challenges.
We found an association between gender and a higher risk of depression. There were more female than male caregivers because most female parents were the sole caregivers of the children and were also emotionally attached to their children unlike their male counterparts. The study was carried out during school meetings which we learnt were mostly attended to by female caregivers to check on their children. Most of the parents were married (69.19%), employed (78.51%) and had significant incomes to support burden of care of their children.
The current study found out that younger parents (18-26 years) were at a higher risk of depression (60%). In support of these findings was a study by (Dave et al., 2014), carried out in Gujarat, India study which found that being a younger caregiver was predictive of higher levels of depressive symptoms.
There was a statistically significant association between marital status and depression (P = 0.003).
The divorced and separated parents had significant higher levels of depression (76.47%) than the single and the married ones. In an earlier study, (Frey, Fewell, Vadasy, & Greenberg, 1989) found that 16.5% of divorced/separated and single caregivers may have adopted coping strategies therefore had a lower risk of clinical depression compared to married caregiver. In the current study, married caregivers were the majority (69.91%) and cited to have marital satisfaction and happiness thus lower depression scores. By contrast, (Mbugua et al., 2011) found that single caregivers were at higher risk of depression due to lack of emotional support from the spouse). There is need to avail a support system to prevent or reduce the risk of depression. This may include specialized information, caregiver training, education and family counselling aimed at a more holistic way of care.
The other statistically significant risk factor to the development of depressive symptoms was caregiver burden with a p value of 0.033. In the current study, the results showed that 38.36% (n = 47) experienced burden of care. (Saunders, 2003)found that caring exerts pressure on the caregiver.
As the stressors increase and the condition persist, the caregiver symptoms may worsen. This deterioration of caregiver health may impact on their ability to maintain their various roles and responsibilities.
This study also found statistically significant relationship between caregiver education and depressive The results of this study show a significant association between depressive symptoms and unfair treatment. This is in keeping with a study done in Ireland that showed that parents of children with disabilities reported more depressive symptomology, higher stigma and lower self-esteem Inability to overcome stigma significantly increased levels of depression, (Cantwell et al., 2015).
Higher levels of anticipated discrimination were moderately associated with increasing age, but the strongest association was with gender. Females anticipated higher levels of discrimination than males in several areas including housing, employment and family life. The introduction of methods to minimize discrimination towards people with intellectual disabilities at individual, institutional, and structural levels and the identification of effective strategies to reduce anticipated discrimination by people with intellectual disabilities towards themselves might be necessary to tackle stigma and discrimination.
Providing parents with methods for dealing with perceived stigma and highlighting the importance of attending support groups for emotional support may mitigate some of the negative consequences of stigma, such as the impact on coping and support.
Overall, 15.7% of participant felt that they had stopped themselves from initiating a close relationship, applying for work and from applying for education or training. This is consistent with global study (Lasalvia et al., 2013) that reported 37% of participants had stopped themselves from initiating a close personal relationship using the same scale. Importantly 72.73% reported positive treatment in various domains of life. These findings suggest that the social environment could be a source of support to caregivers, depending on the context or the personal resources of the individual.

Limitations Of The Study
The study did not look into pre-existing depression which may have had an influence on the findings.
The study was limited to urban schools, and thus the results cannot be generalized to the rural population. It is important to note that the participants selected for this study were drawn from a convenience sample of caregivers whose children were registered in special schools in Nairobi which are few. The sample has a higher level of formal education and a greater percentage is married. The results may not reflect the general population of parents of children with intellectual disabilities.
Larger populations randomly selected from a national sample may be the focus in future studies to determine with more confidence the prevalence of depression and levels of stigma among caregivers of children with intellectual disability.

Conclusions
Stigma and discrimination acts as a barrier to social participation and successful vocational participation for parents and in turn a contributor to development of depressive symptoms. The rates of parent's depressive symptoms and levels of stigmatization suggest that interventions should include attention to the mental health and recovery of parents in addition to their children. Young parents, male parents and those with lower levels of education are particularly at risk of depression and high levels of discrimination and stigma. The findings suggest that future interventions designed to decrease stigma in society should include parents of children with disabilities.

Competing interests
The authors declare that they have no competing interests.

Authors' contributions
The study was carried out by Mercy Githara who drafted the concept, collected data and carried out

Consent to publish
Informed consent was given from participants in this research for future uses of data, such as publication, preservation and long-term use of research data. Confidentiality was assured. The information collected was kept confident, serial numbers was used instead of names.

Availability of materials
Deidentified data file would be made available upon reasonable request to the corresponding author.

Funding
This research was primarily funded by the first author who carried out data collection as part of her Masters in Clinical psychology program.