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 symptoms p = < 0.001. Most of the parents 61.06% (n = 69) had post-secondary education, 27.43% (n = 31) had secondary education while 9.73% (n = 11) were primary school graduates and others had dropped out at primary level. Of all the caregivers only 1.77% (n = 2) did not have any formal education. Of those with primary education (n = 11) 63.64% had depressive symptoms. This finding is in contrast with (Grote et al., 2010; McLearn, Minkovitz, Strobino, Marks, & Hou, 2006; Mclennan, Kotelchuck, & Cho, 2001)undertaken in Florida a city in the first world unlike Kenya a developing country found that caregivers who had lower levels of education were more likely to report depressive symptoms. Higher level of education was associated with employment (business or self-employment), higher levels of income and lower risks of depressive symptoms.
(Thornicroft, Brohan, Rose, Sartorius, & Leese, 2009)in their study found that people with mental health problems experienced stigma and discrimination frequently. This is in keeping with the current study which found that 36.36% of caregivers experienced discrimination by family members, friends and the public. Fifteen-point seven percent (15.7%) had stopped themselves from applying for work, education and training. However, the rates were lower than the study by (Evans-Lacko, Corker, Williams, Henderson, & Thornicroft, 2014) as the participants had not been previously diagnosed with depression.
Ali et al., (2012) explored the role of stigma in parental wellbeing and this study demonstrated that stigma is associated with caregivers’ 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 avoid stigma and areas of positive treatment in regards to the disability of their child. These study findings are in keeping with a study done on global patterns of experienced and anticipated discrimination (Lasalvia et al., 2013).
Higher levels of experienced discrimination were associated with greater levels of depression. Similar studies found that levels of discrimination were high in depressed persons (Corker et al., 2013; Lasalvia et al., 2013; Thornicroft et al., 2009)
In the DISC-12 anticipated discrimination occurs when a person limits their own involvement in important aspects of everyday life because of the expectation of being discriminated against (for example, when an individual does not apply for a job because he/she fully expects to fail in any such application) (Lasalvia et al., 2013). A study by (Evans-Lacko et al., 2014)showed higher levels of experienced discrimination in a population diagnosed with depression.
Stigma and discrimination cut across all demographic factors with most parents feeling unfairly treated, this could be due to society stigma towards disability as well as lack of resources in our country to provide better services to people living with disabilities. These results are consistent with (Seltzer, Greenberg, Floyd, Pettee, & Hong, 2001)study on the life course impacts of parenting a child with a disability which found that there are emotional burdens associated with the stigma of the disabilities.
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.