Impact of Stigma on the Psychological Wellbeing of Mothers of Children with Learning Disability: A Case from India

Background: Learning disability (LD) hitherto neglected, is slowly emerging as a disability worthy of attention in India. Of the limited studies on LD in India, majority have focused on assessing the prevalence, or the impact of LD on children’s educational attainments, experience of stigma and social exclusion. However, enquiry into the impact of stigma associated with having a child diagnosed with LD on parental wellbeing outcomes, have not been a subject of adequate enquiry in the Asian context, where education in highly valued, and having a child diagnosed with LD is a source of significant stigma among caregiving mothers. Evidence primarily comes from qualitative studies.

In general, stigma has been known to impact the psychological wellbeing of caregivers, ultimately affecting the quality of care and support one would provide to a child with disability. As such, it is imperative to know the extent to which stigma impacts the wellbeing of the mothers of children with LD, and the factors that might mediate the relationship between stigma and wellbeing, so that appropriate social work interventions could be developed to help mothers cope with the stress of caregiving. To our knowledge this is the first study to use a stress and coping model by Pearlin (1981), in the context of India, to quantitatively assess the relationship between stigma, psychological wellbeing and subjective burden in mothers of children with LD.

Methodology: The study assesses the (1) levels of burden and psychological well-being of parents having children with LDs (2) determinants of burden and psychological well-being of parents of children with LDs (3) mediating role of subjective burden on the relationship between stigma experienced and ADL activities provided by caregivers of children with LD’s, and caregiver psychological wellbeing

100 mothers of children with LDs were purposively sampled and interviewed in the language of preference (English/Hindi) in Delhi, India. Measures included the following widely used validated scales: Zarit Burden Scale, Ryff Well-Being Scale, ADL items and Affiliate Stigma Scale. Descriptive statistics, correlation and regression analysis were used as the primary analytic tools.

Results: Of the two factors impacting burden and psychological wellbeing - stigma and assistance with daily living activities - only stigma significantly impacted both burden and wellbeing outcomes. Further, correlation showed that subjective burden was the only variable which met the requirements of mediation as suggested by Baron & Kenney (1986). Regression analysis showed that controlling for socio-demographic variables, stigma continued to significantly predict caregivers’ burden, β= 0.37, p<.001. However, when caregiver subjective burden was included in the equation, the relationship between stigma experienced by caregivers and their psychological well-being became non-existent, showing full mediation.

Implications: The study contributes to new knowledge in the emerging field of LD in India and paves the way for future research agenda to address issues around disability and caregiving in the global context. The findings underscore the need for developing, interventions for caregivers to effectively appraise stress of having a child with LD, and innovative strategies to reduce stigma to positively impact caregiver outcomes.