Experience of Stigma and Help Seeking Behaviour among the Families with a Person with Intellectual Disability

Kamlesh Kumar Sahu, Jhilam Banerjee, Shikha Mukhopadhyay, Soma Sahu


Background: Negative evaluation based on particular features or behaviour of an individual or group is Stigma. Various medical conditions including Intellectual Disability is stigmatized in the society which has a significant implication on their treatment and rehabilitation. Stigmatization not only affects those who possess a stigmatized condition, it also impacts others people associated with stigmatized individuals (e.g., family, friends, and caregivers).  Stigma is a known cause for delayed treatment seeking and a challenge for treatment and care of suffers. Therefore, it is important to study the stigma as perceived by the caregiver and their help-seeking behaviour. In this juncture, this study is intended to see the picture of above mentioned variables in a tertiary care setting.
Aim: To measure the experience of stigma and help-seeking behaviour of the families with a person with intellectual disability and to see the association between variables.
Method: The study was a cross-sectional institutional based descriptive study. Criteria based sampling was employed to select 37 parents either father or mother of a person with intellectual disability who were living with a person with intellectual disability and attending the OPD of a tertiary care centre in Kolkata, India. Socio-demographic, Clinical data sheet Family Interview Schedule (FIS) and Goldberg’s Pathways of Care Instrument were used to assess study variables.
Result: Overall family members of a person with ID had to experience a high degree of stigma. Most (35%) preferred the first point to seek help was general physicians in private practice which remained same in the second most (27%) preferred place to seek help followed by third most (34%) preferred first place to seek help was tertiary care hospital which was the least preferred as first point. Treatment or care heavily relies on faith healer which is somewhat consistent with the other studies finding.
Conclusion: Family intervention should be a center of attention to address the stigma experienced by the parents.


Intellectual Disability, mental retardation, help-seeking behaviour, family, pathways of care, stigma

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ISSN: 2454-6623