Issues related to disability in India: a focus group study.

ABSTRACT

BACKGROUND: Systematic research into disability has been scarce, especially from India, even though an estimated 5% of the population may have significant disability due to physical disorders. Depression as a common psychiatric disorder affects about 3%-5% of the population. Thus, the impact of disability related to physical, mental and substance use disorders is enormous and it influences resource allocation and policy planning. METHODS: The issues relating to disability were addressed through a qualitative multicentered study. Focus groups were conducted at three sites in Chennai, Bangalore and Delhi on three themes (i) parity, stigmatization and social participation; (ii) current practices and needs; and (iii) the General Disability Model as proposed by the World Health Organization. The focus groups were homogeneous and included members from six categories of participants: individuals with physical disability, individuals with mental disability, individuals with alcohol/drug-related disability, family members of mentally disabled persons, family members of physically disabled persons and health professionals. In all, 118 groups were conducted with a mean (SD) group size of 8.6 (1.6). RESULTS: Patients with mental and alcohol/drug-related disability were more discriminated against than those with physical disability. Awareness regarding the existing laws and social programmes was uniformly poor across the three centres. Stigmatization was a major reason for under-utilization of the meagre resources available. There was poor awareness of the Disability Act, 1996. The consumers felt more comfortable with the earlier terms of 'handicap' and 'impairment'. CONCLUSIONS: The study has implications for policy planning, clinical decision-making and social behaviour. Awareness of the laws, facilities and programmes needs to be increased, especially regarding the Disability Act, 1996 among consumers as well as health professionals. More disability-friendly facilities are required.