ABSTRACT
Background: In India, most individuals with an intellectual disability live with their families. The present study examines the perceived burden of family members, treatment expectations, and awareness of disability benefits for adult individuals with Intellectual Disability (ID). Methodology: A sample of 50 individuals registered in an Adult Psychiatry Unit was referred for intelligence assessment. The assessment was done using standardized psychological tests. Data was gathered using a semi-structured interview schedule during counselling the participants’ family members. Data obtained was examined using descriptive statistics. Results: Average age of participants was 27.5 years, and the majority 64%, were male patients. Comorbid conditions such as seizure disorder, psychosis and obsessive-compulsive disorder (OCD) were present in 46 % of the sample. Caregivers were primarily parents, and a higher level of family burden was due to behavioural problems. Half (50 %) of the sample was unaware of disability benefits. Conclusion: Findings indicate the need to address caregiver burden and plan psychosocial rehabilitation and improve awareness about disability benefits and its implications more consistently across India.
ABSTRACT
Research on sensitive issues such as abuse and violence in vulnerable populations poses several ethical dilemmas. An important aspect is the impact of such enquiries on one's mental health. This paper discusses specific ethical issues related to mental health based on violence research conducted and reviewed by the authors. Research on violence among women includes the possibility that some revelations are occurring for the first time and are likely to be emotionally charged. Further, the very act of disclosure may involve emotional risks for the respondent. Psychological distress may be present prior to, during, or following the study. Hence assessing mental health parameters becomes essential and integral to research of this nature. Several issues in methodology are also important in mitigating the level of distress. Research on sensitive issues should either use measures developed in the same culture or those with adequate adaptation. The order of questions, language and method of termination of the interview may often make a difference to its psychological impact. While focus group discussions and semi structured interview schedules are most suited, questionnaires with a less structured and rigid approach may also be used. Preludes may be introduced to facilitate transition between different sections of an interview schedule and to provide a rationale for further enquiry. Obtaining informed consent in violence research should be a process rather than a one-time formality. Reports of adverse events are likely in violence research and hence such studies must include mental health intervention, ongoing follow up, documentation and appropriate referral services. Finally, since the researcher and the subject of the research are both affected in a study of this nature, adequate sensitisation, ongoing training and supervision of research staff are essential. Based on findings from ongoing research on violence and from review of other studies done in India, the paper will focus on best practices in addressing mental health issues in domestic violence research.