Researching Policy and Practice to Safeguard People With Intellectual Disabilities from Abuse: Some Methodological Challenges

Abstract

Abuse of adults with intellectual disabilities can and does occur in many places, and as a result, many countries have instituted policies and enacted laws to address this problem. However, research concerning the impact of such policies on abuse remains largely limited to quantitative studies from the perspective of governmental or other authorities and is generally focused on one area or country. Absent are the views and experiences of people with intellectual disabilities with respect to real or perceived abuse. Given the dearth of research involving primary consumers, there is limited knowledge as to the success or failure of such policies and laws. Though carrying out such research can pose methodological and ethical challenges, not undertaking it can also have ethical and social consequences. An international research agenda that includes participatory research that both facilitates the active involvement of and investment in people with intellectual disabilities and views action as an essential outcome is thus proposed. The authors propose such an agenda and posit that along with the collection and analysis of substantially more robust quantitative data, this should facilitate comparison within and between countries.

After Disclosure: A Research Protocol to Respond to Disclosures of Abuse and Sexual Violence in Research With Adults With Intellectual Disabilities

“…Studies that are community‐based, qualitative, or address sensitive topics, in particular, may facilitate abuse disclosures (Northway, Jenkins, Jones, Howarth, & Hodges, ). Research about responding to disclosures of abuse has focused on caregivers and family members (Burke, Bedard, & Ludwig, ), social service providers (Ahlgrim‐Delzell & Dudley, ), violence prevention initiatives (Baladerian, ), mental health and other healthcare professionals (Curry et al, ), law enforcement (Antaki, Richardson, Stokoe, & Willott, ), and legal systems (Pillay, ), but not researchers.…”

“…The prevalence of sexual violence is likely to be underestimated as underreporting is expected to be higher among people with ID (Northway, Jenkins, et al, ). There are also significant data quality issues related to tracking abuse, even in countries with relatively strong surveillance systems (Bartlett & Mears, ).…”

Supporting People with Intellectual Disability Who Have Experienced Abuse: Clinical Psychologists' Perspectives

“…Further, individuals may make attempt to initiate their own safeguarding, and fail to achieve appropriate assistance (Hollomotz, 2012). This is despite the fact that people with ID can articulate their emotional landscape and experiences of abuse (Northway, Jenkins, Jones, Howarth, & Hodges, 2013).…”

Community-Based Participatory Research to Adapt Health Measures for Use by People With Developmental Disabilities

“…These challenges become particularly important when trying to collect informa tion about sensitive topics such as violence and health. 5 CBPR may be a particularly promising way to decrease barriers to participation in research by people with DD. 5,6 CBPR allows researchers and community members to serve as equal partners throughout all phases of the research process.…”

“…5 CBPR may be a particularly promising way to decrease barriers to participation in research by people with DD. 5,6 CBPR allows researchers and community members to serve as equal partners throughout all phases of the research process. 7 Although CBPR has most often been used in partnership with communities defined by race or ethnicity, 8 CBPR and other participatory approaches have been successfully used to conduct research with communities defined by disability status, 9 including the autistic selfadvocacy community 10,11 and the community of people with intellectual disabilities.…”