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Barriers to Seeking Help for Interpersonal Violence in People with Developmental Disabilities
Objectives: To 1) describe barriers to help-seeking by IPV survivors with developmental disabilities; 2) explore relationships between socio-demographic, abuse and disability factors, and barriers to help-seeking; and 3) examine relationships between barriers to help-seeking and health outcomes.
Methods: We used a community based participatory research approach to conduct a survey about health, disability, and IPV in people with developmental disabilities in Oregon and Montana, USA. This analysis was limited to the 66% (223/338) of participants who reported abuse experiences as an adult in the larger study. We assessed demographics, functional limitations, use of personal assistance and assistive devices, abuse experience in adulthood and childhood, barriers to help-seeking, and health outcomes. We measured depression, health symptoms and PTSD symptoms using versions of The Center for Epidemiologic Studies Short Depression Scale (CESD-10), Personal Health Questionnaire (PHQ-15) and Post Traumatic Stress Disorder Checklist – Civilian (PLC-C) adapted for people with developmental disabilities.
We analysed differences between participants with and without barriers to help-seeking using two-sample t-tests, Person’s chi-square and Fisher’s exact tests. We used linear regression to determine the relationship between barriers to help-seeking and health outcomes.
Results: The mean age of participants was 39.7 years (SD 13.3). About half were women (52%). The majority were white (73.4%), not Hispanic (89.7%) and lived in a city or suburb (70.4%). Fourteen percent reported being on the autism spectrum and 64.6% reported a cognitive disability.
Over half (56%) reported at least one barrier to help-seeking: 29% felt too ashamed to tell someone; 24% thought that they could lose their independence or support; 23% reported that they would not be believed if they told someone; 18% did not think there would be services to help them; and 9% reported that they would not have a way to tell someone of their abuse.
Participants with barriers to help-seeking had higher rates of employment (44.4% vs. 28.1%, p = 0.0135), use of personal assistance (70.2% vs. 54.2%, p = 0.0147), and history of child abuse (82.3% vs. 64.6%, p = 0.0028), in comparison to participants without barriers. The mean CESD-10 score was higher for survivors with barriers to help-seeking (12.59 vs 10.63, p=0.0199). There was no significant difference in PHQ-15 and PLC-C scores between the two groups. Survivors with barriers had a mean CESD-10 score 1.67 points higher than those without barriers when adjusting for demographic characteristics and child abuse history (p=0.045). This association was weakened after adjustment for functional limitations and abuse severity.
Conclusions: Barriers to help-seeking, which are widespread among IPV survivors with developmental disabilities, may be more prevalent in those who are employed, require personal assistance, and/or are survivors of child abuse. Research and practice must address the conditions that disincentivize help-seeking for abuse in this population.