Emergency Psychiatric Services for Individuals with Intellectual Disabilities: Caregivers’ Perspectives

Abstract

Background Strains on the mental health system and inaccessible services for individuals with intellectual disabilities (ID) often force caregivers to bring individuals with ID to the emergency department (ED) when in psychiatric crisis. The purpose of this study was to understand the experience of caregivers and adults with ID and mental health issues, according to caregivers' perspectives. Method Focus groups were conducted with one group of unpaid caregivers (i.e. family members) and two groups of paid caregivers (i.e. staff from community agencies) from Ontario, Canada. Results Caregivers identified a number of issues centering on a lack of services, on respect, on knowledge and on expertise. Diagnostic overshadowing and overmedication were also prevalent concerns. Conclusions Input from caregivers points to deficiencies in the system that lead them to use the ED when other options have been exhausted. A number of recommendations can be implemented to improve the emergency psychiatric care of adults with ID in the ED.

Emergency Department Visits and Use of Outpatient Physician Services by Adults with Developmental Disability and Psychiatric Disorder

“…They visit hospital EDs frequently, even though the ED is not an ideal environment for them. 7,25,26 As severity of psychiatric comorbidity increases, ED use cannot simply be attributed to poor access to either primary or psychiatric care. Rather, increased ED use among people with DD and concurrent psychiatric illness occurs despite reasonable access to primary care and specialty services, compared with access by people without DD.…”

Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study

“…56,57 Problems reported by carers of people with learning disabilities in hospital include ill-defined role boundaries, whereby hospital staff and carers (especially paid carers) are uncertain about what carers can and will do; not being supported to take a break from caring; and lack of recognition for carers' expertise and advocacy role. 56,58 Several studies found that the family's expert knowledge was rarely solicited by hospital staff, 59 and that this had led to compromised safety or increased suffering and pain. 60 Other authors reported that carers felt they needed to be constantly present and vigilant, fearing that in their absence the patient's needs, including basic care needs such as eating, drinking and toileting, would not be met and the patient could be harmed; this fear was often based on past experience.…”

Service Utilization Patterns in Parents of Youth and Adults With Intellectual Disability Who Experienced Behavioral Crisis

“…It may also be that some parents expect services to assist them in ways that are not within the capacity of the services. Our previous research has shown that caregivers of people with ID often use the emergency department in times of behavioral crisis, with the hope that it will be able to reduce problems behaviors, and report frustration when the emergency department physician recommends medication to treat problem behaviors instead of a more integrative approach (Weiss et al, 2009). At the same time, emergency department physicians note that as a triage service, there is little else that they can provide in terms of actual intervention, and express frustration over caregivers' expectations .…”