Experiences of adults with intellectual disabilities accessing acute hospital services: A systematic review of the international evidence

Abstract

Adults with intellectual disabilities experience significant physical and mental health needs when compared to their typically developing peers. Previous research evidences that many people with intellectual disabilities have negative encounters within acute hospitals. The aim of this systematic review was to identify the specific views and experiences of adults with intellectual disabilities when accessing acute hospital services arising from the available literature. The review commenced in June 2019 and was updated in May 2020. A systematic search of five electronic databases including CINAHL Plus, MEDLINE, Web of Science, SCOPUS and PsycINFO was undertaken. Studies published from 2014, peer-reviewed, written in English and referred to adults with intellectual disabilities aged 18 plus and acute hospital settings were included. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and the Critical Appraisal Skills Programme quality assurance checklist were used to review all selected papers. Five studies from a total of 421 were deemed suitable for inclusion in the review as the voices of adults with intellectual disabilities were present. Poor communication from healthcare staff towards adults with intellectual disabilities emerged in four studies while the use of the hospital passport and the intellectual disability liaison nurse to significantly improve the hospital experience for adults with intellectual disabilities was identified in two of the studies. Following a systematic and thematic analysis of the studies, three main overarching themes emerged: communication; information sharing; and compassion and respect. Despite the national and international focus on improving healthcare for people with intellectual disabilities, this review highlights lack of communication, inadequate information sharing and issues related to compassionate care and respect.The review identifies the possibility that an increased use of hospital passports and an extension of the intellectual disability liaison nursing roles may enhance the hospital experience for people with intellectual disabilities.

Nurses’ attitudes and emotions toward caring for adults with intellectual disability: An international replication study

“…Formal evaluation of the role suggests that nurse navigators significantly improve the interface between healthcare systems and people with chronic health conditions (Harvey et al, 2021). An international review of hospital experiences of adults with intellectual disability and their carers reveal that the intellectual disability nurse liaison role is perceived as valuable to improving the healthcare experience, through enhanced communication and understanding of the unique health care needs of people with intellectual disability (McCormick et al, 2021).…”

Humanizing Health and Social Care Support for People With Intellectual and Developmental Disabilities: Protocol for a Scoping Review

“…Recent reviews related to the access of health care services by people with IDDs identified a variety of barriers [ 15 , 17 , 18 ], but no reviews were identified that examined efforts to address these barriers by using humanizing principles. Our scoping review will add to the field by providing a summary of the current state of the field of research regarding the interventions that aid the humanizing of health and social care for adults with IDDs.…”

“…The key barriers identified included difficulties with communication between patients and health care professionals; poor-quality services and a lack of services, which are often due to deficits in health care professionals’ understanding, training, and skills; and other organizational barriers related to procedures or facilities [ 14 - 18 ]. Although the databases and years searched were comprehensive, the reviews focused on particular services (mental health services [ 17 ], physical health care services [ 18 ], or services in acute care settings [ 14 , 15 ]) or populations (people with autism [ 18 ]). One review was published in 2005 and therefore does not reflect any recent changes in health care delivery [ 16 ].…”

Diversity-sensitive measures in German hospitals – attitudes, implementation, and barriers according to administration managers

“…Limited knowledge about existing services, legal rights to care and several aspects associated with the process of migration add to these experiences; examples are mistrust towards institutions, experience of persecution, or concerns about immigration status, which can impair utilization of health services [ 9 ]. When trying to access hospital care, individuals with intellectual disabilities, another vulnerable population group, can encounter a broad spectrum of barriers as well, including negative attitudes from hospital staff, limited knowledge among health professionals about special needs and communication requirements, and lack of support for professional carers or other accompanying persons [ 10 , 11 ]. Other dimensions of diversity have similarly been associated with barriers or inequalities in utilizing specific health services, e.g., socioeconomic status [ 12 ] or homelessness [ 13 ].…”