Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review

Abstract

Background
Globally, people with intellectual disabilities, autism, or both, experience health inequalities. Death occurs at a younger age and the prevalence of long-term morbidities is higher than in the general population. Despite this, their primary healthcare access rates are lower, their health needs are often unmet, and their views and experiences are frequently overlooked in research, policy and practice.

Aim
To investigate the barriers and facilitators reported by individuals with intellectual disabilities, autism or both, and / or their carers, to accessing and utilising primary healthcare for their physical and mental health needs.

Design and setting
An integrative review utilising systematic review methodology. (PROSPERO: CRD42018103103).

Method
Electronic databases MEDLINE, Embase, CINAHL and Cochrane were searched for relevant studies (all languages) using a search strategy. Two researchers independently screened the results and assessed the quality of studies.

Results
Sixty-three international studies were identified. Six main themes relating to barriers and facilitators emerged from an analysis of these studies. The themes included training; knowledge and awareness; communication; fear and embarrassment; involvement in healthcare decision-making; and time. All the themes were underpinned by the need for greater care, dignity, respect, collaborative relationships and the need for reasonable adjustments. Opposing barriers and facilitators were identified within each of the main themes.

Conclusions
Adolescents and adults with intellectual disabilities, autism, or both, experience several barriers to accessing and utilising primary healthcare. The findings highlight the reasonable adjustments and facilitators that can be implemented to ensure that these individuals are not excluded from primary healthcare.

How this fits in?
This review synthesises evidence on the barriers and facilitators to accessing and utilising primary healthcare perceived by people with intellectual disabilities, autism or both. The findings highlight important considerations for primary healthcare policy, practice and further research.