Emergency Ambulance Healthcare for People With Intellectual Disabilities: A Scoping Review.

A scoping review following Arksey and O'Malley and Joanna Briggs Institute methods, reported per PRISMA-ScR. The first author searched four databases (Medline, CINAHL, PubMed, Science Direct) and hand-searched six journals, with no date limits. Grey literature was searched for UK-based ambulance services and self-advocacy groups. Screening and data extraction were done by the primary author (a doctoral student), with co-authors available for uncertain decisions. Ten sources were included, published between 2012 and 2022, from the UK, Canada, the US, and Australia. An adapted exploratory thematic analysis was used to synthesise findings.

The primary question — what is the experience of adults with intellectual disabilities when accessing emergency ambulance healthcare — could not be answered because no included source represented that population's perspective. The ten sources were: one ambulance trust strategy document, one mixed-methods exploratory-descriptive study, five cross-sectional studies, one longitudinal study, one reflective account, and one continuing professional development module. Seven of the ten were empirical studies sampling paramedic students or emergency medical service providers. Thematic analysis yielded four themes: empathy (paramedic students' attitudes varied, with some sources reporting relatively poor attitudes overall, though people with intellectual disabilities attracted higher empathy than substance abuse or mental illness populations); education (limited paramedic training specific to intellectual disabilities, with one trust strategy committing to easy-read resources and community education); interprofessional working (limited evidence of joint training between paramedics and learning disability nurses, and difficulty accessing specialist teams outside 9-to-5 hours); and capacity and decision-making (concerns that decisions made on behalf of a person with intellectual disabilities may not reflect their wishes, and the value of advance care planning documents).

No included study had people with intellectual disabilities as participants, so the review could not speak to the actual patient experience in ambulance care. Four of the six empathy studies shared the same primary author, which the authors note may inflate the prominence of that theme. All screening, data extraction, and thematic analysis were done by a single author (the doctoral student), rather than by two independent reviewers. Forward citation searching was done on a sample of sources rather than all of them. Non-English-language sources were excluded. The grey literature search was limited to the UK. The sixth (consultation) phase of the Arksey and O'Malley framework had not yet been completed at the time of writing. The included sources treated people with intellectual disabilities as a homogeneous group, with limited acknowledgement of individual variation.

The corresponding author is the recipient of a funded doctoral programme through Edinburgh Napier University. The authors declare no conflicts of interest.

Do not read the four themes (empathy, education, interprofessional working, capacity) as evidence about what works for people with intellectual disabilities in ambulance care. None of the ten included sources had people with intellectual disabilities as participants; the themes were extracted from studies of paramedic students' attitudes and from a single trust strategy document. The review's own conclusion is that the patient experience in this context remains unknown.