Experiences of using a Regional Hospital Passport from the perspective of adults with intellectual disabilities, family carers and health professionals: a qualitative study

Approximately 2% of the world population have an intellectual disability and their complex physical and mental health needs will significantly increase as this population age. Consequently, people with intellectual disabilities across the lifespan will be more frequent users of acute hospital services when compared to their non-disabled peers. Yet, they and their families continue to report dissatisfaction with their care when accessing these primary care and acute general hospital services. Therefore, the need to understand their increasing health complexities and make reasonable adjustments to their care and support is critical. One such reasonable adjustment is the Health and Social Care Hospital Passport, a Northern Irish regional tool which has been utilised by adults with intellectual disabilities, their families and healthcare professionals since 2017 which supports safe and effective person-centred care and throughout the hospital care journey.

This study aimed to explore the experiences of adults with intellectual disabilities, family carers and Registered Nurses use of the Regional Hospital Passport.

Following ethical approval, 12 semi-structured interviews were conducted with adults with intellectual disabilities (n=2), family carers (n=2) and Registered Nurses (n=8)

Findings: Three themes emerged: (i) Usefulness of the Regional Hospital Passport; (ii) Facilitators to using the Regional Hospital Passport; and (iii) Barriers to using the Regional Hospital Passport. In addition, this study found clear benefits of using this Regional Hospital Passport, such as enhanced communication, person-centred care and more positive care experiences across the hospital journey. Conclusion and impact; Healthcare professionals are accountable for ensuring reasonable adjustments such as the Regional Hospital Passport is promoted and used across health settings in Northern Ireland. Previous research revealed that Registered Nurses have a need to more fully understand and communicate with people with intellectual disabilities and hospital passports, as one such reasonable adjustment, can potentially improve the hospital experience and care journey for people with intellectual disabilities in healthcare settings. Nurse education and professional development are key drivers to enhancing positive health outcomes for people with learning disabilities and their families. Through education and dissemination, this regional resource has potentially wider application across General, Dental and community services. It also has the potential to be extended to people with dementia, stroke, autism and acquired brain injuries. Essentially, anywhere here is a patient presenting with intellectual disabilities, cognitive decline or communication impairments, this resource can positively improve health outcomes across many patient settings and improve the hospital journey.