Background: People with intellectual disabilities (ID) have complex health needs, worse health outcomes than the general population, and are at risk of receiving poor care in acute hospital settings. The experiences of hospitalisation for people with ID and the perspectives of ID service providers have been documented in qualitative research internationally, however, little is known about this topic in the context of Aotearoa/New Zealand. Therefore, this study seeks to better understand what the experience of hospitalisation of people with ID in Aotearoa is, what are the things that make the experience easier for people with ID, and what were the things that negatively impact the experience.

Method: For this qualitative study interviews and written surveys were used. Semi-structured interviews were conducted with five adults with ID and nine community stakeholders who work in support of people with ID. Additionally, two anonymous survey responses were received from people with ID and five survey responses were received from community stakeholders. The total number of participants with ID was seven. The total number of community stakeholder participants was 14. The data generated were analysed using reflexive thematic analysis.

Findings: The findings of the study revealed that while for some people with ID, hospitalisation is frightening, most of the participants with ID had positive feelings about hospitalisation. Positive experiences were associated with friendly and communicative doctors and nurses. In contrast, community stakeholder participants perceived the experience of hospitalisation as frightening, traumatic and overwhelming for people with ID. Additionally, participants with ID described challenges with feeling lonely and bored during admission. Community stakeholder participants described significant concerns about failures in the provision of basic care, such as a lack of assistance with eating, toileting, showering and sleeping positions. Instances of patient harm and deterioration of health were attributed to lapses in basic care by nursing staff. Community stakeholders viewed hospital staff as lacking knowledge about ID and how to adjust communication to suit people with ID’s needs. Perceived deficits in hospital staff education about ID were attributed as the basis in failures in the provision of individualised patient-centred care and contributed to feelings of mistrust in the hospital system. A lack of knowledge about ID was also attributed to failures in keeping patients safe, as well as disruptions to the continuity of care after discharge.

Conclusion: For people with ID, the experience of hospitalisation may be made easier by making reasonable adjustments that consider individual needs. Participants with ID described preferring being around other people rather than being placed in rooms alone, having shorter wait times in the hospital, having access to activities, music or devices to alleviate boredom, having access to support people and advocates that can communicate their needs and explain things to them, and having compassionate hospital staff who take time with patients, and who are good at identifying and managing pain. Community stakeholders described wanting better discharge planning in order to support continuity of care and patient safety after hospitalisation, and clearer guidelines about the administration of pain medication. For both people with ID and community stakeholders, the development of a uniform system to ensure the effective transfer of information about a person's individual requirements and needs, and a specialist disability liaison nurse or advocacy role in all hospitals were identified as ways that the hospital system could improve to better support people with ID in future.