The experiences of adults with intellectual disabilities and their carers in general hospitals: a focus group study

People with intellectual disabilities (ID) have higher levels of health needs compared with the general population, many of which are unrecognised and unmet. While there has been interest and research into the primary health provision for this group, there has been a more limited focus on addressing their care received in general hospitals. Access to health care has predominated in the literature, with less attention being paid to the experiences of people with ID as users of general hospital care.

A qualitative focus group methodology was used. Eleven adults with ID, nine parents and five paid carers of adults with ID participated. The focus groups were audiotaped and transcriptions were analysed using principles of grounded theory.

The analysed data highlighted key themes identified from the experiences of participants. These were the interrelated issues of feelings, particularly anxiety and fear, communication and behaviour problems; the practicalities of being in or attending hospitals, including the role played by carers; and issues around perceived discrimination and negative comments.

The experiences of participants in this study concur with and add to concern expressed in recent reports and published research. Wide ranging implications are discussed for further research, wider policy development, clinical practice, local health service provision and education of health professionals.