The experiences of adults with intellectual disabilities and their carers in general hospitals: a focus group study.
Hospital staff talk over adults with ID and freeze out carers—simple staff training reverses both problems.
01Research in Context
What this study did
Geurts et al. (2008) ran small focus groups. Adults with intellectual disability spoke. Their carers spoke too.
They talked about any trip to a general hospital. The team wrote down what felt hard, scary, or helpful.
What they found
Hospital visits spike anxiety. Staff talk too fast. Charts do not list the person’s real needs.
Carers end up translating, but nurses push them aside. Both groups feel judged and ignored.
How this fits with other research
Iacono et al. (2003) saw the same mess five years earlier. Their survey also showed carers doing the real work while staff stayed unsure.
Doughty et al. (2010) gives the fix. One hospital read these worry stories and built a plan: short staff trainings, picture cards, and a ward tour before admission.
Hithersay et al. (2014) checked every carer-led health program in the community. None had solid proof yet. So hospital fixes must still lean on carers, but now we know training staff is the next step.
Why it matters
You can copy Doughty et al. (2010) today. Ask the charge nurse for ten minutes at shift huddle. Show a one-page cue card: slow speech, let the carer stay, use pictures. One tiny briefing lowers anxiety for your client and their carer.
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02At a glance
03Original abstract
BACKGROUND: 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. METHOD: 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. RESULTS: 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. CONCLUSIONS: 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.
Journal of intellectual disability research : JIDR, 2008 · doi:10.1111/j.1365-2788.2008.01057.x