Journal of Intellectual & Developmental Disability – September 2010; 35(3) 155-164
- People with ID continue to experience a higher burden of illness than the general population and this is reflection the overrepresentation people with ID in hospital settings.
- Needs such as toileting and nutrition, poor communication between staff and patient, oversedation, medication errors, pateint fear and anxiety, insufficeint pain management and poor discharge preparation
- Carers (parents and caregiving staff from residential placment) have described vigilance as necessary to ensure adequate care and safety and to minimize fear and anxiety
- Group home staff are not trained to care for people with serious or chronic heatlh contidions, but have basic first aid training.
- This study had 76% hospitalization rate over 2 years. Extensive strategies used by family and caregivers to improve hospital experiences for people with ID.
- Carers perceived staff to be generally uncomfortable with or indiffernet to the needs of people with ID Care practices that did not acknowledge their special needs were interpreted as indiffernece: “they don’t’ wash them, they don’t even brush their hair or clean their teeth. They don’t put their glasses on them etc.”
- Staff don’t respond to needs – mostly toiliting and nutrition little help with food prep/eating, problems incontenence and not being changed as needed.
- Lack of caring or that hospital staff had little or no prior experience or understanding of people with ID Carers wondered if hospital staff saw people with ID as having little value. Should a treatment even be tried? was patient worthy of it?
- Inabiltiy to treat pain effectively = pain only managed if someone were present to “translate” and insist that the pain be treated. Not treated if patient didn’t complain.
- Failure to assess the specific situaiton and respond accordingly – diagnoses and treatment option were explained to people who lacked the capacity ot understand or hospital staff incorrectly assumed that the patient was unable to understand.
- Many misinterpretations of behavior that expressed fears, desires or preferences.
- No care because patient doesn’t know to push button or call out for help
- Hospital staff fail to heed carer’s advice – poor outcomes for residents.
- Identified concerns about the lack of attention paid by hospital staff to their descriptions of residnets fears and phobias and warnings about residents reactions to certain approaches – can have catastrophic responses
- Many challenging behaviors due to lack of structure and staff discomfort –lead to fear, confusion and increased behavior issues.
- Discharge plans show misunderstanding of what group homes can handle – early discharge due to problems in hospital yet group homes unable to manage early discharge – staff not trained to manage illness and treatments
- Difficulties due to hospital staff constantly changing – maybe one shift would follow instructions but not the next.
As a parent who has had a child with ID/DD and mental Illness hospitalized, I can attest to the truth of these statements. I can not tell you how many times, I arrived on the unit and my son had not gone to the bathroom, had his face washed, had dirty teeth, had food spilled down his shirt, among other issues. This was all with a 1:1 aid to care for him too. I wrote out very easy instructions on how to communicate with him, what he liked to do and how to calm him – I don’t believe anyone even looked at them even though I went over them with the staff. Overall, I was very disappointed in the care that my son received at two of our major hospitals here in the Seattle Area. There needs to be major improvements in this area.
In hospitals with clear policies, resources and systems in place to address the special needs of people with ID, much better outcomes
This study confirms previous findings of poor supports and treatments of people with ID in
hospitals. Need to rethink role of group homes, staff training and supports while in hospital