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Table 2 Themes derived from the 16 qualitative studies meeting inclusion criteria

From: A systematic review of hospital experiences of people with intellectual disability

Overarching theme Sub-themes
Fear of the hospital encounter by people with intellectual disability Fearful because of not knowing what to expect
Not understanding the situation; fear of an unfamiliar situation and environment
General fear of nurses, doctors and medical procedures, which were associated with hospitals
Failure of hospital staff to provide care Delayed or no appropriate diagnostic procedures
Diagnostic overshadowing (attributing symptoms to the intellectual disability)
Failure to treat pain (and inability to identify pain in patient with intellectual disability)
Failure to heed or respond to carer information
Lack of discharge planning or strategies (also lack of continuity of care)
Hospital staff knowledge and skills Lack of information about patients in terms of presenting underlying conditions
Not knowing that people with intellectual disabilities can experience the same range of problems as others, and/or are at high risk for some conditions (e.g., epilepsy)
Inability to deal with challenging behaviours
Overall, lack of training in relation to intellectual disability
Poor or negative attitudes by hospital staff towards people with intellectual disability Discrimination in denying diagnostic procedures or treatments
Indifference to patients or their carers
Lack of caring and poor or no communication with the person with intellectual disability and/or family or support person
Staff or system failure to adjust to the needs of people with intellectual disability Long wait times in waiting rooms
Inability to adjust communication to meet the person’s needs
Failure to provide required assistance to enable a person to eat a meal or go to the toilet
Failure to take account of differences in medication regimes across home and hospital settings, with potential serious outcomes
Carer responsibility Over-reliance by hospital staff on family and paid carers to provide attendant care (toileting, meals), and assist with medical care (e.g., changing bandages)
Advocating or insisting on appropriate investigations or treatment
Enhancers to appropriate hospital care Repeat experiences of hospital staff with the same patient resulting in understanding and adjusting to their needs
Presence of a hospital liaison person, such as LDLN
Hospital policies and systems that address the needs of people with intellectual disabilities in the form of adjustments to systems and processes
Willingness of hospital staff to ‘go beyond the call of duty’ to ensure communication and meeting the person with intellectual disability’s needs