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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