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 |