Background Children and young people (CYP) with learning disability (LD) have more hospital admissions and greater lengths of hospital stay than children without disabilities. Yet, few researchers have sought to understand the hospital experience from the perspective of these patients, which means we have little evidence of how to improve hospital services in order to meet their needs. Limited research has been conducted with parents of CYP with LD to ascertain what it is like for them and their child to recieve hospital services, which largely reveals parental concerns about staff members lack of confidence and knowledge to care for their child with LD.
Aims Our study sought to understand the hospital related needs and experiences of CYP with LD, their families and hospital staff. Reported here is data collected through observation, interaction and communication with CYP.
Methods An ethnographic approach was used to observe, in detail, the everyday life of 9 CYP with LD and their families during one or more episodes of hospitalisation, over a 12 month period. The use of arts based methods facilitated 4 of these CYP to share what was important to them. 135 staff consented to be observed during this time frame. Interviews with 27 staff, not reported here, were also conducted. Data were analysed using the Framework Approach.
Results Data revealed that despite sharing a label of LD, this population of patients are not all the same and can want different things from hospital services. The key to getting it right is ensuring that their non-medical needs are identified, understood and prioritised by hospital staff and the "little things" that are extremely important to these patients are not overlooked. Their need for routine, familiarity and sensory and play facilities was evident. Without their care and treatment being individualised to meet their very specific needs, CYP with LD can experience unnecessary emotional distress and physical harm.
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