7 The forgotten voices: enabling children and young people with a learning disability and young children without a learning disability to express their views on their inpatient hospital experience

Abstract

<h3>Background</h3> The importance of enabling patients to provide feedback about their health care is widely accepted but development of appropriate measures to ensure inclusion of all patient groups has not kept pace, particularly for children and young people (CYP) with a learning disability (LD). Although increasing numbers of CYP with LD access hospital care every year, they are rarely, if ever, directly asked about their healthcare experiences, partly due to lack of appropriate measures to enable them to meaningfully express their views. <h3>Method</h3> Our aim was to develop patient-reported experience measures (PREMs) for CYP with LD who use inpatient hospital services and test them with both CYP with LD and young children without LD. A hospital inpatient PREM previously developed for children aged 8-11 years was revised iteratively in conjunction with a parent advisory group and CYP with LD. The PREM was tested on children’s wards in seven hospitals over a three-month period. <h3>Results</h3> Parents suggested one PREM for all CYP with LD, simpler language, fewer questions and response options and images to illustrate each question. Seven children provided feedback on the images. The final PREM had 22 questions, each with a corresponding image. Questions addressed environment, people, care and treatment, and safety. Testing with 47 CYP with LD (4-18 years) and 74 children without LD (4-7 years) resulted in few missing data. Half the respondents added comments and/or drew a picture. Challenges to completion were linked to the optimum number of response categories. <h3>Conclusion</h3> The development of a PREM for CYP with LD/young children provides a previously unavailable opportunity for them to report on their experiences of inpatient care. Future work to extend testing to a wider group will enable us to clarify whether one PREM is valid and reliable for all CYP with LD/young children.