The experiences of children with learning disablilities, their carers and staff during a hospital admission

Abstract

Accessible summary• Disabled children and their carers were asked what it was like to stay in hospital. • They said they felt worried and the hospital was not always ready for them.• They also said it was helpful if the child's carer could be there during a hospital stay and it is better when the child has their own room. • This research will help hospital make changes to make staying in hospital as positive as possible. SummaryGovernment policy is that people with learning disabilities should have their healthcare needs met by mainstream services. This study interviewed the carers of 13 children with learning disabilities admitted to hospital for a period longer than 24 h. Nursing staff and two children were also interviewed. Five themes were identified as having a significant impact: (i) child, carer and staff anxiety, (ii) preparedness for the admission, (iii) difficulties managing the child's behaviour, (iv) carer presence during the admission and (v) ward environment. This study presents edited responses from children, their carers and ward staff and identifies areas for service improvement. These include an emphasis on the value of emotional support, ensuring staff are prepared for hospital admission, agreeing strategies for supporting the child's behaviour, clarifying carers and staff roles during an admission, ensuring the child has an individual room if required. Study limitations are discussed and directions for future research recommended.

Access to mainstream health services: a case study of the difficulties faced by a child with learning disabilities

“…Although testing for Hepatitis B is a relatively straightforward healthcare procedure, it took more than 15 weeks and seven appointments for a blood sample to be taken from Yusuf. The experience of Yusuf and his carers demonstrates a number of issues that have previously been identified for learning disabled people accessing healthcare services (Jackson Brown & Guvenir 2009;Wharton et al 2004).…”

“…Wharton et al 2004). Jackson Brown & Guvenir (2009) conducted interviews with children with learning disabilities, their parents and also staff at the hospital they attended. The issues identified in this study included child, carer and staff anxiety, a lack of preparedness for a child's admission to hospital, necessity of carer's presence during medical care, inappropriate ward environments and difficulties managing children's behaviour.…”

Partnerships for safe care: A meta‐narrative of the experience for the parent of a child with Intellectual Disability in hospital

“…Hospital staff rely on the presence of parents and carers to attend to the needs of children with ID . Being frequent users of healthcare, these parents or carers are therefore often more familiar with the health system and services than the general paediatric population.…”

Health promotion for people with intellectual disability and obesity

“…Often, service users feel that mainstream services are inappropriate for their needs with health professionals seemingly making assumptions based on stereotype or prejudice about what their needs are (Brown and Guvenir, 2009). A 'colour-blind' approach, where everyone is treated the same, is often operated within the healthcare system.…”

“…However, these attitudes fail to recognise the social nature of intellectual disability and provide support to remedy the environment that is at the basis of many problems. Additionally, it is acknowledged that there is a low uptake of services by people with intellectual disability owing to barriers, such as language and communication difficulties (Iacono and Davis, 2003), lack of accessible information (Cumella and Martin, 2004), negative past experiences (Brown and Guvenir, 2009) and the experience of significant stress caused by health professionals' limited knowledge or understanding of intellectual disability (Webber et al, 2010). A lack of competence on the part of the health professional may inadvertently indicate a lack of understanding, discrimination or value judgment regarding the worth of people with intellectual disability (Mencap, 2004), Perceived negative attitudes towards disability may thus reinforce low uptake of services.…”