Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study

Abstract

BackgroundChildren and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission’s (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies (Glasper, Comp Child Adolesc Nurs 40:63-67, 2017). What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs.MethodsIndividual interviews (n = 65) and anonymised online survey (n = 2261) were conducted with hospital staff working with CYP in 15 children’s and 9 non-children’s hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Health Research Authority was obtained and verbal or written consent for data collection was obtained from all interview participants.ResultsThe nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD.ConclusionFindings indicate inequality with regards the provision of high quality hospital care to children and young people with LD that meets their needs.There is a pressing need to understand the impact this has on them and their families.Trial registrationThe study has been registered on the NIHR CRN portfolio 20461 (Phase 1), 31336 (Phases 2-4).Electronic supplementary materialThe online version of this article (10.1186/s12913-018-2970-8) contains supplementary material, which is available to authorized users.

Communication with children and adolescents about the diagnosis of their own life-threatening condition

“…Whilst these children are more likely to suffer significant ill health, their communication needs are often poorly met in healthcare settings 26 which may adversely affect their outcomes. 27 National Institute for Health and Care Excellence (NICE) guidance recommends that for all children with life limiting illness, information delivery should take into account both their age and level of understanding. 28…”

A qualitative study of nurses’ perspectives of caring for children with intellectual disability and their families in a paediatric acute care setting

“…Nurses have perceived that children with ID who have been admitted to hospital and their families can be included less frequently in decision-making around care and that their perspectives are valued less highly than families of children without ID (Oulton et al, 2018). Nurses have reported feeling less confident delivering care to hospitalised children with ID than to children without and because of the time constraints within which they work, have also felt less capable of meeting the needs of children with ID (Oulton et al, 2018).…”

To flag or not to flag: Identification of children and young people with learning disabilities in English hospitals

“…Whilst parents are an expected source of information about their child, a reliance on them may mask a need for staff to be better educated about LD. Certainly, published evidence from this study states that staff do feel less capable to meet the needs of children and young people with LD compared to those without LD and the former are perceived by staff to be less safe than those without LD (Oulton et al, ). Further research needs to identify the underlying causes, including whether there is a case for increasing the quantity and quality of undergraduate training around LD.…”

“…This paper reports on the practices of a sample of English hospitals who employ (or not) a process to identify this population with LD. The wider context and overall findings are reported in Oulton et al (2018).…”

“…During interviews, an emphasis was placed by staff on caring for children as individuals and as found in relation to the care of adults with LD (Tuffrey‐Wijne et al, ; Tuffrey‐Wijne & Hollins, ), there was a reluctance to label “difference” at an organizational or individual level that could be perceived to lead to discrimination. However, comparing the survey responses of staff working in hospitals that flag LD with those working hospitals that do not revealed that the opposite occurs in practice, strengthening the argument for those with LD to be identified on the grounds of increased safety and to achieve equity of treatment and individualized care (Oulton et al, ) through identifying the need associated with that LD (Tuffrey‐Wijne & Hollins, ) and accommodating those needs through the provision of reasonable adjustments.…”