Abstract
Background: The number of children with disabilities in the UK is increasing. Children
with disabilities account for a higher number of acute emergency admissions and they
remain as inpatients for longer, compared to children without disability. Literature has
examined parents’ and nursing views, however, limited data has been collected from
children with complex disabilities.
Aim: To explore how children with complex disabilities and their families experience
nursing care during emergency and inpatient admissions.
Methodology: This thesis used a bespoke child participatory approach to elicit the
views of 11 children with complex disabilities and their parents.
Findings: There was a lack of a child-centred approach to families’ needs. Children
with complex disabilities were subject to discriminatory and at times unsafe practice, with
insufficient hospital facilities and equipment for their care. It was participants’
perception that nurses lacked knowledge about disability needs. Children with complex
disabilities reported that they wanted to be included in care choices and demonstrated
through the interview process that they had valuable and important contributions to
make, but often they were not recognised, respected, or given the opportunity to
contribute. Parents reported feeling heavily relied upon and identified a lack of
negotiation regarding the children’s care needs. Parents and nurses were identified as
unintentional gatekeepers to children’s voices.
Conclusions: Training for health care professionals specifically focused on caring for
children with complex disabilities would expand their knowledge and skills to
enable them to safely care for children with complex disabilities and truly involve
them in their care. Further utilisation of hospital passports, preparedness for admissions, changes to
student nurses’ training programs and increased disability-specific exposure are also
warranted.