Background Whilst parents of all children may find it stressful accompanying their child into hospital, we know that parents of children with Learning Disabilities (LD) can find it particularly challenging, especially when their child has complex needs.
Aim We compared how services are delivered to, and experienced by, children with long-term conditions, with and without LD, and their families, to see what inequalities exist, for whom, why and under what circumstances.
Methods We conducted a mixed-methods study over 4 Phases. During Phase 2, safety issues were explored with parents of children with LD (n=42) and without LD (n=21), through the completion of a diary and safety review form in hospital, followed by home interviews. During Phase 3, questions about safety were included in a parent survey.
Results Parents of children with LD expressed a level of hyper-vigilance that differed in scale and intensity to the continumm of vigilance, described by parents of children without LD. They identified factors associated with having a LD that increased their child’s vulnerability and rarely felt able to leave them for anything but short-periods, with a resulting impact on their own health and well-being. Survey data revealed that about a third of parents of children with LD were not completely satisfied with staff management of their child’s behaviour and the suitability of the environment in which they worked and about a quarter were not completely satisfied with staff ability to deliver safe care.
Conclusion Our findings highlight the need for the development of a risk assessment instrument for maximising safety of children with LD in hospital. The instrument is also likely to empower nurses in their interactions with families, through more informed discussions about risk and safety, with additional benefits for parents through increased trust and confidence in staff; developing a true partnership in care.
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