Abstract
ObjectiveTo systematically identify and synthesize peer‐reviewed qualitative evidence of the parental experience of hospitalization with a child with Intellectual Disability.Search strategyKey words, synonyms and MeSH subject headings that related to the three key concepts of parental experience, children with Intellectual Disability and hospital settings were applied to six electronic databases: Medline, CINAHL, Embase, PsycINFO, Scopus and Web of Science. Titles and abstracts of publications between January 2000 and February 2019 were screened for relevance.Inclusion criteriaEmpirical qualitative research involved participants aged 0‐18 years, involved children with Intellectual Disability, involved participants hospitalized as an in‐patient and involved participants focused on parent perspective.Data extraction and synthesisData were extracted and synthesized using a meta‐narrative approach.ResultsEleven publications met the inclusion criteria. Data synthesis revealed three research traditions contributing to this meta‐narrative: Paediatric Nursing Practice, Intellectual Disability Healthcare and Patient Experience. A total of five themes were identified: (a) being more than a parent, (b) importance of role negotiation, (c) building trust and relationships, (d) the cumulative effect of previous experiences of hospitalization and (e) knowing the child as an individual.Discussion and conclusionThis review presents a working model for professional‐parent partnership for the safe care of children with Intellectual Disability in hospital. Shifting paediatric healthcare to whole of hospital/multidisciplinary models of care that centre on the child will necessitate partnerships with the parent to identify and manage the needs of the child with Intellectual Disability, in order to achieve safe and equitable care for these children.
Highlights
Equitable, high‐quality and safe healthcare is the aspiration of healthcare systems globally to in order to achieve optimal patient outcomes; yet, despite concerted efforts over the past two decades, rates of avoidable harm have remained largely unchanged.[1]
Findings from the eleven studies were consolidated into five themes; being more than a parent, importance of role negotiation to reduce ambiguity about the role of the parent, building trust and relationships through effective communication, the cumulative effect of previous experiences of hospitalization, and healthcare staff (HCS) taking time to know the child as an individual
The themes crossover, they interrelate to tell the story of the parental experience over time, and how the interactions between the themes highlight the importance of partnerships in care to deliver safe care for children with Intellectual Disability (ID)
Summary
High‐quality and safe healthcare is the aspiration of healthcare systems globally to in order to achieve optimal patient outcomes; yet, despite concerted efforts over the past two decades, rates of avoidable harm have remained largely unchanged.[1]. Vulnerability to avoidable healthcare harm compounds the existing health inequities experienced by these children.[11]
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