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

Abstract

Objective: To systematically identify and synthesize peer-reviewed qualitative evidence of the parental experience of hospitalization with a child with Intellectual Disability. Search strategy: Key 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 criteria: Empirical 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 synthesis: Data were extracted and synthesized using a meta-narrative approach. Results: Eleven 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 conclusion: This 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.