ISQUA18-1844Time to Care: A Meta Narrative Review of the Parental Experience of Hospitalisation with a Child with Intellectual Disability

Abstract

Objectives: To systematically identify and synthesise published qualitative evidence of the parental experience of hospitalisation with a child with Intellectual Disability. Method(s): Key words, synonyms and MeSH subject headings that related to the three key concepts of parental experience, children with ID and hospital settings were collaboratively determined by subject matter experts and applied to six electronic databases: Medline, CINAHL, Embase, Psychinfo, Scopus, and Web of Science. Titles and abstracts of publications between January 2000 and August 2017 were screened for relevance by two reviewers against the inclusion criteria. Included studies met the following criteria: empirical qualitative research; involved participants aged 0-18 years; involved children with ID; involved participants hospitalised as an in-patient; and focussed on the parental perspective. Data was extracted and then synthesised using a meta-narrative approach. The meta-narrative aims to tell a story of the evolution of research into a specific tradition and its disciplines over time. Result(s): Nine 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, underpinned by the Family Centred Care (FCC) perspective or principles. The nursing discipline was dominant across the body of evidence. Four themes were identified: 1) Health care staff build trust and relationships with the parent by getting to know the child with ID and their needs, 2) hospitalisation and health care staff reliance on parental presence contributing to the burden of responsibility for the parent, 3) the cumulative effect of previous experiences of and during hospitalisation, and 4) parents perceive that health care staff value their child as a person when they take the time to get to know and care for the child with ID. These themes reflect inconsistencies applying the principles of FCC. For parents, when health care staff get to know their child, negotiate care roles and work in partnership with parents it lessens the parental burden of responsibility, and keeps the child and their individual needs at the centre of the care experience, acknowledging the child has intrinsic value. Conclusion(s): This review demonstrates that the parental experience of hospital with a child with ID has not improved with models of care applying principles of FCC in the past decade. Broader exploration of these findings in conjunction with a review of the efficacy of current models of paediatric health care is warranted. Models that centre on the child and their health care needs will inherently include negotiating care roles and partnerships with parents, while maintaining focus on the child. Shifting beliefs about the optimal models of paediatric health care will necessitate a systems-wide approach to improvements such as health policy and enhanced undergraduate education, expedited though changes to broader social and cultural perceptions of the value of people with ID. We present these findings with a complementary analysis of data from a cross-sectional study of children coded at least once as having ID admitted to the Sydney Children's Hospitals Network between January 1 to December 31, 2016. Together, these findings can inform future research and health care quality improvement opportunities to optimise the care quality experiences during hospitalisation for these children and their parents.