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

Mimmo, L; Woolfenden, S; Travaglia, J; Harrison, R

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

Mimmo, L Woolfenden, S Travaglia, J

Harrison, R

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Publication Type:: Journal Article
Citation:: Health Expectations, 2019, 22 (6), pp. 1199 - 1212
Issue Date:: 2019-12-01

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Field	Value	Language
dc.contributor.author	Mimmo, L	en_US
dc.contributor.author	Woolfenden, S	en_US
dc.contributor.author	Travaglia, J https://orcid.org/0000-0002-7537-0466	en_US
dc.contributor.author	Harrison, R	en_US
dc.date.available	2019-08-30	en_US
dc.date.issued	2019-12-01	en_US
dc.identifier.citation	Health Expectations, 2019, 22 (6), pp. 1199 - 1212	en_US
dc.identifier.issn	1369-6513	en_US
dc.identifier.uri	http://hdl.handle.net/10453/139085
dc.description.abstract	© 2019 The Authors. Health Expectations published by John Wiley & Sons Ltd. 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.	en_US
dc.relation.ispartof	Health Expectations	en_US
dc.relation.isbasedon	10.1111/hex.12968	en_US
dc.subject.classification	Public Health	en_US
dc.title	Partnerships for safe care: A meta-narrative of the experience for the parent of a child with Intellectual Disability in hospital	en_US
dc.type	Journal Article
utslib.citation.volume	6	en_US
utslib.citation.volume	22	en_US
utslib.for	1110 Nursing	en_US
utslib.for	1117 Public Health and Health Services	en_US
utslib.for	1701 Psychology	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Strength - CHSP - Health Services and Practice
utslib.copyright.status	open_access
pubs.issue	6	en_US
pubs.publication-status	Published	en_US
pubs.volume	22	en_US

Abstract:

© 2019 The Authors. Health Expectations published by John Wiley & Sons Ltd. 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.

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http://hdl.handle.net/10453/139085