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Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks

BACKGROUND: Patient experience is a core component of healthcare quality. Patient-reported experience measures (PREMs) are increasingly used to assess this, but there are few paediatric PREMs. This paper reports the first stage of developing two such measures, one for children and young people (0–18...

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Autores principales: Mukherjee, Suzanne, Richardson, Natalie, Beresford, Bryony
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10351142/
https://www.ncbi.nlm.nih.gov/pubmed/37460965
http://dx.doi.org/10.1186/s12887-023-04151-6
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author Mukherjee, Suzanne
Richardson, Natalie
Beresford, Bryony
author_facet Mukherjee, Suzanne
Richardson, Natalie
Beresford, Bryony
author_sort Mukherjee, Suzanne
collection PubMed
description BACKGROUND: Patient experience is a core component of healthcare quality. Patient-reported experience measures (PREMs) are increasingly used to assess this, but there are few paediatric PREMs. This paper reports the first stage of developing two such measures, one for children and young people (0–18 years) (CYP) with a life-threatening or life-shortening condition (LT/LSC), and one for their parents. It comprised parallel scoping reviews of qualitative evidence on the elements of health service delivery and care that matter to, or impact on, CYP (Review 1) and parents (Review 2). METHODS: Medline and PsychINFO (1/1/2010 – 11/8/2020) and CINAHL Complete (1/1/2010 – 4/7/2020) were searched and records identified screened against inclusion criteria. A thematic approach was used to manage and analyse relevant data, informed by existing understandings of patient/family experiences as comprising aspects of staff’s attributes, their actions and behaviours, and organisational features. The objective was to identity the data discrete elements of health service delivery and care which matter to, or impact on, CYP or parents which, when organised under higher order conceptual domains, created separate conceptual frameworks. RESULTS: 18,531 records were identified. Sparsity of data on community-based services meant the reviews focused only on hospital-based (inpatient and outpatient) experiences. 53 studies were included in Review 1 and 64 in Review 2. For Review 1 (CYP), 36 discrete elements of healthcare experience were identified and organized under 8 higher order domains (e.g. staff’s empathetic qualities; information-sharing/decision making; resources for socializing/play). In Review 2 (parents), 55 elements were identified and organized under 9 higher order domains. Some domains were similar to those identified in Review 1 (e.g. professionalism; information-sharing/decision-making), others were unique (e.g. supporting parenting; access to additional support). CONCLUSIONS: Multiple and wide-ranging aspects of the way hospital healthcare is organized and delivered matters to and impacts on CYP with LT/LSCs, and their parents. The aspects that matter differ between CYP and parents, highlighting the importance of measuring and understanding CYP and parent experience seperately. These findings are key to the development of patient/parent experience measures for this patient population and the resultant conceptual frameworks have potential application in service development. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12887-023-04151-6.
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spelling pubmed-103511422023-07-18 Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks Mukherjee, Suzanne Richardson, Natalie Beresford, Bryony BMC Pediatr Research BACKGROUND: Patient experience is a core component of healthcare quality. Patient-reported experience measures (PREMs) are increasingly used to assess this, but there are few paediatric PREMs. This paper reports the first stage of developing two such measures, one for children and young people (0–18 years) (CYP) with a life-threatening or life-shortening condition (LT/LSC), and one for their parents. It comprised parallel scoping reviews of qualitative evidence on the elements of health service delivery and care that matter to, or impact on, CYP (Review 1) and parents (Review 2). METHODS: Medline and PsychINFO (1/1/2010 – 11/8/2020) and CINAHL Complete (1/1/2010 – 4/7/2020) were searched and records identified screened against inclusion criteria. A thematic approach was used to manage and analyse relevant data, informed by existing understandings of patient/family experiences as comprising aspects of staff’s attributes, their actions and behaviours, and organisational features. The objective was to identity the data discrete elements of health service delivery and care which matter to, or impact on, CYP or parents which, when organised under higher order conceptual domains, created separate conceptual frameworks. RESULTS: 18,531 records were identified. Sparsity of data on community-based services meant the reviews focused only on hospital-based (inpatient and outpatient) experiences. 53 studies were included in Review 1 and 64 in Review 2. For Review 1 (CYP), 36 discrete elements of healthcare experience were identified and organized under 8 higher order domains (e.g. staff’s empathetic qualities; information-sharing/decision making; resources for socializing/play). In Review 2 (parents), 55 elements were identified and organized under 9 higher order domains. Some domains were similar to those identified in Review 1 (e.g. professionalism; information-sharing/decision-making), others were unique (e.g. supporting parenting; access to additional support). CONCLUSIONS: Multiple and wide-ranging aspects of the way hospital healthcare is organized and delivered matters to and impacts on CYP with LT/LSCs, and their parents. The aspects that matter differ between CYP and parents, highlighting the importance of measuring and understanding CYP and parent experience seperately. These findings are key to the development of patient/parent experience measures for this patient population and the resultant conceptual frameworks have potential application in service development. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12887-023-04151-6. BioMed Central 2023-07-17 /pmc/articles/PMC10351142/ /pubmed/37460965 http://dx.doi.org/10.1186/s12887-023-04151-6 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Mukherjee, Suzanne
Richardson, Natalie
Beresford, Bryony
Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks
title Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks
title_full Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks
title_fullStr Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks
title_full_unstemmed Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks
title_short Hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks
title_sort hospital healthcare experiences of children and young people with life-threatening or life-shortening conditions, and their parents: scoping reviews and resultant conceptual frameworks
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10351142/
https://www.ncbi.nlm.nih.gov/pubmed/37460965
http://dx.doi.org/10.1186/s12887-023-04151-6
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