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Cover of Respite care and short breaks for young adults aged 18–40 with complex health-care needs: mixed-methods systematic review and conceptual framework development

Respite care and short breaks for young adults aged 18–40 with complex health-care needs: mixed-methods systematic review and conceptual framework development

Health Services and Delivery Research, No. 9.6

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Author Information
Southampton (UK): NIHR Journals Library; .

Headline

This review found that evidence is limited for all types of respite care except residential and developed logic models with a knowledge map that improve understanding of respite care provision.

Abstract

Background:

The number of young adults with complex health-care needs due to life-limiting conditions/complex physical disability has risen significantly over the last 15 years, as more children now survive into adulthood. The transition from children to adult services may disrupt provision of essential respite/short break care for this vulnerable population, but the impact on young adults, families and providers is unclear.

Aim:

To review the evidence on respite care provision for young adults (aged 18–40 years) with complex health-care needs, provide an evidence gap analysis and develop a conceptual framework for respite care.

Design:

A two-stage mixed-methods systematic review, including a knowledge map of respite care and an evidence review of policy, effectiveness, cost-effectiveness and experience.

Data sources:

Electronic databases and grey/unpublished literature were searched from 2002 to September 2019. The databases searched included Cumulative Index to Nursing and Allied Health Literature, MEDLINE, EMBASE, PsycINFO, Applied Social Sciences Index and Abstracts, Health Management Information Consortium, PROSPERO, Turning Research into Practice, COnNECT+, British Nursing Index, Web of Science, Social Care Online, the National Institute for Health Research Journals Library, Cochrane Effective Practice and Organisation of Care specialist register, databases on The Cochrane Library and international clinical trials registers. Additional sources were searched using the CLUSTER (Citations, Lead authors, Unpublished materials, Scholar search, Theories, Early examples, Related projects) approach and an international ‘call for evidence’.

Methods and analysis:

Multiple independent reviewers used the SPICE (Setting, Perspective, Intervention/phenomenon of interest, Comparison, Evaluation) framework to select and extract evidence for each stage, verified by a third reviewer. Study/source characteristics and outcomes were extracted. Study quality was assessed using relevant tools. Qualitative evidence was synthesised using a framework approach and UK policy was synthesised using documentary content analysis. GRADE-CERQual (Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative Research) was used to assess confidence in the evidence. Logic models developed for each type of respite care constituted the conceptual framework.

Results:

We identified 69 sources (78 records) from 126,267 records. The knowledge map comprised the following types of respite care: residential, home based, day care, community, leisure/social provision, funded holidays and emergency. Seven policy intentions included early transition planning and prioritising respite care according to need. No evidence was found on effectiveness and cost-effectiveness. Qualitative evidence focused largely on residential respite care. Facilitators of accessible/acceptable services included trusted and valued relationships, independence and empowerment of young adults, peer social interaction, developmental/age-appropriate services and high standards of care. Barriers included transition to adult services, paperwork, referral/provision delay and travelling distance. Young adults from black, Asian and minority ethnic populations were under-represented. Poor transition, such as loss of or inappropriate services, was contrary to statutory expectations. Potential harms included stress and anxiety related to safe care, frustration and distress arising from unmet needs, parental exhaustion, and a lack of opportunities to socialise and develop independence.

Limitations:

No quantitative or mixed-methods evidence was found on effectiveness or cost-effectiveness of respite care. There was limited evidence on planned and emergency respite care except residential.

Conclusions:

Policy intentions are more comprehensively met for young people aged < 18 years who are accessing children’s services. Young adults with complex needs often ‘fall off a cliff’ following service withdrawal and this imbalance needs addressing.

Future work:

Research to quantify the effectiveness and cost-effectiveness of respite care to support service development and commissioning. Development of a core set of outcomes measures to support future collation of evidence.

Study registration:

This study is registered as PROSPERO CRD42018088780.

Funding:

This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 9, No. 6. See the NIHR Journals Library website for further project information.

Contents

About the Series

Health Services and Delivery Research
ISSN (Print): 2050-4349
ISSN (Electronic): 2050-4357

Declared competing interests of authors: Katherine Knighting was lead researcher and co-author on some of the work quoted in the report. Jane Noyes was lead researcher and co-author on some of the work quoted in the report. In addition, Jane Noyes is a member of the joint research group of Together for Short Lives (Bristol, UK) and the Association for Paediatric Palliative Care Medicine (2011–present), which lobbies for evidence-informed research prioritisation and well-conducted research to be undertaken with the target population. Jane Noyes was also a member of the NIHR Dissemination Centre Advisory Group (2015–19). Lucy Bray was a researcher and co-author on some of the work quoted in the report. Barbara Jack was a researcher and co-author on some of the work quoted in the report. Mary O’Brien was a researcher and co-author on some of the work quoted in the report. Julia Downing was a researcher and co-author on some of the work quoted in the report.

Article history

The research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 16/115/17. The contractual start date was in February 2018. The final report began editorial review in March 2020 and was accepted for publication in October 2020. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Last reviewed: March 2020; Accepted: October 2020.

Copyright © Queen’s Printer and Controller of HMSO 2021. This work was produced by Knighting et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.
Bookshelf ID: NBK568069PMID: 33651528DOI: 10.3310/hsdr09060

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