Care-giving experiences of parents of young people with PMLD and complex healthcare needs in the transition to adulthood years: a qualitative poetic synthesis


Objective: To synthesise qualitative research exploring the care-giving experiences of parents of young people with profound and multiple learning disabilities (PMLD) and complex healthcare needs, in the transition to adulthood years. Method: Four databases were systematically searched: Scopus, WoS Core Collection, Medline and SciELO. Included papers were assessed for quality and thematically synthesised. Findings are presented in the form of free-verse poems. Results: Nineteen papers from eight countries were included. Analysis generated three themes: interdependency of parent and child, where parents retained responsibility for their child’s care; apprehension regarding sharing and shifting responsibility between parents and professionals; an uncertain future in terms of care provision. Conclusions: Parents are concerned about the future care of their children. Training professionals in alternative and effective communication is fundamental to successful transition. Encouraging discussions about advanced care planning may also alleviate parental concerns and ensure good outcomes for young people with PMLD.

Publication DOI:
Divisions: College of Health & Life Sciences > School of Psychology
College of Health & Life Sciences > Aston Institute of Health & Neurodevelopment (AIHN)
Additional Information: © 2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.
Uncontrolled Keywords: Parents,adolescence,intellectual disability,poetic synthesis,transition,Arts and Humanities (miscellaneous),Medicine (miscellaneous)
Publication ISSN: 1753-3023
Last Modified: 24 May 2024 07:20
Date Deposited: 21 Nov 2023 15:51
Full Text Link:
Related URLs: http://www.scop ... tnerID=8YFLogxK (Scopus URL)
https://www.tan ... 15.2023.2288058 (Publisher URL)
PURE Output Type: Review article
Published Date: 2023-11-29
Published Online Date: 2023-11-29
Accepted Date: 2023-11-20
Authors: Slade, Katharine
Shaw, Rachel (ORCID Profile 0000-0002-0438-7666)
Larkin, Michael (ORCID Profile 0000-0003-3304-7000)
Heath, Gemma (ORCID Profile 0000-0002-1569-5576)



Version: Accepted Version

Access Restriction: Restricted to Repository staff only


Version: Published Version

License: Creative Commons Attribution

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