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Developing a shared decision guide for nutrition and hydration for people with severe dementia in acute hospitals

Anantapong, Kanthee; (2022) Developing a shared decision guide for nutrition and hydration for people with severe dementia in acute hospitals. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Background: Decisions about eating and drinking problems are challenging for family carers and healthcare professionals caring for people with severe dementia, particularly in acute hospitals. I aimed to better understand this process and develop a guide that will support family carers and hospital professionals to have a conversation and make decisions. Methods: This PhD consisted of four workstreams to co-design a decision guide: WS1) a systematic review about the decision-making processes; WS2) an interview study with people with mild dementia; WS3) an interview study with family carers and hospital professionals; and WS4) a co-design workshop study with family carers and hospital professionals. Findings: Decision-making processes about eating and drinking for people with dementia are complex and often characterised by unclear procedures and a lack of support. People with mild dementia were not familiar with eating and drinking problems resulting from dementia. They preferred to leave the discussion and decisions to family carers and healthcare professionals until issues arose. It was consequently demanding for family and professionals to make the decisions on a patients’ behalf, especially in acute hospitals where they reported poor communication, limited resources, and emotional involvement. I developed a decision guide through co-design workshops to facilitate conversations and discussions about eating and drinking problems and treatment options between family carers and hospital professionals to support their decision-making. Participants from the interview and workshop studies helped co-design and check the final prototype of my decision guide to make sure it was comprehensible for all parties, addressed cultural and language differences, and focused on the patients’ best interest. Conclusion: In acute hospitals, decisions about the care around eating and drinking for people with severe dementia are challenging. Decisional support for family carers and hospital professionals, for example, the decision guide developed in this PhD, is potentially helpful and could lead to better care. An evaluation study is still warranted to test its usefulness in actual clinical practice.

Type: Thesis (Doctoral)
Qualification: Ph.D
Title: Developing a shared decision guide for nutrition and hydration for people with severe dementia in acute hospitals
Language: English
Additional information: Copyright © The Author 2022. Original content in this thesis is licensed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) Licence (https://creativecommons.org/licenses/by-nc/4.0/). Any third-party copyright material present remains the property of its respective owner(s) and is licensed under its existing terms. Access may initially be restricted at the author’s request.
UCL classification: UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry > Marie Curie Palliative Care
UCL
URI: https://discovery.ucl.ac.uk/id/eprint/10146076
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