Mapping and understanding the decision-making process for providing nutrition and hydration to people living with dement
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RESEARCH ARTICLE
Open Access
Mapping and understanding the decisionmaking process for providing nutrition and hydration to people living with dementia: a systematic review Kanthee Anantapong1,2* , Nathan Davies1,3 , Justin Chan1 , Daisy McInnerney1
and Elizabeth L. Sampson1,4
Abstract Background: This systematic review aimed to explore the process of decision-making for nutrition and hydration for people living with dementia from the perspectives and experiences of all involved. Methods: We searched CINAHL, the Cochrane Library, EMBASE, MEDLINE and PsycINFO databases. Search terms were related to dementia, decision-making, nutrition and hydration. Qualitative, quantitative and case studies that focused on decision-making about nutrition and hydration for people living with dementia were included. The CASP and Murad tools were used to appraise the quality of included studies. Data extraction was guided by the Interprofessional Shared Decision Making (IP-SDM) model. We conducted a narrative synthesis using thematic analysis. PROSPERO registration number CRD42019131497. Results: Forty-five studies were included (20 qualitative, 15 quantitative and 10 case studies), comprising data from 17 countries and 6020 patients, family caregivers and practitioners. The studies covered a range of decisions from managing oral feeding to the use of tube feeding. We found that decisions about nutrition and hydration for people living with dementia were generally too complex to be mapped onto the precise linear steps of the existing decision-making model. Decision-making processes around feeding for people living with dementia were largely influenced by medical evidence, personal values, cultures and organizational routine. Although the process involved multiple people, family caregivers and non-physician practitioners were often excluded in making a final decision. Upon disagreement, nutrition interventions were sometimes delivered with conflicting feelings concealed by family caregivers or practitioners. Most conflicts and negative feelings were resolved by good relationship, honest communication, multidisciplinary team meetings and renegotiation. (Continued on next page)
* Correspondence: [email protected] 1 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK 2 Department of Psychiatry, Faculty of Medicine, Prince of Songkla University, Hat Yai, Thailand Full list of author information is available at the end of the article © The Author(s). 2020 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
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