Information needs and information seeking behaviour of people with dementia and their non-professional caregivers : a scoping review

Background: People with dementia often require full-time caregivers especially in the later stages of their condition. People with dementia and caregivers’ access to reliable information on dementia is essential as it may have an important impact on patient care and quality of life. This study aims...

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Main Authors: Soong, Aijia, Au, Shu Ting, Kyaw, Bhone Myint, Theng, Yin-Leng, Tudor Car, Lorainne
Other Authors: Lee Kong Chian School of Medicine (LKCMedicine)
Format: Article
Language:English
Published: 2021
Subjects:
Online Access:https://hdl.handle.net/10356/146311
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Institution: Nanyang Technological University
Language: English
id sg-ntu-dr.10356-146311
record_format dspace
institution Nanyang Technological University
building NTU Library
continent Asia
country Singapore
Singapore
content_provider NTU Library
collection DR-NTU
language English
topic Science::Medicine
Information Needs
Dementia
spellingShingle Science::Medicine
Information Needs
Dementia
Soong, Aijia
Au, Shu Ting
Kyaw, Bhone Myint
Theng, Yin-Leng
Tudor Car, Lorainne
Information needs and information seeking behaviour of people with dementia and their non-professional caregivers : a scoping review
description Background: People with dementia often require full-time caregivers especially in the later stages of their condition. People with dementia and caregivers’ access to reliable information on dementia is essential as it may have an important impact on patient care and quality of life. This study aims to provide an overview of the information needs and information seeking behaviour of people with dementia and their non-professional caregivers. Methods: We conducted a scoping review of the literature and searched four electronic databases for eligible studies published up to August 2018. Two reviewers independently screened studies and extracted data. Information needs were classified according to emerging themes in the literature, and information seeking behaviour was categorized using Wilson’s model of information behaviour. Results: Twenty studies with a total of 4140 participants, were included in this review. Reported information needs focused on: (i) disease; (ii) patient care provision; (iii) healthcare services; and (iv) caregiver self-care. The most commonly reported information need was on healthcare service-related information. Characteristics found to influence information needs were the severity of dementia as well as patient and caregiver status. People with dementia and non-professional caregivers mainly displayed active searching, information seeking behaviour and preferred using electronic sources to obtain health information. Conclusion: Current dementia information sources available in English are extensive in the information they offer, but more emphasis needs to be placed on healthcare service-related information. All studies originated from high income countries and focused on information needs of non-professional caregivers only. The only variables found to be associated to information needs were severity of dementia condition as well as patient/caregiver status. The information needs identified in this review can be used to inform development and design of future dementia resources for people with dementia and their non-professional caregivers.
author2 Lee Kong Chian School of Medicine (LKCMedicine)
author_facet Lee Kong Chian School of Medicine (LKCMedicine)
Soong, Aijia
Au, Shu Ting
Kyaw, Bhone Myint
Theng, Yin-Leng
Tudor Car, Lorainne
format Article
author Soong, Aijia
Au, Shu Ting
Kyaw, Bhone Myint
Theng, Yin-Leng
Tudor Car, Lorainne
author_sort Soong, Aijia
title Information needs and information seeking behaviour of people with dementia and their non-professional caregivers : a scoping review
title_short Information needs and information seeking behaviour of people with dementia and their non-professional caregivers : a scoping review
title_full Information needs and information seeking behaviour of people with dementia and their non-professional caregivers : a scoping review
title_fullStr Information needs and information seeking behaviour of people with dementia and their non-professional caregivers : a scoping review
title_full_unstemmed Information needs and information seeking behaviour of people with dementia and their non-professional caregivers : a scoping review
title_sort information needs and information seeking behaviour of people with dementia and their non-professional caregivers : a scoping review
publishDate 2021
url https://hdl.handle.net/10356/146311
_version_ 1759855800071749632
spelling sg-ntu-dr.10356-1463112023-03-05T16:43:00Z Information needs and information seeking behaviour of people with dementia and their non-professional caregivers : a scoping review Soong, Aijia Au, Shu Ting Kyaw, Bhone Myint Theng, Yin-Leng Tudor Car, Lorainne Lee Kong Chian School of Medicine (LKCMedicine) Centre for Healthy and Sustainable Cities (CHESS) Science::Medicine Information Needs Dementia Background: People with dementia often require full-time caregivers especially in the later stages of their condition. People with dementia and caregivers’ access to reliable information on dementia is essential as it may have an important impact on patient care and quality of life. This study aims to provide an overview of the information needs and information seeking behaviour of people with dementia and their non-professional caregivers. Methods: We conducted a scoping review of the literature and searched four electronic databases for eligible studies published up to August 2018. Two reviewers independently screened studies and extracted data. Information needs were classified according to emerging themes in the literature, and information seeking behaviour was categorized using Wilson’s model of information behaviour. Results: Twenty studies with a total of 4140 participants, were included in this review. Reported information needs focused on: (i) disease; (ii) patient care provision; (iii) healthcare services; and (iv) caregiver self-care. The most commonly reported information need was on healthcare service-related information. Characteristics found to influence information needs were the severity of dementia as well as patient and caregiver status. People with dementia and non-professional caregivers mainly displayed active searching, information seeking behaviour and preferred using electronic sources to obtain health information. Conclusion: Current dementia information sources available in English are extensive in the information they offer, but more emphasis needs to be placed on healthcare service-related information. All studies originated from high income countries and focused on information needs of non-professional caregivers only. The only variables found to be associated to information needs were severity of dementia condition as well as patient/caregiver status. The information needs identified in this review can be used to inform development and design of future dementia resources for people with dementia and their non-professional caregivers. Nanyang Technological University Published version This review is funded by the Start-Up Grant from Lee Kong Chian School of Medicine, Nanyang Technological University Singapore, Singapore. The funding bodies played no role in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript. 2021-02-08T09:19:18Z 2021-02-08T09:19:18Z 2020 Journal Article Soong, A., Au, S. T., Kyaw, B. M., Theng, Y.-L., & Tudor Car, L. (2020). Information needs and information seeking behaviour of people with dementia and their non-professional caregivers : a scoping review. BMC Geriatrics, 20(1), 61-. doi:10.1186/s12877-020-1454-y 1471-2318 0000-0001-8414-7664 https://hdl.handle.net/10356/146311 10.1186/s12877-020-1454-y 32059648 2-s2.0-85079542269 1 20 en BMC Geriatrics © 2020 The Author(s). 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/. The Creative Commons Public Domain Dedication waiver (http://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. application/pdf