Systematic review and content analysis of Australian health care substitute decision making online resources
Julien Tran A , Marcus Sellars A B , Linda Nolte A , Ben P. White B , Craig Sinclair C D , Deirdre Fetherstonhaugh E and Karen Detering
A F G H
A Advance Care Planning Australia, Austin Health, PO Box 5555, Heidelberg, Vic. 3084, Australia. Email: jultra87@gmail.com; marcus.sellars@anu.edu.au; linda.nolte@austin.org.au
B Australian Centre for Health Law Research, Queensland University of Technology, GPO Box 2434, Brisbane, Qld 4001, Australia. Email: bp.white@qut.edu.au
C Centre of Excellence in Population Ageing Research, University of New South Wales, 223 Anzac Parade, Kensington, NSW 2033, Australia. Email: c.sinclair@unsw.edu.au
D Neuroscience Research Australia (NeuRA), Barker Road, Randwick, NSW 2031, Australia.
E Australian Centre for Evidence Based Aged Care, La Trobe University, Plenty Road, Bundoora, Melbourne VIC 3086, Australia. Email: d.fetherstonhaugh@latrobe.edu.au
F Faculty of Medicine, Dentistry and Health Science, The University of Melbourne, Parkville, Vic. 3010, Australia.
G Present address. Faculty of Health, Arts and Design, Swinburne University of Technology, PO Box 218, Hawthorne, Vic. 3122, Australia.
H Corresponding author. Email: kdetering@swin.edu.au
Australian Health Review 45(3) 317-327 https://doi.org/10.1071/AH20070
Submitted: 17 April 2020 Accepted: 7 August 2020 Published: 21 January 2021
Abstract
Objective Substitute decision makers (SDMs) can be required to make difficult health care decisions on behalf of individuals lacking decision-making capacity. Online resources may be helpful in preparing and supporting SDMs. This study systematically explored the frequency, content and usability of Australian online resources containing health care substitute decision-making content written for consumers.
Methods In April 2019, Google searches were conducted to identify online resources containing health care substitute decision-making content for consumers. Analysis comprised mapping resource characteristics, including target audience (individual-specific, SDM-specific, mixed) and thematic analysis of content. Usability was assessed using the Patient Education Materials Assessment Tool (PEMAT).
Results Of the 61 resources identified, the most frequent were webpages (57%), individual-specific (43%) and those produced by government organisations (31%). Only 15 resources (24%) were written for SDMs. Content themes identified were: defining the scope of the SDM role (93%); recommended traits or characteristics of SDMs (80%); instructions or principles regarding standards for decision making (75%); duties of SDMs (70%); and supports (46%), rights (16%), barriers (8%) and benefits (5%) for SDMs. The median (interquartile range) PEMAT scores (out of 100) were 66 (27) for understandability and 60 (55) for actionability.
Conclusions SDMs have a vital role in making decisions for people lacking decision-making capacity. Online resources are a potential source of information and support for SDMs in Australia. This study identified key gaps in availability, content and usability of existing SDM resources, highlighting the need for the further development of such resources. We suggest that future resource development include SDMs in the design and evaluation processes.
What is known about the topic? An aging population and a greater need for decisions to be made on behalf of others who lack capacity means that health care substitute decision-making is occurring more frequently. Appointing one or more SDMs may occur as part of the advance care planning process. However, being a healthcare SDM can be difficult and stressful. People frequently use the Internet to search for health-related information.
What does this paper add? This paper systematically examined the frequency, content and usability of existing Australian online resources with substitute decision-making content written for a consumer audience in English, and identified key gaps in online resources available to support SDMs.
What are the implications for practitioners? Although there is a need for resources written for SDMs, authors of online resources need to pay careful attention to the purpose, content and usability of their resource. Future resource development should include input from SDMs and involve them in evaluation to assess whether the resources meet target audience needs.
Keywords: advance care planning, advance care directive, online resources, substitute decision maker, substitute decision making.
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