Introduction
Making one’s own decisions is associated with many benefits, for example, improved quality of life, autonomy (Brown, Raphael, & Renwick, Reference Brown, Raphael and Renwick1997; Neely-Barnes, Marcenko, & Weber, Reference Neely-Barnes, Marcenko and Weber2008), adaptive behaviour and higher levels of community integration (Heller, Miller, & Hsieh, Reference Heller, Miller and Hsieh2002). Despite this, people with cognitive disability have been, and continue to be, routinely denied the right to make decisions and instead often have decisions made for them by guardians or trustees appointed as substitute decision-makers (United Nations, 2014).
In recent years, with the ratification of the United Nations Convention on the Rights of Persons with Disabilities (hereafter referred to as the Convention), there has been growing recognition that people with disability have the right to be involved in making decisions that affect their lives and participate in life on an equal basis with others (United Nations, 2006). As a signatory to the Convention, Australia must modify legislation, regulations and practices that endorse discrimination of people with disability and introduce measures that promote their human rights.
Supported decision-making is introduced in Article 12 (Equal Recognition before the Law) of the Convention, which states that governments must provide people with disability with the support that they require to exercise their legal capacity (United Nations, 2006). In the years since the ratification of the Convention, other related concepts have emerged, such as decision-making support and support for decision-making (Browning, Bigby, & Douglas, Reference Browning, Bigby and Douglas2014). According to Browning et al. (Reference Browning, Bigby and Douglas2014), the difference between supported decision-making as outlined in the Convention and these other concepts is that, in relation to the former, both the process used to support a person with cognitive disability to make a decision and the actual decision has legal standing. This is not the case with decision-making support and support for decision-making which, although can focus on significant decisions (e.g., where to live and who to live with), occurs largely in the informal sphere and has no legal standing. Decision-making support is a process whereby a person with cognitive disability is supported by a person (or group of people) to express their will and preferences and have these understood and acted upon (Gooding et al., Reference Gooding, Fleming, Watson, Kortisas, Cuzzilo and Hagiliassis2016a). It relies on supporters (e.g., paid staff, family, friends) to gather and understand relevant information about the decision in question, think about different options, assist the person to weigh up the benefits and risks and likely outcomes of a decision, and identify a plan for making the decision a reality (Duffield, Koritsas, Watson, & Hagiliassis, Reference Duffield, Koritsas, Watson and Hagiliassis2016). The focus of the present research is on decision-making support for people with cognitive disability, which is likely to be experienced more frequently by this group because it generally occurs informally.
Overall, there is a dearth of research about how to best provide decision-making support to people with cognitive disability. There has been some early pilot studies of decision-making support models in Australia (for example, ACT Disability, Aged and Carer Advocacy Service, 2013; Burgen, Reference Burgen2016; Wallace, Reference Wallace2012; Westwood Spice, 2015). The models piloted tend to differ (for example, how and who provides support, the support and training supporters received, the nature of decisions being explored, the length of the trial, the type of disability targeted; Bigby et al., Reference Bigby, Douglas, Carney, Then, Wiesel and Smith2017a) and, although they show promise, the outcomes for people with cognitive disability have not been consistently assessed or evaluated robustly (Bigby et al., Reference Bigby, Douglas, Smith, Carney, Then and Wiesel2021; Carney, Reference Carney2015).
Some of the barriers and facilitators to providing decision-making support have been explored in the Australian pilot studies and other research (e.g., Bigby et al., Reference Bigby, Douglas, Smith, Carney, Then and Wiesel2021). Bigby, Whiteside, and Douglas (Reference Bigby, Whiteside and Douglas2015), for example, interviewed people with mild to moderate cognitive disability, family members, disability support workers, and legal professionals and found that supporters reported four challenges to providing decision-making support: the possibility of influencing the person with cognitive disability (i.e., not remaining neutral), conflict between supporters, tension between duty of care and the person’s dignity of risk as perceived by supporters, and issues with organisational practices. The researchers also reported that the attitudes of supporters towards the decision, availability or lack of resources (e.g., time, staff), organisational procedures, supporters’ understanding of cognitive disability, and being able to communicate in an appropriate way with the person with cognitive disability had an impact on decision-making support. Tension between family members and paid staff as well as uncertainty about how to negotiate differing views was not unique to Bigby et al’s (Reference Bigby, Whiteside and Douglas2015) research. Paid carers who acted as supporters in the NSW decision-making support trial acknowledged that they did not feel comfortable questioning family values and hence found it difficult to provide support for decisions that families disagreed with (Westwood Spice, 2015). Similar challenges were also reported by case workers in the ACT trial (ACT Disability, Aged and Carer Advocacy Service, 2013) who reported that families frequently exerted influence over family members with cognitive disability and, at times, limited the options provided by paid staff, which has also been reported as occurring by family members of people with intellectual disability (Bigby et al., Reference Bigby, Douglas, Smith, Carney, Then and Wiesel2021). In some cases, staff in the ACT trials preferred to not oppose family’s wishes because they believed it was not their role to do so or felt intimidated by the family. Having sufficient time in their work schedules and timetables to provide effective decision-making support was also reported as a barrier in the NSW trial by support workers in group homes (Westwood Spice, 2015). Having time, energy and patience to provide decision-making support has also been reported by family members of people with intellectual disability (Bigby et al., Reference Bigby, Douglas, Smith, Carney, Then and Wiesel2021).
The Australian pilot studies and other research into decision-making support provide some early insights of practices across Australia. A key criticism of some of the pilot studies is that the resources that have been used to train supporters have been based on ideology and practice wisdom rather than empirical evidence and have not been rigorously evaluated (Bigby et al., Reference Bigby, Douglas, Carney, Then, Wiesel and Smith2017a; Douglas, Bigby, Knox, & Browning, Reference Douglas, Bigby, Knox and Browning2015). The present research sought to address this limitation by evaluating the impact of an evidence-based online training course about decision-making support on disability support workers working with adults with intellectual disability or acquired brain injury. The focus was on disability support workers as this group is often responsible for providing day-to-day support for people with cognitive disability. The present research explored self-reported knowledge about and confidence in providing decision-making support, as well as attitudes towards decision-making support. The range of opportunities for decision-making that were provided to adults with cognitive disability and the barriers and facilitators to providing decision-making support were also investigated.
Method
The present research was an intervention study with three data collection points (before training, immediately after training, and 2 months after the completion of training).
Participants
Participants were disability support workers who lived in Australia and worked with adults with intellectual disability or acquired brain injury.
Measures
A survey was developed to explore participants’ self-reported knowledge of and confidence in providing decision-making support, and attitudes towards decision-making support. The survey was developed by researchers with expertise in decision-making support and based on the existing research. It was trialled by staff at Scope before it was finalised. The survey comprised three questions about knowledge: what is decision-making support, the role of decision-making supporters, and the challenges in providing decision-making support. Participants responded to these three questions using a 4-point Likert scale ranging from 'no knowledge' to 'very knowledgeable'. One question about confidence in providing decision-making support to people with cognitive disability was included and rated using a 4-point Likert scale ranging from 'not at all confident' to 'extremely confident'. Attitudes were assessed through ten statements (for example, decision-making support involves determining whether or not a person with disability has the capacity/ ability to make a decision; if I am providing decision-making support to someone, I need to decide who else should be involved in the process; refer to Appendices for the complete list of statements) that participants rated using a 5-point Likert scale ranging from 'strongly disagree' to 'strongly agree'. In addition to questions about knowledge, confidence and attitudes, an open-ended question about the perceived barriers and facilitators to providing decision-making support was included, and a closed-ended question about the types of situations for which participants provided decision-making support (e.g., medical or health decisions, education decisions, financial decisions). Some demographic questions (e.g., gender, age, role, highest level of education) were also included in the survey. Three versions of the survey were developed (i.e., baseline, post and follow-up); there were only slight differences across the surveys, which reflected the stage at which the survey was to be completed. For example, the post-training survey included a question asking participants to indicate the kind of situations participants provided decision-making support for (e.g., leisure, recreational or other social activities, medical of health decisions), whereas the baseline survey did not include this question. The survey took 20 min to complete and was designed to be completed electronically.
Procedure
An online training course was created by an e-learning company. The content was developed by the researchers and based on the evidence identified in research that had been previously commissioned (Bigby et al., Reference Bigby, Whiteside and Douglas2015) and written resources that were subsequently developed from this research (Duffield et al., Reference Duffield, Koritsas, Watson and Hagiliassis2016; Gooding et al., Reference Gooding, Fleming, Watson, Kortisas, Cuzzilo and Hagiliassis2016a; Gooding, Koritsas, Duffield, Watson, & Hagiliassis, Reference Gooding, Koritsas, Duffield, Watson and Hagiliassis2016b). The training was designed to be interactive and user-friendly, and included a series of fictional case studies (some in video) and activities to make the content practical and applicable to day-to-day work of disability support workers. For example, one of the case studies involved supporting a man with cognitive disability who lived in a group home explore other living options and the pros and cons of each option that had been identified. The training comprised six modules, was designed to be completed in 60–80 min, and over several sessions (i.e., progress could be saved to return to later). The modules included were: (1) What is decision-making support?; (2) Understanding the person with disability and their needs; (3) What is the role of supporters?; (4) What are the steps in the decision-making support process?; (5) Making decision-making part of life; and (6) What are my challenges and where can I get support? Refer to the Appendices for additional information about the content of the training.
Disability support workers were eligible to participate if they resided in Australia and worked with adults with intellectual disability or acquired brain injury. Given that the research related to online training, participants needed to be computer literate and fluent in English. Invitations to participate in the research were distributed via industry newsletters and social media. Disability service providers were also contacted via email and phone and invited to distribute information about the research to their disability support workers. The information provided directed potential participants to a website with the participant information sheet. If they chose to proceed, they completed the baseline survey and were then given access to the online training. Upon completion of the online training, participants were automatically provided with the post-training survey to complete. The third and final survey (i.e., follow-up) was emailed to participants 2 months after they had completed the online training.
Ethical approval for the research was obtained from the Scope Human Research Ethics Committee (EC00428). Consent to participate was implied by completion of the surveys and participation was voluntary.
Data analysis
The data from the three surveys was analysed using the Statistical Package for Social Sciences (SPSS), Version 25. Paired sample t-tests were used to compare changes in knowledge, confidence and beliefs from baseline to post, and Friedman’s tests for change over three points in time (baseline, post and follow-up comparisons) with post hoc analyses. The Likert scale response to the ten attitudes statements were coded from 1 to 5 and summed to give a total attitude score with higher scores representing more positive attitudes. Seven of the ten statements were, therefore, reverse coded (attitude 1, 2, 4, 5,8, 9, 10). Wilcoxon signed-rank tests were used to compare attitudes scores over time. Frequencies and percentages were used to analyse the situations in which participants provided decision-making support and open-ended responses were grouped into broad categories.
Results
One hundred and thirty people completed the training. Not everyone who completed the training was eligible to participate in the research. In total, 99 disability support workers (the target group) completed the training and the baseline and post-training surveys. The remainder were ineligible (e.g., managers, academics, staff who did not work with people who had intellectual disability or an acquired brain injury) or completed the training but not the surveys. Thirty-six participants completed the training and all three surveys (i.e., baseline, post and follow-up).
Table 1 shows the characteristics of participants who completed the training and the baseline and post-training survey. The majority of participants were females, and the highest level of education for almost half of the participants was a TAFE or College course. Almost half of the participants worked in residential settings and there was substantial variation in how long participants had worked in the disability sector. There was broad representation across most of Australia (40.4% Victoria, 28.3% New South Wales, 14.1% Queensland, 10.1% Western Australia, 3.0% South Australia, and 1.0% Tasmania). There were no participants from the Northern Territory or the Australian Capital Territory.
Characteristics of Participants Who Completed the Training, the Baseline and Post-training Survey
a Some missing data.
b Multiple responses provided.
c Most participants worked with people with intellectual disability as well as those with acquired brain injury.
At the completion of training (post), most participants reported that they provided decision-making support for decisions relating to leisure, recreational or other social activities. Very few provided support for decisions about family planning, and about half provided support for decisions about medical and financial situations, and relationships (refer to Table 2).
Proportion of Participants Who Reported Providing Decision-Making Support in Specific Situations/Contexts Post-TRAINING
Table 3 presents the means and standard deviations of scores obtained at baseline and post-training. This table shows that there were statistically significant increases in self-reported knowledge, confidence, and attitudes from baseline to post-training.
Changes in Knowledge, Confidence and Values (Mean and Standard Deviation) Obtained at Baseline and Post-training
Given the smaller sample size, differences from pre, post and at 2-month follow-up were explored using Friedman’s tests for change. There were statistically significant differences in knowledge about what decision-making support was (χ2(2) = 29.15, p < 0.001), the role of supporters (χ2(2) = 33.91, p < 0.001), the challenges of decision-making support (χ2(2) = 30.48, p < 0.001), and confidence in providing decision-making support (χ2(2) = 39.92, p < 0.001). Dunn-Bonferroni post hoc tests were carried out and there were significant differences for all three knowledge questions: what decision-making support was from baseline to post (p < 0.001) and to follow-up (p = 0.002), the role of supporters from baseline to post (p < 0.001) and to follow-up (p < 0.001), and the challenges of decision-making support from baseline to post (p < 0.001) and to follow-up (p = 0.0004). There were also significant differences in confidence in providing decision-making support from baseline to post (p < 0.001) and to follow-up (p < 0.001). There were no other significant differences.
A Wilcoxon signed-rank test showed that there was a significant difference (Z = 3.50, p < 0.001) between attitudes at baseline and post-training. The median score for attitudes at baseline was 33.0 and 36.0 post-training. There was a significant difference between attitudes at baseline and at 2-month follow-up (Z = 3.63, p < 0.001). The median score for attitudes at baseline was 33.0 and 36.0 at follow-up. There was no significant difference between attitudes post-training and at 2-month follow-up (Z = −5.25, p = 0.600).
Some participants reported that there were factors that prevented them from providing decision-making support to people with cognitive disability. Responses to these questions were open-ended and grouped into broad categories. Table 4 shows that the most common barrier reported was service providers or other supporters (not family) followed by the family of the person with cognitive disability. Table 4 also displays the facilitators and shows that the most common facilitator was knowing about the decision-making support principles.
Barriers and Facilitators to Providing Decision-Making Support to Adults with Cognitive Disability
a Nineteen participants responded to this question and some provided multiple responses.
b Twenty participants responding to this question and some provided multiple responses.
Discussion
The online training course that was evaluated was developed to address a key criticism of the existing research that the resources being used to build capacity in decision-making support were not evidence-based. The online training was developed based on the current evidence and its impact on disability support workers was explored. The training was designed to be completed online and was relatively brief (up to 80 min), thereby potentially reducing disruption to service provision. It included quizzes and case studies in video format to facilitate learning, and access to additional resources. In addition to being one of the first studies to explore the impact of an evidence-based training course about decision-making support, to the author’s knowledge, it is also the first published study that evaluates the impact of such a course on disability support workers beyond the initial completion of the course (i.e., in addition to post-training, includes assessment at 2-month follow-up). The research demonstrated that the training had a positive impact on disability support workers’ self-reported knowledge, confidence and attitudes, and that these changes were maintained at 2-month follow-up. These findings are a promising step towards building the evidence-base about decision-making support.
When asked about the sort of situations participants provided decision-making support for, every aspect of life was covered. Nearly all participants reported that they provided decision-making support for leisure, recreation and other social activities. This finding is unsurprising since decisions of this nature probably occur daily in the settings participants worked in and are also unlikely to be particularly contentious. In contrast, very few participants reported providing decision-making support for family planning decisions, which supports the literature about the sexual repression of people with cognitive disability, negative attitudes and restrictive views that many people hold about sexuality and parenthood in this group (Aunos & Feldman, Reference Aunos and Feldman2002; Gomez, Reference Gomez2012), as well as barriers to accessing contraception and related reproductive health care services (Abells, Kirkham, & Ornstein, Reference Abells, Kirkham and Ornstein2016; Mitra, Parish, Clements, Cui, & Diop, Reference Mitra, Parish, Clements, Cui and Diop2015; Mosher et al., Reference Mosher, Bloom, Hughes, Horton, Mojtabai and Alhusen2017).
The present research revealed that there were a range of factors that were reported to be barriers to providing decision-making support to adults with cognitive disability, the top two being disability service providers/organisations or other supporters (not the family) followed by the family of the person with disability. Although it is unclear from the results why participants felt that disability service providers could present as a barrier, this finding is consistent with previous research. Bigby et al. (Reference Bigby, Whiteside and Douglas2015) reported that structural issues, such as not having easy access to supervisors or others who had relevant expertise, inadequate communication systems, and inflexible schedules within an organisation could have a negative impact on decision-making support. In the Bigby et al. (Reference Bigby, Whiteside and Douglas2015) research, participants reported frustrations with the risk averse nature of the service providers that they worked for, which some reported to be driven by managing reputation or financial risks. The focus on managing these risks seemed to interfere with decision-making support. These barriers must be addressed if decision-making support is to be incorporated into day-to-day practice and protect the rights of people with disability.
The finding that families are often seen as presenting barriers to decision-making has also been reported by others. Families have been reported to restrict choice by not presenting all options or not remaining neutral (Bigby et al., Reference Bigby, Douglas, Smith, Carney, Then and Wiesel2021), as well as influencing the person by their words or actions (Knox, Douglas, & Bigby, Reference Knox, Douglas and Bigby2016). This and other research (e.g., Bigby, Whiteside, & Douglas, Reference Bigby, Whiteside and Douglas2017b) has highlighted the importance of relationships between supporters and the potential for conflict to arise when supporters have differing views and that mediation processes are required to resolve competing perspectives. As with disability service/ provider level barriers, these barriers must also be addressed in order to facilitate the implementation of decision-making support.
Although several barries were reported, there were also a number of facilitators. These included knowledge about decision-making support, knowledge and understanding of the person with disability, having empathy, communication aides, support from the organisation, legal reform, and additional time. Knowledge of decision-making support and, in particular, the underlying principles and philosophies has been identified as important in order for supporters to fully engage and commit to decision-making support (Bigby et al., Reference Bigby, Whiteside and Douglas2015). Knowledge of the person with disability and their communication style (including the use of aides) is also important because it enables supporters to tailor their communication style to the person. Legal reform has been previously identified as necessary, especially in relation to the implementation of the Convention and supported decision-making (Australian Law Reform Commission, 2014; Then, Carney, Bigby, & Douglas, Reference Then, Carney, Bigby and Douglas2018). These are all topics that were included in the online training course that was developed for the present research.
The results from this research have several practice or service delivery implications. The development and use of an online training course to upskill disability support workers in decision-making support is an important flexible learning offering. The evidence-based training that was developed for the present research could easily be included in disability service providers training opportunities as one way of building capacity about decision-making support. Its online nature means that it is likely to have greater reach and be more affordable than traditional face-to-face training. The results of the present research also demonstrate that there are some issues that disability service providers need to address, such as the need to identify and address internal policies and practices, and structural and systemic constraints that conflict with key human rights principles that are fundamental for the provision of decision-making support. It is also evident that there are opportunities to work with families to increase their engagement with decision-making support.
Notwithstanding the importance of the research, there are some limitations that warrant exploration. A key limitation is that, since participation was self-selected, there may have been bias in the sample. It is likely that the disability support workers who chose to participate in the research had a particular interest in decision-making support and/ or already had some knowledge about it. As such, the participants may not represent the typical disability support worker. Another limitation is that the results are based on self-report (i.e., supports workers’ own views of changes in their knowledge, confidence and attitudes) rather than objective measures of disability support workers’ behaviour or other outcomes. Further, data was not collected from the perspective of the person with disability to understand their perspective of outcomes. Outcomes at this level were outside the scope of the current research, however, should be addressed in future research.
Overall, this research found that an evidence-based training course had a positive impact on disability support workers who worked with adults with cognitive disability. The uptake of the course by disability service providers and disability support workers could help realise the autonomy and rights of people with cognitive disability and demonstrate that everyone can make decisions provided they receive the right support.
Acknowledgements
The author would like to thank the organisations that promoted the research and assisted with recruitment, and disability support workers who participated. The author would also like to thank Aleksandra Olczyk who led recruitment and Gemma Dodevska for her assistance developing the training.
Financial support
This work was supported by the Estate of the Late Elizabeth Mae Hughes, The Diana Browne Trust and The H P Williams Trust Fund via a Perpetual Impact Grant (Grant number: IPAP2017/1513).
Conflicts of interest
The author has no conflicts of interest or disclosures to report.
Ethical standards
The author asserts that all procedures contributing to this work comply with the ethical standards of the relevant national and institutional committees on human experimentation and with the Helsinki Declaration of 1975, as revised in 2008.
Appendix A: Attitudes Questions
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1. Decision-making support involves determining whether or not a person with disability has the capacity/ ability to make a decision
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2. When supporting someone with disability to make a decision, I need to think about what’s best for the person
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3. People with disability have the right to make decisions, even decisions that put them at risk
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4. What the family wants for the person with disability is just as important as what the person with disability wants
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5. If I am providing decision-making support to someone, I need to decide who else should be involved in the process
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6. When I am supporting someone with disability to make a decision, I need to be non-judgmental and unbiased
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7. The person with disability controls the decision-making process
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8. Once the person with disability has made a decision about something, they shouldn’t be able to change their mind
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9. A vote needs to be taken if people supporting the person with disability disagree about a decision
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10. If a decision is risky or bad for the person with disability, I need to step in to stop the person from taking that course of action
Appendix B: Training Course Outline
Module 1
What is decision-making support? Included:
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Definition and why it’s important (e.g., wellbeing, quality of life)
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Examples of decisions that people make (e.g., big, small, those that affect others, those that are complex)
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Underlying principles (e.g., The National Disability Insurance Scheme, The Convention, The Australian Law Reform Commission’s four key national decision-making principles)
Module 2
Understanding the person with disability and their needs. Included:
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What is cognitive disability and how does it affect people (e.g., communication, memory, thinking, social relationships)
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Strategies that can be used to support people (e.g., break down complex ideas, use pictures, avoid using abstract concepts, tailoring communication to the person)
Module 3
What is the role of supporters? Included:
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Who supporters can be (e.g., family, friends, paid staff) and what do they do?
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The characteristics of an effective supporter (e.g., changes his or her expectations to reflect the person’s individual needs, focusses on the will, preferences and rights of the person, remains neutral and unbiased, presents all the options, tailors communication to the person)
Module 4
What are the steps in the decision-making support process? Included:
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Breaking down a decision into various components (e.g., identifying the decision together, exploring the options together including the pros and cons, keeping records, acting on the decision)
Module 5
Making decision-making part of life. Included:
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Identifying opportunities in daily life for the person with cognitive disability to practice making decisions
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Encouraging and supporting autonomy
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Helping the person with cognitive disability build confidence to make decisions
Module 6
What are my challenges and where can I get support? Included:
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The importance of remaining neutral and identifying own biases
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Conflicting perspectives amongst supporters
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Managing risks, duty of care, and bests interests
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Tapping into organisational supports
