Developing and piloting the Consumer Experience of Capacity Assessment Tool (CECAT)

Abstract

Autonomy in personal decision-making (DM) is a fundamental human right. Yet, DM can be impaired for many reasons, including poor health. If impairments are suspected, they may be formally investigated via a capacity assessment. The ‘consumer’ experience of such assessments is largely unexplored. The Consumer Experience of Capacity Assessment Tool (CECAT) was developed to address this gap. Fifteen individuals pilot tested the CECAT. The CECAT was found to be quick to complete, and easily understood. The results showed a wide range of perceptions about capacity assessment and suggestions for improvement (e.g., better communication to consumers about what to expect). With further development, the CECAT could be adopted as a standardised method for understanding the consumer experience of capacity assessment. This perspective could then be integrated into future capacity assessment guidelines so that appropriate human rights-based approaches are incorporated into capacity assessments.

Increasing numbers of people are facing age-related health challenges that may compromise decision-making ability (Tampi et al., 2018). As a result, the demand for capacity assessments is likely to increase. Changes are underway to support these services; in Queensland, Australia, for example, the introduction of the Guardianship Administration & Other Legislation Amendment Act 2019 (Qld) required the development of capacity assessment guidelines for substitute decision-making (Queensland Government, 2020). The anticipated rise in demand for capacity assessments provides an opportunity for reflection on current practice and potential improvements.

When cognitive abilities are diminished or compromised by acquired brain injuries or neurodegenerative illnesses (such as dementia), decision-making can be adversely affected. A capacity assessment can determine (or inform) if this point has been reached, affecting decisions and possible future actions (Darby & Dickerson, 2017; Hegde & Ellajosyula, 2016). Decision-making can be impaired without the affected person realising it. Instead, the problem may be noticed by others, such as the person’s close friends or family. There is, however, the potential for discrepant views about retained and compromised abilities, and this can become a source of conflict. This is especially so if the affected person lives in a situation that involves abuse or undue influence (Falk & Hoffman, 2014; Moye & Marson, 2007; National Institute for Health Care Excellence, 2010), noting that there is potential for abuse where capacity is erroneously believed to exist (for example, to execute a transfer of property) or is alleged to have been lost (for example, to trigger a substitute decision-maker for financial matters).

Decisions that can become particularly challenging or contentious include decisions about money and assets, health, driving and estate planning (such as wills). This wide array of circumstances can affect how capacity is assessed, and who performs the assessments (Marson, 2016; Purser & Rosenfeld, 2014). Ultimately, the diminution or loss of decision-making capacity is a legal decision to be made by a court, and significant legal consequences can arise if a determination of lost capacity is made (Purser & Sullivan, 2019). Different legal tests and standards apply depending upon the specific decision being made, which can further differ subject to the relevant legal jurisdiction (Purser & Sullivan, 2019). This is reflective of the task and time-specific nature of capacity. For example, the capacity necessary to make a will differs from that to make an enduring power of attorney (EPA) in relation to financial decisions, which differs from that to appoint an enduring guardian to make health decisions, as well as to marry, enter into a contract for the sale and/or purchase of a property, or entry into a retirement village, and so on (O’Neill & Peisah, 2019; Purser & Sullivan, 2019). Consequently, it is necessary to be aware of the legal framework within which the decision is being made, including the standard required, to satisfactorily assess whether the person has the requisite legal capacity to make the specific decision in question.

‘Bad’ or ‘unwise’ decisions are insufficient grounds for establishing incapacity, and such decisions should not limit a person’s right to self-determination or exercise of autonomy (National Institute for Health Care Excellence, 2010). In fact, it is recognised in will-making, for example, that a testator is entitled to be capricious (Banks v Goodfellow, 1870; Roche v Roche, 2017). However, if the presence of a condition contributes to diminished or lost capacity in a specific area, noting the requisite legal framework (test and standard) within the particular jurisdiction (for example, state and/or national), and there is no prospect of restoration, assistance could be needed to facilitate legally recognised decision-making. This could be through, for example, transitioning to informal or formal supported decision-making or substitute decision-making. Supported decision-making focuses on providing an appropriate level of support to a person with a disability for the person to make their own decisions. Substitute decision-making is a mechanism through which someone is appointed to make substitute decisions for the person who has lost capacity. It can occur through either the valid execution of an EPA (generally for financial matters) and/or an advance health directive (for health decisions) or, in Australia for example, a tribunal order appointing an administrator (financial) or guardian (health) where valid substitute decision-making arrangements were not in place before the person lost capacity. Both supported and substituted decision-making mechanisms can be open to abuse. Ongoing discussion is occurring in relation to their utility and how to best prevent such abuse (Australian Law Reform Commission, 2017). Impaired decision-making can also result in other outcomes such as driving limitations or cessation, which can have a significant effect on a person’s mobility and potentially increase isolation and vulnerability to abuse (Wong et al., 2016).

The process for assessing capacity has been extensively discussed by professionals from disciplines such as health, law and social work; even so, there is still considerable debate about many aspects of capacity assessment (Gardiner et al., 2015; Spencer & Hotopf, 2019; Tampi et al., 2018). The challenges have spurred important collaborative efforts: for example, between legal and health professionals, and culminating in joint position papers, best practice guidelines and scoping appraisals (American Bar Association/American Psychological Association, 2018; National Institute for Health Care Excellence, 2010; Owen et al., 2009; Queensland Government, 2020). However, despite leading to recommendations, such as adopting collaborative or person-centred approaches, the literature appears to neglect the ‘consumer’ perspective of capacity assessments (Purser & Sullivan, 2019).

In other areas of health care, the consumer perspective is widely recognised as vital for improving services (Brenner, 2003; Facey et al., 2010; Milte et al., 2019; Wilkin & Hughes, 1987; World Health Organization, 2017). Further, health-related research, training agencies and other bodies may encourage or explicitly require that programmes utilise this perspective (United Nations, 2006). It stands to reason, therefore, that capacity assessments could also be improved by evaluating and responding to the consumer perspective. This perspective could include the views of direct and indirect consumers, where a direct consumer is the person who is assessed, and an indirect consumer is a family member or supporter who was involved with the capacity assessment or is affected by its outcome. For example, just as family and supporters are stakeholders for other supports and services (Pollock et al., 2020), family members and supporters may initiate the capacity assessment (even when viewed as unnecessary by the evaluee); provide instrumental support (e.g. transport for the assessment); contribute information (collateral report); and have an interest (malevolent or benevolent) in the outcome (e.g. attain the legal authority for substitute decision-making). Therefore, gaining a better understanding of the direct and indirect consumer view of capacity assessments could reveal new ways to improve them, including to engender respect for the consumer and promote dignity, as well as participation in the process. This would ideally facilitate more transparent and accurate outcomes as well as beneficially inform future best practice capacity assessment processes. Improving capacity assessment outcomes is especially important given the significant legal ramifications of a determination of lost capacity – that is, decisions of incapacitated persons not being recognised as valid at law. One fundamental aspect in analysing how to achieve this is by developing an understanding of what the consumer, both direct and indirect, experiences when undergoing an assessment, noting the nexus between consumer experiences of assessment and outcomes (Purser & Sullivan, 2019).

Given this, the present study study aimed to develop and pilot test the Consumer Experience of Capacity Assessment Tool (CECAT); a questionnaire for gathering information about the direct and indirect consumer experience of capacity assessment. The CECAT aims to document consumer experiences (e.g. when and where the assessments occur, who performs them), as well as perceptions of the process and outcome. The pilot test was used to establish some initial data on the CECAT’s usability (e.g. burden/completion time) to inform further development of the tool with a view to ultimately being able to draw on consumer experiences in the development of best practice processes.

Method

The development of the Consumer Experience of Capacity Assessment Tool (CECAT)

The CECAT was designed to be a multi-item questionnaire for assessing the direct and indirect consumer experiences of capacity assessments (for an excerpt: see Appendix). The CECAT has: (a) introductory items to collect information about the assessment (e.g. if information was provided in advance of it, such as who could attend, and about any cost for the consumer);¹ (b) 49 perception items (e.g. the assessment was fair?); (c) 10 future-action items (e.g. likelihood of seeking a second opinion? disputing the assessment?); and (d) items on the outcome reached (e.g. how it was communicated, whether it was expected). For the pilot version, additional usability items were added. Usability can be defined as a measure of the extent to which a product (or survey) can be engaged with by the target audience for a specified purpose, in a specific context and in ways that are satisfying, effective and efficient (Geisen & Bergstrom, 2017). In this study, we assessed usability through the inclusion of items such as how long did you take to complete the CECAT?

A consensual mapping process was used to generate the CECAT perception items. An initial item pool (78 items) was drawn up based on the literature. The items in this pool were then considered for the extent to which they mapped impressions of the capacity assessment process and outcomes in four domains (benefit, harm, justice and process; see Table 1 and Appendix). The four domains were also drawn from the literature identifying the themes commonly arising in relation to capacity assessments – that is, benefit to the consumer (positive ramifications, such as protection of a vulnerable incapacitated person), harm to the consumer (negative implications, for example, abuse of the process leading to an erroneous outcome), justice (in relation to the relevant legal framework) and process (when considering the impact of process on outcome). This mapping was established through a review process in which three independent raters allocated each of the items from the initial pool into one of the four domains. The raters included two people with experience conducting capacity assessments and publishing about capacity assessments (a lawyer, a psychologist) and a four-year undergraduate psychology degree qualified research assistant. The mapping for 75% of the items was unanimously agreed by the raters. The discrepancies were resolved through discussion, prior to the final adjustments being made (e.g. to achieve domains of a similar length). The final perception item pool comprised 49 items: benefit (n = 14), harm (n = 12), justice (n = 14), and process (n = 9). A readability analysis of the perception items based on consensus across seven formulae scored the CECAT text as ‘difficult’, but suitable, for people with eight or nine years of education.

Table 1.

Selected CECAT items showing an exemplar from each category and the number of items per category.

Category	Exemplar	Items (N)
Benefit	The assessment was positive	14
Harm	The assessment was stressful	12
Justice	The assessment was fair	14
Process	The assessment had an opportunity for questions	9

Note: CECAT = Consumer Experience Capacity Assessment Tool. The list of perception items is included in the Appendix.

The CECAT perception items are presented on a 5-point Likert scale (strongly disagree to strongly agree), with a ‘neither agree nor disagree’ midpoint. To minimise response bias, 25 items were reversed. The items were randomly ordered in the questionnaire to avoid blocking within a domain. After rescaling reversed items, higher scores indicate stronger agreement with statements and more positive perceptions about the capacity assessment.

Participants

The CECAT target audience is direct and indirect consumers of a capacity assessment. For this initial usability test, we sought volunteers for a study about capacity assessments. We advertised for people – including older adults – and those who might have had their own capacity assessed or been aware of such assessments being performed for others. These participants were recruited by word of mouth, starting with the researchers’ contacts, and those that were approached were encouraged to forward the survey to anyone from their network who might be interested. The final sample comprised people who were classified as indirect consumers of a capacity assessment process because they knew of someone who had had their capacity assessed (n = 5). The remainder of the sample were non-consumers (n = 10): these individuals volunteered because they were interested in the topic and were prepared to pilot test the measure. These participants were advised that they would be asked if they themselves had had their capacity assessed or if they knew others who had been assessed, and that they should answer ‘yes’ to one of these questions and then role play and respond as they imagine they might if they were in fact a direct or indirect consumer. A convenience sample of 15 individuals enrolled in the study, and 11 people completed it, including the five indirect consumers (Tables 1 and 2).

Table 2.

Sample characteristics and group comparisons for CECAT pilot study: completers, non-completers and overall.

	Overall (n = 15)		Completer (n = 11)		Non-completer (n = 4)		Completers versus non-completers group difference, (p)
	M (SD)	%	M (SD)	%	M (SD)	%
Age, years	49.14 (17.25)		50.91 (18.73)		42.67 (10.02)		.485
Sex, % malea		20		27		0	.275
Education, completed yearsa	16.68 (4.23)		16.36 (4.50)		18.50 (2.12)		.535
Occupationb							.844
Retired		27		20		7
Professional		67		47		20
Non-professional		7		7		0
Residential state or territoryb							.643
Victoria		20		13		0
Queensland		67		47		20
New South Wales		13		13		0
Language spoken at home, % English		100		—		—	—
Cultural group, % Australian		93		90		3	.566
Birth country, % Australian (non-Indigenous)		93		73		20	.566

Note: N = 15. CECAT = Consumer Experience Capacity Assessment Tool. Group difference test = independent-samples t test. Some values do not sum to 100 due to rounding error.

^aMissing data, sex: n = 1, education: n = 2; ^bunendorsed categories: occupation = homemaker, never employed; residential state or territory = Western and South Australia, Tasmania, Northern Territory, Australian Capital Territory.

^*unequal variance assumed.

Procedure

This project was approved by the Queensland University of Technology (QUT) Human Research Ethics Committee and for workplace health and safety. After consenting to participate, the study volunteers read a context statement about capacity assessments and why they are performed (Table 3). This script was used to assist the pilot sample to evaluate the measure. The respondents completed the CECAT online. The online materials were delivered using KeySurvey (WorldApp, Version 8.26). The CECAT perception items were administered in a fixed order, with minor wording adjustments for different consumer types (e.g. the assessment considered my health [direct consumer]/the health of person who was assessed [indirect consumer]). Branching logic was used to deploy some items (e.g. if ‘yes’ for ‘have you previously been assessed?’, then deploy ‘how many times?’; else, skip to next question).

Table 3.

Excerpt of context statement on capacity assessments.

Capacity assessments can be performed for a number of reasons. Capacity assessments can be performed if there is a decision to be made, and a question arises as to whether the decision maker has the ability to understand the decision being made. For example, a person's capacity might be assessed if they want to change their last will and testament but there is a question about whether the person has the mental ability to make the changes to his or her will. Capacity might also be assessed if there is uncertainty about whether or not a person can make their own decisions about other issues; such as how to manage their finances or safely drive a car.

Results

There was no difference in the sample characteristics of completers versus non-completers (see Table 2). On average, the participants were middle-aged, professionally employed, non-First-Nations ‘Australians’. The participants resided in one of Australia’s three most populous states (Victoria, New South Wales or Queensland), they spoke English at home, and most of them (80%) identified as female.

CECAT usability

The CECAT took the pilot testers between 7 and 45 min to complete (M_minutes = 22.46, SD = 3.57). Most people (91%) reported that the instructions were easily followed, and 73% of the sample did not recommend item additions or removals. In the further comments section, two respondents wrote that they thought the questionnaire was needed, and two respondents felt that the CECAT was too long.

Indirect consumer perspectives (non-role-play)

The CECAT was completed by five indirect consumers with knowledge of a capacity assessment about a family member (mother; n = 3), work colleague (n = 1) or close friend (n = 1). These respondents were: (a) told about the assessment by the evaluee (n = 2), (b) present when it occurred (n = 2), or (c) informed about the assessment by the assessor² (n = 1). The primary reason for the assessment was to evaluate the capacity to make health-related decisions (n = 4). In most cases, health professionals performed the assessment (e.g. general practitioner, occupational therapist). The assessment cost, when disclosed, ranged from no cost (n = 2) to up to AUD$150 (n = 2). The average subscore on each of the four dimensions of benefit, harm, justice and process was lowest for process (M = 3.30, SD = 0.52) and highest for justice (M = 3.77, SD = 0.29), but none of the subscale scores were statistically different (p > .05).

In all bar one case (work-related assessment), the assessment concluded that the evaluee did not have capacity. When capacity was found, the effect on the evaluee was viewed positively (it gave ‘confidence’). When capacity was not found, the effect was wide-ranging and included ‘relief’, but was predominantly negative (e.g. ‘confusion’, ‘depression’, ‘puzzlement and resentment’). The indirect consumers themselves also reported varied reactions (e.g. ‘I felt sad because the assessment highlighted the loss of my friend’s capacity’; ‘I was relieved that those who were better informed and more experienced took charge’). The ‘best’ and ‘worst’ aspects of the indirect consumer experience included giving a clear direction for the future (n = 2) and the length of the process (n = 2), respectively. The ‘next steps’ that were rated as likely or very likely by at least four indirect consumers were that decisions would now be made, and the outcome would be lived with. In most cases, a formal complaint or dispute over the outcome was considered unlikely or very unlikely (n = 4).

CECAT indirect consumer case studies

Three indirect consumer case studies were constructed from people’s responses to the CECAT and were selected for further exploration. This process was undertaken to highlight some important considerations that could arise from the application of the CECAT: specifically, how increasing consumer participation in the design and delivery of capacity assessments could potentially improve outcomes and lead to more positive experiences.

A confronting experience

In Case Study 1, the indirect consumer was the evaluee’s daughter, and the assessment was of her nearly 80-year-old mother. The middle-age daughter nominated her involvement in the assessment as ‘considerable’ and was present for it. The assessment was performed to evaluate capacity for health-related decisions. The capacity assessment occurred >6 months prior in a medical specialist’s office. The assessment cost was not disclosed. The process did not include time for questions or breaks, nor was it seen as accounting for the evaluee’s health, medications and/or general mental state. No pre-assessment information was received (such as who could attend, etc.), but ‘helpful’ written post-assessment information was given (a referral to a memory clinic). The assessment involved an ‘interview’ only (i.e. no functional or cognitive tasks), and although the outcome (incapacity) was ‘expected’, the experience was described as ‘confronting’.

A loss of personal power

In Case Study 2, the indirect consumer was the evaluee’s son, and the assessment was of his 90-year-old mother. The son had ‘no involvement’ in the assessment, although other family were present. The son was informed of the assessment by his mother. The reason for the assessment was to decide whether to invoke an EPA for the purposes of substitute decision-making. The capacity assessment occurred >6 months prior in the evaluee’s home. The assessment cost was < AUD$150. The process did not include time for questions or breaks, and it was seen as taking account of the evaluee’s health, medications and general mental state. No pre- or post-assessment information was received. An ‘interview’ was used (i.e. no functional or cognitive tasks), and the outcome (incapacity) was ‘unexpected’. The son and his mother were in agreement that the assessment did not reveal ‘true capabilities’. The son suggested that the process should involve more collaboration among, and consultation with, family members. The ‘best’ and ‘worst’ aspects of the assessment were that ‘a clear course of action’ was identified, but ‘there was a loss of power for the [evaluee] during and after the assessment’. According to the son, the mother found the experience ‘somewhat intrusive and puzzling, resulting in mild resentment; but, [did] not [resist nor refuse]’. She ‘considered her level of independence and decision-making capacity had been diminished [and] expressed some resentment about the loss of personal power’.

Eventually, relief and confidence

In Case Study 3, the indirect consumer was the evaluee’s daughter. The evaluee was 85 years old. The daughter had ‘full involvement’ in the assessment and was present for it. The reported reason for the assessment was to determine capacity to make health-related decisions. The capacity assessment occurred >6 months ago, in a ‘health centre’, at no cost to the family. The assessment was performed by a medical specialist. The process included time for questions and took account of the evaluee’s health and general mental state. It was not certain whether pre- or post-assessment information was received. The assessment involved an ‘interview’ and functional and cognitive tests, and the outcome (incapacity) was ‘expected’. The daughter felt that the mother experienced ‘relief’. The assessment prompted ‘admission into retirement care’, as the evaluee could no longer ‘prepare meals’ for herself. The ‘best’ and ‘worst’ aspects were that the assessment built ‘confidence’, but the process was too long.

Discussion

This study introduced a new tool for measuring consumer, both direct and indirect, views of capacity assessments. To the best of our knowledge this is the first and only measure of this type. It was developed because the lived experience of direct and indirect consumers of capacity assessments is generally not known, which could be a barrier to developing relevant guidelines, policies and practices. Although the CECAT requires further psychometric evaluation, its potential, and the need for a ‘consumer voice’, is revealed in this pilot study.

This study shows that the CECAT can yield information about when and how capacity assessments are being performed, and how they affect consumers. As the case studies show, the CECAT can shed light on who is being evaluated, for what reasons, and the assessment logistics (e.g. what was considered, where it occurred). Such information is vital to understand current practice and reveal consumer-led recommendations for improvements that are grounded in human-rights-based principles including participation and respect for individual dignity and autonomy.

The early indications are that the CECAT is simple and relatively quick to complete. On average the CECAT was completed in less than 30 mins. However, future usability tests must recruit a more diverse sample, especially direct consumers. The CECAT perception items were intended to explore consumer perceptions of the assessment as harmful, beneficial, just and procedurally appropriate. These items could offer valuable new insights into how capacity assessments are perceived on four fundamentally important dimensions. Future research should recruit a larger sample to explore CECAT scale refinements and establish psychometric properties, including via factor analysis to determine whether the perception items do map onto the proposed domains. Until this occurs, the CECAT can only be used descriptively and for research purposes.

Notwithstanding the small size and composition of the present sample, this study provides insights into the practice refinements that the CECAT could reveal if implemented in a larger study. The case studies highlight a perceived gap in the provision of pre- and post-assessment information. This is a known problem, identified from other sources (Mitchell-Cichon, 2002), but the consumer feedback could spur further action and consideration of how such exchanges could be optimised for consumers. The data also highlight a range of reactions to capacity assessments, and this new information suggests that the process may need adjustment to ensure adequate emotional and/or other supports for direct and indirect consumers.

This study has several limitations. First, as noted above, the sample was small and unrepresentative, and included non-consumers; all of which could affect the validity of the results. Further, the study constraints precluded the recruitment of direct consumers with lost or diminished capacity; therefore, it is unclear whether the CECAT can be used with such persons. Related, future CECAT evaluations should include people whose capacity was assessed for non-health-related reasons, and by other (non-health) professionals or teams, to determine its applicability in such contexts. Second, although the CECAT item-generation process was informed by the literature (Mitchell-Cichon, 2002; Pachet et al., 2012; Stasi, 2012), it was not conceptually driven, nor did it directly involve consumers. This means that the perception items may not capture all issues of importance to consumers. In an open-ended question where respondents could nominate additional areas/issues, no responses were received, but we cannot rule out that additional aspects of the consumer experience should be considered as the CECAT evolves. Third, the perspective gained from the CECAT is only representative of the consumer experience; thus, it could be disputed by other parties, such as the service providers. Related, when deployed cross-sectionally, the CECAT cannot evaluate changes in perceptions about the assessment process and outcome, or the actual outcome. This could be important because the context of the assessment may influence a person’s experience of it – for example, if there is disagreement about the outcome, or if, as in Case Study 3, the assessment is considered intrusive or too long at first, but later viewed as a relief. Tracking such changes over time is a critical objective for future research. Furthermore, the inherent bias in contested capacity cases must be acknowledged – that is, parties who do not receive the expected capacity assessment outcome may be disgruntled, especially if there are flow-on effects such as the removal of that (disgruntled) party as a beneficiary in a will by a capacious testator. This highlights the importance of using the CECAT to provide information about consumer experiences as one source of data informing the development of best practice guidelines, along with, for example, data obtained from health, legal and government stakeholders (Purser & Sullivan, 2019). It also highlights the need for best practice guidelines and review processes given the abuse that can occur when individuals are incorrectly assessed as either lacking or possessing legal decision-making capacity.

There are many steps involved in scale development, and currently the CECAT is at the very beginning of this process (Boateng et al., 2018; Worthington & Whittaker, 2006). With further research, it is hoped that the CECAT will continue to evolve and be refined. We also encourage other forms of research into the consumer experience of capacity assessments, such as using focus groups and mixed-methods approaches. The findings from such endeavours could be fed into the CECAT development process and the complementary evidence used to improve the consumer experience of capacity assessments. A major advantage of the CECAT is that it could be used in a national or international study to provide important benchmarking information about capacity assessments. This would give voice to many people about their capacity assessment experiences and hopefully lead to improved processes and outcomes for both direct and indirect consumers.

Appendix. Excerpt from the CECAT showing the perception items.

The items are listed according to their subscales and the order in which they appeared (item number). The full CECAT is available on request from the corresponding author.

 

CECAT subscale	Item no.	CECAT perception item
Benefit	1	The assessment was helpful.
Benefit	3	The assessment was necessary.
Benefit	7	The assessment was positive.
Benefit	8	The assessment was beneficial.
Benefit	9	The assessment was precautionary.
Benefit	19	The assessment was a relief.
Benefit	27	The assessment revealed the truth.
Benefit	28	The assessment was worthwhile.
Benefit	29	The assessment united everyone.
Benefit	41	The assessment was for protection.
Benefit	42	The assessment was a safeguard.
Benefit	45	The assessment gave me confidence.
Benefit	46	The assessment helped the person prove him/herself.
Benefit	47	The assessment was a good idea.
Harm	4	The assessment was upsetting.
Harm	15	The assessment was demeaning.
Harm	17	The assessment was hurtful.
Harm	18	The assessment was stressful.
Harm	21	The assessment led to mistrust.
Harm	22	The assessment led to suspicion.
Harm	23	The assessment led to disharmony.
Harm	30	The assessment led to secrecy.
Harm	31	The assessment led to conflict.
Harm	43	The assessment threatens independence.
Harm	44	The assessment made me worry.
Harm	48	The assessment made the situation worse.
Justice	11	The assessment was fair.
Justice	12	The assessment was voluntary.
Justice	13	The assessment was justified.
Justice	24	The assessment was an abuse of power.
Justice	25	The assessment was under duress.
Justice	26	The assessment was based on lies.
Justice	32	The assessment was done in secret.
Justice	33	The assessment was by choice.
Justice	36	The assessment involved coercion.
Justice	37	The assessment involved trickery.
Justice	38	The assessment was dishonest.
Justice	39	The assessment involved deception.
Justice	40	The assessment was forced on me/the person assessed.
Justice	49	The assessment did not reach the truth.
Process	2	The assessment was thorough.
Process	5	The assessment was intrusive.
Process	6	The assessment was confusing.
Process	10	The assessment was clearly explained.
Process	14	The assessment involved family/friends.
Process	16	The assessment was respectful.
Process	20	The assessment was confidential.
Process	34	The assessment was intimidating.
Process	35	The assessment was professional.

Note: CECAT = Consumer Experience Capacity Assessment Tool.

Ethical standards

Declaration of conflicts of interest

Karen Sullivan has declared no conflicts of interest.

Kelly Purser has declared no conflicts of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee QUT Human Research [ethics committee] and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Health and safety

All mandatory health and safety procedures have been complied with in the course of conducting this study.