Introduction
The high prevalence of medical morbidity and premature mortality among people living with a mental illness (Firth et al. Reference Firth, Siddiqi and Koyanagi2019) have created an imperative to improve quality care towards the end-of-life. Exercising autonomy in health-related decisions is one aspect of such care, acknowledged as a human right (Brennan Reference Brennan2007; Peisah et al. Reference Peisah, Sampson and Rabheru2021). However, people with serious mental illness may not have their end-of-life needs recognized (Edwards et al. Reference Edwards, Anstey and Coffey2021) and are rarely engaged in ACP discussions (Appelbaum Reference Appelbaum2005; NSW Ministry of Health 2015a; Shalev et al. Reference Shalev, Brewster and Arbuckle2017).
Several studies have informed understanding of why ACP discussions do not occur with people with mental illness. Chief among the barriers are clinician assumptions about lack of decision-making capacity (Jerwood et al. Reference Jerwood, Phimister and Ward2018; Shalev et al. Reference Shalev, Brewster and Arbuckle2017; Wand et al. Reference Wand, Karageorge and Zeng2024, Reference Wand, Karageorge and Zeng2025), clinician (Jerwood et al. Reference Jerwood, Phimister and Ward2018; Wand et al. Reference Wand, Karageorge and Zeng2024, Reference Wand, Karageorge and Zeng2025; Woods et al. Reference Woods, Willison and Kington2008) and carer (Wand et al. Reference Wand, Karageorge and Zeng2025) concerns about causing distress, deficiencies in clinician knowledge and training (Foti Reference Foti2003; Wand et al. Reference Wand, Karageorge and Zeng2024; White et al. Reference White, Willmott and Cartwright2014) and mental health clinicians not considering ACP within their scope of practice (Edwards et al. Reference Edwards, Anstey and Coffey2021; McKellar et al. Reference McKellar, Ng and Chur-Hansen2016; Wand et al. Reference Wand, Karageorge and Zeng2024). There is some overlap between mental health and general healthcare contexts regarding barriers to ACP implementation, such as lack of clinician knowledge and practical skills, uncertainty regarding clinician roles in ACP, questions about cognitive state and when to discuss ACP and insufficient time for ACP discussions (Poveda-Moral et al. Reference Poveda-Moral, Falco-Pegueroles and Ballesteros-Silva2021). However, in the general healthcare context, fears of depriving patients of hope and uncertainty about prognosis have been identified (Poveda-Moral et al. Reference Poveda-Moral, Falco-Pegueroles and Ballesteros-Silva2021). By contrast, mental health clinicians’ fears relate more to ACP discussions causing distress, making symptoms of mental illness worse and damaging the therapeutic relationship (Jerwood et al. Reference Jerwood, Phimister and Ward2018; Wand et al. Reference Wand, Karageorge and Zeng2024). Additionally, the complexity of assessing capacity in the context of persistent psychotic symptoms and cognitive impairment were emphasized by mental health clinicians (Wand et al. Reference Wand, Karageorge and Zeng2024). We have argued that many of these identified barriers reflect lack of knowledge about ACP with people with mental illness, where there are specific challenges and complexity, which are potentially remediable (Wand et al. Reference Wand, Karageorge and Zeng2024, Reference Wand, Karageorge and Zeng2025). Crucially, consumers and carers have indicated they consider mental health clinicians as best placed to help them with ACP (Wand et al. Reference Wand, Karageorge and Zeng2025), necessitating targeted training to prepare them for this role.
Despite the identified need to improve access to ACP for people with mental illness (Edwards et al. Reference Edwards, Anstey and Coffey2021), succinct and accessible evidence-based resources designed specifically to support mental health clinicians, consumers (patients) and carers to learn about and engage in ACP are scarce (Foti Reference Foti2003). One exception is the “Do It Your Way” demonstration project which focused on end-of-life care for people with serious mental illness (Foti Reference Foti2003). The project included establishing a coalition of interested parties, information meetings and education and training for providers of both mental health and palliative care/hospice services, with educational curricula for the provider groups (Foti Reference Foti2003). Education included case studies and resource materials, including the “Do It Your Way” brochure and workbook for consumers, based on information requests and questions rather than empirical research (Foti Reference Foti2003). Detailed content was not presented, and the resources are not freely accessible. Preliminary feedback on the curriculum was reportedly positive, although no quantitative results were published (Foti Reference Foti2003). It is unclear whether the initial project – conducted over 20 years ago – was implemented into routine practice. More recently, New South Wales Health (Australia) published a comprehensive guide to ACP for end-of-life for people with mental illness for clinicians (46 pages) (NSW Ministry of Health 2015a) and an Introductory guide for consumers, families and carers (16 pages) (NSW Ministry of Health 2015b). These documents contain helpful information, but are lengthy, with no succinct “take-home” resources. Additionally, they utilize references and practical recommendations from the general literature, rather than grounding these in evidence specific to mental health.
The aim of this study was to triangulate the perspectives of mental health clinicians, older people with mental illness and their carers on Advance Care Planning to develop evidence-informed educational resources practically suitable for the local health context.
Methods
This study describes the development of ACP educational resources informed by qualitative data from two previously reported empirical studies with multidisciplinary mental health clinicians (Wand et al. Reference Wand, Karageorge and Zeng2024) and older adult consumers of public mental health services and their carers (Wand et al. Reference Wand, Karageorge and Zeng2025). These previous studies explored perspectives on ACP with older people with a psychotic illness. The present study triangulates the themes which emerged in each of the three participant groups, exploring congruent and divergent themes. This novel analysis (triangulation) generated overarching themes, which were then applied to knowledge translation using an interpretive description framework to develop education and training resources. The original qualitative studies (Wand et al. Reference Wand, Karageorge and Zeng2024, Reference Wand, Karageorge and Zeng2025) and the present study were guided by the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al. Reference Tong, Sainsbury and Craig2007) and were approved by the Human Research Ethics Committee – Concord Repatriation General Hospital of the Sydney Local Health District, Sydney, Australia (2023/ETH02283).
Three groups of participants were recruited from public mental health services across three Local Health Districts in Sydney, Australia. Participants were older adults with a psychotic illness (aged ≥55) [consumers] n = 12, their nominated adult carer n = 5, and multidisciplinary mental health clinicians n = 15. The characteristics of participants are summarized in Table 1. Each consumer and carer participated in an individual interview with an external clinician facilitator (Wand et al. Reference Wand, Karageorge and Zeng2025). Clinicians took part in focus groups with the same facilitator (Wand et al. Reference Wand, Karageorge and Zeng2024). The facilitator used a semi-structured interview guide to examine the experiences, attitudes, and perceived barriers and facilitators to ACP with participants. Individual interviews and focus group discussions were audio recorded and transcribed verbatim. Recruitment continued in all groups until saturation of themes was reached in data analysis.
Characteristics of participants
Summarized from: (Wand et al. Reference Wand, Karageorge and Zeng2024, Reference Wand, Karageorge and Zeng2025).
* Some consumers had more than 1 psychiatric diagnosis.
Rating scales used:
• PANSS = Positive and Negative Symptom Scale (Yamamoto et al. Reference Yamamoto, Inada and Shimodera2010). The Brief PANSS is rated across 6 symptoms (e.g., unusual thought content, delusion), each scored from 1 (absent) to 7 (extreme).
• CGI = Clinical Global Impression Scale (Busner and Targum Reference Busner and Targum2007). The CGI severity of illness scale is rated from 1 (normal) to 7 (among the most extremely mentally ill). A score of 0 indicates not assessed.
• MoCA = Montreal Cognitive Assessment (Nasreddine et al. Reference Nasreddine, Phillips and Bedirian2005). A normal score is ≥26/30.
• RUDAS = Rowland Universal Dementia Assessment Scale (Storey et al. Reference Storey, Rowland and Basic2004). This test was used for participants whose first language was not English. A normal score is ≥26/30.
Data analysis
Interview transcripts were analyzed using reflexive thematic analysis (Braun and Clarke Reference Braun and Clarke2006, Reference Braun and Clarke2019, Reference Braun and Clarke2021). Individual stakeholder group data (consumer, carer, clinician) have been previously reported (Wand et al. Reference Wand, Karageorge and Zeng2024, Reference Wand, Karageorge and Zeng2025). The qualitative analysis was grounded within an interpretive description framework; an approach which holds the creation of clinically- and practice-relevant knowledge central to the analysis (Thorne et al. Reference Thorne, Kirkham and MacDonald-Emes1997). This methodology is well suited to clinical translation by yielding practical applications relevant to service delivery and improvement. Two senior qualitative researchers (AW, CP) used constant comparison and regrouping of themes to derive triangulated themes in the present study.
Resource development
Triangulation refers to using multiple data sources or methods to develop in-depth understanding of phenomena (Carter et al. Reference Carter, Bryant-Lukosius and DiCenso2014). In this study, data source triangulation involved the analysis of data from the three stakeholder groups derived from focus groups (clinicians) (Wand et al. Reference Wand, Karageorge and Zeng2024) and individual interviews (consumers, carers) (Wand et al. Reference Wand, Karageorge and Zeng2025). Triangulation of qualitative data from the three groups led to identification of overarching themes relevant to implementation of ACP within clinical practice. Within an interpretive description framework for knowledge translation, this analysis was used to guide the development of resources to support implementation of ACP in a public mental health context. Each overarching theme was matched to an intervention to address the underlying issue (e.g., barriers or facilitators to ACP), taking into account practical considerations for the local mental health context.
Results
Detailed results from the thematic analysis of the original qualitative studies have been reported (Wand et al. Reference Wand, Karageorge and Zeng2024, Reference Wand, Karageorge and Zeng2025). Key themes from the original studies of each group are summarized in Table 2.
Emergent themes for consumers, carers and clinicians
Triangulation of these themes from each of the stakeholder groups identified four overarching themes: (i) importance of ACP recognized but ACP often not initiated; (ii) knowledge gaps; (iii) skill gaps – how to do it; and (iv) practical and process issues. Each overarching theme is presented with illustrative quotes and discussed alongside a matched intervention to address the issue.
(i) Importance of ACP recognized but ACP not initiated
“If you don’t have these conversations, the wishes of the patient can’t be fulfilled …. and the family need to know exactly where they’re coming from, what they want done.” (female consumer, aged 67) (Wand et al. Reference Wand, Karageorge and Zeng2025)
“[ACP] is sort of like giving the person a voice, a choice, while they’re still able to.” (female, paid carer) (Wand et al. Reference Wand, Karageorge and Zeng2025)
“For most people being able to have some autonomy or some ability to make decisions for their health is really important.” (clinical psychologist) (Wand et al. Reference Wand, Karageorge and Zeng2024)
All stakeholder groups considered ACP important and empowering for the consumer. Consumers and carers highlighted ACP as relieving family of the burden of making such decisions, while clinicians identified that ACP may unearth family conflict and disagreement about end-of-life care.
Both consumers and carers identified that clinicians had not raised ACP with them. Inferences drawn from this included that it must not be relevant for the consumer (e.g., because their ability to engage in the process was underestimated and clinicians assumed mental illness equated to incapacity). Themes from clinician focus groups indicated that they thought ACP was relevant and important for their consumers, but complexity was a barrier to raising it.
Matched intervention
These findings reflect the interest in and desire for ACP, with barriers for raising the issue with consumers. Interventions for this comprise training to address both knowledge and skill gaps which may be responsible for this reticence, as well as process issues such as ACP timing and incorporation into routine mental health reviews. These interventions are outlined in detail below.
(ii) Knowledge gaps
All groups lacked knowledge about ACP and held various misconceptions such as consumers not having a choice in relation to end-of-life care, needing a lawyer, costs involved (consumers) and assumptions that cognitive impairment precluded engagement in ACP (carers). Clinicians shared some of these misconceptions (e.g., regarding consumer capacity to participate in ACP, especially when there are persistent psychotic symptoms), reflective of identified deficits in ACP education and training.
Matched intervention
Key to this intervention was the development of free, easily accessible resources. To address the identified lack of ACP-related knowledge across all stakeholder groups a 2-page information sheet was devised, bespoke to each group. The intention was that clinicians could share these evidence-informed information sheets with consumers and carers, as a handout before or after ACP discussions to spark discussion and reinforce key information. The clinician information sheets were designed as a takeaway supplementary resource accompanying clinician education sessions. These bespoke handouts were tailored to the particular considerations for ACP with people with mental illness which drive complexity of ACP in this population and act as barriers for clinicians and carers, namely, fluctuating capacity and persistent symptoms of mental illness. As such, there was a focus in the handouts on assessing capacity alongside strategies to empower the consumer, such as supported decision making. To facilitate access, these written resources were made freely available on the Capacity Australia website. (https://capacityaustralia.org.au/acp-resources/).
Common elements for each stakeholder information sheet included information about what ACP is, why it is important, when it should be considered, dispelling misconceptions (specific to those raised by that group in the primary analysis) and resources for further information. The consumer version contained additional information on whom to seek help from with ACP and practical steps in ACP. Carer and clinician versions included information on decision-making capacity and the law. Specific tips on how to help a consumer with ACP from the perspective of a Carer or Clinician were included in respective versions. To address carer-identified concerns about ACP and knowledge gaps highlighted in the qualitative analysis, targeted topics addressing these issues were provided in the carer information sheet (https://capacityaustralia.org.au/wp-content/uploads/2025/03/MT0328_NSWGOV_SLHD01_BROCHURE_V6_%E2%95%9EAE_CARER_WEB.pdf),
Culture, ethnicity and religion emerged as pertinent to ACP in the thematic analysis (Wand et al. Reference Wand, Karageorge and Zeng2024, Reference Wand, Karageorge and Zeng2025). Recognizing that not all consumers and carers are literate in English, the ACP information sheets were translated into the three most common languages spoken in Sydney Local Health District; Simplified Chinese, Arabic and Greek (https://capacityaustralia.org.au/acp-resources/). Translation was undertaken by the NSW Multicultural Health Communication Service.
The stakeholder information sheets were presented to mental health clinicians for feedback, who rated the information sheets as having good face validity. Modifications were suggested and incorporated regarding the content, font size, layout and information to emphasize for consumers, to improve relevance, readability and focus on key messages.
(iii) Skill gaps: how to do it
“If you don’t do it very often, then you’re not very skilled at it. And so, then it comes out as very awkward when you do try to do it and that makes you not really wanna try again.” (psychiatrist) (Wand et al. Reference Wand, Karageorge and Zeng2024)
“The professors, doctors, social workers … you wouldn’t [need special skills] in your positions, you’d have that skill already.” (male consumer, aged 69) (Wand et al. Reference Wand, Karageorge and Zeng2025)
Consumers and carers thought that mental health clinicians had the requisite skills and personal qualities to assist consumers with ACP, so would not need any special training. This conflicted with a theme emerging from analysis of clinician focus groups, that they lacked knowledge and practical training in ACP. This skill gap was also reflected by their concerns about causing consumers harm (e.g., by inadvertently causing offence or exacerbating psychotic symptoms) by raising ACP, especially from not knowing how or when to do it, and difficulty navigating legal issues and capacity, particularly with consumers who have residual symptoms of mental illness.
Matched intervention
As a key gap identified was practical skills engaging in ACP with consumers, training films were developed which illustrated common misconceptions and perceived challenges and demonstrated strategies to address them. The scripts were co-written by an occupational therapist with extensive practical experience of ACP with people with mental illness and/or dementia and two psychogeriatricians. The content was drawn directly from the original qualitative research (Wand et al. Reference Wand, Karageorge and Zeng2024, Reference Wand, Karageorge and Zeng2025), emphasizing practical challenges of implementing ACP with this specific cohort (e.g. persistent psychotic symptoms, timing of ACP discussions in relation to acuity of mental illness) and techniques to address them. Accompanying the scripts were “pop up boxes” of key learning points overlaid on the film. Film length was capped at 10 minutes each to be easily digestible for a busy clinician.
A design and production company, Bright Agency, with expertise in communication and health promotion was hired to create the films. Volunteers were recruited to play the roles of consumers and carer. A senior clinician (RB) with clinical experience in ACP played the role of mental health clinician in both films.
Two films were created. Each film demonstrates how a clinician may introduce, explain and encourage ACP with a consumer. One film illustrates how to engage and adapt ACP for an older adult consumer with stable residual psychotic symptoms and cognitive impairment (https://capacityaustralia.org.au/acp-resources/). The other film depicts ACP with a consumer recovering from psychotic depression and his wife, highlighting how to determine the timing of ACP in relation to illness course, approaches to addressing carer concerns about causing harm, and dispelling misconceptions (https://capacityaustralia.org.au/acp-resources/).
The 2 films were played to a convenience sample of 13 people including older adults and carers of older adults, general community members and multidisciplinary clinicians. Spontaneous discussion of the importance of ACP followed the screening. Feedback indicated that the films appeared authentic (reflective of real-world clinical interactions), were engaging, well produced and clearly conveyed key messages. Some perceived the film lengths as too long.
To complement the practical demonstration of ACP in the films, suggestions for starting ACP discussions were also included in the clinician information sheet, alongside information on assessing capacity and determining the right time for ACP discussions in the context of a person’s acuity of mental illness (https://capacityaustralia.org.au/wp-content/uploads/2025/03/MT0328_NSWGOV_SLHD01_BROCHURE_V6_%E2%95%9EAE_CLINICIAN_WEB.pdf).
(iv) Practical and process issues
“…because I’ve got nobody else to discuss this with…. So [it would be] good to talk to someone about advance care planning.… to have a conversation with a health professional.” (male consumer, 68) (Wand et al. Reference Wand, Karageorge and Zeng2025)
“The attitude is really important, the enthusiasm. [The mental health clinician] is so close, friendly, and spends time with [the consumer]. They care….” (son) (Wand et al. Reference Wand, Karageorge and Zeng2025)
“Who’s got the time?” (social worker) (Wand et al. Reference Wand, Karageorge and Zeng2024)
“I don’t know if there’s a policy. I don’t know what the standard practice is.” (occupational therapist) (Wand et al. Reference Wand, Karageorge and Zeng2024)
Practical and process aspects of engaging consumers in ACP within usual clinical care emerged as important themes across stakeholder groups. Flexibility with ACP was identified by consumers and carers as important, including their having a say in where, when and how ACP takes place. Difficulty determining the optimum timing of ACP discussions was perceived as a barrier to clinicians engaging in ACP.
All three stakeholder groups identified time as an obstacle to engaging in ACP. Consumers and carers perceived General Practitioners (GPs) as too busy to discuss ACP. Related to this theme was divergence among stakeholder groups as to who should lead ACP with consumers. Consumers and carers identified mental health clinicians as inherently having the skills, knowledge of and therapeutic relationship with the consumer and time for ACP. By contrast, clinicians were unsure ACP was their role, did not see it as a priority and described lacking the time required to engage in ACP.
An emergent theme from families/carers was their potential role as cultural brokers and leveraging their in-depth knowledge of the consumer (e.g., their mental health or trauma history) to support ACP. This role provides a potential solution to the complexity of considering culture identified by clinicians and contrasts with the clinician concerns about families and culture as potential barriers to ACP. Carer involvement in ACP may also mitigate their identified fears of clinicians inadvertently causing harm if they lacked sensitivity or did not carefully consider the right time for ACP discussions with consumers.
Clinicians raised the need for systemic change to support their involvement in ACP. The theme of ACP not being prioritized or embedded in practice was a barrier as clinicians were unsure of their roles and responsibilities in relation to ACP. Clinicians observed deficiencies in procedural guidance and access to local policies on ACP which amplified their uncertainty about implementation. Lack of knowledge about where and how to document ACP discussions were raised.
Consumers wanted their ACP discussions shared widely, including with their GP, support services and families. Carers echoed this sentiment. This did not emerge from analysis of clinician data, perhaps due to uncertainties about their role in ACP and documentation of discussions.
Matched intervention
Proposed strategies to optimize the timing of ACP discussions informed by the original qualitative studies included leveraging the combined expertise of the multidisciplinary team available to mental health clinicians (person-centered risk analysis of timing), consulting the treating psychiatrist about questions of capacity, and incorporating carer/family knowledge of the consumer (Wand et al. Reference Wand, Karageorge and Zeng2024, Reference Wand, Karageorge and Zeng2025). These strategies were included in the stakeholder information sheets (carers and clinicians). The film featuring the couple and clinician discussing ACP highlighted ways of providing initial information on ACP to evaluate whether this is the right time for ACP, ultimately determining more time was needed for recovery from depression before the consumer was able to comfortably and meaningfully participate in ACP, and respecting the wife’s input that now was not the right time.
Solutions were proposed to address the issue of lack of time for ACP. A consumer participant proposed having a series of short discussions about ACP with a clinician rather than one long session. This aligned with a solution proposed from the analysis of clinician data, to have iterative brief discussions with consumers over a series of sessions (Wand et al. Reference Wand, Karageorge and Zeng2024), recommended elsewhere (Knippenberg et al. Reference Knippenberg, Zaghouli and Engels2023). This strategy of “evolving conversations” is included in the information sheet for clinicians. It is also reflected in the training films, which both demonstrate brief conversations about ACP contained within 10 minutes and plans to revisit discussions later.
Cultural aspects were identified as relevant to ACP, both as an aspect of complexity and barrier to ACP but also a factor which might promote engagement in ACP if incorporated sensitively. All stakeholder information sheets include information on who can help and support consumers in ACP. The carer information sheet notes the potential role of the carer supporting ACP through their knowledge about the consumer’s personal history, cultural background and care needs. Both films illustrate the utility of involving nominated carers/family in ACP.
Clinicians identified a need for systemic change if ACP is to be more broadly incorporated into clinical practice. Accordingly, the clinician information sheet has a dedicated section on how ACP may be brought into routine care, including through being embedded in care plans and ward rounds or community multidisciplinary team discussions. The information sheets may also be used to support implementation, as a simple stakeholder-informed resource which can be given by clinicians to consumers and carers to start or follow-up ACP discussions. Other strategies to effect systemic change included support from managers emphasizing that ACP is important and part of routine care, backed-up by guidelines and procedures to support implementation (Wand et al. Reference Wand, Karageorge and Zeng2024). Appointing team-based ACP champions and using audit and feedback would help reinforce ACP as part of standard care (Wand et al. Reference Wand, Karageorge and Zeng2024). The need for accessible documentation of ACP (e.g., in the medical records) is also highlighted, alongside sharing ACP information widely, the latter consistent with the expressed wishes of consumers (Wand et al. Reference Wand, Karageorge and Zeng2025) and improving the likelihood of ACP information being identified and utilized when needed towards the end of life.
Discussion
To the best of our knowledge this is the first study to describe the development of evidence-informed educational resources to support older adults with mental illness, their carers and clinicians with ACP. Four overarching themes emerged in triangulation of qualitative analyses from each of the three stakeholder groups (Wand et al. Reference Wand, Karageorge and Zeng2024, Reference Wand, Karageorge and Zeng2025): (i) importance of ACP recognized but ACP often not initiated; (ii) knowledge gaps; (iii) skill gaps – how to do it; and (iv) practical and process issues. Educational resources were developed to address the identified issues within each overarching theme; information sheets bespoke to each stakeholder group and two clinician training films demonstrating key aspects of ACP in practice. The resources were designed to bridge specific knowledge and skill gaps, but also to be practical providing guidance for implementation of ACP into mental health clinical practice, supporting broader educational interventions and complemented by governance strategies to embed ACP within health services.
The literature describing educational resources for mental health clinicians in ACP while limited, is promising. The “Do It Your Way” project demonstrated the ability and interest of mental health consumers to engage in ACP, without causing harm (Foti et al. Reference Foti, Bartels and Merriman2005), and was associated with an increase in completion of ACP documents and health care proxies (Foti Reference Foti2003). However, the resources developed for the project are not freely available and do not appear to have been derived empirically precluding comparison with our resources (Foti Reference Foti2003). A 3-hour 1-time workshop for psychiatry residents on medical and psychiatric ACP was described in abstract form only (Bates et al. Reference Bates, Schell and Azzam2019). The workshop included drill-based practice of ACP communication skills and role-playing completion of Advance Care Directives (ACD) using cases. For the 41 participants who completed post-workshop surveys, objective measures of ACP knowledge improved, alongside self-reported greater comfort discussing end-of-life care, ability to address key elements of ACP, and facilitating medical ACP – all statistically significant (Bates et al. Reference Bates, Schell and Azzam2019). No details were provided on whether there were take-home/online resources to reinforce the teaching. An Australian study described cross-training mental health and palliative care clinicians through liaison roles, education and modelling, with ACP among the workshop topics for 65 mental health workers (Taylor et al. Reference Taylor, Swetenham and Myhill2012). Knowledge gains were reported, although not quantified or specific to ACP.
We were unable to find any studies reporting the development of and sharing plain-language resources to educate mental health consumers and carers about ACP. Although there are overlapping education and training needs to support ACP in mental health (Jerwood et al. Reference Jerwood, Phimister and Ward2018; Wand et al. Reference Wand, Karageorge and Zeng2024, Reference Wand, Karageorge and Zeng2025) and general population contexts (Poveda-Moral et al. Reference Poveda-Moral, Falco-Pegueroles and Ballesteros-Silva2021), there are particular considerations and challenges to implementation which emerge with serious mental illness necessitating population-specific resources and training for mental health clinicians.
Limitations
Although clinician feedback was sought regarding the stakeholder information sheets and incorporated into the final versions, consumers and carers were not asked to formally evaluate these documents. This was largely due to time pressure completing the study but is important to ensure that the resources are understandable and useful for consumers and carers. Similarly, the training films were not evaluated by consumers, although they were primarily designed to assist clinicians in practical aspects of engaging consumers in ACP.
The content of the education resources was informed by interviews with consumers with a psychotic illness and their carers and so may not be generalizable to older adults with other mental illnesses. Although arguably the identified complexity conferred by psychotic symptoms in relation to consumer education, clinician concerns about causing distress and the challenges of evaluation of capacity in ACP, are relevant to mental health consumers more broadly (McNamara et al. Reference McNamara, Same and Rosenwax2018; Wand et al. Reference Wand, Karageorge and Zeng2025). While our resources are available in four languages, funding constraints limited expansion to other languages. Access to appropriate resources is only one factor which may support ACP in culturally and linguistically diverse communities. We did not explore specific cultural factors impacting ACP, care settings and physical environments and particular skills needed in clinicians and interpreters; all noted to be important in implementation of ACP with ethnically diverse people with cancer (Chauhan et al. Reference Chauhan, Sansom-Daly and Manias2025). Finally, use of these new evidence-informed resources has not yet been formally tested within clinician training on ACP. However, a knowledge translation study is underway comprising interactive education sessions (combining didactic information with application to clinical practice), supported by our training resources and strategies for organizational change.
Solving the problem of ACP implementation with people with mental illness is complex. This study used thematic analysis of stakeholder voices to elucidate the barriers to ACP which were then used to determine what is needed to address the underlying issues, namely, education and training. The resources address some barriers to engagement in ACP and are designed as supporting tools to be used in combination with other strategies such as organizational change (addressing the theme of practical and process issues) and a comprehensive dedicated educational intervention. Our participants did not highlight other potentially useful strategies such as public health campaigns (Seymour Reference Seymour2018), policy work (for example, https://www.health.nsw.gov.au/patients/acp/Publications/final-report-acp-action-plan.pdf), financial support or training offensives targeting clinicians, which warrant exploration.
In conclusion, advance care planning is uncommon in older people with mental illness despite high rates of physical morbidity and premature mortality (Firth et al. Reference Firth, Siddiqi and Koyanagi2019). Previous qualitative research with older adult consumers and their carers highlighted their expectation ACP would be raised with them if important (Wand et al. Reference Wand, Karageorge and Zeng2025) – but it is not. Mental health clinicians have therapeutic relationships and the trust of consumers which may facilitate ACP (Wand et al. Reference Wand, Karageorge and Zeng2025) and the opportunity to facilitate links to general medical care (Foti et al. Reference Foti, Bartels and Merriman2005), but do not currently engage in ACP for complex reasons (Wand et al. Reference Wand, Karageorge and Zeng2024). Key strengths of this study were turning these empirically derived stakeholder barriers into specific actions to facilitate ACP, by creating resources bespoke to different stakeholder needs to support implementation at practical and governance levels in public mental health settings. The resources are one component of what will need to be a multipronged strategy to improve engagement in ACP in this population. To have an impact, dedicated educational interventions for clinicians must be accompanied by organizational change, such as embedded processes to support, maintain and monitor implementation and leadership support (Wand et al. Reference Wand, Karageorge and Zeng2024), identified as core components of effective educational interventions in other aspects of healthcare (Lee et al. Reference Lee, Fisher and Wand2020). Improving consumer and carer awareness and knowledge about ACP should also be a focus (Chen et al. Reference Chen, Chu and Chang2025; Wand et al. Reference Wand, Karageorge and Zeng2025), promoting empowerment and advocacy respectively.
The next step is to evaluate the effectiveness of these resources in clinical practice with mental health consumers and carers as part of a more comprehensive educational intervention training clinicians in ACP. Improving rates of ACP in this cohort is an achievable and measurable outcome, addressing a core human right of equitable access to self-determination and facilitation of quality care towards the end of life (Peisah et al. Reference Peisah, Sampson and Rabheru2021).
Acknowledgments
The authors thank Dr Ming Yong for his contribution to writing the film scripts.
Funding
This work was supported by the Moyira Elizabeth Vine Fund for Research into Schizophrenia Program.
Competing interests
The authors declare none.
Open access
