A Lived Experience—Informed Research Agenda for the Improvement of Care and Services for Individuals with Severe Mental Health Challenges

1. Introduction

A person’s mental health is shaped by various social, economic, and physical environments that operate at different stages of life. Improving and maintaining one’s mental health therefore requires action to improve the conditions of everyday life [1]. Recent literature has highlighted that people experiencing severe mental health challenges [SMHCs] have several unmet needs that are not directly related to mental health services but which have an impact on their personal recovery [2]. These needs, however, are frequently neglected or misunderstood within a healthcare system that is predominantly structured for episodic care [3]. Mental health services [MHSs] research seeks to address these unmet needs and enhance service quality. To design care and services that are truly person-centered, it is imperative that service users are actively engaged in their development. However, research in mental health and mental health services remains heavily influenced by a ‘reductionist biomedical model,’ which continues to dominate clinical practice, policy, research agendas, and investment in mental health globally [4]. This research aims to amplify the voices of mental health service users and to illustrate that mental health services research must also be approached from the perspective of lived experience.

Australia’s mental health system encompasses a diverse array of clinical and non-clinical services [5]. Public MHSs include area-based clinical MHSs, which comprises both inpatient and community MHSs. In addition, there are mental health community support services which are non-clinical services provided by non-governmental organizations, as well as private MHSs (Psychiatrists and psychologists) and the National Disability Insurance Scheme (NDIS). Mental Health Community Support Services also operate adult prevention and recovery care (PARC) services which are community-based, short-term supported residential services for people experiencing mental health problems, but who do not need acute care. These services are staffed by visiting mental health nurses and doctors.

The primary stakeholders in the design and implementation of contemporary mental health services (MHSs) have traditionally been policymakers and mental health professionals within both practice and academia [6]. While mental health professionals have been reported to be particularly concerned with ‘risk,’ specifically the risk of violence, policymakers are primarily focused on the distribution of resources [6]. Service users have emerged as a third influential group, seeking to shape the delivery of MHSs based on their ‘expertise by experience’ [6]. Various important reports have shown that current MHSs have several shortcomings including challenges in accessibility, a tendency to ‘operate in crisis’ with insufficient emphasis on personal recovery, fragmented services that fail to support caregivers and families, inadequate funding, neglect, and issues of affordability [7,8].

Despite the implementation of Australia’s 1992 National Mental Health Strategy, which focused on deinstitutionalization, community mental health, better accountability and the delivery of human rights for people with a mental illness and carers [9] there has been limited evidence of improved service quality [10]. Currently, accreditation and policy guidelines require services to follow standard protocols, with professionals needing to complete significant amounts of paperwork, limiting their time to meaningfully engage with consumers. Conversely, service users express frustration with challenges that include the insufficient involvement of family members in their care and the emphasis of services on reaching a diagnosis rather than addressing the various factors that significantly impact their condition and contribute to its persistence [11].

1.1. Service User Involvement in MHSs Research

It has been argued that mental health service design and implementation is at the threshold of a paradigm shift that is similar to that of deinstitutionalization [12], with the voices of services users and carers being given equal importance in their design. As an extension, service users have also been involved in MHSs research. Service user involvement in MHSs research has in large part been due to the contributions of the recovery movement where individuals with a psychiatric diagnosis are treated as persons with hopes and aspirations, dignity and autonomy rather than as cases who have no capacity to understand their illness [13]. Meaningfully involving service users in research that impacts them, not only benefits them by enabling empowerment and facilitating recovery but also improves the quality of research in terms of its validity and usefulness [13].

The level of involvement of service users in MHSs research has been gradually increasing. Initially, studies focused on service users’ experiences with mental health care [14]. More recently, methods of co-design and co-production of research have been documented [15] and such co-produced research has been shown to enhance service users’ experiences of mental health care [16]. Service user leadership in research has provided insights into how systems could better support and be accountable to those with a lived experience of mental health challenges [17]. These leadership roles also offer opportunities to leverage perspectives and experiences derived from lived experiences [17]. However, despite these advancements, issues of tokenism and power imbalances persist in research conducted in collaboration with service users [18].

1.2. A Conceptual Model

Tansella and Thornicroft offer a conceptual model (matrix model) to guide the process of MHSs reform [19]. The model has two dimensions – a geographical dimension which includes country, local and service user levels and a temporal dimension which includes input, process and outcome phases [19], all of which intersect with each other. Their research focuses on the service user level at the input, process and outcome phases. However, Tansella and Thornicroft describe this level mostly from the perspective of the psychiatrist or mental health clinician. It is possible that there are aspects of care that are problematic for service users, but which psychiatrists and other mental health clinicians do not recognise because they are part of a system built through education and organizational protocols that mostly view mental health care through a clinical lens.

1.3. Rationale for the Study

There is a growing realization of a commonly occurring mismatch between research questions that are important to investigators, and those that are relevant to service users [20]. Views of service users are typically given the lowest priority. Establishing research priorities of service users is an opportunity to achieve equity in allocating resources so that policy makers and health research funders are made aware of the issues that matter most to people who are affected by research. The James Lind Alliance [21] and the World Health Organization’s guidance for research priority setting [22] are examples of such initiatives. Literature on setting a research agenda in the field of mental health from the perspectives of individuals with a lived experience is also beginning to emerge [23]. A research agenda has been defined as a ‘problem-solving strategic framework’ that sets research questions and hypotheses that should be prioritised. These questions are typically informed by knowledge gaps, with the goal of influencing a field of study [24].

Since no previous studies explored this topic by following the biography of the service user, this study aimed to propose an agenda for MHSs research derived from the experiences of service users. Service user experiences of their illness journey related to MHSs that are important to them are not easily forgotten and topics for future research and subsequent areas for future improvement can be ascertained from these experiences.

2. Materials and Methods

2.1. Setting and Context

There are growing calls internationally for more meaningful inclusion of lived experience perspectives and genuine co-design of research in all health fields, but particularly within mental health and mental health services. There are also ongoing demands for reform of Australian mental health services that is informed by lived experience [25]. This study was conducted within this context as a collaboration between mental health researchers and mental health/lived experience researchers.

2.2. Co-Design

This study was co-designed and conducted with individuals with a lived experience of SMHCs. A co-design approach refers to the involvement of consumers in the design of products or services to better serve their intended purpose [26]. This research was led by a senior mental health services researcher and co-designed with two individuals who have a Lived experience of mental health challenges. Co-investigator, SL is a lived experience research professor whose work focuses on systems of mental health care, the culture of service provision, implementation of services and service user’s experiences of care. SL is also the Chair of Lived Experience Australia. Co-investigator, AB is a lived experience worker at a regional mental health service and has co-authored previous research in this field. The concept for this work emerged during discussions between the lead author and co-author SL. While SL provided guidance on the methodology, both co-investigators assisted the lead author in data analysis to ensure that participant responses were understood and represented as accurately as possible. In addition, draft results were reviewed by a separate lived experience advisory group. The details of this process and its outcomes are described later.

2.3. Study Design

This was a qualitative study informed by biographical research [27], and interpretive phenomenological analysis [IPA] [28] Biographical research aims to classify and explain social processes through biographies [27]. This methodology utilizes life history interviews as the primary data collection instrument [29]. Interviewees are asked to tell their story with no other specific instructions. These interviews are therefore designed to generate ‘a spontaneous autobiographical narration which is not structured by questions posed by the interviewer but by the narrator’s structures of relevance’ [30]. While the life history is being narrated, the interviewer does not interrupt. Instead, they use non-verbal and para-linguistic expressions to demonstrate interest and attention [30]. Only after the narrator completes their story does the interviewer ask questions comprising the second part of the interview [30]. These questions are based on reconstructions of the critical junctures in their life course. The answers to these questions reflected participants’ lived experience and their contexts. Analysis of these lived experience accounts was informed by IPA where the researcher interpreted the meanings and context of the participant’s experience to formulate research questions [28].

2.4. Participants and Data Collection

Determining a sample size for this study was challenging since it was clear that participant experiences would be as many and varied as there are people with mental health challenges. Therefore, setting a sample size to include all types of experiences was not practical. Furthermore, the focus of this study was not to develop theory but to highlight the reality that topics for research also needed to be informed by service user needs and experiences.

Participants were recruited by Lived Experience Australia, (a voluntary organisation that advocates for better MHSs using the lived experiences of those who have accessed them) from their national ‘friends’ network of several hundred members who are consumers or carers or both. An advertisement to participate was included in their newsletters and social media. Those who were interested to participate in the study, contacted the first author who provided them with the explanatory statement and consent forms. Since this study was advertised in a newsletter subscribed to by hundreds of consumers and carers, it was only possible to identify those who responded to the call. No participant dropped out after submitting their signed consent form. Mutually convenient interview times and dates were decided on receipt of signed consent forms.

Once the interviewer (lead author) established rapport with general conversation, and confirmed their ability to participate in the interview, participants were asked to tell their story from the time they perceived that they began to experience distress and develop signs of mental health problems. Throughout the narrative, the interviewer noted down, a posteriori, critical junctures in their story where care and services were either missing or could have been improved. This required an understanding of service user needs and MHS design. Once the narration was complete, the interviewer drew their attention to each critical juncture identified during the narration and asked them three questions given below:

At that point in time,

• what, if anything, do you think you would have liked to know?
• what if anything would you have liked others to know?
• what opportunities if any, would you have liked for you to be able to make your own decisions (personal agency)?

All three questions were asked one after another, giving the participant the opportunity to answer as many as they felt comfortable or able to. For example, once a participant finished narrating their story, the interviewer drew attention to a critical juncture in their experience where they said, ‘I spent weeks telling the psychologist my story but no help…’, and asked them to reflect on the questions above. The participant responded by stating, ‘Psychologists need to be trauma informed. They do not necessarily understand suffering and poverty…’. Once all key experiences were addressed, participants were asked if they had anything additional to convey. Any responses were recorded. Interviews lasted between 60 and 90 minutes. Interviews were audio recorded. Participants received AUD 40 in compensation for their time.

2.5. Data Analysis

Although the entire interview was audio-recorded. Only participant’s responses to the questions were transcribed and analysed. These transcripts were anonymized and treated as follows. Informed by IPA , the first author labelled participant responses as an ‘experience’ or ‘message’ to be conveyed or both. Responses were labelled as an ‘experience’ when it related to the participant’s experience. Responses were labelled as a ‘message’, when it was directed outward and related to how necessary services were missing or existing services could be improved. These experiences and messages were subjected to inductive thematic analysis. They were initially coded by the first author. The two co- authors with a lived experience (SL and AB) independently reviewed and modified the coded data as needed.

Codes were inductively combined to form categories. Once all data were coded, they were deductively classified into three pre-determined themes 1. Access to care and early detection, 2. Care and treatment and 3. Continuity of care. These themes were aligned to service user experiences with MHSs, that typically fall under the broad areas of access to care [31], the actual delivery of health care and treatment [32] and continuity of care [33] rather than clinical perspectives and presentations [34]. From the perspective of the service user, delivery of care is experienced as care and treatment. Each investigator then contributed research questions to each category. These research questions formed the research agenda for MHSs research.

Draft results were then presented for review to a separate lived experience advisory group consisting of six individuals from the national lived experience representative panel of Lived Experience Australia. Of the six group members who reviewed the results, four returned their comments and suggestions by email. A group meeting was conducted on the 20th of December 2024 to discuss the results. Advisory group members made some revisions to the existing questions as well as added further questions. Contributions from Advisory group members were denoted as AG-number (e.g., AG-3). Advisory group members received an honorarium of AUD 60 for their time (reading and meeting). The authors assert 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 2013..

3. Results

Twenty-one participants were interviewed for the study. The majority of participants (N=14, 67%) were female and aged between 40 and 49 (N= 9, 43%). Nine participants, (43%) had a graduate qualification and were involved in an occupation related to their lived experience of mental health challenges. Seventeen (81%) participants did not have a carer. Ten (48%) were hospitalized for their mental illness at least once and 13 (62%) had experienced mental health challenges for more than 20 years. Further details are given in Table 1. Members of the lived experience advisory group had lived experience as service users, family carers, or both and were involved in systemic advocacy.

A brief description of the three themes of Access to care and early detection, Care and treatment and continuity of care is given below. Research questions that were generated from the experiences and messages of participants are given in Table 2, Table 3 and Table 4. Quotes of experiences and messages within each category are given in the supplementary tables.

3.1. Access to Care and Early Detection

The theme, ‘Access to care and early detection,’ encompasses eight categories and pertains to barriers in seeking assistance, missed opportunities for early identification, and inadequately designed services. Research questions and the categories they relate to within this theme are listed in Table 2. Within this theme, participant experiences and narratives indicate that stigma continues to be a substantial obstacle to accessing mental health services (MHSs). Participants also identified factors contributing to mental health challenges in adulthood, such as childhood sexual abuse and the absence of screening and detection of mental health issues during school years. The process of seeking assistance during a mental health crisis emerged as a critical topic, involving both police procedures during crisis assessment and treatment, as well as the emergency department’s (ED) procedures when engaging with individuals in crisis. While the former caused considerable distress to service users, the latter were described as insensitive and inappropriate. Participants noted that mental health issues often impacted families through vicarious trauma, stress, career disruptions, and consequent financial challenges, while family MHSs are scarce. Similarly, long waiting times for service access and the strategies employed by individuals to overcome these barriers were identified as areas warranting further research. Topics related to family caregivers also emerged, including the lack of information on the impacts of becoming a caregiver and the insufficient support available once they assumed this role. Supplementary Table A provides quotes related to experiences and messages for each category under this theme.

3.2. Care and Treatment

The theme, ‘Care and treatment’ included fifteen categories that related to quality of care delivered by the different elements of the mental health system. Research questions related to each of the categories are listed in Table 3. In this theme, participants highlighted the pronounced disparities in the quality of care between private and public MHSs and emphasized the necessity for some degree of resemblance and comparability. They also discussed the challenges in locating clinicians, particularly psychologists, with whom they felt understood, safe, and confident to work with. This was deemed essential due to the considerable variation in approach and focus among psychologists in private practice, resulting in service users often needing to consult multiple practitioners before finding one with whom they felt comfortable.

Participants further reported on certain deficiencies in the structure of psychological services and the factors that hindered positive outcomes. Some expressed their reluctance to rely on medication and the distress experienced when staff insisted on such treatments rather than exploring alternatives. Participants also recounted experiences and conveyed messages related to treatment in psychiatric wards, including instances of inhumane treatment by staff. They suggested that simple adjustments, such as providing an orientation to the ward layout and routine, could significantly enhance the inpatient experience.

Additionally, they noted that healthcare providers frequently lacked awareness of the impacts of trauma on their clients and the methods to provide care for those who had endured it, underscoring the need for enhanced training on the subject. The necessity for assistance from a psychosocial advocate during a mental health crisis was expressed by participants to help service users avoid making detrimental decisions while maintaining their personal agency. They also underscored the importance of incorporating peer support workers into the care provided by MHSs.

The lack of service integration and the need for care coordination were other topics highlighted by participants, who also noted the perceived lack of knowledge regarding mental health issues and services among general practitioners, psychologists, emergency services, and the police. Supplementary Table B provides quotes of experiences and messages for each category under this theme.

3.3. Continuity of Care

The theme, ‘Continuity of care’ included six categories that related to care following discharge and interactions with other agencies. The related research questions are listed in Table 4. Within this theme, participants recounted experiences and conveyed messages regarding the unmet need for ongoing support following the discharge of service users from hospitals. This included the necessity for enhanced mental health support for men, the needs of caregivers transitioning from full-time employment to a full-time caregiving role, and their subsequent transition back to regular life. Participants also detailed their interactions with Centrelink staff (Centrelink is the Australian social welfare agency), the challenges associated with securing housing, and the support provided by the NDIS for individuals with SMHCs. Supplementary Table C provides quotes of experiences and messages for each category under this theme.

4. Discussion

This study is unique in that it sought to develop a research agenda for the improvement of services for persons with SMHCs from the lived experiences of service users. Previous studies have utilized other methods such as World Café [35], and Leximancer analysis [36]. These and other studies have sought to identify lived experience priorities for mental health research. This study was different in that it approached the topic from a systems perspective by following participants’ mental health journeys and identifying critical junctures during those journeys where services were either missing or were of an undesirable quality. In doing so, it narrowed the focus of attention within what is an enormous field. The results of this study draw attention to research topics that fall into three categories. 1. Topics that might not have been considered previously 2. Topics that have already been identified but where research is still emerging and 3. Topics that have attracted extensive research, the findings of which, have not been widely translated into practice.

4.1. New Research Topics

There are different types of psychological services and a wide variation in how psychological services are delivered. There are also some resources to help individuals find a psychologist to suit their needs [37]. However, unlike seeking help from GPs for physical ailments, choosing the right psychologist can be challenging because ‘People are not going to tell their story unless they feel safe and confident.’ Furthermore, the impacts of ‘retelling the story’, the financial consequences of getting new referrals and paying new initial consult fees, as well as the potential to use up their ten subsidized sessions on their mental health care plan with little therapeutic progress needs exploration. There are calls for more widespread adoption of measurement-based care (MBC) which involves the evaluation of service user symptoms before and during psychological therapy in order to monitor change [38]. The compelling recognition of personal recovery as a goal of treatment by MHSs means that service user-reported outcome measures focusing on personal recovery need to be introduced as well [39].

New research is also needed on topics such as the impacts of interactions with staff in the psychiatry ward; the need for psychosocial advocacy during the time of mental health crisis; the role of child protection agencies in maternal mental health care; post-discharge care and support; and service user interactions with Centrelink. While the topic of waiting lists is more related to demand and supply, the various tactics individuals use to gain entry to an almost inaccessible public mental health service, might be worth exploring. Similarly, research could focus on improvement in public MHSs using lessons learnt from the private sector.

4.2. Emerging Research Topics

While the long term adverse mental health outcomes of child sexual abuse and adverse childhood events have been documented [40], further research is needed to improve early detection strategies and devise methods to mitigate medium to long term mental health impacts. Mental health crisis assessment and treatment was another common topic identified by participants. Although research in this area is emerging [41], the focus of the research is mostly clinical in nature and does not consider lived experience perspectives. As such, research into more nuanced crisis assessment and treatment procedures is needed. Mental health care in the Emergency department has also attracted research. For example, alternatives to the ED for persons in a mental health crisis have been proposed [42].

Improving care in psychiatry wards is also an emerging topic of research. The ‘Safewards’ model first developed in the UK provides direction for research in this area although studies report that service user perspectives on the model are not yet fully understood [43]. Another emerging area of research is men’s mental health [44] where further studies are required on men’s mental health service needs. Other emerging research topics include family mental health , client choice in medication type , mental health training programs for non-mental health professionals and housing for persons with mental health problems .

4.3. Well Researched Topics

Topics identified by participants that have already been extensively researched include mental health stigma and discrimination related to mental health and mental health care [45]. However, implementing behaviour change to reduce stigma continues to be a distant dream. Similarly, carer needs and support have attracted extensive research. Despite the existence of best practice guidelines on carer engagement [46] and voluntary organisations dedicated to Carer needs [47], MHSs are yet to fully appreciate the value of carers in the care of individuals with SMHCs. School mental health is another widely researched topic, [48], although, on-the-ground services appear to be inadequate. The need for lived experience workforce within MHSs is widely acknowledged with the publication of National Lived Experience Workforce Guidelines [25]. Nonetheless, there continues to be barriers to the acceptance of their role and the professionalism that should be accorded to it [49]. Integration of MHSs has been a topic of research for several decades and barriers to integration have been reported previously [50]. However, overcoming barriers to integration requires systems-level change.

An important finding from this study is that topics that are important to people with SMHCs exceed far beyond the scope of MHSs as we know them, thereby underscoring the need for a broader, more holistic approach to care that includes community inclusion and connection. The impacts of SMHCs appear to be less well understood or perhaps attract less attention than those of severe and chronic physical challenges. This study therefore upholds the need for a paradigm shift in approach from “What’s the matter with you?” to “What matters to you” [51]. The findings of this study also reiterate the need for a person-centred approach where all relevant services are aware and trained to provide appropriate care. Finally, this study has re-emphasized the importance of a public mental health strategy that promotes positive mental health and wellbeing, addresses challenges such as stigmatization of mental health problems, and renews focus on families, schools and workplaces [52].

The findings demonstrate that when MHSs research is approached from the service user perspective, the focus shifts from the input, process and outcome phases of the service as described by Tansella and Thornicroft [19] to person-centred care related to service access, the care itself and its continuity.

The questions generated from this study are crucial for identifying and subsequently addressing existing gaps in implementation science that stem from the neglect of lived experience perspectives during the initial stages of research design. This oversight significantly affects the successful translation of research outcomes into practical applications, as well as the efficient utilization of limited resources to ensure maximum impact on service users and carers.

Furthermore, these questions may inform local and national research strategies by highlighting, from a lived experience perspective, key issues relevant to mental health service planning, provision, and evaluation that are important to individuals, families, and communities. The topics identified could serve as a foundational starting point for more detailed consultations and co-design efforts with relevant stakeholders. These would include considerations of their applicability to local contexts, needs, and priorities that require attention.

This study has some limitations. The research questions generated from participant experiences and messages are by no means comprehensive, but rather a sample to provide direction for future research. Participants were mostly middle-aged, females who were connected to advocacy networks. Indigenous, culturally and linguistically diverse and other disengaged groups were missed. Including these groups would have required specifically targeted recruitment strategies. There were also fewer male participants. Men’s mental health service needs might be very different from that of females. The predominance of qualitative questions is due to topics being mostly exploratory but is also a reflection of the expertise of the research team. Readers are encouraged to develop their own questions based on their interest, expertise, type of setting and service needs of the population they work with. Although further analysis of themes and experiences would have enriched the findings, this was avoided for the sake of brevity. Future research in this field may need to explore views of disadvantaged communities in different settings followed by consensus endeavors such as Delphi studies.

5. Conclusions

This study proposed a research agenda derived from the experiences of persons with SMHCs. Research questions were developed for categories allocated to the three main themes of Access to care and early detection, Care and treatment and Continuity of care. Topics identified in this study were either insufficiently researched, emergent or were well researched with insufficient translation into practice. The findings of this study drew attention to topics that were specifically of importance to service users and included those that were beyond the realm of MHSs. The results demonstrate that optimal care for persons with SMHCs requires a system-wide approach. Research questions proposed are aimed to set the foundation on which further research can be designed based on local need, and expertise.