Background

People with severe mental disorders experience low quality of life and impaired health compared to the healthy population (Evans et al., 2007). Severe mental illness is associated with impaired functioning and significantly low or even insufficient self-care skills (Holmberg & Kane, 1999). Studies show that people with chronic severe mental disorders have high rates of mortality and morbidity compared to the general population (Sokal et al., 2004; Miller et al., 2006; Kisely et al., 2013; Luciano et al., 2022). The increased morbidity and mortality of people with severe mental disorders are directly linked to the lifestyle and health behaviors of this population group, with smoking, substance use, poor diet, lack of exercise, unsafe sex practices, and high-risk behaviors (Brown et al., 1999; Lambert et al., 2003; Scott & Happell, 2011). Furthermore, people diagnosed with severe mental disorders show insufficient knowledge about health issues (Ciftci et al., 2015). This is an additional barrier to maintaining and improving their health and quality of life while reinforcing the need to design and implement holistic health promotion and health education interventions in this population group. Several health promotion programs for people with severe mental disorders are identified in the literature. For example, on oral hygiene (Almomani et al., 2009; Khokhar et al., 2016; Kuo et al., 2020; Pindobilowo et al., 2022), nutrition and obesity (Lloyd & Sullivan, 2003; Van et al., 2010; Naslund et al., 2017; Kirschner et al., 2022), as well as sexual health (Hughes et al., 2019, 2020). The majority of interventions are methologically designed based on the subjective assessments of health professionals based on observed physical symptoms without taking into account the possible needs of individuals (Van Hasselt et al., 2015). Studies highlight the importance of supporting person-centered approaches to health promotion, which will take into account individual preferences for learning and developing new skills in people with chronic mental illness (Jormfeldt et al., 2012; Tee and Üzar Özçetin, 2016). Individuals themselves have a need to be more participative in activities that promote their health, while showing a low preference for activities based on lectures and leaflets (Kemp et al., 2015).

An approach that ensures a participatory aspect is that of co-production. Co-production is defined as the provision of services in an equal and reciprocal relationship among health professionals, service users, families, and the wider community (Boyle & Harris, 2009, Needham et al., 2009, NEF, 2014, Realpe & Wallace, 2010). The process of co-production does not only refer to the provision but includes all stages, from the design and production to the evaluation and continuous improvement of services (Boyle et al., 2006). It is about creating a social capital based on mutual relationships that create trust, and peer support. The expertise of service users is an investment in this capital (Cahn, 2000). Co-production is based on some fundamental principles: the recognition of individuals as active participants with valuable experiences and the exploitation of their existing potential, the principle of exchange and reciprocity, support through peers, the elimination of discrimination, and the principle of facilitating individuals’ active engagement versus the passive delivery of services to them (Slay & Stephens, 2013; Mersey Care NHS Foundation Trust, 2015; Sakellari et al., 2022).

There are no studies to our knowledge that assess the subjective perceptions of individuals regarding their health promotion needs (Van Hasselt et al., 2015). Therefore, the present study aims to examine and assess the health promotion need among people with severe mental disorders, receiving services from mental health community settings. Secondly, it was aimed to explore their perceptions regarding the concept of co-production. The research questions are: 1) what are the needs of health promotion among people with severe mental disorders? 2) how do people with severe mental disorders perceive co-production in health promotion?

Methods

A qualitative study was conducted in the first semester of 2023 in mental health community settings in Attica, Greece. The Consolidated criteria for Reporting Qualitative Research (Tong et al., 2007) were used to report our study.

Participants

Service users (aged ≥ 18 years) participated in the current study. These included adults with severe mental disorders and informal carers receiving services from community mental health settings (i.e. day centers, community residential care settings, support counseling, psycho-education, etc.). The study excluded those individuals who did not have the right to make decisions and were under legal guardianship. Study participants were recruited using a convenience sampling method (Sedgwick, 2013; Stratton, 2021). Initially, mental health professionals of the settings who cooperated for the needs of the current research, after being briefed by the researchers, informed orally people receiving services about the content, objectives, and procedures of the study, during face to face meetings. The information was also provided in written by a leaflet.

A total of 18 mental health services users (adults with severe mental disorders and informal carers) participated in the study, 10 of them were men and 8 were women. The average age was 52 years, with an average education level of secondary education. The majority of participants (n = 13) had an experience of receiving mental health services exceeding 10 years. Most (n = 15) live in their residence with a close relative (parents or siblings) and only three participants live in community residential care settings.

Data Collection

Two focus groups were conducted with 8–10 participants. Through focus groups, perceptions and opinions about a subject under study are considered and an understanding of individual issues is gained from the perspective of the participants themselves. Focus groups do not require participants to be named, but rather to provide their opinion through their status (e.g. service user) (Krueger & Casey, 2000). Each focus group lasted approximately two hours. At the beginning, the researcher-facilitator (KT/PhD student) of the groups, who is also an experienced mental health professional, explained again the study purposes and the process of focus group discussion, pointing out the confidentiality, and the possibility for any of the participants to leave the group, without giving any explanation. Initially, socio-demographic information was collected (gender, age, residence, length of experience since receiving mental health services, etc.). A semi-structured interview guide with open-ended questions was developed by the interdisciplinary research team (authors of this paper) whose members have research and clinical experience. The guide was evaluated by mental health professionals and service users to ensure understanding of the questions and its validation.

The purpose of the interview guide is to direct and stimulate the group discussion about the research topic, as well as to ensure that all the desired information about the research questions is sought (McLafferty, 2004). Its content was divided into three topic sections of questions. The first section included questions about health promotion and the needs that such a program would address (e.g. what do you think health promotion is? What needs a health promotion and health education programme should address?). In the second part of the guide there were questions concerning the concept of co-production (e.g. what do you think co-production is? Do you have a relevant example, experience or good practice in mind?), and finally combination questions regarding the participants' perceptions about a health promotion program based on co-production approach (e.g. how do you think a health promotion program with a co-production approach should be? How do you perceive your own role in such a program?).

Data Analysis

The content of the focus groups interviews was recorded using a digital voice recorder and was transcribed verbatim. No additional data were found after the second focus group when saturation was reached. As also literature supports, 80% of all topics could be identified in two to three focus groups (Guest et al., 2017). The data was analyzed using content analysis without the use of any software. It was conducted by two members of the research team (KT and ES) who have experience in qualitative research. In order to ensure credibility a second researcher conducted data analysis and in any case enhanced by including a second researcher in the data analysis and a multidisciplinary group was involved in the study. The most widely used approach to thematic analysis described by Braun and Clark was used (Braun & Clarke, 2006). The researchers read the data several times to become familiar with it, and some initial codes were generated based on quotes related to the research questions. The codes were then grouped and the themes and sub-themes that emerged were re-examined if they were common enough and coherent, but also if they were different enough from each other to justify their separation (Galanis, 2018; Kiger & Varpio, 2020). The two researchers (KT and ES) independently coded the transcripts to verify the consistency of the framework (Gale et al., 2013). An example of how themes were emerged is presented in Table 1.

Table 1 Example of how themes emerged
Full size table

Ethical Considerations

The study was conducted after getting approval from the Research Ethics Committee of the University of West Attica (47060/13–05-2022). Participants were asked to sign a consent form after oral and written information about the study, its purpose, and procedures emphasizing their right to withdraw at any time, without any explanation or consequences. All potential participants were individuals who were not under legal guardianship and their capacity to consent was confirmed by the mental health professionals who provide services to them. In addition, they had a recent psychiatric assessment. The researchers ensured that if a noticeable change in the mental state of a person was detected, during the focus groups, the priority was to be referred confidentially to the relevant mental health professionals in order to receive support and care. While transcribing the interviews, personal information that could reveal identity was removed.

Results

Health Promotion Needs

Regarding the health promotion needs, five main themes emerged from the thematic analysis: 1) psycho-education, 2) rights, 3) settings and services, 4) community education, and 5) physical health.

  1. 1.

    Psycho-Education.

    “I can think of a program that informs me about my illness and the symptoms I'm dealing with”

    Participants expressed their needs of health promotion as psycho-education, including counseling, medication, self-care and mental health promotion For example, they said:

    “To be able to know the medicines I need to take and how they help me”

    “What steps can I take to have better mental health, beyond my illness”

    “Advice on what I think about and deal with daily in my life”

  1. 2.

    Rights.

    “to know how I can refuse involuntary hospitalization”

    Participants included their rights as part of their health promotion needs and they focused on health care and employment. In particular, they expressed the need to be informed about their rights when they need hospitalization or when they are admitted to the hospital involuntarily. For employment, service users are interested in getting to know their rights in the workplace, how they should be treated by employers, and what kind of benefits they are entitled to when they work. Some examples are the following:

    “To be informed about my rights in a hospital”

    “To find out how I can be employed, what rights I have in terms of work based on the condition”

  1. 3.

    Settings and Services.

    “There should be access to the settings, to the facilities so that someone can find relief”

    Participants refer to settings and services as part of health promotion, focusing on access to and information about them. Specifically, they mention the need to be informed about the available services that someone can receive care and support. As participants said:

    “Information and access are very important dimensions. There is still a lack of information about the existing settings after the diagnosis”

  1. 4.

    Community Education.

    “Education in the community, going to schools whether service users or professionals, and talking to the kids and telling them they have a problem so they know what it is”

    Community education is another important issue emerging in relation to health promotion needs, mainly linked to community interventions, schools, and destigmatisation. Stigma sometimes concerns the individual (personal stigma) and sometimes society. During the discussion in the focus groups, there was a strong reference by the participants to the role of schools, either in terms of education for recognizing mental health problems and seeking help, or in terms of understanding mental disorders and attitudes towards people who face some kind of mental disorder.

    “The actions for mental health, e.g. activism and seminars related to mental health issues”

  1. 5.

    Physical Health.

    “Prevention, avoiding harmful factors and what we should be careful not to get sick”

    The individuals are also concerned with their physical health, maintaining and improving it, and do not limit their health promotion needs to manage their mental disorder. They mentioned the need for information about preventive health checks. Most of the participants stated that they are chronic smokers and expressed the need to be educated and supported by a health promotion program to help them quit smoking effectively. Nutrition is another important area where people with severe mental disorders seek support and education, with most expressing difficulty in controlling their weight due to the side effects of certain medications. As participants described:

    “It would be important to talk about smoking, we users smoke a lot”

    “I agree, we need to learn how to eat healthy”

Co-Production Perception

Regarding the concept of co-production, five main themes emerged: 1) equality, 2) collaboration, 3) inclusion, 4) peer support, and 5) feedback.

  1. 1.

    Equality.

    “To be accepted and treated equally by professionals”

    Equality includes acceptance, responsibility, consistency, and honesty as sub-themes. The participants refer quite often to acceptance, identifying it with equality in their relationships both with other people and with mental health professionals, with whom they emphasize that they should have an honest and consistent relationship. Participants explained:

    “I will also raise the issue of responsibility. We will have an important responsibility”

    “A consistent presence helps”

    “Let the relationship be honest”

  1. 2.

    Collaboration.

    “Let users and professionals work and create together”

    Most participants perceived co-production as collaboration between service users and mental health professionals, with frequent references to communication, co-creation, coordination, and co-design as its dimensions. They imagine this cooperation at various levels of organization of services, groups, and interventions. For example:

    “There should be communication with the experts, with the mental health professionals”

    “Collaboration already at the design level, whether it's law, whether it's setting, or whatever”

    “To coordinate groups and workshops together with the professionals”

  1. 3.

    Inclusion.

    “When the user participates in finding a solution, but also in implementing a solution”

    Inclusion is also an important dimension of co-production, with participants emphasizing the importance of their participation in processes and the trust that mental health professionals should place in them. They attach great importance to the inclusion of initiatives as well as the expertise they bring. As participants said:

    “Make many groups where initiative is given to the user”

    “To be able to talk about my experiences”

  1. 4.

    Peer support.

    “To be an example easy and difficult situations. This will help, support others like us”

    Peer support is another dimension frequently mentioned by participants, focusing on encouragement, empowerment, and advice between service users (peers). They believe that support can encourage and motivate them on practical issues of everyday life, through practical examples. Participants said for example:

    “To help with advice on everyday issues”

  1. 5.

    Feedback.

    “To organize settings in the community that provide services with specialists and users together. There should be feedback from the users of these services”

    Finally, feedback is highlighted as part of a co-production process. The individuals should have the opportunity to evaluate the services they receive so that it is understood what really benefits them. This was mentioned and agreed by most of the participants as a necessary procedure that all settings providing services should follow.

    Some examples are the following:

    “Evaluating the groups and activities we attend, what helped us, what we liked, etc.”

Discussion

The present study enabled people experiencing severe mental disorders and receiving services from community settings to express their health promotion needs. The participants in our study initially expressed a need for psycho-education. The majority highlighted the importance of knowing existing settings and services. Although one would expect that this need would have been met, especially among individuals receiving services for more than ten years, as were most of the participants, this did not appear to be the case. In Greece, the evolving but incomplete development, mainly of primary mental health services, their unequal distribution by sector, and their insufficient interconnection are potential causes of the lack of information to seek help not only for people facing a mental disorder but for the entire population (Souliotis et al., 2017; Christodoulou & Kollias, 2019).

There is also a great need to organize community interventions and programs to raise awareness and deal with stigma. Stigma, and particularly self-stigma, is another important barrier to seeking help and accessing mental health services (Schnyder et al., 2017). The stigma against mental illness is not only limited to people who have received a related diagnosis but also exists among health professionals (Porfyri et al., 2022). This was also reported by the participants in the present study, supporting the importance of community education, focusing mainly on the school environment to provide this information to citizens through the education system, starting from an early age. The development of comprehensive awareness programs against stigma remains a challenge in Greece, which is foreseen in the national action plan for mental health 2021–30 (Hellenic Ministry of Health, 2021).

Another very important dimension for the individuals seems to be the knowledge of their rights, linking them to health promotion. The rights of people with severe mental disorders are often violated, especially in hospital settings (Mahdanian et al., 2023; Mezzina et al., 2019). Moreover, this was also touched upon by the participants in the group discussions. To know what are their rights when they need to be treated in a hospital. This need is probably one of the priorities considering the large number of involuntary hospitalizations (admissions to hospitals without the consent of individuals), which even today prevails as a regime in Greece, at a rate that exceeds 50% of total admissions (Papadopoulou et al., 2023; Drakonakis et al., 2022). Advocacy and self-representation have in recent years been the main pursuits of the movements of service users and families, but also among the professionals themselves, which are oriented towards the empowerment of individuals (Christodoulou & Kollias, 2019). It is important to mention that in Greece a special committee has been established to protect the rights of people with mental disorders. A representative of mental health service users’ association participates in the board of directors of this committee (Hellenic Ministry of Health, 2022).

Concerning their physical health, the needs expressed by participants are in line with the content of most health promotion programs designed for people experiencing severe mental disorders. Especially regarding healthy eating, weight control (Naslund, et al, 2017), and smoking cessation (Muliyala and Thirthalli, 2022). In addition, participants of the current study reported that they should be informed and educated about the mental disorder they are experiencing and receive support to motivate them to engage in activities that promote physical health. Similarly, another recent study among mental health professionals on perceptions of physical activity provision for mental health service users found that mental health professionals prioritize medication and psychological interventions (Scoles et al., 2023). Moreover, improving mental health is a common facilitating factor for individuals' participation in physical health promotion activities (Mawer et al., 2022).

In regards to how co-production is perceived by the participants of the current study, they focused on the inclusion of their opinions and the possibility to express initiatives freely. They also rate the importance of the experiences they have formed either from the disease they are dealing with or from the services they have received. We know that the assessment of health promotion needs, based on the opinion of individuals themselves and not on the subjective perception of mental health professionals, is incomplete (Van Hasselt et al., 2015). Although expertise is a valuable methodological tool for peer support, as mentioned by participants, it is not adopted in everyday rehabilitation practice. (Oborn et al., 2019; Rose & Kalathil, 2019). Mental health professionals approach service users as experts who only know how to help the person, maintaining paternalism (Thornicroft & Slade, 2002). Despite the significant achievements of psychiatric reform in Greece to improve mental health services, the active participation of individuals in decisions about the services they receive has not been consistently adopted. (Chondros et al., 2018; Hellenic Ministry of Health, 2022).

Respect and inclusion of opinion means equality, as reported by the participants. This finding closely aligns with the principles of the co-production approach. Users and professionals act as equal partners, whose views contribute to the design of services (Sakellari et al, 2022; Realpe & Wallace, 2010). In addition, the participants were not only satisfied with the possibility to express and take into account any of their opinions but also to be able to evaluate the services they receive which should be as part of the practices in all mental health settings. This is a fundamental condition of a coproduction approach. Service users’ feedback is a necessity for the objective evaluation of services (Sakellari et al., 2022).

Limitations

Despite the study provides important information about the health promotion needs among people with severe mental disorders expressed by the individuals themselves, however, some limitations need to be considered. Although the total number of participants was limited due to the use of a qualitative approach, this has been sufficient in terms of conducting focus groups (Cortini et al., 2019). In any case, data saturation was reached (Hennink et al., 2019). Member checks were not performed. However, this was decided by the research team taking into account the difficulties of the individuals in order to avoid confusion and the possibility of modifying the initial answers. Triangulation was not done. Moreover, study participants receive services exclusively from community settings in Attica, which is a purely urban area of the capital, Greece. Hence, more studies need to be conducted on national wide to representatively consider the needs of people with severe mental disorders who live and receive services in rural areas.

Conclusion

The current study revealed that people with severe mental disorders express the need for psycho-education, knowledge of their rights, information about existing community settings and the services they can receive, education of the community to deal with stigma, as well as counseling for improvement and maintenance of their physical health. They perceive co-production as an equal collaborative relationship with mental health professionals that includes their views and initiatives regarding the services they receive, contributing through their experience and providing feedback.

Although the current study collected and analyzed data among adults with severe mental disorders and informal carers not separately, further research can be done in assessing health promotion needs separately in order to draw conclusions for these two groups.

The findings of this study provide useful insights that could be used to design and implement health promotion and health education intervention programs for people with severe mental disorders. In general, they could also be considered to develop programs and benefit services, adopting a participatory approach such as co-production, involving individuals in planning, implementation, and evaluation processes.