Patients’ Experiences of Participation in High-Security, Forensic Psychiatric Care

Abstract

The role of patient participation in forensic psychiatric care is unclear, but has been emphasised as important in recent research. This study aims to describe patients’ lived experiences of participation in high-security, forensic psychiatric settings. Sixteen patient interviews were performed in this phenomenological study and analysed with a Reflective Lifeworld Research approach (RLR). Results show that participation must be understood in relation to its opposite construct, non-participation. Participation can thus be explained as situations where non-participation is less visible. Actions to develop the training of patient-staff interactions for forensic psychiatric staff to promote patient participation are called for.

Introduction

Forensic psychiatry provides care for patients with severe mental disorders, many of whom have committed some kind of violent crime (Buchanan & Grounds, 2011). Patient participation is regulated in law in the Swedish healthcare system, including forensic psychiatric care, and it is the duty of all healthcare staff to strive to achieve this (Swedish Patient Act; SFS, 2014, 821). This actualises what is known as the ‘dual role dilemma’ in professional ethics for clinical staff in forensic psychiatric settings, as the patients’ desires, need of care and staffs’ attempts to constrain patients, based on safety and considerations of policies in the criminal justice system, may conflict in numerous ways (Miller, 1990; Munthe et al., 2010). Against this background, the present study focuses on patients’ views on patient participation in high-security forensic psychiatric care.

Background

It is unclear exactly which goal patient participation in healthcare is supposed to serve despite it being generally advocated. Patient participation is often described as improving patients’ health and having a positive effect on patient satisfaction (Castro et al., 2016; Ding et al., 2019). The World Health Organisation (WHO; World Health Organization. Regional Office for Europe, 2013) describes patient participation as something that reduces healthcare-related safety risks, and the UK National Health Service (NHS, 2016) describes involvement of patients in their care as a priority when promoting patient safety. The main aim, in the more general literature on person-centered care, is rather patient empowerment and emancipation (El-Alti et al., 2019). However, in terms of psychiatric healthcare, patient participation is often described as something that might make patients more positive towards treatment (Hamann et al., 2010), linking to the aim of promoting treatment adherence (Sandman et al., 2012). These types of goals concerning health improvement, consumer satisfaction, emancipation, and treatment adherence may all be seen as potential areas of conflict and complicate the management of the dual role dilemma for mental health professionals.

In a well-cited publication on patient participation, Sahlsten et al. (2008) defined four attributes as characteristic of patient participation: an established relationship; a surrendering of some power or control by the nurse to the patient; shared information and knowledge between carers and patients; and active mutual engagement in intellectual and/or physical activities. However, the term ‘patient participation’ is used interchangeably with terms such as ‘patient engagement’ and ‘patient empowerment’, while all these terms differ in meaning. For example, patient empowerment is a broader concept than patient participation (Castro et al., 2016). An integrative review of patient participation in mental healthcare showed that the concept is not clearly defined and that there are several terms with similar meaning describing the patient’s active role during treatment, such as ‘collaboration’, ‘partnership’, ‘user involvement’ and ‘patient participation’, all which are linked to shared decision-making, shared ownership and a recovery-oriented approach (Jørgensen & Rendtorff, 2018). Similar observations have been made regarding notions about patient or person-centered care (El-Alti et al., 2019), and of shared decision-making (SDM) (Sandman & Munthe, 2010) in general. Patient participation is sometimes described as an overused and overly vague concept (Nilsson et al., 2019). Magnusson et al. (2020) conjecture that participation is a kind of buzzword in forensic psychiatry—it sounds good in theory but is much harder to use or embrace in clinical practice.

The forensic psychiatric care environment has many restrictions. The majority of patients in forensic psychiatry are cared for against their will, their movements in general are restricted, the care itself may have an indefinite length, and family, social contacts and communication possibilities are restricted, as is any behaviour perceived as undermining security. Forensic psychiatry is a highly routinised environment that leaves little space for normality and spontaneity. Restrictions are often intrusive, for example being impeded from keeping your own perfume or smartphone in your room (Tomlin et al., 2020). It has therefore been suggested that the room for patient participation, collaboration or person-centeredness in this type of care may be very limited, or even a misnomer (Munthe et al., 2018). Söderberg et al. (2020) described how care professionals in the highest security settings in forensic psychiatry struggle with a balancing act between the role as a carer and that as a ‘guard’, while at the same time trying to establish a good, caring relationship, characterised by humanity, with the patient. In any case, justifiable implementation of participation strategies in the forensic psychiatric care context requires careful adaptation to what works and what produces desirable care outcomes (Selvin et al., 2021).

Keresi et al. (2019) emphasised a caring relationship as a prerequisite for patient participation in psychiatric contexts. Other than that, however, the literature remains very vague on what concrete measures would promote patient participation or any of the goals motivating it. The Swedish Agency for Health Technology Assessment and Assessment of Social Services (2017) reviewed evaluations of interventions to achieve person-centered care, SDM and support for self-care—all terms related to patient participation—with the outcome that almost no interventions could be shown to significantly improve either patient participation or health¹. It is thus a difficult issue to determine which interventions for promoting patient participation that should be, even experimentally, implemented in the highly complex context of forensic psychiatric care.

One way of moving closer to facing this challenge is to investigate the perspectives of key actors, in this case primarily caring professionals and patients. These perspectives are close to, and embedded in, the care context, with all its complexities. They are the ones acting within this context on a daily basis and are those who would enact any implemented patient participation intervention. However, there are only a few studies of carers’ perspectives on the possibilities for patient participation in forensic psychiatry (Selvin et al., 2021; Söderberg et al., 2020). In terms of the patient perspective we have only found one interview study, focussing on how inpatients and outpatients perceived the concept of ‘patient participation’. This study demonstrated the importance of influence, confidence, own responsibility, and communication between the patient and carer (Selvin et al., 2016).

No studies with a phenomenological approach, describing participation from the exclusive perspective of patients in high-security forensic psychiatric settings, have, to the best of our knowledge, been performed. A phenomenological study focussing on high-security, forensic psychiatry can thus contribute with essential knowledge, both for improving the quality of forensic psychiatric care and the evidence base for the discussion on person-centered care in forensic psychiatric settings.

Aim

The aim of this study was to describe patients’ lived experiences of participation in high-security, forensic psychiatric settings.

Method

This phenomenological study was conducted with a Reflective Lifeworld Research (RLR) approach (Dahlberg et al., 2008). RLR is founded in the philosophy of Husserl’s lifeworld theory (Husserl, 1970) and theory of intentionality (Husserl, 1973), as well as Merleau-Ponty’s theories of the lived body (Merleau-Ponty, 2002/1962) and ‘the flesh of the world’ (1968). A core concept in the theory of intentionality is that we always perceive things as something. The consciousness is always directed towards something, but is directed outwards from ourselves. When we experience something, it is an intentional act that creates meaning. The lifeworld theory proposes that people understand the world based on their experiences, and that the lifeworld is thus unique for each individual. Epistemologically, we can gain knowledge about a phenomenon by listening to someone’s lived experience of that phenomenon, and we can understand someone’s experiences through our own experiences, thus gaining an intersubjective understanding (Dahlberg et al., 2008). Merleau-Ponty (1968), one of the later phenomenologists, stated that a phenomenon should be understood as a figure against a background from which it stands out. This also means that we can only explain the world in relation to our experience of it, as it is experienced. This can be summarised by stating that context matters, and meaning is always contextual. Based on the above described philosophy, the methodological principles for RLR are characterised by openness and flexibility towards the studied phenomenon, and a bridled (reflective) attitude throughout the research process (Dahlberg et al., 2008). Bridling can be described as a method to slow down the process of understanding and not to take anything for granted. It is not possible to set aside one’s pre-understanding, but by maintaining a reflective and critical attitude during the process, the phenomenon can show itself in a new way (Dahlberg et al., 2008).

Setting

There are 25 forensic psychiatric clinics in Sweden with a total of approximately 1,230 inpatient beds (Swedish National Forensic Psychiatric Register, 2020), divided into three security-levels: 1 (very high), 2 (high), and 3 (satisfactory²). Thirty percent of the inpatient beds are classified as security level 3, 7–8% as level 1, with the rest being at level 2. Patients are treated in forensic psychiatric care in accordance with the Forensic Mental Care Act (SFS, 1991, 1129), with 18% of all inpatients coming from jails or prisons due to mental disorders that require highly specialised psychiatric care not available otherwise (Swedish Association of Local Authorities and Regions, 2020).

The current study was conducted at 10 different wards from three forensic psychiatric clinics. The security level was high (2) to very high (1). A typical ward of this kind contains 8–12 patients and generally has a high level of staff density, with as many carers as patients during daytime. The professionals working on the wards are registered nurses, licenced assistant mental health nurses and social pedagogues. Social pedagogues have an extended responsibility of social activities, and they have a higher education, at a minimum a bachelor’s degree. Professionals affiliated to the wards include psychiatrists, social workers, psychologists, physiotherapists, and occupational therapists.

Informants

The 16 informants were either patients sentenced by a court to forensic psychiatric care with special court supervision (n = 14) or patients treated within forensic psychiatry while serving a prison sentence (n = 2). The care period in high-security (level 1 or 2), forensic psychiatric wards varied from 1 to 32 years (mean: 7, median: 2), and the majority were men (n = 13 vs. n = 3 women). The age of the informants varied from 22 to 63 years (mean: 38, median: 35). Ward liaisons assisted with providing information and recruiting informants. A purposive sampling approach was applied in the present study in order to reach a variety of informants. The informants presented a variety of current, primary psychiatric diagnoses, for example psychosis, autism spectrum disorders, and personality disorders. Many of the informants had experiences of both serving time in prison and being treated in forensic psychiatric care.

Data collection

Data were collected in 16 lifeworld interviews with patients (Dahlberg et al., 2008). The majority (n = 14) of the interviews took place in conversation rooms inside the wards. Two interviews were, however, conducted by telephone due to the COVID-19 pandemic. The first author was alone with the patient in the closed room for all interviews except one, when the informant wanted to be accompanied by a carer who just sat inside the room as support for the patient. The interviews lasted between 20 and 60 min and were audio-recorded and subsequently transcribed verbatim. The interviews were conducted using a reflective attitude, according to the principles of RLR (Dahlberg et al., 2008). The starting question was: Can you describe a situation where you have experienced patient participation? Follow-up questions were asked, for example: Can you tell me more? How did it feel then? The interviewer continuously sought to get the interviewee to share his or her lived experience and help the interviewee to maintain the interview’s intentionality towards the phenomenon.

Data analysis

The data were analysed for meanings in accordance with the RLR principles of openness, flexibility and a bridled attitude. The analysis is a process defined by a movement between the whole and the parts, with the purpose of identifying a new whole in order to describe the phenomenon’s essential structure of meanings. Initially, meanings of the phenomenon ‘participation in forensic psychiatric care’ were identified. These were sorted into clusters based on similarities and differences but were kept flexible as long as possible (Dahlberg et al., 2008). The analysis continued by using figure and background in between the clusters to find new patterns of meanings so that the phenomenon’s essence could gradually emerge. Working with figure and background and allowing them to take turns, means that the visible figure in a phenomenon cannot be understood without its invisible side, its background. Similarly, the invisible cannot be understood without the visible figure, now as a background (Dahlberg, 2011). This process was characterised by a bridled attitude to slow down the understanding during the analysis, which means actively being reflective, critical questioning and open towards both the phenomenon and the understanding process.

Ethical considerations

The study was approved by the Swedish Ethical Review Authority (Reg nr: 2019-02667) and followed all conventional proceedings and principles in this kind of research, for example the principles of confidentiality, integrity and informed consent. Before participating in an interview, the psychiatrist medically responsible for each informant approved that the interview could be conducted with consideration to the informant’s psychiatric status and security concerns. Ward liasons provided information on the study, helped recruiting informants and contacted the interviewer when patients showed interest in participating in the study. The interviewer then provided additional information about the study and obtained written, voluntarily informed consent from all informants prior to participating. Information was given both orally and in writing and time was given to all potential informants to ask questions to make sure the informants understood the purpose of the study.

Results

Firstly, the essential structure of the phenomenon is presentenced. The essential structure is followed by its constituents that form a structure on which the essence depends. The identified constituents cannot themselves bear the essential structure of the phenomenon but should be seen as contextual nuances and variations of the phenomenon. The constituents present the phenomenon’s patterns of meanings illustrated by quotes to elucidate the phenomenon participation in high-security forensic psychiatry.

Essence

Participation in a high-security forensic psychiatric environment becomes visible against the background of non-participation. Participation thus appears in the movement away from ‘non-participation’. Participation appears in moments, occasions, or situations where non-participation, powerlessness and uncertainty have less space and are temporarily in the background. These moments are evoked by interpersonal encounters, by how people treat each other, and by an atmosphere and culture on the ward characterised by an attentive and humanising approach.

It appears to be difficult for the person being cared for in a high-security, forensic psychiatric environment to consider participation to be a meaningful concept. In a hospital environment characterised by indeterminate treatment timeframes and where someone else has the power to make decisions, passivity, powerlessness, and uncertainty become apparent. These feelings can be counteracted and relieved by carers or situations where participation is created. The carers’ attitude that creates participation fosters key relationships and counteracts non-participation, thus also promoting participation. Trust and understanding exist in key relationships, which in one sense compensate and go beyond restrictions and incarceration where the relationship itself creates an experienced participation.

Feelings of non-participation are counteracted or reduced through possibilities to make choices. There is a sense of humanisation, an intimation of autonomy in the choice. The existence of activity is a core facet for participation, partly through being able to choose or to opt out of activities, and partly through more activities to some extent symbolising progression in some sense. Increased possibilities for activities lead to increased responsibility and a chance to prove oneself, to regain agency. An adjacent aspect is the possibility to make decisions in the form of being allowed to be involved in discussions and be listened to, which counteracts feelings of non-participation, even if the possibilities to make decisions in the true sense of the word are few.

A stronger resilience against non-participation and powerlessness is derived from caring relationships that are supportive and which do not eliminate responsibility. The quality of caring relationships is thus crucial for whether if, and how, participation emerges or not.

The more contextual nuances of meanings are presented in the constituents below.

Participation becomes visible against the background of non-participation

Participation can be understood as a way of getting away from a state of ‘non-participation’. Feelings of participation appear in high-quality and significant relationships with the carers, including both ward staff, psychiatrists and other professionals. These professional relationships contribute to feelings of being understood in one’s situation and increase confidence on the ward. A relational trust is also experienced when respect and honesty is experienced in the relationship, which can contribute to a resilience against negative episodes or perceived slowness in the care process.

I can feel safe, it’s a bit of the same thing there. If you have good contact with staff and the management etc, then you feel safer. Then I don’t mean the type of security that one wouldn’t be attacked by someone. More the feeling just that I’m here and I feel good here. I can accept to be here given what I’ve done. That is safety. (3)

Non-participation in the form of the legal framework of coercion and incarceration is a prominent element in forensic psychiatric care, not only through the framework itself but also more subtly in the form of the carers’ attitudes and culture on the wards, and how these are experienced by the patients. Being deprived of responsibilities as a patient, for example by not being allowed to take food yourself but instead being served by staff, can be experienced as belittling and making it difficult to experience participation in one’s own life. Uncertainty about the future is described as powerlessness in not being able to decide over one’s own life. A core aspect for this feeling of powerlessness is the uncertainty in the existence and the fact that the environment does not support certainty, that no one can explain how the care works and what is needed to be discharged. “It’s very difficult to understand how this place works, and there are so many difficulties to deal with” (14).

There is a frustration when the care process is perceived as slow, with long periods of inactivity. Similarly, the ward is sometimes experienced as a kind of storage facility, and boredom and feelings of a meaningless existence are common among patients.

When I came to the clinic, then I had a picture, ok now I’ll be treated and now a lot of things will happen, you know. But it’s not like that, you come here and then you just wait a lot. (4)

Certain events or situations emerge as providing a sense of participation when understanding non-participation as the background to the phenomenon. This participation becomes visible when patients experience that they share the same information as the staff, a sense of safety arises that promotes feelings of participation. The opposite, non-participation, can manifest itself in the form of only receiving information about what the staff already have decided.

It (participation) is not just joining in on the ward round for two minutes. Or coming to a treatment conference for the last 5 minutes to get information about what they’ve decided. That is not being involved, that is just getting information about the decisions they have made. (1)

Patients describe it as being easier to establish a relationship with staff on the ward than with professionals higher up in the care hierarchy, for example psychiatrists. It thus becomes important that the member(s) of staff with whom the patient has a good relationship also have a good relationship with the psychiatrist. The staff on the ward then become a kind of gatekeeper, or representative, of the patient’s interests.

So therefore if you have a good contact person who actually listens to you and acts ethically, then this contact person can then speak for you… and then they (physicians) listen a little more to him or her… so that’s why it’s so important in places like this that carers are sensible, reasonable people who want to do good… (14)

The importance of long-term sustainable relationships is described as being a prerequisite for participation. It is possible to have an honest discussion in safe and healthy relationships. Safety can be experienced in these professional relationships thus creating participation, while the opposite creates feelings of non-participation. A patient who suddenly had to move to another ward describes the insecurity and how difficult it became to trust staff when the relationships that had been established suddenly disappeared.

I had behaved in an exemplary way on the first ward. Then I was moved because, well, someone else simply needed my room, then it was because of the clinic’s decision so my opinion or me was not taken into account. In general, they have only seen that there is a patient you can move to this room so that another patient can get his room. There was no participation at all in that situation. (8)

The carers’ attitude is crucial for participation

The way carers treat patients is linked to experiences of their attitude towards patients and affect both participation and non-participation. The experience is not a question of either or, but rather a question of degrees of both. Being acknowledged and having one’s expressed needs responded to by the carers is described as sometimes more important than receiving benefits or privileges in the care (e.g., unsupervised leave), and compensates for the many restrictions that are associated with being incarcerated and cared for in a high-security environment. A response from staff that evokes feelings of being doomed to fail among patients, can be said to make the experience of participation more difficult to attain, but on the other hand, it could also cement feelings of non-participation. A ‘sigh’ from the carer when asked for example to get something from a closed area such as the kitchen is perceived as an insult, which is counterproductive when it comes to participation.

Yes, I can say, ‘can you come with me, I’ll throw in some clothes in the washer?’ Then the thing is, how does the staff treat you when you say so … ‘I have no time now, throw it somewhere… (3)

To be reprimanded, for example being told to go to one’s room when one is feeling bad, is described as offensive by patients. Such feelings also arise in situations when the carers refer to each other, when being asked questions, or ask the patient to raise their issue at another time. Patients experience a reluctance from the carers to be helpful and supportive in such situations, which leads to non-participation manifesting itself in the form of perceived powerlessness.

It feels like I said, the uncertainty is a kind of torture. I manage day for day, week for week. But how long can you do it without getting worse, either being more depressed or getting more aggressions or whatever. That’s what I ask myself. If you want… if you want to make me more involved, then you have to sit down with me and explain how things really are, or by saying ‘this is how we do it’. And ask me what I think about that? (8)

The opportunities for experiencing participation are negatively affected in situations where the carers spread a feeling of it being tiring and annoying when a patient requests help, or when it is obvious that the carers themselves feel bad. Having ‘healthy staff’ around you makes the existence easier than when the environment consists of other patients with various problems. “Yes, you feel comfortable with some members of staff, it’s a hell of a difference. When some staff are working, you may not want to be outside (of your room) that much. You have to be honest and say that. You don’t feel comfortable with everyone” (5).

Experiences of participation involve an expectation of the other party’s, that is the carer’s commitment. When carers show commitment to the care and demonstrate that they have a desire for the patients to succeed, then patients can experience participation. It does not have to entail big gestures, but rather decent everyday interpersonal encounters such as a nice “hello, how are you?” and a generally positive attitude. “It’s important that the staff are positive, that they don’t just say, I don’t want to do that” (5).

A greater level of participation is experienced by the patients when staff are honest and say what they think, even if it means that they do not agree with the patient, this is related to trust. When carers promise something that is not incorporated in the care, it is experienced by patients as dishonest and as non-participation. On the other hand, when the staff explain the reason, for example when an activity is cancelled due to lack of staff, and there is a transparency about this to the patient, this is experienced as honesty from the carers. Honesty in such situations becomes in one sense participatory, even though the activity was cancelled.

Activities and possibilities to make choices

The experience of participation comes together with the opportunity to make choices and to be involved in decisions. Non-participation can, in this context, be understood as not being allowed to make decisions about the care. However, making decisions and being a part in the decision process in the care has a wider meaning than just deciding. Participation is experienced by patients when opportunities to be involved in conversations that lead to a decision are provided, instead of just being informed of what has already been decided.

The important thing is, even if you do not get your request through, you have discussed it and been given their views on why they look at it differently than you do. But then you have been included and have had an opportunity to influence. I can understand that everyone has different opinions. And the doctor has his way of working and how to treat me. But if you have been involved and feel that you have been seen, then it makes a great difference. (8)

Being invited to a conversation evokes feelings of responsibility. This includes being able to participate and to give proposals that are listened to and considered. The discussion is important and evokes a sense of being seen, even if the patient’s proposals are rejected. On the other hand, not being listened to is experienced as non-participation, and invokes feelings of not being understood and that the care takes place over one’s head. This contributes to feelings of exclusion and loneliness.

No, then it’s just to go back to last week when I tried to talk to the doctor, you know. I can understand that he has two large wards. But he can’t meet me with “there’s nothing we can discuss now, we have to take it later on”. Or I feel I’ve been steam-rolled, but then I can’t speak for everyone else. (15)

Participation in activities can enable and reinforce patient-staff professional relationships. Choosing between different activities, and there also being an actual increase in activity level, is associated with feelings of participation. For example, increased benefits in the care (e.g. being allowed group walks) can result in patients being allowed to participate in more activities, an increase in activities can thus symbolise a progression in the care process.

No, but we are allowed to go to the gym and we are allowed to go to the data-room … and we are allowed… all patients have different, some are allowed to do this and that, you know it depends on how much you have ‘climbed’. (9)

Participating in activities dispels thoughts and constitutes moments when the non-participation is forgotten. The activities also constitute a forum where the patient is able to show that progression has been achieved, for example in terms of behaviour.

You can do the best you can on these activities in here by not arguing and by showing consideration for others and respecting each other. I’m not a troublemaker. (11)

Discussion

This study portrays patients’ experiences of patient participation in high-security, forensic psychiatric care settings, rendering a complex picture where the phenomenon participation in this specific context needs to be understood in relation to the opposite concept—non-participation.

The results reveal the difficulty of comprehending patient participation in the high-security, forensic psychiatric context; it is easier to describe the default experience of non-participation and to use that as a baseline for the continued conceptualisation. The experience of participation in a non-participatory context, such as forensic psychiatry, can thus be understood as a movement away from a default experience of ‘non-participation’, in which powerlessness and an uncertain existence are dominant feelings. High-security, forensic psychiatric care is experienced as slow and passivating with an uncertain outcome for the patients as in the study by Hörberg et al. (2012), and Hörberg and Dahlberg (2015) have argued that forensic psychiatric care is permeated with power and powerlessness, both from the perspective of patients and staff. They highlighted the complexity of dealing with dual tasks—caring for the patient and his/her needs while at the same time protecting society from the patient. Patients experience participation in the present study when carers prioritise the forensic caring act and do not let the coercive part of their role be predominant. Furthermore, this study shows that experiences of participation can be understood in terms of an approach from or (perceived) attitude of the staff that counteracts the default position of non-participation. Open and honest interactions with carers encourage participation from a patient perspective, or at least reduce the experience of a ‘non-participatory’ existence. Based on these findings, honesty and openness seem important elements of carers’ attitudes for promoting a more participatory caring climate.

Marshall and Adams (2018) explored how carers in forensic psychiatry establish a therapeutic relationship with patients, demonstrating the most important carer qualities to be honesty and the ability to listen, show respect and empathy. This is also in line with Hildegard Peplau’s theory of interpersonal relations (Peplau, 1991). Hörberg (2018) maintained that if carers have the ability and willingness to see and encounter the patient’s lifeworld, both carers and patients can gain an understanding of the patients’ situation and perspective. Wolf et al. (2017) identified both formal and informal aspects of partnership; patients seemed to value a process of human connectedness higher than formal aspects of partnership for example documenting goals agreed-upon and care planning. A caring relationship characterised by trust and confidence has been described from the carers’ perspective as a prerequisite for participation in a high-security, forensic psychiatric context (Söderberg et al., 2020). This finding, together with those in the present study, indicates that factors that are considered important for high-security, forensic psychiatric care by both carers and patients also figure as the chief constituents of a patient experience of participation. However, this is in one way difficult to achieve related to the described ‘non-participatory’ default. At the same time, this study also highlights that only very small changes in carer attitudes and daily activities away from this default may suffice to create an increased sense of participation among patients.

A recent study examining patients’ perceptions of forensic psychiatric inpatient care described that acts of involvement, confirmation, trust and hope were experienced as elements of good care. These examples were, however, rather exceptions from a care that was perceived as predominantly negative (Marklund et al., 2020). These experiences of inpatient forensic psychiatric care seem in general to be a parallel to the findings of experienced participation in the present study. The predominant patient experience is non-participation, with only small ‘pockets’ of participation emerging within developed caring relationships with staff who make the intrinsic power relationship less visible. Hörberg et al. (2012) described that ‘pockets’ of (patient perceived) good care in forensic psychiatry may vary, while they are very small for some patients, for others they are larger. Good care from the patients’ perspectives emerges when carers dare to be themselves and try to see and meet patients with openness. This can be achieved, according to Hörberg (2015), by a caring attitude as exemplified by carers having a sensitive wakefulness for how patients experience situations, just by asking oneself questions like ‘how does the patient experience my approach in this given situation?’. Rytterström et al. (2021) explored the meaning of significant encounters in forensic psychiatry and showed that everyday activities in forensic psychiatric care are not trivial but act as an important foundation for significant encounters that aids both carers and patients to increased understanding for the future. This is similar to the findings of the present study, where perceived participation seems to be linked to everyday activities, and the outcome of these activities seems dependent on the carers’ attitude and ability to engage and motivate the patient. The current study also portrays the opposite; carers who act as though it is unpleasant to be at work, having to interact with patients, and giving rise to feelings of loneliness and non-participation. This emphasises that everyday activities and the way carers engage in such activities should probably be prioritised, even in high-security, forensic psychiatric settings, both to achieve a better sense of patient participation and an increased perceived quality of caring relationships and the care itself. The present results showed that everyday activities and the opportunity to engage in more activities and regain increased freedom are associated with patients’ experiences of participation, and that this experience links to one of a possibility of progressing therapeutically. Watson and Choo (2021) described the goal for forensic psychiatric care, based on a literature review, as balancing and achieving safety with patient rehabilitation. A part of this is granting patients leave to ensure a gradual and safe return to, in many cases, community settings. It is understandable from this perspective, that patients perceive progress in their care as regaining responsibilities, thus increasing the perceived participation in the care. Our results indicate that there is an expectation from patients on carers to engage and make progress in their care possible through an increase of patient participation.

Hammarström et al. (2020) showed that compassion in forensic psychiatry is an emotional journey for nurses working in this context and entails being exposed to incomprehensible expressions of suffering. It seems as though working emotionally ‘uphill’ for long periods of time can render feelings of numbness and coldness in nurses. Being compassionate seemed to be closely related to the nurses’ ability to cope and respond to patients being erratic. Söderberg et al. (2020) demonstrated the staff’s perspective on supporting participation as ‘being there’ for the patient and helping him/her through difficult times. Bennett and Hanna (2021) described the patient-staff relationship from the patients’ perspective as positive and therapeutic when carers aid them in finding their way through the forensic system in a respectful and caring way. Results from the current study strengthen the suggestion that patients desire somebody to help them make their existence in the care system as understandable and comprehensible as possible. Clearly, since the carers are expected to support the patients in this process, carers themselves must be supported in understanding and coping with the peculiar context of forensic psychiatric care.

Another perspective on the essence of forensic psychiatry is the phenomenon of judiciarization in forensic psychiatry, which in this study emerges as a background mechanism for the default of non-participation experienced by the informants. Judiciarization refers to the increasing level of contact people who suffer from mental disorders have with the justice system, and the way that this system shapes the conditions of the care (Paradis‐Gagné & Jacob, 2021). The combination of psychiatric healthcare and legal systems, such as (in Sweden) the Prison Act, the Patient Act, and the Forensic Mental Care Act (SFS, 1991, 1129) is very prominent in forensic psychiatry. When patients who are cared for in forensic psychiatry seek to understand the care process, there are several factors and systems that are concerned besides the medical perspective. This makes forensic psychiatric care unusually complex to explain to people, and sometimes it appears to be paradoxical, especially when different systems apply to different patients on the same ward, as might be the case in highly individualised care settings.

Despite the complexity of forensic psychiatry and its medicolegal characteristics, the findings in this study suggest that patients may experience a sort of participation when they are included in discussions about their care. However, when they are not included, the experiences are the opposite. Munthe et al. (2018) emphasised that shared decision-making and person-centered care are different in forensic psychiatry when compared to other healthcare settings. Person-centered care in these types of context can aim to promote unconditional patient interests, empowerment and emancipation, but in forensic psychiatry the public interest and protection of society (from e.g., further violence and crimes) must also be considered. If a patient wants to live a life according to their own moral standards that may harm others or society, empowerment of this patient cannot be understood as care progress. Patient progress is furthermore dependent on their willingness to accept the regime prescribed by the care, such as compliance to medication and various restrictions. Shared decision-making in this context is therefore more limited, with no room for what Sandman and Munthe (2010) have termed high-level dynamics. However, certain limited elements of person-centeredness emerge as crucial in the present study. First, a core concept in person-centered care is that the care is based on the patients’ narrative, and where it is a minimum requirement that the patient perceives that he/she has been seen and listened to (El-Alti et al., 2019). Second, less advanced variants of shared decision-making may increase the experience of participation through explaining, in a transparent and easily accessible manner, that the patient has to follow the restrictions in order to gain increased liberty, with the possibility of refusing with maintained restrictions. Or to offer a patient to take part in an activity with the positive incentive of increased freedom if he/she adheres to the rules and allowing the patient to decide whether or not to take part. The findings in the present study suggest that such limited forms may still make an important difference for the patient’s sense of participation. The process of being included in the discussion and thus gaining increased understanding as to how and why the carers are reasoning in a specific manner, seems to counteract experiences of non-participation. Even if there is no room for more advanced variants of person-centered care in (high-security) forensic psychiatry, striving to perform the daily care in a way that conveys a sense of participation to patients may thus still be of value.

Methodological considerations

The patients included in this study constitute a very heterogeneous group, some of whom were very eloquent and high-functioning, and some were affected by cognitive impairments that made the interviews challenging. The patients together present a rich variation and it is important to not exclude patients with, for example psychotic disorders in studies such as the current. The benefit of using an RLR approach is the solidity in its ontology, epistemology and methodology; the whole process from the interview to the analysis is characterised by an open, reflective and bridled attitude towards the phenomenon, which is applied in order to achieve objectivity and to avoid taking for granted what is unknown (Dahlberg et al., 2008). The RLR approach, with its abstract level of the essential structure of meanings in the result can be seen as a strength in the study. The essential level of the results provides possibilities for transferability to similar contexts (Van Wijngaarden et al., 2017). The phenomenon-oriented approach places great demands on the researcher, especially pertaining to the difficulty of bridling one’s own pre-understanding. This has been important to discuss and reflect on within the research team, and the process has been characterised by a reflective attitude and an ambition to slow down the process of understanding in order to not understand and define the phenomenon in focus too quickly. In support of Van Wijngaarden et al. (2017), we assert that lifeworld knowledge is vital for the healthcare services and that contextuality and intentionality are essential in understanding different phenomena. Phenomenological studies embrace the complexity of existence and show that it is not possible to achieve a detached objectivity in research. Understanding a phenomenon such as participation in such a complex context as forensic psychiatric high-security settings is certainly not uncomplicated, but we maintain that lifeworld studies can contribute with a greater understanding and knowledge of such phenomena.

The patients in many of the interviews found it initially difficult to talk about participation, which is why they instead started to give examples of non-participation. This was dealt with by the first author by keeping an open and flexible attitude towards the phenomenon of participation in forensic psychiatric high-security care. The patients were for the most part able to give examples of participation but approached the subject by first talking about self-experienced non-participation. This indicates that the concept of participation is difficult to grasp in the high-security, forensic psychiatric context. We are aware that the results and the phenomenon in the data collection and analysis do not only concern participation but also its opposite construct, non-participation, which is why we have used non-participation as a background to better understand the phenomenon. By focussing on the high-security care context and using Merleau-Ponty (1968) philosophy, we have made it clear that the meaning of the phenomenon participation is contextual. In terms of the methodological approach, this is entirely in accordance with the principles of RLR (Dahlberg et al., 2008).

Based on the number of interviews, settings and wards from which patients were recruited, it is reasonable to maintain that the types of experiences described in the study are representative of those to be found throughout the Swedish high-security, forensic psychiatric care system. This system, except for some legal details, is very similar to those in other regions, and it can be expected that these experiences will be present also there.

Conclusion

Patient participation in high-security, forensic psychiatric care is not a simple matter. We have highlighted how patients can be invited to share information, take part in care-related activities and discussions, and be supported in the understanding and management of their uncertain existence (e.g., unclear time perspective, not having defined goals). If the care includes such positive elements as named above, the level of experienced participation will probably be greater together with the experience of the care as whole. A challenge is that forensic psychiatric care is very complex and individually tailored for each patient, at the same time as carers might lack the prerequisites to support patients though their journey in their care process. In terms of clinical implications, a caring attitude among staff has emerged as a crucial element of forensic psychiatric high-security care. Carers can in one way find comfort in the knowledge that striving for high-quality and significant relationships also increases the experience of participation for the patients. However, at the same time, we want to highlight that carers can help patients to a greater degree if they themselves understand and are able to explain the complex forensic psychiatric structures. Actions to support the development of staff training in patient-staff interactions in forensic psychiatric care, in order to increase experiences of patient participation, are thus called for.

Acknowledgments

We want to acknowledge the patients who contributed with their experiences. We also want to thank the participating forensic psychiatric clinics and the contact persons at the different clinics who made this study possible.

Additional information

Funding

This work was supported by the Swedish Research Council for Health, Working Life and Welfare under Grant no. 2018-01409, Medical Research Council of Southeast Sweden under grant no. 2019-930801, Department of Research and Development, Region Kronoberg, 2019- 933814, 2019- 930775 and supported by the Regional Forensic Psychiatric Clinic in Växjö.

Notes

1 Common measures of outcome were health-related disease-specific measures, time between care and release from hospital, confidence in own ability, subjective satisfaction and quality of life.

2 Lower security but still locked settings or wards