Information and involvement in care

Patients' experiences of involuntary admission were profoundly affected by the extent to which they were provided with appropriate and timely information and were involved in treatment decisions. In the majority of studies, patients described poor experiences in these areas, although several examples of high-quality care were also relayed.

Patients described wanting information about why they were being detained for treatment, how long they would be detained, and how they could access legal information about their rights and entitlements. Patients in forensic settings described receiving conflicting information about their length of stay resulting in feelings of hopelessness. Some felt their treatment had continued for a long time and compared it with a prison sentence. In many studies, patients reported that they were not given basic information of this type, or about medication (including side-effects) or perceived progress. In the minority of cases where patients did feel they had been provided with clear information, this appeared to reduce fear and the impact of coercion, improve relationships with staff and result in patients feeling less disempowered.

Some patients acknowledged that their distress during admission made it difficult to listen and process the information they were given. Some also reported that too much information, particularly about side-effects, could potentially be overwhelming. A lack of information led some patients in forensic settings to believe they would be released following their mental health assessment whereas others described their desire for as much information as possible prior to transfer to a less secure ward.

In the great majority of studies, patients described wanting to have involvement in decisions about their care; very often more than was offered. Good relationships with staff facilitated involvement in decision-making. Flexibility in care, such as being given permission to leave the ward, also reduced the perception of coercion. Some patients reported experiences of collaborative care, including creating treatment plans with staff, but others described their advance statements (a written statement expressing preferences for future care)^{Reference Jankovic, Richards and Priebe70} being ignored. Some patients did not view their involuntary admission as coercive as they had previously agreed that involuntary measures could be taken when they become unwell; however, others felt that coercive treatment (and, indeed, the threat of involuntary admission) undermined their ability to meaningfully consent to care.

Carers' input to decisions was appreciated particularly when patients were too distressed to engage, but this could also leave patients feeling excluded from decision-making. Advocacy services and peer mentoring were suggested as avenues for improving involvement. Some patients suggested that involvement in decisions about their care should increase as symptoms began to abate, and highlighted that being given responsibility to make choices as soon as possible was an important part of recovery. When meaningful involvement in overall care planning was not possible, patients wanted at least to be fully informed.

Studies that reported experiences of legal hearings related to involuntary admissions to hospital, such as Mental Health Act Tribunals in the UK,^{Reference Shah71} described some patients being pleased with the steps taken to facilitate their involvement, including being given time to articulate their thoughts; relatives and staff acting as advocates; and legal representation being available. However, others felt excluded by the presence of unfamiliar people and the formal language used. Tribunals were viewed favourably by patients as a method of upholding human rights but patients often found themselves struggling to not only access information about tribunals but also to discuss it with a member of staff.

Forced medication, especially if patients were unaware of which medication was being administered was a source of particular distress. Some patients indicated that if they had they been given the opportunity to make a fully informed decision, they would have complied, but instead often found themselves being offered what they perceived to be a false choice and threatened with punishment. Treatment during detention was described as predominantly comprising medication and, although many patients agreed that medication had been important for their recovery, the need for psychological therapies was also frequently described. In some studies, patients complained about the side-effects of medication that were difficult to tolerate and made it harder to take part in therapeutic activities. In contrast, some patients in forensic settings stated that medication helped to reduce their symptoms, which facilitated their participation in therapies. Other patients felt medication could be used to prevent the need for coercive interventions and valued the sedative effects provided they did not feel drowsy later. Finally, patients in several studies reported that they lacked information, regarding what was happening and why, while being restrained and reported that this contributed substantially to their distress in these situations where they neither had a choice nor information about what was happening.

Quality of the environment

Physical environment was identified as important throughout the care pathway. Those initially detained in police cells for or following assessment found them cold, noisy and distressing. Some felt they were being punished for having a mental illness. Lack of access to treatment in this environment could result in worsening symptoms, contributing to distress and agitation.

Safety was identified in many studies as a critical dimension of the quality of the environment. Although some patients who were apprehended by police appreciated their role in ensuring their safety, others reported feeling unsafe in police cells and criticised their use as a ‘place of safety’.

In hospital, the physical environment, safety and the availability of meaningful activities were important influences on recovery. In several studies, patients described wards as minimally decorated, untherapeutic and, in some cases, akin to prison. Although some commended staff efforts to make wards more comfortable, others criticised wards for being too noisy, overcrowded or unclean. These aspects of the environment were also seen to prevent patients from being able to have greater involvement in decision-making about their care. Patients in forensic in-patient wards were shocked by the security measures that they suggested were reminiscent of prison and, given their expectations of hospital care, were unexpected. In units where seclusion was used, seclusion rooms were described as bare, cold, uncomfortable and lacking ventilation with patients in forensic settings also describing such rooms as similar to prison cells.

In some studies, patients described fearing for their personal safety on the ward, particularly when using shared spaces. In one study, a number of female patients reported that they experienced communal spaces as risky and had been sexually harassed by male patients. Other patients also spoke of feeling unsafe on wards because of fears of theft, physical violence and bullying. Some patients reacted to these situations by staying in their rooms whereas others described meeting aggressive situations with aggressive behaviour. Lack of familiarity with the ward environment and the people in it could also foster feelings of insecurity.

In most studies, a proportion of patients reported that their involuntary admission had helped avert risk and protect them from harm but some felt that greater provision of timely and appropriate information could help patients feel safer. Some patients also felt that coercive interventions, such as seclusion, could protect them and others from harm. However, patients felt unsafe when coercive interventions were not delivered appropriately, for example with the use of excessive force. Some patients remarked that as their level of insight into their illness increased, so did their feelings of safety and security on the ward. Also contributing to a sense of safety were staff who were able to convey warmth and care. Some patients in forensic settings highlighted their relief at being detained in hospital instead of prison because of increased freedom. Forensic patients in one study, which focused on a unit for male patients with severe personality disorder, recalled fearing for their personal safety prior to admission as they anticipated a violent environment based on the reputation of the high secure unit. However, upon admission they came to find these fears were unfounded.

Finally, boredom in the ward environment influenced experiences of detention for patients in several studies, who spoke about the need for recreational, educational or occupational activities. Although patients in some studies disliked the structured nature of some wards, others argued this provided relief and helped keep them busy. Some patients highlighted that there were plenty of activities but many patients were unaware of these or simply did not attend, and patients in one study highlighted that fears for their safety prevented them from attending groups. Other patients highlighted that low staffing levels limited access to activities and otherwise well-equipped recreation rooms. Some patients in forensic settings had taken part in activities that emphasised work while in maximum secure units, such as machining and subsequently found therapeutic activities on lower security forensic wards unrewarding and meaningless, whereas others felt that these activities helped broaden their horizons.

Quality of relationships

A major factor affecting patients' experiences of detention was the quality of their relationships with staff, and to a lesser extent, their relationships with other patients. Patients also spoke about the influence of friends and family members on their experiences of detention, and how being admitted had an impact on these personal relationships.

Overall, staff who were kind, respectful and made time to speak with patients were spoken of highly. In many studies, patients spoke of wanting a trusting relationship with staff based on a human connection. In this context, some patients reported that they felt able to let staff take responsibility for their treatment and appreciated being relieved of responsibility for their care and being allowed to recover. Patients who had been detained by police officers reported they needed more mental health training but had, in several cases, been kind and gentle. Indeed, some patients highlighted the importance of non-violent interventions from police officers that could help to build trust and increase compliance. In contrast, some patients recalled encountering dismissive staff in emergency departments, who were also seen as not skilled in dealing with severe mental illness.

Negative relationships were experienced when patients perceived staff as bullying or disrespectful towards patients, and when staff did not make themselves available when they were needed, which induced feelings of anger, betrayal and abandonment. Several patients, across a number of studies, believed that staff misused their power and position to humiliate or discriminate against them and felt there was a divided climate on the wards between patients and staff. Some felt that staff privately mocked them, or that coercive interventions were used as a form of punishment by staff rather than a strategy of last resort. However, patients in a few studies also acknowledged the difficult nature of the job.

Although coercive interventions were typically experienced negatively, their impact could be mitigated by kind and caring staff. Patients also valued when staff offered to discuss conflicts in private as this was an acknowledgement of their right to privacy and dignity. One patient lamented the high turnover of staff that prevented them from building a trusting relationship, and others highlighted that good relationships, and continuity of care, could be disrupted when patients were transferred between wards. Trust in staff generally increased over time as symptoms improved, but some patients found it difficult to fully trust staff at any time.

In general, patients spoke positively of their relationships with other patients, who provided encouragement and support through difficult times on the ward. Witnessing other patients recover provided reassurance that recovery was possible and, in some studies, patients described how other patients' opinions had challenged their own thought patterns. These relationships played an instrumental role in recovery. In contrast, overcrowded wards and perceptions of being treated differentially by staff could create tension and lead to conflict, and a few patients highlighted the temporary nature of relationships formed on the wards. Some patients also described issues with safety relating to other patients, as described above in ‘Quality of the environment’.

Patients also described their relationships with friends and family. Some spoke warmly of the support they received, and how continuing personal relationships reminded them of their identity. Some patients also reported that family and friends helped them to accept their involuntary admission, by reminding them that they were unwell. Families were sometimes seen to play an important role after discharge, particularly for patients who were discharged before feeling fully recovered, as their family could continue to care for them. Overall, the experience of detention was seen to be particularly difficult for those who did not have support from friends and family members.

However, detention could also be a source of tension in important relationships. Many expressed anger towards relatives, who they felt were responsible for their admission. Others reported feeling that they had been betrayed or abandoned by their family members. Practical factors that prevented visits, such as distance and the complexity of arrangements, were also described. Finally, patients in one study highlighted that they did not think their family members were aware of how they were treated while detained.

Impact on self-worth

Across many studies, patients reported reduced feelings of self-worth and self-respect following involuntary admission. Although some believed that their involuntary admission had been necessary, many patients described the experience as disempowering and dehumanising. Patients' experiences of disempowerment were mentioned in almost every study and were consistently reported to be exacerbated by a lack of information and involvement in treatment decisions (as described in the first theme), as well as by a lack of autonomy on the ward and concerns about the potentially lasting stigma of involuntary admission. Some factors that improved self-worth were also described, as outlined below.

Experiences of powerlessness encompassed not only a lack of choice about treatment but also about how they spent their time on the ward; some patients felt that they lacked any autonomy. Patients complained about having to adhere to seemingly arbitrary ward routines, such as enforced bedtimes. A few studies discussed cultural and religious requests; some patients reported that their requests were respected but others had their requests rejected without justification. The paternalistic attitudes of some staff and needing to gain permission, for example, to have a cup of tea or go on leave, also led to reduced self-efficacy whereby patients lacked belief in their own capacity to accomplish tasks.

Patients frequently reported that they felt dehumanised during coercive interventions, although some recalled instances of staff showing genuine concern for their well-being, such as returning to the room to check on them. This helped to restore their self-esteem. Other things that were felt to improve self-worth included being treated by staff with dignity and as human beings. Patients in one study described feeling as though staff saw their individual personality, but across a number of studies, patients spoke of feeling reduced to their diagnoses with their normal variations in behaviours and emotions viewed as symptoms. Patients with eating disorders spoke of feeling under inspection when they were watched during mealtimes and some described feeling a sense of achievement when their health deteriorated, as the service was losing control of their health.

A number of studies described the impact on self-worth extending beyond the period of involuntary admission. Patients felt that, as people who had been detained, they would be the subject of future stigma and prejudice both within mental health services and in wider society, compounding the marginalisation many experienced already because of their mental illness. Some patients were concerned that having been detained once would increase their risk of being detained again. Studies that focused on police involvement described patients' sense of criminalisation and shame, particularly related to being handcuffed and placed in police vehicles. Patients were concerned that neighbours may have witnessed the arrival of police or paramedics at their home, and their transfer to hospital. Some experienced detention as a threat to their efforts to manage their lives independently and reported feeling that they had lost credibility. Others spoke of feeling as if their lives had been suspended while detained. In a small number of studies, patients commented on mental health legislation and described feeling that their human rights had been violated.

Patients in forensic settings spoke of feeling like they would carry a life-long label as a result of committing an offence and being detained in a high secure hospital where they felt excluded from society. They felt staff did not acknowledge that they had offended while ill and worried about being perceived as the instigator in conflicts. Patients in forensic settings spoke about work-related activities that equipped them with skills increasing their self-esteem and confidence, and particularly liked interacting with staff as they would in a real job. One patient also described how being involved in creating a recovery programme for the high secure service had given them a sense of achievement.

Emotional impact

Patients' experiences of, and emotional responses to, assessment for involuntary admission and detention under mental health legislation varied both within and between studies. These included some positive or neutral emotions such as appreciation or acceptance, and, more commonly, negative emotions such as anger, confusion, distress, fear, resentment and defensiveness. Patients in some studies stated they felt worse following discharge than prior to admission, because of the impact of the involuntary admission. Fear and distress were among the most prominently discussed emotions and were seen to be caused or exacerbated by many of the factors described in previous themes, including police involvement, lack of information and the behaviour of some mental health staff.

Coercive interventions were also described by many patients as having a strong negative emotional impact. Although some patients spoke of the use of restraint, seclusion and forced medication as sometimes necessary, patients in many studies experienced these types of coercion as disempowering, frightening and distressing, and as reminders of traumatic events from their past, including sexual abuse. In several studies, patients described feeling violated or assaulted during coercive interventions. Seeing other patients being subjected to coercive treatment also had an impact on patients, who reported being scared by what they witnessed. Patients described how their powerlessness often manifested itself in anger and frustration. This was particularly the case where coercion was felt to have involved the use of excessive force, the use of force to hold patients face down, a perceived disregard for patients' dignity (including situations in which clothing was torn or removed), or where multiple members of staff were present (particularly staff of the opposite gender).

Patients described how anticipation and confusion regarding coercion contributed to their fears, as did being left alone following coercive interventions. Some patients reported feeling frightened when they experienced painful side-effects from forced medication, and longer-term effects, including sleeping problems and continuing worries. Often, relatively small actions by staff members were described as having made a substantial difference to how the patient felt, such as asking if they wanted the air conditioner on or checking in on them during the period of restraint. Patients described greater staff communication, a gentle manner and regard for well-being as reducing distress. These actions also helped patients to trust staff members during their admissions.