A qualitative meta-synthesis of service users’ and carers’ experiences of assessment and involuntary hospital admissions under mental health legislations: a five-year update

Abstract

Background

Compulsory admissions occur in psychiatric hospitals around the world. They result in coercive and sometimes traumatic experiences for service users and carers. Legal and service reforms in various countries are intended to reduce rates of detention and improve service user experience. We aimed to inform policy and service delivery by providing an up-to-date synthesis of qualitative evidence on service users’ and carers’ experiences of assessment and detention under mental health legislation, updating previous reviews in which we searched for literature published up to 2018.

Methods

We searched five bibliographic databases for studies published between January 2018 and March 2023. We identified 24 additional studies reporting qualitative investigations of service users’ or carers’ experiences of assessment or detention under mental health legislation. A team including researchers with relevant personal experience analysed and synthesised data using a thematic synthesis approach.

Results

Findings suggest that views on compulsory admissions and assessment varied: many reports highlighted its often negative, traumatic impacts on emotional well-being and self-worth, with fewer accounts of it as an opportunity to access help and support, accompanied by feelings of relief. Experiences of racial discrimination, inequality of access, and dissatisfaction with support before and after hospital stay were more prominent than in our previous reviews.

Conclusions

Increasing service user and carer involvement in treatment decisions, provision of timely information at key stages of the admission process, training of key personnel, addressing the issue of discrimination, and investing in community alternatives of inpatient care may contribute to and lead to better overall treatment experiences.

Protocol registration

The study protocol has been registered in the PROSPERO database on 30th May 2023 (CRD42023423439).

Background

Involuntary treatment and compulsory hospital admissions are commonly used in psychiatric services in many countries, and present service users, carers, medical professionals and legislators with a range of emotional, ethical and practical challenges [1, 2]. There are large but at times unexplained variations between countries in compulsory admission rates, and rates have risen in some countries including England in recent years despite policies expanding community care [3, 4].

Whilst legislation requires involuntary admissions to be based on assessment of clinical acuity and risks, the decision-making process appears to be affected by several other factors. For example, variations in involuntary admission rates have been linked to service level characteristics including mental health legislation, availability of inpatient services, community-based alternatives, or public attitudes towards mental illness [5,6,7]. Some individual characteristics also seem to increase the risk of involuntary admissions, including diagnosis, gender, age, ethnicity and race, migrant status, treatment received before admission and contact with police and legal system [8,9,10,11]. Previous decisions in an individual’s care are also likely to influence future assessments, e.g. making decisions that colleagues have made previously may feel safer for detaining clinicians [11].

Involuntary admissions remain a complex process to navigate for service users and staff, where service users may find it difficult to exercise their rights and express preferences due to being in a ward environment, staff attitudes, or lack of communication [12]. Admissions are often associated by experiences of coercion [13], which in turn affects service users’ attitudes towards psychiatric treatment [14]. Thus, compulsory admissions present a challenging situation where service users’ well-being, as well as freedom and rights need to be taken into account and respected [15] in addition to clinical considerations.

At the same time, detention is thought to lead to only modest improvements in clinical and social outcomes [16]. Service users who undergo compulsory admission (compared to those who are admitted voluntarily) have higher rates of suicide and greater dissatisfaction with care, as well as increased risk of readmission, especially compulsory admission [17]. Rates of service users’ agreement with the decision to detain them vary internationally, with more than half of patients in some countries still disagreeing with the decision to detain them three months retrospectively [18]. Experiences of coercion vary substantially both for voluntary and detained patients [19]. It is therefore important to understand service users’ experience and what contributes to particularly negative experiences of detention, in order to inform efforts to improve detained service users’ experience in future. As one contributor to the call for evidence to the 2018 Independent Review of the Mental Health Act in England put it:

‘I can understand looking back why I needed to be detained at that moment in my life, but what I can’t understand is why it was such a needlessly unpleasant experience’ [20].

Disproportionately high rates of involuntary admissions of people from marginalised groups is also an increasingly recognised issue, reported internationally [8], including in the UK and US [21, 22]. In England, people from Black ethnic groups are 3.5 times more likely to be detained than White British people [23].

In our two previous reviews [24, 25] we reported findings from papers published in or before 2017 which explored service users’ and carers’ experiences of compulsory treatment and hospital admissions in psychiatric care. These reviews highlighted gaps in research on experiences of the assessment process for compulsory admission, and experiences of people from a minority ethnic background. We note that several recent reviews addressed stakeholder experiences, albeit dealt with either a more specific clinical group than our review [26], a more specific phase of the detention process like decision-making [12], or experiences of both voluntarily and compulsorily admitted patients [13].

Therefore, we aimed to carry out an update of our two previously published systematic reviews [24, 25] to understand the experiences specific to the formal admission process and subsequent care, including the most recent reports from contemporary mental health contexts. Using the new studies over the last 5 years, including those with a focus on specific groups (e.g. marginalised groups, forensic services) and broadening our search to also include children and young people (under 18s), we carried out a synthesis of evidence to address two research questions: (1) what are service users’ experiences of being formally assessed for involuntary hospital admission and/or legal detention in a psychiatric hospital, and (2) what are carers’ experiences of the formal assessment of their family and friends for involuntary admission and/or legal detention in a psychiatric hospital?

Methods

Protocol and registration

We prospectively registered the study protocol in the publicly accessible PROSPERO database on 30th May 2023 (CRD42023423439). The protocol differed from our previous reviews [24, 25] by including service users under 18 and their family carers. We adhered to the updated PRISMA reporting principles [27] and included the completed PRISMA Checklist 2020 in Supplementary Material.

Eligibility criteria

Inclusion criteria were peer-reviewed qualitative studies published in any language from 1st January 2018. We excluded books, systematic reviews, commentaries, editorials or grey literature such as pre-prints, dissertations, PhD theses, government reports, conference abstracts. We included studies that collected data through interviews or focus groups as well as auto-ethnographic or case studies. Studies that collected data using questionnaires or surveys were excluded. No restrictions were placed on language or country of study.

There were no age limits for participants. We included papers with service users who had been assessed for compulsory admission or legally detained to a psychiatric hospital and unpaid carers who provided practical and emotional support to such service users. Paid carers and other professionals were excluded.

Key outcomes for which data were sought were service users’ or informal carers’ experiences of either (a) assessment for compulsory admission to a psychiatric hospital, (b) legal detention in a psychiatric hospital and/or (c) appeal and tribunal processes related to detention in a psychiatric hospital. We excluded studies reporting experiences of voluntary and involuntary admission which did not separate these conditions in analyses, and studies which only reported involuntary outpatient treatment in the community.

Data sources

We searched five electronic databases (MEDLINE, PsycINFO, HMIC and Embase via the Ovid platform, and the Social Sciences Citation Index via the Web of Science platform) for articles published between 1st January 2018 and 1st March 2023 (see the search strategy for each database in Supplementary Materials). In addition, we screened the reference lists of all eligible papers for other relevant studies and carried out a forward citation search on all included papers and our previous reviews [24, 25] using Web of Science. Manual screening was completed on 6th July 2023.

Selection process

The resulting list of records was deduplicated in EndNote software before being imported into Rayyan [28] for independent screening. We piloted the inclusion and exclusion criteria on 10 titles and abstracts. All others were then screened independently by one reviewer. A second reviewer double-screened some of each reviewers’ allocation of titles and abstracts, 10% in total. Any discrepancies were resolved between the reviewers. Potentially eligible, full articles were subsequently reviewed independently by two reviewers. Uncertainties were resolved by discussion and in some cases by consultation with a third reviewer.

Data extraction

We adapted the data extraction table developed in the previous reviews for use in the current review. Data extraction was piloted and revised based on 10% included papers using Microsoft Excel. Data extraction was carried out by one member of the research team and checked for accuracy by another researcher. Extracted information included study authors, year of publication, study focus (service user, carer, or both), study setting (country and whether single-site or multi-site), total sample, gender and/or sex, age-range, ethnicity, diagnosis, method of data collection, and method of analysis. We summarised main themes identified by the authors of papers at this stage, prior to meta-synthesis of papers.

Risk of bias and quality appraisal

We used the Critical Appraisal Skills Programme [29] qualitative checklist to appraise the quality of included studies. This included an appraisal of papers along several domains covering research ethics, suitability of methods, recruitment and data collection processes, data analysis, reflection on sources of bias, clarity and validity of findings. Two reviewers conducted quality appraisal independently and discrepancies were resolved through discussion.

Assessment of confidence in findings

Two reviewers independently assessed certainty of evidence for each individual finding, defined as the sub-themes, using an adapted GRADE Confidence in the Evidence from Reviews of Qualitative research approach (GRADE-CERQual [30]). We operationalised components of the GRADE-CERQual to the context of the review as described in Supplementary Materials.

Data analysis and synthesis

We analysed findings (‘Results’ or ‘Findings’ sections extracted verbatim) from included studies using a two-stage process, informed by thematic synthesis [31]. In stage one, we developed a separate service user and carer initial coding frame to reflect the over-arching themes developed through thematic synthesis and reported in the two previous reviews [24, 25]. Following discussion and agreement by the team, we defined and added to the coding frames sub-themes implicit in the published reviews. We tested and refined the two coding frameworks and coding process by double-coding and reviewing two service user and two carer papers. Thereafter, we adopted a deductive approach to code findings from all included studies to the overarching themes. In stage two, the wider project team reviewed relevant data which could not be satisfactorily coded to existing themes and developed additional themes inductively and iteratively. We then modified the initial framework to accommodate newly identified themes and sub-themes, where necessary. All coding was carried out in NVivo 14 [32].

We planned to analyse and report findings regarding service users’ and carers’ experiences’ separately. No formal comparison of sub-groups was planned, but we identified and specifically considered findings regarding groups of people and stages of the detention process for which evidence was limited in our previous reviews [24, 25]. These included: young people, people from minority ethnic communities, and the process of assessment for compulsory admission.

Reflexivity

Our research team included people of different backgrounds with prior interest and experience in the topic of investigation. It included senior and junior researchers, people with experience of delivering and receiving mental health care, and people with different ethnic and cultural backgrounds. The team included authors with practitioner experience (psychiatry, nursing and social work), and authors with personal experience of undergoing compulsory detention, or caring for someone undergoing compulsory detention. The team met regularly to plan the study, review study screening and inclusion decisions, contribute to analysis and decisions about themes, and to comment on drafts of the paper – and thus utilised the variety of perspectives to inform the study.

Results

Search results

We report the number of studies identified, screened, and included/excluded through the database search and citation searches in the PRISMA Flow Diagram in Fig. 1. A total of 24 eligible papers were identified. Sixteen of these reported experiences of service users only, three of them of carers only. There were five additional articles that contained data regarding both groups. We report study characteristics and our thematic synthesis separately below: first from papers reporting service users’, then carers’ experiences. Papers which reported on both groups are included in both tables, with their relevant characteristics (e.g. number of service user, or carer participants) indicated where appropriate. The quality appraisal of papers is reported in Table 1. Twenty-three studies were rated as high quality, i.e. scored 7 or more on the CASP tool, and one study was rated as medium quality, scoring 4 or above, but below 7.

Fig. 1

PRISMA flow diagram

Table 1 Quality appraisal of included studies

Service users

Overview of included studies

Key characteristics of included service user papers are reported in Table 2. Most studies were conducted in Europe (UK: 7, Germany: 2, Ireland: 2, Denmark, Italy, Netherlands, Norway 1 each), whilst three were based in the US (Florida and New York) and one each in Australia, Nigeria and South Korea. All studies were published in English.

Table 2 Key characteristics of included studies: service user experiences

Sample sizes varied from 7 to 54 for service users; 13 of the 21 papers with service user experiences had a sample size of interest of 20 or less. The majority of service user papers reported on gender (n = 18), age (n = 19) and diagnosis (n = 14), but fewer reported ethnicity (n = 7). The samples included experiences from people with a variety of mental health diagnoses including but not limited to schizophrenia, depression, bipolar disorder, personality disorder.

Papers investigating service user perspectives focused on various aspects of the involuntary assessment and treatment process, e.g. looked specifically at assessment/referral experiences, admission under mental health legislation involving police, detention in general acute psychiatric hospital or forensic settings, and some had a focus on the experience of coercion, discharge or specifically the experiences of black ethnic service users in the UK.

Thematic synthesis

The review and update of the thematic framework for service user experiences has been carried out based on 21 identified papers (including 5 mixed papers on service user and carer reports). Most studies investigated either assessment or inpatient stay experience, with some focusing on more specific aspects or experiences, e.g. the nearest relative role, medication use, coercive practices, open-wards or discharge. There were two papers that looked in more detail at experiences of young people [33, 34], and one that specifically explored experiences of people from minoritised ethnic backgrounds [35]. The corresponding, updated thematic framework including in-depth sub-theme descriptions as illustrated in Table 3. Main themes and subthemes (indicated in italics) are also summarised in the text below.

Table 3 Summary of findings: Thematic framework, service user themes and sub-themes, certainty of evidence assessment

Emotional impact

Involuntary assessments and admissions were reported [36,37,38,39,40,41,42] to be met on occasions with acceptance where this involved accessing support and a safe environment. At the same time, the impact of detention [33, 34, 36, 37, 40,41,42,43,44,45,46,47,48,49,50,51,52,53,54], or more specifically the impact of coercive treatment was presented [35, 38, 42, 43, 45, 49, 51] as a typically negative, traumatic experience for many. Feelings following discharge appeared to be mixed, with reported difficulties with coping in the community and managing mental health post-discharge [34, 38, 40, 42, 48,49,50, 52].

From papers included in this review, Therapeutic benefit emerged as a new subtheme [34, 35, 38, 40,41,42,43, 46, 49, 50, 55]. This consists of service users’ views on whether their admission was necessary, helpful for their recovery or not. These reports reflected on views of treatment as un-therapeutic and traumatic, and in some cases, even counterproductive in terms of mental health:

‘…that’s the thing, it makes you feel worse afterwards than you did before. I’m sitting here, I’m more depressed and stressed coming out of that, and freaked out, than I was going in before’ [34].

Other papers reflected on some positive experiences, for example on receiving care that is needed which contributed to managing better following admissions, as illustrated by the following reflection on a ‘Living with Psychosis’ programme delivered during admission:

‘Living With uh Psychosis and stuff was really beneficial... ‘Cause it gave a lot of discussion time, and a lot of facts. And rather than just sort of sugar-coating stuff and dumbing it down, they were happy to answer questions and air anything you wanted to discuss, so that was empowering’ [50].

Impact on self-worth

In the sub-theme Power, several studies [33, 34, 37, 41, 43,44,45, 48,49,50,51, 53] reported on how admission affected people’s ability to have an influence on their progress and treatment, and the common feeling of disempowerment due to depending on staff to access basic necessities on a day to day basis, and ward routines. It was reported [34, 35, 38, 40, 42, 43, 45, 46, 51,52,53,54] that involuntary assessment and admission often led to feeling dehumanised:

‘It’s just one big black hole that assessment room they keep you in, nothing, no information as to what is going to happen, by when and who is doing it. Dump you in the room to be stared at like some sort of strange animal.’ [52].

The detention process was seen [33,34,35,36, 40,41,42,43, 45, 46, 48, 49, 52, 54, 56] as contributing to stigma, for example through being perceived less credible or as dangerous by others (e.g. in daily life, or staff on the ward) due to having a mental health condition, or being seen to be taken and/or handcuffed by police. Some studies reported on people’s experiences of positively changing perceptions of mental ill-health but this tended to be single respondents rather than the majority view [36, 42]. Social proximity of others, and recovery-based and meaningful activities whilst on the ward were reported [33,34,35, 38, 40, 50, 51, 55, 56] as having potentially positive impacts on self-esteem and independence.

Information and involvement in care

The balance between coercion, consent and choice was varied, with many accounts [33,34,35, 37, 38, 40,41,42,43,44,45,46, 49,50,51, 55] reporting service users being offered little choice or opportunity to meaningfully consent, with fewer reports of collaborative care. Healthcare staff providing information and explaining legal processes, being given better access to advocacy and other forms of representation, where available, enabled service users to exercise their rights and navigate complex legal processes according to some of the primary studies [37, 40, 42, 45], including those from forensic settings [50, 53]. These two newer forensic studies also corroborated previous findings that conflicting information about length of stay may result in increased feelings of hopelessness. Several papers also reported that information on what’s happening [33, 37, 40, 41, 43,44,45,46, 48, 51, 52] and involvement in treatment decisions [33,34,35,36,37, 40, 42,43,44, 46, 50, 51] were important aspects of service users’ admission experiences. Others suggested [34, 35, 37, 40,41,42, 46, 50, 51] the importance of the way medication was discussed, explained and administered.

Quality of relationships

Positive and negative experiences were both present in reports containing reflections on the relationship with police and emergency department staff [33, 35,36,37, 45, 49, 52, 54], and inpatient staff [34,35,36,37, 40, 43,44,45,46, 49, 51, 53, 55]. Approachable, caring, skilled communication was seen as valued in some reports, whilst experiencing inadequate, forceful, bullying behaviour from professionals was also often described. Family and friends were described as a source of emotional support and advocacy at times, although service user accounts of tension, distrust and being misinterpreted during and after admission were also often reported [34,35,36, 40, 43, 44, 46, 48,49,50,51]. Similarly, other service users could be a source of peer-support and positive social interaction, although there were also reports of potential conflict and violent confrontations, a source of fear [34, 35, 37, 41, 48, 50, 51, 53, 56]. Some of the papers in this review [34, 40, 48, 49, 51, 53, 56] also described how coping with various aspects of involuntary treatment often led to people ‘Playing ball’, a concept initially described in one of the studies [49] and included as a new sub-theme. This covers instances of people adapting their communication towards staff and others, e.g. becoming more guarded in discussing mental health symptoms openly, and increasingly self-regulating and adhering to ward routines to keep to a minimum the threat of coercion, confrontation, and lengthy admission:

‘when the doctor asked them were they still hearing the voices. In their head they’d say yeah, but then like they’d be saying no...Sometimes I say I’m better than I am... but sometimes... I’m not 100%, that’s all... They just keep you in for longer... Unless you’re right completely like, they just lock you up.’ [40].

Quality of the environment

The importance of quality of environment in police cells [36, 45, 51, 52], hospital wards [34, 35, 37, 40, 41, 49, 51, 55], forensic wards [50, 53] were discussed by several papers. It was highlighted that many aspects of the material environment (e.g. being chaotic, distressing, prison-like) needed significant improvement before being seen as a temporary place of safety or part of a therapeutic environment:

‘In psychiatry, there are conditions that need a lot of improvement and especially in closed psychiatry. So when you’re in there, it’s really terrible that the door is closed and you’re not allowed out. I wasn’t allowed out for six to seven weeks and I walked up and down like a tiger in a cage, and I found it terrible and I find it terrible every time.’ [51].

The previous review [24] reflected on the strict security measures of forensic settings being reminiscent of prison. In newer reports [50, 53] some of the risk management processes were seen as intensive but sometimes acceptable. Service users valued forensic services that were designed in a step-down fashion, embracing recovery-oriented approaches as these were seen as aiding people’s progress and preparation for life following admission.

Some identified studies suggested [34, 48, 54, 55] that meaningful activities were valued and seen as promoting recovery and reducing tension and boredom but were not always accessible. Personal safety and security were reported [34, 36, 42, 51, 53, 55] as key expectations during involuntary admissions, but experiences of aggression and assault were detailed in a number of studies.

Discrimination

Studies in this review reported service users’ experiences of different forms of discrimination in more detail then in the previous review of service users’ experiences of detention [24]. Hence this concept is discussed as a separate, new overarching theme. Related sections were coded into two subthemes, racial discrimination and equality of access.

Racial discrimination

Whilst only a few studies explicitly addressed this topic, experiences of discrimination based on race and ethnicity have been reported from three separate contexts. These included a paper on young adults’ views on police involvement in detention for psychiatric assessments [33], one on the experiences of service users of a Black ethnic background admitted to hospital under the Mental Health Act in the UK [35], and one taking place in a Dutch forensic setting [53]. In terms of police involvement in US, Florida, the original paper reported accounts of police conduct seen as disrespectful in general, but also a more specific experience of being treated differently specifically because of one’s race [33]. In the UK inpatient context, the included study reported experience of abuse and discrimination because of race, both during their treatment and in society in general [35]. In the same paper, a service user’s account also described being perceived as stronger, and subjected to harsher treatment by staff due to their race:

‘I mean we all know, there’s no point kidding ourselves, this is generally a racist country... from my experience of fifteen years of having a mental illness. Being black, you are treated as if you’re superhuman, you’ve got superhuman powers... you just get treated differently because you’re black. They [staff] assume because you’re black that you’re stronger... you can take it.’ [35].

In the Dutch forensic setting, ethnicity was described as one of several characteristics that made it more likely that a service user would be targeted by peers in a confrontative, violent manner [53].

Inequality of access

Several studies in this review contained accounts of service users receiving insufficient treatment or being unable to access care in a timely manner prior to or during compulsory admissions due to their age, gender, demographic or personal characteristics, or medical history. These related to receiving treatment from a community service, as well as accessing mental health assessment or place of safety at a time of need. Examples included difficulties in accessing after-care due to age [42], wishing to see more diverse staff to facilitate better communication, e.g. people of all genders in the police services [45], delayed service entry due to having an additional addiction diagnosis [36, 52], or young people’s mental health services not well placed to support young women with experiences of past trauma/abuse:

Younger women were very critical of support from Child and Adolescent Mental Health Services, especially with regard to sexual abuse, and nearly all the women with this history felt that statutory adult mental health services were unable to offer the help they needed to manage their dissociative episodes or address the traumas underpinning their mental-health problems: ‘[My community mental-health team] are underresourced, and in my most recent meeting with them, I was told that if I’m in crisis, the only option is to call the police!’ [36].

Pathway to admission

This theme reflects service users’ experiences of the care pathway leading to assessment or involuntary treatment. It includes instances when primary studies reported experiences that admission was unnecessary or avoidable, and whether alternatives were available and explored, or to the contrary, when compulsory admission occurred because a lack of care in the community [35, 36, 40,41,42, 49, 54]. As seen below, some studies reported a lack of access or availability of services that would be less restrictive than hospital admissions, whilst other papers reflected on experiences in which not receiving the right support (e.g. from primary physician, a community or early intervention, service) despite seeking help, led to symptoms getting worse, resulting in admission or readmission. For example, police involvement and detention followed due to inadequate responses from A&E and health emergency call centres [36], insufficient knowledge of low-threshold services by primary care physicians, or insufficient capacity of specialist outpatients’ services to support those with serious mental health issues [54]. These challenges with accessing timely crisis support in the community which might help prevent the need for detention were exacerbated for people from a range of minoritised groups, as described in the Inequality of access sub-theme above. The following account describes how mental health crises escalate due to lack of sufficient support from primary or community services:

‘Months ago when I approached my general practitioner and I said to him that I was feeling depressed, I should have got help then. Rather than when it becomes too late, so that’s where I feel I’ve been let down: I think, at that time, I feel he should have taken it more seriously.’ [35].

Carers

Overview of included studies

We included eight papers with carer participants. However, the following carer results are largely derived from six studies: three that interviewed carers only [57,58,59] and three with mixed samples of carers, service users and other stakeholders, who were interviewed or in focus groups [42, 46, 54]. Two studies with mixed samples [36, 52], both about experiences of detention with police powers and/or accessing police place of safety in England, included only one or no reference to carers in their results.

Carer study characteristics are reported in Table 4. The number of carer participants in all eight papers ranged from 3 [52] to 21 [54]. The carers were in Australia (Brisbane), England, Germany, Norway, Republic of Ireland, South Korea, and the USA (Connecticut). All had experience of caring for a family member.

Table 4 Key characteristics of included studies: carer experiences

Thematic synthesis

We coded the results sections of the included studies against a framework created to represent the overarching themes and implicit subthemes of our previous carer review [25]. The new data fitted this framework and were coded to all the deductively derived sub-themes except one, Hope. Because of the consistency of the new data with the previous review no new overarching themes were developed inductively. However, we have fresh examples, from the perspectives of the new studies, to illustrate the five main themes, and we have identified some new sub-themes. The words in bold relate to sub-theme headings listed in Table 5.

Table 5 Summary of findings: Thematic framework, carer themes, sub-themes, certainty of evidence assessment

Emotional impact of detention

Carers experienced a range of conflicting emotions around detention.

Negative emotions

Carers reported fear about service users’ symptoms and behaviour prior to detention [57, 58], high stress and hypervigilance in the build-up to a service user’s crisis [59]; and frustration when health professionals ignored or ‘failed to grasp the gravity of the service user’s illness’ [57]. Carers felt bad about initiating coercive measures [46] and found assessment distressing [57], and admission traumatizing [58].

‘The actual sectioning process was about as horrible as it ever could have been. It was possibly the worst experience of my life…’ (carer, England [57]).

Relief

Following admission, some carers felt some relief because they were reassured that the risk of harm to self or others had been averted, and the service user was now safe and in receipt of care [57,58,59]. Other examples of relief arose from receiving information about the illness [59]; being named as Nearest Relative (a defined close relative in the English Mental Health Act whom clinicians have a duty to consult during the process of assessment for compulsory admission) rather than another family member [57]; and when someone else initiated detention [58].

‘A member of the public called in once. I felt relieved it wasn’t us that time. When he recovered, we could face him and tell him we had nothing to do with it.’ (carer, Ireland [58].

Adverse effect on carer wellbeing

Carers talked about carrying a ‘burden of disease’ for years without the prospect of improvement [46]. Personal uncertainty, disagreements with other family members about the right course of action, and differences between what the person they cared for wanted and what was in their best interests, all took a toll on carer wellbeing [57, 58].

‘As I’m leaving he’s crying out, “Mom, why you doing this to me? I don’t want to be here, don’t leave me here.”’ (mother, Ireland [58]).

Carers were fearful about what would happen if the service user refused treatment (Jaeger) and, in contrast to the relief following admission reported above, some carers remained fearful for their relative’s safety amongst other inpatients [59].

Availability of support for carers

Carers own health

For their own health, carers need support to be offered proactively, before, during and after detention, to help them make sense of the illness, deal with stress, and accept their situation [46, 57].

‘One minute there were police cars and half a dozen doctors and lots of shouting and kind of stuff going on and then the next minute I was just here on my own and that was a bit kind of challenging, difficult.’ (Carer participant [57]).

One carer suggested involving the whole family as a ‘more well-rounded approach to recovery’ because the whole family can be affected by the illness and detention [58].

Lack of information

Carers reported that there was a lack of information and guidance from health services as they managed a family member with deteriorating health and sought help [54, 58].

‘The whole [assessment] experience was pretty traumatic really I suppose. There should be more support actually for me or actually tell me what I need to do to support him.’ (carer, England [57])

Other sub-themes below, Information sharing and Confidentiality, reflect the provision of information following involuntary admission.

Too much responsibility

Carer participants expressed a sense of duty towards their family member which they willingly took on [57]. While some carers initiated or advocated for admission [46], some also remained vigilant to protect their relative following admission and resumed 24-hour responsibility following discharge [59]. For example, several service users in one study depended on their carer as their only social network [54].

‘The phone calls, oh, they’ve taken an overdose or I’m going to go under a bus or—they [health professionals] don’t seem to have any real regard for the fact that there are people out here that are having to deal with all this stuff.’ (carer, Brisbane, [59])

Carer involvement in decision making and care

Recognising carer expertise

Carers’ familiarity with the relative they care for, having been with them when they were well and during previous episodes of illness, and knowing the circumstances of the latest admission, gives carers expertise [46, 57, 58].

‘He’s been with me all his life.’ (participant 9 [57])

‘I know what she was like before.’ (sister [46])

Carers said that they want their knowledge and experience of caring to be recognised and valued by health professionals and to be included as partners in care, informing treatment decisions and continuing to provide emotional support [58, 59].

‘Participants described the importance of the treating team recognising the critical role they played in their relative’s life. Many reported being treated as a nuisance.’ [59].

Maintaining dialogue

Following involuntary admission carers reported that they tried to maintain dialogue with hospital staff and participate in treatment and discharge decisions but were often not being heard [46, 59]. In England, even carers formally identified as the Nearest Relative were not always consulted. This left them uncertain about the purpose of the role and feeling it was not taken seriously [57].

‘Nearest Relatives are not routinely consulted or provided with information once the hospital admission takes place.’ (England, [57])

Sharing information

To maximise treatment and recovery, carers want to share information and described the importance of receiving information from clinicians about the illness and the service user’s progress. Carers frequently reported the absence of information about inpatient treatment decisions, medications, transfers, or discharge, even when the service user was being discharged to their care [46, 57,58,59].

‘While the treatment team relied on them for information, they were not informed about their relatives’ progress in return.’ [59].

Carers who received more information about the condition of the person they care for were more confident in dealing with symptoms after discharge [59].

Confidentiality

Like carers in the previous review [25], carers in recent studies recognised that staff were constrained by service users’ rights to confidentiality, but expressed frustration that they were given no sense of their family member’s progress during the period following involuntary admission to hospital [57]. Carers stated that confidentiality prevented them from receiving information that would help them take care of their relative [58].

‘Some disclosed that this [confidentiality] clause was being used purposively to inhibit family involvement. Furthermore, a subsection of these caregivers stated that being denied access to such information went against their rights.’ [58].

Power dynamics

Carers described experiences of power in their role. For example, leveraging a service user’s economic dependency to make them engage in treatment [46], or initiating the detention.

‘Caregivers predominantly viewed their relative’s admission as forced and imposed by them rather than led by the service user or mental health services.’ [58].

Some carers felt distressed that their powers as a Nearest Relative (to request a mental health assessment or discharge) unbalanced their relationship with their relative and hoped that the imbalance would be temporary [57]. Many carers felt an overall sense of powerlessness as they supported their family member through episodes of illness.

Carer relationships

Relationships with health professionals

Reports of the relationships between carers and health professionals were mixed. Some carers appreciated experiences of staff generosity, patience, and kindness towards service users [57, 58].

‘One participant praised the AMHPs [Approved Mental Health Professionals – clinicians involved in assessment for detention in hospital in England] she had spoken to as being ‘fair’ and ‘lovely’’ [57].

Other carers struggled to get medical attention in the community and spoke of health professionals failing to listen and lacking empathy. Following admission carers wanted to work in partnership with hospital staff, but some described staff as not having enough time to talk to them [46, 57,58,59].

Mediation

Some carers described mediating between the person they care for and health professionals. In Brisbane, carers who did not believe that their family members were safe in hospital felt that they had to actively advocate on their behalf.

‘If you haven’t got someone fighting from the outside inwards, well you’re just left to your own devices. […] If she did not have any visitors, she could be bruised and bullied.’ (carer, Brisbane [59]).

In Germany, carers took an intermediary role, “translating the perspectives of each side to the other” when the relatives they cared for refused to speak directly to hospital staff [46]. Carers in England who had the role of Nearest Relative found themselves torn between honest communication with health professionals and loyalty to their family members’ wishes [57].

Family relationships

Carers spoke of trying to make sense of the illness in the context of family relationships.

‘Some interviewees reflected on their family relationships. They suspected that this also played a role in the behaviour of their ill family member.’ [46].

In some instances, the failure of other family members (other than the carer) to recognise the illness was a barrier to seeking help [58].

As in the previous carer review [25], some studies described communication breaking down between carers and service users following involuntary admission: mistrust and rejection by service users; losing touch; or carers cutting off contact after admission [42, 46, 58].

In England, no carer participant with the role of Nearest Relative thought that the role should be given to anyone outside the family, even if their relationship was no longer a close one [57].

Quality of care

Leading up to detention

Several studies describe insufficient community services which, instead of acting proactively in the early phases of the illness, dismissed carer concerns until the service user was acutely unwell [54, 57, 58]. One participant was concerned that ‘undue focus on the service users’ rights and wishes may have acted against their best interests in the long run’ [57].

Some carers reported that pathways to care were inadequate. In Norway, carers and other stakeholders said that GPs had neither the time to properly conduct mental health assessments nor sufficient knowledge of primary care alternatives to hospital admission [54]. Another study [42] also describes a lack of community alternatives to admission in South Korea.

As well as lack of access to community crisis services, cumbersome processes for initiating involuntary admission were seen as a barrier to timely detention:

‘the need for a full medical assessment in service users who are acutely mentally unwell and have a standing history of mental illness’, and in Connecticut ‘caregivers argued against the need for probate court hearings in order to obtain a commitment order’ [58].

Other systemic barriers to treatment were reported: poor collaboration between primary and secondary services in Norway [54]; disagreements between public and private services in Ireland; and catchment areas for specialist services in Ireland and the United States [58].

Detention process

Carers and service users in England were appreciative of the ‘swift, effective, and compassionate interventions’ made by a Street Triage pilot in Sussex: a car crewed by a police officer and a mental health nurse [36]. Carers in Ireland said emergency departments were unsuitable for mental health assessments. ‘Some caregivers reported that their relative was treated fairly and respectfully during the admission’ and others described the detention process ‘as clinical and devoid of compassion’ [58]. In Brisbane a carer expressed concern about how involuntary admission was managed:

‘I didn’t have problems with the involuntary treatment. Without the involuntary treatment […] how would she have gotten the treatment? But it’s just how the service provider carried it out [which] is probably the bigger issue.’ (carer, Brisbane [59])

In South Korea, there was an example of delayed treatment because of the new detention requirement for the consent of two legal guardians [42].

Care in hospital

Some carers described being intimidated by the ward environment and overwhelmed by the levels of distress they witnessed. Carers wanted to know that their relatives are safe and receiving care to help them recover, but some carers did not believe that the hospital met their relative’s needs and did not trust the treatment provided. They thought their conceptualization of the problem to be treated differed to that of health professionals. Many carers were critical of the focus on and adequacy of medication without talking therapies and attributed ‘impairments of functioning’ to medication [46, 59].

‘All she does is see a doctor once or twice a week. There’s no counsellor brought in […] She seriously needs to talk to somebody, not for 10 minutes, how you’re going, how you’re feeling, are you still seeing anything? That’s all she gets. She’s never actually sat down with anybody and just talked about anything.’ (carer, Brisbane [59])

Discharge processes

Recent studies reported the importance of processes and supports to help carers prepare for discharge but, like the previous review [25], many carers reported that they were informed about discharge at the last minute when neither the service user nor family was ready [59].

‘No discharge plan or anything. They didn’t even explain the medications to us, how he would take it, what times to give it to him. Just said ‘Bye’. They gave us a bag of medication.’ (carer, Brisbane [59])

Some carers did not believe that their relative was ready for discharge and were concerned about their own ability to cope with the service user’s ‘continued impairment’ or the ‘additional burden’ when a service user who refuses medication is discharged without treatment. Some described the distressing difficulty of trying to obtain outpatient aftercare [46, 58, 59]. In South Korea it was reported that:

‘family members often want the patient to be readmitted or taken to another mental health care facility, rather than living together.’ [42].

Carers in Connecticut and Ireland spoke of their desire for crisis planning and advance directives to prepare for possible future readmissions [58].

Impact of coercion

Service users’ experiences of being detained in public, or roughly handled, or being subjected to coercive measures during admission and treatment have consequential impacts on carers too. Carers had difficulties arising from their relatives’ subsequent fear and unwillingness to seek help and engage with services, withdrawing and keeping their distance from carers; being guarded and masking their symptoms during assessments [46, 54, 57, 58]. In one study carers recognised that coercion might lead to short-term improvement but:

‘the effect was unsustainable and had not changed the insight, and because of this experience, patients were even more negative regarding compliance with treatment recommendations.’ [46].

Certainty of evidence

Certainty of evidence has been reviewed and appraised for each sub-theme, reported separately for service user and carer findings in Table 3. and 5. respectively. There were 28 service user sub-themes, in which we rated overall confidence as high [10], moderate [13], low [3], or very low [2]. For the 19 carer sub-themes, we rated overall confidence as high [13], moderate [4], or low [2]. Decisions for lowering confidences were most commonly due to minor or moderate concerns due to relevancy of evidence, coherence of finding, and/or adequacy of data, as documented in Table 3 and 5.

Discussion

Main findings

In our two earlier reviews [24, 25] service users primarily reflected on inpatient experiences, whilst data from carers described struggles to find health service support prior to detention and following discharge. In the current update we found a greater overlap in content: both service user and carer data included reflections on experiences of pathways to admission, the extent of therapeutic benefit from inpatient treatment, the frequent experience of coercion and its consequences for future engagement with health services. Studies included in this update also report on recent developments in mental health practice such as crisis planning, advanced directives and street triage, and changes to mental health legislation.

Our findings suggest that the experience of involuntary treatment and compulsory admissions is an often predominantly negative, at times traumatic experience for service users and carers, not always achieving the expected therapeutic benefit. A variety of factors are reported to contribute to this, including the use of coercive practices, too much focus on pharmaceutical treatments, lack of access to psychological and other therapies, uncaring staff attitudes, or a lack of a calm, therapeutic ward environment. Compulsory admissions are often associated with experiences of coercion, and variable but often low levels of involvement in decision making processes, which can both affect the perceived effect of hospital treatment [13]. Involuntary treatment may be a particular source of tension as staff are providing care to which service users may not have the capacity to consent or are adamantly opposed to. Thus, delivering acute mental health services in a collaborative, non-coercive manner in this environment may be a particular challenge.

Our findings indicate that reliance on the use of coercive methods can be therapeutically counterproductive. In order to minimise experiences of coercion, service users may be motivated to minimise their symptoms and difficulties in discussion with health professionals and family members. Experiences of coercion may in turn make it less likely for people to seek or engage with subsequent treatment, corresponding with other findings (e.g. [1]). Bad experiences of detention and coercive treatment impacts on carers too. If service users mask their symptoms, stay guarded and ‘keep their distance’ as a way of avoiding further bad experiences, it is more difficult for carers to get help for them when needed. In addition to an effect on therapeutic relationships, coercion may also affect family dynamics. Carers described a need for support for themselves at the moment of admission and over time as they assist their family member in managing their mental health for years.

Our synthesis also highlighted some positive experiences during compulsory treatment, for example feeling relief, receiving help to manage symptoms, or family members accessing support. The finding that service users’ views on therapeutic benefit were mixed mirrors previous findings with service users’ groups of varying diagnoses (e.g. [26, 60, 61]). In our review, service users reflected positively on being listened to, experiencing flexibility, being offered options. At the same time, the opposite was also commonly experienced: not being heard, lacking control over treatment, similarly to previous reports [62]. Studies in our review highlighted how staff attitudes (e.g. being respectful, caring, communicating well, empowering) could have an impact on how people saw their treatment and the degree of coercion.

Service user and carer accounts also reflected on the importance of pathways leading to hospital admissions. Several instances were highlighted when either a lack of alternatives to inpatient services, or professionals’ lack of mental health awareness may have escalated a crisis and contributed to involuntary admissions. In contrast, efficient collaboration between services was also noted by participants as a positive experience. An example of this is increasing coordination between mental health and law enforcement services when responding to crises, which is seen as potentially reducing the use of place of safety and police custody facilities in the UK [63].

Some service user reports referred to experiences of racial discrimination, and other inequalities (e.g. due to age, dual diagnosis etc.) in accessing services. This finding is more explicit in our review of recent studies than in previous reviews [24, 25], although it is notable that only a few papers addressed or specifically investigated the experiences of people with marginalised ethnic backgrounds. We note that initiatives to reduce racial discrimination and imparity are seen as increasingly important [10, 47], and should be reflected in additional resources for research and changes to practice in this area. There were only a couple of studies [32, 33] reporting on the experiences of young adults (16 to 27 years of age), with reported experiences mapping closely onto those of other ages.

Whilst our themes and subthemes reported here are focused on the experiences of formal compulsory admissions, we also noted some of the more recent reports [33, 46, 51] described instances when service users underwent treatment whilst technically a voluntary service user, but due to fear of coercion and thus de facto detained.

Implications for policy and practice

Although compulsory admissions are an inherently coercive and often aversive situation, service user and carer accounts suggest that there are ways of improving experience and potential therapeutic potential, and address other issues such as inequality and discrimination:

• 1. Power, agency and choice were highlighted as important aspects of compulsory admission experience. Increased focus on supporting decision making may be particularly effective, given that many involuntarily admitted service users may have capacity to consent [64], for example by initiatives to provide supported involvement in treatment decisions from early stages of compulsory admissions [65]. Additionally, for people experiencing readmission, advance directives and similar tools may support discussion of previous treatment experiences, accessing early support, or reducing the use of coercive practices [47, 66]. Evidence shows that care planning and advance statements are effective in reducing detentions [67, 68]. Broader use of these initiatives could address this aspect of service user experiences, whilst research is also needed to understand their implementation, and how they work for marginalised groups who may need them most. Providing information in a timely manner during all key stages to the admission process can also have a positive, empowering effect on both service users and carers [2].

• 2. Service user and carer voices highlighted the importance of working with respectful, engaged, kind staff. This corresponds with earlier qualitative work identifying service users’ desired qualities in mental health staff [69], emphasising the importance of empathy, kindness, respect, effective communication and fostering hope. These qualities have also been identified as facilitators of meaningful service users and staff relationships, and thus supporting meaningful therapeutic engagement [70]. Addressing staff shortages, and recruitment and retention of staff with suitable personal characteristics seems important, as it may ameliorate otherwise often negative treatment experiences in the context of compulsory admissions and frequent use of coercive means. Training for mental health and other emergency staff in de-escalation [10], or increasing primary care practitioners’ mental health awareness [71] may also improve access and the quality of initial contact with treatment providers.

• 3. Service users and carers both identified missed opportunities to avoid detentions. Community-based alternatives to admission such as crisis houses, crisis resolution teams and acute day services may be beneficial both for the individual and the wider community, and wider implementation may have potential to reduce involuntary admissions [5, 12]. Both the quality and intensity of upstream community care and availability of community crisis alternatives have been linked to compulsory admission rates [7], highlighting the need for proactive, well-resourced community care. Initiatives to enhance both crisis planning and ongoing monitoring and support post-discharge are of high interest as a potentially effective means to prevent repeat detentions [72, 73].

• 4. Addressing any inequalities of access to services and reducing racial discrimination and disparities appears to be a key issue to address across several mental health systems [21, 22, 74, 75]. Service users from minoritised ethnic groups reported experiences of racism and unfair treatment, thus efforts to promote equality, diversity and inclusion and anti-racist practice are needed, a recent example of which is the Patient and Carer Race Equality Framework in England and Wales [76].

Implications for research

The identified literature reflected accounts and views of some, but not all groups of service users who undergo compulsory admissions. In addition to the low number of papers on experiences of people from ethnic minority backgrounds and young people, a gap highlighted already in our previous reviews [24, 25], more research is needed to understand the experiences of other seldom-heard groups e.g. those with intellectual disabilities, autism, speech impairments, and/or in long-term inpatient care.

With the increase of community crisis service models in recent years [77, 78] we need more evaluation studies to determine which might be most effective in reducing admissions and detention. This could reduce the number of instances in which opportunities to avoid compulsory hospital admissions are missed, a possibility that was identified by papers we reviewed. A clear effect of such alternatives on involuntary admissions has, however, yet to be demonstrated [67], thus, refining such models to ensure a clear focus on people whose history or the severity of their difficulties suggests they are at risk of compulsory admissions is a potentially fruitful direction for service development and research.

Many of the expressed wishes of service users and carers summarised in this review – for clear communication and a chance to be heard, for fairness and respect and some choice and control – map on to the components of procedural justice [79]. Procedural justice focuses on perceptions of perceived control and fairness in the process, rather than the outcomes of a situation. It is theorised as comprising four components: allowing citizens a voice; perceived neutrality in decision-making; demonstrating dignity and respect during interactions; and having trustworthy motives. In mental health inpatient contexts, perceived procedural justice is associated with less perceived coercion [80] and better therapeutic alliance with staff [81]. Development and evaluation of interventions specifically designed to enhance procedural justice in the assessment and compulsory detention processes are of high interest. Recent examples of this include crisis planning and monitoring for detained patients initiated in hospital [72], or supporting involvement in treatment decisions from early stages of compulsory admissions [65].

Strengths and limitations

We used robust systematic search methodologies and followed established guidelines both for newly published primary research and for synthesising results. We have included recent studies that allowed corroborating and refining findings from previous systematic reviews and identify relevant new themes. Our review also reported findings from service user and carer groups that were present less in previous works, for example people from marginalised ethnic backgrounds. Our team had a diverse set of skills to draw on including researchers with lived experience, which informed the depth of our analysis, interpretation, and writing of the manuscript. In order to minimise the loss of potentially relevant studies, we included findings from papers reporting on both voluntary and involuntary service user experiences, if involuntary experiences were clearly identified, but excluded studies where reporting of the views of these two different service users groups could not be distinguished.

The use of qualitative synthesis methods may have led to the loss of more nuanced information on service user and carer experiences available in individual primary studies. There were only a few new studies available on the compulsory admission experience of ethnic minorities, or young people. Similarly, only three papers focused specifically on carers’ experiences, suggesting a necessity of further research in these areas. Our review focused on the experience of compulsory admission under mental health legislation, thus it did not fully explore involuntary treatment experiences when formally voluntary service users encounter coercive practices and undergo forced treatment despite their status. We also acknowledge that lived experience involvement could have been heightened by involvement in the earlier stages of the project, for example when drafting the review protocol. In line with our original reviews we focused on data collected qualitatively via interviews and/or focus groups to reflect rich, in-depth research about patients’ and carers’ experiences, although due to this relevant information from free-text responses to surveys may have been excluded. Evaluation of certainty of evidence for pre-existing themes has been carried out on newer information only, as the use of GRADE-CERQual was not a PRISMA recommendation at the time of the original review.

Conclusion

Findings from our updated qualitative synthesis suggest that service users’ and carers’ experiences of compulsory admission processes are varied, predominantly negative. The often negative impact of coercive measures have been reported across most studies, and more recent literature also allowed to reflect on experiences of racial discrimination, inequality of access, and quality community care being seen as an alternative to detention in hospital.

A staff approach to service users that is both collaborative and kind appears to be important even if in the context of significant coercion and/or in instances when the person does not have the capacity to take part in treatment decisions. Positive accounts reported suggest that the experiences of compulsory admissions are also improved by professionals doing their best to inform at all stages of the admission. Mental health staff can positively affect treatment experience by being kind, offering choices where they can even if the situation seems dire, and involving service users and carers proactively in treatment decisions as and when possible. Community alternatives of inpatient care may also contribute to and lead to better overall treatment experiences.

Lived experience commentary

by Karen Machin, Patrick Nyikavaranda and Tamar Jeynes

This revised review builds upon two previous reviews by the same team from 2018. These earlier reviews, enriched by lived experiences commentaries, identified a pressing need for enhancing patient and carer experiences. They also highlighted the sluggish pace of translating knowledge into practical action. Regrettably, this latest review offers minimal new insights. However, it does underscore the counterproductive nature of over-reliance on coercive methods in care. The review acknowledges that while some may find solace in any support, it’s deeply troubling that issues like racial discrimination, unequal access, and general dissatisfaction have become more pronounced in recent years.

Notably, research by Morris et al. [82] suggests that it can take up to 17 years for research findings to be implemented in clinical practice. We cannot continue to wait. Urgent action is needed to enhance the experience of detention and, or even, dare we say it, earlier supportive interventions. This could address the immediate needs of individuals and potentially reduce the frequency of detentions.

As authors, we might argue that one way to promote change might be for researchers, funders, policymakers, and practitioners to finally act on what people with lived experience tell them they need. The current review suggests several improvements, including the provision of community-based alternatives to detention and the availability of family support. Additionally, it highlights the critical need for genuine cultural awareness training, moving beyond mere procedural compliance.

The numerous television exposes and media reports depicting the harrowing experiences within inpatient wards have understandably deterred many from seeking voluntary support. It is disheartening that this systematic review merely reiterates what service users and carers have long known: significant change is imperative. Perhaps the time has come for service users and carer groups to be more active in setting research agendas and conducting research themselves.