The development and validation of the Brief Experience of Caregiving Inventory (BECI).

BACKGROUND: The social network supporting an individual with psychosis may be adversely affected by the experience of caregiving. The Experience of Caregiving Inventory (ECI) is 66 item self-report measure of the impact of caregiving for carers of people diagnosed with psychotic disorders. This study aimed to create a brief version of the ECI, and evaluate its reliability and validity (n = 626). METHODS: The validation process was conducted through a Multidimensional Item Response Theory (MIRT) approach, using a graded response model and a complementary network approach. RESULTS: This resulted in a 19 item, four factor inventory with a good model fit, displaying good reliability and validity. CONCLUSION: The BECI is a valid measure. The simplicity, ease of application and robust psychometric properties further enhances its acceptability and usefulness as a brief measure in clinical research and trials, as well as in routine practice providing reliable and valid data on experience of caregiving in families of an individual with psychosis.

Informed, advance refusals of treatment by people with severe mental illness in a randomised controlled trial of joint crisis plans: demand, content and correlates.

BACKGROUND: In the UK, crisis planning for mental health care should acknowledge the right to make an informed advance treatment refusal under the Mental Capacity Act 2005. Our aims were to estimate the demand for such treatment refusals within a sample of service users who had had a recent hospital admission for psychosis or bipolar disorder, and to examine the relationship between refusals, and service user characteristics. METHODS: To identify refusals we conducted content analysis of Joint Crisis Plans, which are plans formulated by service users and their clinical team with involvement from an external facilitator, and routine care plans in sub-samples from a multi-centre randomised controlled trial of Joint Crisis Plans (plus routine mental health care) versus routine care alone (CRIMSON) in England. Factors hypothesised to be associated with refusals were identified using the trial data collected through baseline interviews of service users and clinicians and collection of routine clinical data. RESULTS: Ninety-nine of 221 (45%) of the Joint Crisis Plans contained a treatment refusal compared to 10 of 424 (2.4%) baseline routine care plans. No Joint Crisis Plans recorded disagreement with refusals on the part of clinicians. Among those with completed Joint Crisis Plans, adjusted analyses indicated a significant association between treatment refusals and perceived coercion at baseline (odds ratio = 1.21, 95% CI 1.02-1.43), but not with baseline working alliance or a past history of involuntary admission. CONCLUSIONS: We demonstrated significant demand for written treatment refusals in line with the Mental Capacity Act 2005, which had not previously been elicited by the process of treatment planning. Future treatment/crisis plans should incorporate the opportunity for service users to record a treatment refusal during the drafting of such plans. TRIAL REGISTRATION: ISRCTN11501328 Registered 13th March 2008.

We should replace conventional mental health law with capacity-based law.

As general medicine moves away from 'paternalism' and places an increasing emphasis on patient choice and autonomy, George Szmukler and Brendan D. Kelly debate whether conventional mental health legislation should be replaced with a model that focuses on the person's decision-making capabilities.

Barriers to shared decision making in mental health care: qualitative study of the Joint Crisis Plan for psychosis.

BACKGROUND: Despite increasing calls for shared decision making (SDM), the precise mechanisms for its attainment are unclear. Sharing decisions in mental health care may be especially complex. Fluctuations in service user capacity and significant power differences are particular barriers. OBJECTIVE AND DESIGN: We trialled a form of facilitated SDM that aimed to generate patients' treatment preferences in advance of a possible relapse. The 'Joint Crisis Plan' (JCP) intervention was trialled in four mental health trusts in England between 2008 and 2011. This qualitative study used grounded theory methods to analyse focus group and interview data to understand how stakeholders perceived the intervention and the barriers to SDM in the form of a JCP. RESULTS: Fifty service users with psychotic disorders and 45 clinicians participated in focus groups or interviews between February 2010 and November 2011. Results suggested four barriers to clinician engagement in the JCP: (i) ambivalence about care planning; (ii) perceptions that they were 'already doing SDM'; (iii) concerns regarding the clinical 'appropriateness of service users' choices'; and (iv) limited 'availability of service users' choices'. Service users reported barriers to SDM in routine practice, most of which were addressed by the JCP process. Barriers identified by clinicians led to their lack of constructive engagement in the process, undermining the service users' experience. CONCLUSIONS: Future work requires interventions targeted at the engagement of clinicians addressing their concerns about SDM. Particular strategies include organizational investment in implementation of service users' choices and directly training clinicians in SDM communication processes.

Impact on the individual: what do patients and carers gain, lose and expect from being involved in research?

BACKGROUND: Study feasibility and deliverability can benefit from involving patients and carers in the research process, known as patient and public involvement (PPI). There is less evidence on the experiences of patients and carers themselves and we require more information across a range of studies, health conditions and research stages. AIMS: This study explored how patients and carers in eight diagnostic research specialties have been involved in research, their motivations and the impact involvement had on them. METHOD: 143 patients and carers across the Clinical Research Network (CRN) responded to an online semi-structured questionnaire (developed using participatory methodology). Quantitative and qualitative data were analysed. RESULTS: A range of benefits were reported, including providing a life focus and an improved relationship with illness. Less positive experiences regarding time and money and lack of acknowledgement were also reported, along with suggestions for improvement. CONCLUSIONS: PPI confers many benefits on patients and carers which could increase PPI recruitment if made explicit. More involvement in study recruitment and dissemination would increase the effectiveness of PPI input. Involving a more varied socioeconomic demographic and at an earlier stage is vital. Financial support for lower earners and greater feedback following involvement should also be explored.

Improving Therapeutic Relationships: Joint Crisis Planning for Individuals With Psychotic Disorders.

Outcomes for individuals with psychosis remain far from acceptable. Recently, prominent psychiatrists have called for an improved understanding of the impact of social contexts, and how social contexts might influence the development and maintenance of mental health problems. A key social context for individuals with psychosis is the therapeutic relationship. As part of a trial of joint crisis planning in England, this qualitative study aimed to determine the mechanism through which joint crisis planning might affect the therapeutic relationship. Results suggest that routine processes in mental health care are affected by policy and organizational requirements for risk mitigation-aspects that undermine person-centered approaches. In contrast, strong therapeutic relationships are characterized by individualized care and reliable and respectful treatment. The Joint Crisis Plan intervention partially succeeded in reducing contextual influences on routine role enactments, facilitating the demonstration of respect and improving the therapeutic relationship.

Clinical outcomes of Joint Crisis Plans to reduce compulsory treatment for people with psychosis: a randomised controlled trial.

BACKGROUND: The CRIMSON (CRisis plan IMpact: Subjective and Objective coercion and eNgagement) study is an individual level, randomised controlled trial that compared the effectiveness of Joint Crisis Plans (JCPs) with treatment as usual for people with severe mental illness. The JCP is a negotiated statement by a patient of treatment preferences for any future psychiatric emergency, when he or she might be unable to express clear views. We assessed whether the additional use of JCPs improved patient outcomes compared with treatment as usual. METHODS: Patients were eligible if they had at least one psychiatric admission in the previous 2 years and were on the Enhanced Care Programme Approach register. The study was done with 64 generic and specialist community mental health teams in four English mental health care provider organisations (trusts). Hypotheses tested were that, compared with the control group, the intervention group would experience: fewer compulsory admissions (primary outcome); fewer psychiatric admissions; shorter psychiatric stays; lower perceived coercion; improved therapeutic relationships; and improved engagement. We stratified participants by centre. The research team but not participants nor clinical staff were masked to allocation. This study is registered with ClinicalTrials.gov, number ISRCTN11501328. FINDINGS: 569 participants were randomly assigned (285 to the intervention group and 284 to the control group). No significant treatment effect was seen for the primary outcome (56 [20%] sectioned in the control group and 49 [18%] in the JCP group; odds ratio 0·90 [95% CI 0·58-1·39, p=0·63]) or any secondary outcomes, with the exception of an improved secondary outcome of therapeutic relationships (17·3 [7·6] vs 16·0 [7·1]; adjusted difference -1·28 [95% CI -2·56 to -0·01, p=0·049]). Qualitative data supported this finding. INTERPRETATION: Our findings are inconsistent with two earlier JCP studies, and show that the JCP is not significantly more effective than treatment as usual. There is evidence to suggest the JCPs were not fully implemented in all study sites, and were combined with routine clinical review meetings which did not actively incorporate patients' preferences. The study therefore raises important questions about implementing new interventions in routine clinical practice. FUNDING: Medical Research Council UK and the National Institute for Health Research.

When psychiatric diagnosis becomes an overworked tool.

A psychiatric diagnosis today is asked to serve many functions-clinical, research, medicolegal, delimiting insurance coverage, service planning, defining eligibility for state benefits (eg, for unemployment or disability), as well as providing rallying points for pressure groups and charities. These contexts require different notions of diagnosis to tackle the particular problem such a designation is meant to solve. In a number of instances, a 'status' definition (ie, a diagnostic label or category) is employed to tackle what is more appropriately seen as requiring a 'functional' approach (ie, how well the person is able to meet the demands of a test of performance requiring certain capabilities, aptitudes or skills). In these instances, a diagnosis may play only a subsidiary role. Some examples are discussed: the criteria for involuntary treatment; the determination of criminal responsibility; and, assessing entitlements to state benefits. I suggest that the distinction between 'status' versus 'function' has not been given sufficient weight in discussions of diagnosis. It is in the functional domain that some of the problematic relationships between clinical psychiatry and the social institutions with which it rubs shoulders are played out. A status, signified by a diagnosis, has often been encumbered with demands for which it is poorly equipped. It is a reductive way of solving problems of management, allocation or disposal for which a functional approach should be given greater weight.

What service users with psychotic disorders want in a mental health crisis or relapse: thematic analysis of joint crisis plans.

PURPOSE: Recent legislation and guidance in England emphasises the importance of service user choice in care planning. However, it is not obvious how best to facilitate choices in care planning, and some clinicians are concerned that service users may make 'unwise' decisions. This study aimed to examine mental health service users' preferences and priorities in the event of a future mental health crisis or relapse. METHOD: Thematic analysis of 221 joint crisis plans (JCP) developed by service users and their clinical team as part of the CRIMSON randomised controlled trial. Participants had a diagnosis of a psychotic disorder, at least one psychiatric admission in the past 2 years, contact with a community mental health team, and complex care needs. RESULTS: Two major categories of preferences were identified: first the manner in which crisis care would be delivered; and second, specific treatment interventions. Most service users requested full involvement in decisions about their care, clear and consistent treatment plans, access to familiar clinicians who knew them well, and to be treated with respect and compassion. Some service users requested hospitalisation, but the majority preferred alternatives. The most frequently preferred intervention was care by a home treatment team. Just under half made a treatment refusal, the majority being for specific medications, alternatives were offered. CONCLUSIONS: Joint crisis planning resulted in service users making choices that were clinically reasonable. The technique employed by JCPs appeared to empower service users by engaging them in a productive dialogue with their clinicians.

Decision-making capacity for treatment in psychiatric and medical in-patients: cross-sectional, comparative study.

BACKGROUND: Is the nature of decision-making capacity (DMC) for treatment significantly different in medical and psychiatric patients? AIMS: To compare the abilities relevant to DMC for treatment in medical and psychiatric patients who are able to communicate a treatment choice. METHOD: A secondary analysis of two cross-sectional studies of consecutive admissions: 125 to a psychiatric hospital and 164 to a medical hospital. The MacArthur Competence Assessment Tool - Treatment and a clinical interview were used to assess decision-making abilities (understanding, appreciating and reasoning) and judgements of DMC. We limited analysis to patients able to express a choice about treatment and stratified the analysis by low and high understanding ability. RESULTS: Most people scoring low on understanding were judged to lack DMC and there was no difference by hospital (P = 0.14). In both hospitals there were patients who were able to understand yet lacked DMC (39% psychiatric v. 13% medical in-patients, P<0.001). Appreciation was a better 'test' of DMC in the psychiatric hospital (where psychotic and severe affective disorders predominated) (P<0.001), whereas reasoning was a better test of DMC in the medical hospital (where cognitive impairment was common) (P = 0.02). CONCLUSIONS: Among those with good understanding, the appreciation ability had more salience to DMC for treatment in a psychiatric setting and the reasoning ability had more salience in a medical setting.

Joint crisis plans for people with borderline personality disorder: feasibility and outcomes in a randomised controlled trial.

BACKGROUND: People with borderline personality disorder frequently experience crises. To date, no randomised controlled trials (RCTs) of crisis interventions for this population have been published. AIMS: To examine the feasibility of recruiting and retaining adults with borderline personality disorder to a pilot RCT investigating the potential efficacy and cost-effectiveness of using a joint crisis plan. METHOD: An RCT of joint crisis plans for community-dwelling adults with borderline personality disorder (trial registration: ISRCTN12440268). The primary outcome measure was the occurrence of self-harming behaviour over the 6-month period following randomisation. Secondary outcomes included depression, anxiety, engagement and satisfaction with services, quality of life, well-being and cost-effectiveness. RESULTS: In total, 88 adults out of the 133 referred were eligible and were randomised to receive a joint crisis plan in addition to treatment as usual (TAU; n = 46) or TAU alone (n = 42). This represented approximately 75% of our target sample size and follow-up data were collected on 73 (83.0%) participants. Intention-to-treat analysis revealed no significant differences in the proportion of participants who reported self-harming (odds ratio (OR) = 1.9, 95% CI 0.53-6.5, P = 0.33) or the frequency of self-harming behaviour (rate ratio (RR) = 0.74, 95% CI 0.34-1.63, P = 0.46) between the two groups at follow-up. No significant differences were observed between the two groups on any of the secondary outcome measures or costs. CONCLUSIONS: It is feasible to recruit and retain people with borderline personality disorder to a trial of joint crisis plans and the intervention appears to have high face validity with this population. However, we found no evidence of clinical efficacy in this feasibility study.

Assessments of mental capacity in psychiatric inpatients: a retrospective cohort study.

BACKGROUND: The Mental Capacity Act 2005 (MCA) was introduced in 2007 to protect vulnerable individuals who lack capacity to make decisions for themselves and to provide a legal framework for professionals to assess incapacity. The impact of the MCA on clinical practice is not known. This study aims to evaluate how frequently mental capacity is assessed in psychiatric inpatients, whether the criteria for determining capacity set out in the MCA are used in practice, and whether this has increased with the introduction of the MCA. METHOD: A retrospective cohort study was carried out using a case register of South East London mental health service users. The Case Register Interactive Search (CRIS) system enabled searching and retrieval of anonymised information on patients admitted to the South London and Maudsley NHS Foundation Trust since 2006. The presence and outcomes of documented mental capacity assessments in psychiatric admissions between May 2006 and February 2010 were identified and demographic information on all admissions was retrieved. RESULTS: Capacity assessments were documented in 1,732/17,744 admissions (9.8%). There was a significant increase in the frequency of capacity assessments carried out over the study period of 0.3 percentage points per month (95% CI 0.26-0.36, p < 0.00001). In only 14.7% of capacity assessments were the MCA criteria for assessing capacity explicitly used. CONCLUSIONS: Over the period of the introduction of the MCA there has been a significant increase in the number of mental capacity assessments carried out on psychiatric inpatients. Although mental health services are considering the issue of capacity more frequently, mental capacity assessments are inconsistently applied and do not make adequate use of MCA criteria.

Risk assessment in mental health care: values and costs.

Risk assessment has assumed increasing salience in mental health care in a number of countries. The frequency of serious violent incidents perpetrated by people with a mental illness is an insufficient explanation. Understandings of mental illness and of the role of those charged with their care (or control) play a key role. "Moral outrage", associated with an implied culpability when certain types of tragedy occur, is very significant. This leads to tensions concerning the role of post-incident inquiries, and contributes to a flawed conception of what such inquiries can offer. At the same time, understanding of probability and prediction is generally very poor, among both professionals and the public. Unrealistic expectations for risk assessment and management in general psychiatric practice carry a variety of significant costs, taking a number forms, to those with a mental illness, to mental health professionals and to services. Especially important are changes in professional practice and accountabilities that are significantly divorced from traditional practice, implications for trust in patient-clinician relationships and the organisations in which mental health professionals work, and practices that often breach the ethical principle of justice (or fairness) and heighten discrimination against people with mental illness.

'Radical Interpretation' and the Assessment of Decision-Making Capacity.

The assessment of patients' decision-making capacity (DMC) has become an important area of clinical practice, and since it provides the gateway for a consideration of non-consensual treatment, has major ethical implications. Tests of DMC such as under the Mental Capacity Act (2005) for England and Wales aim at supporting autonomy and reducing unwarranted paternalism by being 'procedural', focusing on how the person arrived at a treatment decision. In practice, it is difficult, especially in problematic or borderline cases, to avoid a consideration of beliefs and values; that is, of the substantive content of ideas rather than simple 'cognitive' or procedural abilities. However, little attention has been paid to how beliefs and values might be assessed in the clinical context and what kind of 'objectivity' is possible. We argue that key aspects of Donald Davidson's ideas of 'Radical Interpretation' and the 'Principle of Charity' provide useful guidance as to how clinicians might approach the question of whether an apparent disturbance in a person's thinking about beliefs or values undermines their DMC. A case example is provided, and a number of implications for clinical practice are discussed.

Promoting human rights in mental healthcare: beyond the 'Geneva impasse'.

The past decade has seen a significant growth in attention to the human rights of persons with disabilities, taken to include mental health conditions. Consequently, challenges to important areas of current psychiatric practice have emerged, with which the profession has, in general, shown limited engagement.

Opportunities and challenges of self-binding directives: A comparison of empirical research with stakeholders in three European countries.

BACKGROUND: Self-binding directives (SBDs) are psychiatric advance directives that include a clause in which mental health service users consent in advance to involuntary hospital admission and treatment under specified conditions. Medical ethicists and legal scholars identified various potential benefits of SBDs but have also raised ethical concerns. Until recently, little was known about the views of stakeholders on the opportunities and challenges of SBDs. AIMS: This article aims to foster an international exchange on SBDs by comparing recent empirical findings on stakeholders' views on the opportunities and challenges of SBDs from Germany, the Netherlands, and the United Kingdom. METHOD: Comparisons between the empirical findings were drawn using a structured expert consensus process. RESULTS: Findings converged on many points. Perceived opportunities of SBDs include promotion of autonomy, avoidance of personally defined harms, early intervention, reduction of admission duration, improvement of the therapeutic relationship, involvement of persons of trust, avoidance of involuntary hospital admission, addressing trauma, destigmatization of involuntary treatment, increase of professionals' confidence, and relief for proxy decision-makers. Perceived challenges include lack of awareness and knowledge, lack of support, undue influence, inaccessibility during crisis, lack of cross-agency coordination, problems of interpretation, difficulties in capacity assessment, restricted therapeutic flexibility, scarce resources, disappointment due to noncompliance, and outdated content. Stakeholders tended to focus on practical challenges and did not often raise fundamental ethical concerns. CONCLUSIONS: Stakeholders tend to see the implementation of SBDs as ethically desirable, provided that the associated challenges are addressed.

Mired in confusion: making sense of the Deprivation of Liberty Safeguards.

INTRODUCTION: There is uncertainty about how to identify deprivation of liberty and the interface of the Mental Health Act and Mental Capacity Act Safeguards. OBJECTIVE To increase current understanding by exploring how an expert legal panel interpret existing case law relating to deprivation of liberty in the clinical setting. Design Clinical vignettes of real patients were used to explore lawyers' thinking about important factors that: (1) distinguish lawful restriction from deprivation of liberty and (2) govern the choice between safeguard regimes when there is deprivation of liberty. The relative importance of such factors was discussed in a consensus meeting using a modified nominal group approach. Participants and setting Six eminent barristers and solicitors with expertise in mental health law attended a consensus meeting after making individual judgements about vignettes describing the situations of 28 incapacitated patients who had been admitted informally to a range of psychiatric inpatient units in South East London. RESULTS: Lawyers attributed key importance to a patient's 'freedom to leave' and suggested that patients' subjective experiences should be considered when identifying deprivation of liberty. CONCLUSIONS Clarification of deprivation of liberty and its safeguards will develop with future case law. Based on current available case law, the lawyers' expert views represented a divergence from Code of Practice guidance. We suggest that clinicians give consideration to this.

Involuntary Detention and Treatment: Are We Edging Toward a "Paradigm Shift"?

Recent challenges to conventional mental health laws concerning involuntary detention and treatment of persons with a mental disorder have led to proposals, or indeed an insistence, that fundamental reform is necessary. A key theme has been the need to eliminate unfair discrimination against people with a mental disorder because their human rights are not respected on an equal basis with other people. Some proposals depart radically from conventional assumptions concerning the justification of involuntary detention and treatment. One is a "fusion law," a generic law applying to all persons lacking the ability to make a treatment decision, whether resulting from a "mental" or "physical" illness. An authoritative interpretation of the UN Convention on the Rights of Persons with Disabilities (2006) goes so far as to maintain that involuntary interventions are a violation of the Convention.

Retrospective views of psychiatric in-patients regaining mental capacity.

BACKGROUND: An individual's right to self-determination in treatment decisions is a central principle of modern medical ethics and law, and is upheld except under conditions of mental incapacity. When doctors, particularly psychiatrists, override the treatment wishes of individuals, they risk conflicting with this principle. Few data are available on the views of people regaining capacity who had their treatment wishes overridden. AIMS: To investigate individuals' views on treatment decisions after they had regained capacity. METHOD: One hundred and fifteen people who lacked capacity to make treatment decisions were recruited from a sample of consecutively admitted patients to a large psychiatric hospital. After 1 month of treatment we asked the individuals for their views on the surrogate treatment decisions they received. RESULTS: Eighty-three per cent (95% CI 66-93) of people who regained capacity gave retrospective approval. Approval was no different between those admitted informally or involuntarily using Mental Health Act powers (chi(2) = 1.52, P = 0.47). Individuals were more likely to give retrospective approval if they regained capacity (chi(2) = 14.2, P = 0.001). CONCLUSIONS: Most people who regain capacity following psychiatric treatment indicate retrospective approval. This is the case even if initial treatment wishes are overridden. These findings moderate concerns both about surrogate decision-making by psychiatrists and advance decision-making by people with mental illness.