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.

Internalised stigma in people with rheumatoid arthritis: a cross sectional study to establish the psychometric properties of the ISMI-RA.

BACKGROUND: Internalised stigma is theorized to be the internalisation and legitimisation of stereotypes of the diagnosis held in society and has not been quantified within patients with Rheumatoid Arthritis. This study aimed to: validate a modified version of a measure of internalised stigma, (the Internalised Stigma of Mental Illness scale, ISMI) for use in a group of patients diagnosed with rheumatoid arthritis; establish the consistency of the construct being measured, and to explore the levels of internalised stigma within this group. METHODS: A cross-sectional survey was conducted in London, UK with participants receiving out-patient treatment for Rheumatoid Arthritis. Participants completed the ISMI-Rheumatoid Arthritis (ISMI-RA) and a measure of self-esteem. RESULTS: One hundred respondents were interviewed by phone. The ISMI-RA was found to be reliable using a measure of internal consistency (α = 0.85) showed concurrent validity with the Index of Self Esteem (r = 0.58, p < 0.01) and discriminant validity with no association with gender (t = 1.43, p = 0.61). A quarter of respondents reported internalised stigma to a 'severe' level. Acceptability and feasibility were established. A confirmatory factor analysis provided some support for the model of internalised stigma. CONCLUSIONS: The application of the ISMI-RA among the Rheumatoid Arthritis population looks promising. Internalised stigma was found to be present within this group. More research is needed to generalize these results and to explore the effects of internalised stigma on treatment adherence and quality of life.

How does a decision aid help people decide whether to disclose a mental health problem to employers? Qualitative interview study.

Background Decisions about whether to disclose mental health problems to employers are complex, with potential personal, employment and legal implications. Decision aids are evidence based tools, designed to help individuals make specific choices between treatment options. We previously developed a decision aid-Conceal Or ReveAL (CORAL)-to assist service users with decisions about disclosure to employers. As part of a mixed methods exploratory RCT, which demonstrated that the CORAL decision aid was effective in reducing decisional conflict, we aimed to explore its mechanism of action and to optimise the intervention for a future full scale trial. Methods In depth interviews were conducted with individuals receiving vocational support from a mental health trust and participating in the intervention arm of the pilot trial. Thematic analysis was conducted to identify the main themes relating to participants' perceptions of the CORAL decision aid. Results Thirteen participants were interviewed and five main themes were identified: sense of self and values; sense of control; anticipation of disclosure; experience of disclosure; and mechanism of action of the decision aid. Conclusions Data from our 13 participants suggest that the CORAL decision aid acts on several dimensions of decisional conflict: clarifying the pros and cons of different choices; increasing knowledge; structuring the decision making process; and clarifying needs and values. The current study indicated that it would be most effective when delivered by a professional well versed in employment and mental health matters such as a vocational adviser. The need for employers and policymakers to reduce the negative impact of disclosure is also highlighted.

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.

Anticipated and experienced discrimination amongst people with schizophrenia, bipolar disorder and major depressive disorder: a cross sectional study.

BACKGROUND: The unfair treatment of individuals with severe mental illness has been linked to poorer physical and mental health outcomes. Additionally, anticipation of discrimination may lead some individuals to avoid participation in particular life areas, leading to greater isolation and social marginalisation. This study aimed to establish the levels and clinical and socio-demographic associations of anticipated and experienced discrimination amongst those diagnosed with a schizophrenia and comparator severe mental illnesses (bipolar and major depressive disorders). METHODS: This study was a cross-sectional analysis of anticipated and experienced discrimination from 202 individuals in South London (47% with schizophrenia, 32% with depression and 20% with bipolar disorder). RESULTS: 93% of the sample anticipated discrimination and 87% of participants had experienced discrimination in at least one area of life in the previous year. There was a significant association between the anticipation and the experience of discrimination. Higher levels of experienced discrimination were reported by those of a mixed ethnicity, and those with higher levels of education. Women anticipated more discrimination than men. Neither diagnosis nor levels of functioning were associated with the extent of discrimination. Clinical symptoms of anxiety, depression and suspiciousness were associated with more experienced and anticipated discrimination respectively. CONCLUSIONS: The unfair treatment of individuals with severe mental illnesses remains unacceptably common. Population level interventions are needed to reduce levels of discrimination and to safeguard individuals. Interventions are also required to assist those with severe mental illness to reduce internalised stigma and social avoidance.

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.

The development and validation of the Questionnaire on Anticipated Discrimination (QUAD).

BACKGROUND: The anticipation of mental health-related discrimination is common amongst people with mental health problems and can have serious adverse effects. This study aimed to develop and validate a measure assessing the extent to which people with mental health problems anticipate that they will personally experience discrimination across a range of contexts. METHODS: The items and format for the Questionnaire on Anticipated Discrimination (QUAD) were developed from previous versions of the Discrimination and Stigma Scale (DISC), focus groups and cognitive debriefing interviews which were used to further refine the content and format. The resulting provisional version of the QUAD was completed by 117 service users in an online survey and reliability, validity, precision and acceptability were assessed. A final version of the scale was agreed and analyses re-run using the online survey data and data from an independent sample to report the psychometric properties of the finalised scale. RESULTS: The provisional version of the QUAD had 17 items, good internal consistency (alpha = 0.86) and adequate convergent validity as supported by the significant positive correlations with the Stigma Scale (SS) (r = 0.40, p < 0.001) and the Internalised Stigma of Mental Illness Scale (ISMI) (r = 0.40, p < 0.001). Three items were removed due to low endorsements, high inter-correlation or conceptual concerns. The finalised 14 item QUAD had good internal consistency (alpha = 0.86), good test re-test reliability (ρ(c) = 0.81) and adequate convergent validity: correlations with the ISMI (r = 0.45, p < 0.001) and with the SS (r = 0.39, p < 0.001). Reading ease scores indicated good acceptability for general adult populations. Cross-replication in an independent sample further indicated good internal consistency (alpha = 0.88), adequate convergent validity and revealed two factors summarised by institutions/services and interpersonal/professional relationships. CONCLUSIONS: The QUAD expanded upon previous versions of the DISC. It is a reliable, valid and acceptable measure which can be used to identify key life areas in which people may personally anticipate discrimination, and an overall tendency to anticipate discrimination. It may also be useful in planning interventions aimed at reducing the stigma of mental illness.

Mental health-related discrimination as a predictor of low engagement with mental health services.

OBJECTIVE: This study aimed to test the hypothesis that mental health-related discrimination experienced by adults receiving care from community mental health teams is associated with low engagement with services and to explore the pathways between these two variables. METHODS: In this cross-sectional study, 202 adults registered with inner-city community mental health teams in the United Kingdom completed interviews assessing their engagement with mental health services (service user-rated version of the Service Engagement Scale), discrimination that they experienced because of mental illness, and other variables. Structural equation modeling was conducted to examine the relationship of experienced discrimination and service engagement with potential mediating and moderating variables, such as anticipated discrimination (Questionnaire on Anticipated Discrimination), internalized stigma (Internalized Stigma of Mental Illness Scale), stigma stress appraisal (Stigma Stress Appraisal), mistrust in services, the therapeutic relationship (Scale to Assess Therapeutic Relationships), difficulty disclosing information about one's mental health, and social support. Analyses controlled for age, race-ethnicity, and symptomatology. RESULTS: No evidence was found for a direct effect between experienced discrimination and service engagement. The total indirect effect of experienced discrimination on service engagement was statistically significant (coefficient=1.055, 95% confidence interval [CI]=.312-2.074, p=.019), mainly via mistrust in mental health services and therapeutic relationships (coefficient=.804, CI=.295-1.558, p=.019). A 1-unit increase in experienced discrimination via this pathway resulted in .804-unit of deterioration in service engagement. CONCLUSIONS: Findings indicate the importance of building and maintaining service users' trust in mental health services and in therapeutic relationships with professionals and countering the discrimination that may erode trust.

Advance statements for borderline personality disorder: a qualitative study of future crisis treatment preferences.

OBJECTIVE: Little is known about the crisis treatment preferences of people with borderline personality disorder. Clinicians may also question service users' ability to make considered decisions about their treatment when in crisis. Therefore, this qualitative study aimed to investigate crisis treatment preferences of a sample of community-dwelling adults with borderline personality disorder. METHODS: Participants were 41 adults with borderline personality disorder who had created joint crisis plans during a randomized controlled trial. Data from all 41 joint crisis plans were analyzed iteratively via a thematic analysis framework. RESULTS: Participants gave clear statements in their crisis plans relating to the desire to recover from the crisis and to improve their social functioning. Key themes included the desire to be treated with dignity and respect and to receive emotional and practical support from clinicians. Many participants spoke of the importance of connecting with others during periods of crisis, but several reported a clear desire to be left alone during a future crisis. Other themes concerned preferences for specific treatment refusals during crises, including particular types of psychotropic medication and involuntary treatment. CONCLUSIONS: The variation of participants' preferences underscores the importance of developing individually tailored crisis plans for people with borderline personality disorder. The need to be treated with dignity and respect and to be given autonomy in decision making--also identified in global surveys of people with severe mental illness--is important to people with borderline personality disorder. Key messages for clinicians, service users, and policy makers, in addition to staff training issues, are discussed.