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Trust, choice and power in mental health care: Experiences of patients with psychosis
Abstract
Trust, choice and power are critical issues in clinical practice, public policies and a post-modern understanding of mental health care. We aimed to investigate the experiences and attitudes of patients with psychosis in relation to trust, choice and power.
We conducted 20 in-depth interviews with patients with psychotic disorders in care of NHS services. The interviews were subjected to thematic analysis.
Patients discussed aspects of their care in terms of dimensions that enhance or undermine trust, choice and power. Two interpretive themes emerged from this data. First, patients perceive the need for a shifting balance of power, according to the severity of their illness and their own experience of care, but feel that threats of coercion and neglect disable them. Second, they appreciate the expertise of clinicians, but particularly value 'the personal touch' that goes beyond this expertise, including personal disclosure about their own lives, common acts of kindness and conversation outside clinical matters. Patients view trust as a two-way process with responsibility shared between patient and clinician.
The active involvement of patients with psychosis in their individual care may be strengthened, particularly when they are not acutely ill and have more experience of their illness. While patients value expertise and respect in interactions with clinicians, they also appreciate a 'personal touch', which may go beyond current notions of professionalism.
... Most participants emphasized the importance of trust, control, and collaboration in enabling EbEs to try NET despite their apprehension about revisiting the past and the sensitivity of the stories being shared. This aligns with existing research, which highlights the significance of shifting the balance of power and having a 'personal touch' in building trusting relationships with people who have experienced psychosis (Laugharne et al., 2011). ...
... A strong therapeutic alliance has also been found to predict positive therapeutic outcomes, and is associated with reduced global and psychosis-related symptoms (Bourke et al., 2021). Given the emphasis on trust in trauma-informed care (Isobel et al., 2021) and psychosis services (Laugharne et al., 2011), it may be especially important in this context, especially when working with people who have experienced traumatic events involving breaches of trust (Ormhaug et al., 2014). ...
... The 'person-centred' approach was also noted in research into clinicians' views of the lifeline (Dix & Fornells-Ambrojo, 2023), and was seen to fit the EIP ethos. EbEs valued clinicians taking an interest in their lives beyond what was directly relevant to the NET process, and appreciated their help with practical tasks related to daily living; this, referred to by Laugharne et al. (2011) as 'the personal touch', has been noted in existing psychosis research (Laugharne et al., 2011). However, clinicians faced a conflict between making space for concerns that arose in people's present-day lives and sticking to the protocol, which required them to keep sessions focused on NET-related tasks. ...
... Although trust is known to be a crucial ingredient for the therapeutic relationship with people experiencing psychosis (Bjornestad et al., 2018;Laugharne et al., 2012;Pipkin et al., 2021), less is known about the stance the therapist should take to facilitate a trusting relationship. Multiple therapies have proven to be effective for treating psychosis (Ridenour et al., 2019a), but little has been written explicitly about how to foster trust within the context of the therapeutic relationship. ...
... Even the experience of treatment and recovery itself can at times increase this sense of alienation from others in several ways across the course of illness. When treatments are experienced as coercive (e.g., unwanted medication, forced detention), interpersonal trust in the context of treatment can be further undermined (Laugharne et al., 2012). The process of recovery can also present new challenges as individuals may doubt their own mind and perceptions or grieve previous ways of meaning making linked to psychosis (Buck et al., 2013). ...
... First, therapists should consider the simultaneous importance and pitfalls of therapist warmth, given that many patients with psychosis are mistrustful and fearful of closeness and attachment (Weijers et al., 2020). Research studies have found that therapist warmth and caring are factors that can promote trust and closeness (Laugharne et al., 2012;Pipkin et al., 2021). However, it has long been observed that warmth can sometimes exacerbate mistrust. ...
Mistrust is a significant problem for people with psychosis and can interfere with their capacity to engage in psychosocial treatment. In this article, the developmental trajectory of mistrust is outlined, including the impact that attachment disruption, childhood trauma, attributional biases, internalized stigma, and discrimination can have on the person's capacity to form trusting bonds with others. After this review, three elements are described that may allow for the restoration of trust: the therapist's openness to understanding the patient's experience and agenda for therapy, the therapist's effort to honestly disclose their thoughts to encourage dialogue and mutual reflection, and therapist's attempt to promote metacognition through helping the patient develop more complex representations of the minds of others. These elements are framed in the context of metacognitive reflection and insight therapy, an integrative therapy that is well suited to address mistrust through its explicit focus on metacognition and intersubjectivity.
... Considering the long history of fear and stigma associated with psychiatric institutions and the specificities of mental health disorders and their treatment, trust building is especially important-and may be particularly challenging-in the context of mental healthcare [21,33,34]. Noncoerciveness, safety, dignity, caring, concern, confidentiality and continuity of care are of distinctive relevance in mental healthcare [35][36][37]. Trust building may be particularly demanding in the provision of care for patients with psychosis [38]. Early intervention for psychosis (EIS), which is the most advocated model of care for first-episode psychosis [39], emphasizes a patient-centered and recovery-focused approach. ...
... As exploratory analyses, considering that continuity of care has been previously associated with higher trust levels [35][36][37], we assessed whether trust in doctors and case managers changed over time (from Month 3 to Month 24 of follow-up) at both sites. Finally, acknowledging the relevance of family involvement in the context of early intervention [12,43,44,49], we compared trust between family members and patients. ...
Purpose
Cross-cultural psychosis research has typically focused on a limited number of outcomes (generally symptom-related). It is unknown if the purported superior outcomes for psychosis in some low- and middle-income countries extend to fundamental treatment processes like trust. Addressing this gap, we studied two similar first-episode psychosis programs in Montreal, Canada, and Chennai, India. We hypothesized higher trust in healthcare institutions and providers among patients and families in Chennai at baseline and over follow-up.
Methods
Upon treatment entry and at months 3, 12 and 24, trust in healthcare providers was measured using the Wake Forest Trust scale and trust in the healthcare and mental healthcare systems using two single items. Nonparametric tests were performed to compare trust levels across sites and mixed-effects linear regression models to investigate predictors of trust in healthcare providers.
Results
The study included 333 patients (Montreal = 165, Chennai = 168) and 324 family members (Montreal = 128, Chennai = 168). Across all timepoints, Chennai patients and families had higher trust in healthcare providers and the healthcare and mental healthcare systems. The effect of site on trust in healthcare providers was significant after controlling for sociodemographic characteristics known to impact trust. Patients' trust in doctors increased over follow-up.
Conclusion
This study uniquely focuses on trust as an outcome in psychosis, via a comparative longitudinal analysis of different trust dimensions and predictors, across two geographical settings. The consistent differences in trust levels between sites may be attributable to local cultural values and institutional structures and processes and underpin cross-cultural variations in treatment engagement and outcomes.
... Considering the long history of fear and stigma associated with psychiatric institutions and the speci cities of mental health disorders and their treatment, trust building is especially important -and may be particularly challenging -in the context of mental healthcare [21,33,34]. Non-coerciveness, safety, dignity, caring, concern, con dentiality and continuity of care are of distinctive relevance in mental healthcare [35][36][37]. Trust building may be particularly demanding in the provision of care for patients with psychosis [38]. Early intervention for psychosis (EIS), which is the most advocated model of care for rstepisode psychosis [39], emphasizes a patient-centred and recovery-focused approach. ...
... As exploratory analyses, considering that continuity of care has been previously associated with higher trust levels [35][36][37], we assessed whether trust in doctors and case managers changed over time (from Month 3 to Month 24 of follow-up) at both sites. Finally, acknowledging the relevance of family involvement in the context of early intervention [12,43,44,49], we compared trust between family members and patients. ...
Purpose: Cross-cultural psychosis research has typically focused on a limited number of outcomes (generally symptom-related). It is unknown if the purported superior outcomes for psychosis in some low- and middle-income countries extend to fundamental treatment processes like trust. Addressing this gap, we studied two similar first-episode psychosis programs in Montreal, Canada and Chennai, India. We hypothesized higher trust in healthcare institutions and providers among patients and families in Chennai at baseline and over follow-up.
Methods: Upon treatment entry and at months 3, 12 and 24, trust in healthcare providers was measured using the Wake Forest Trust scale and trust in the healthcare and mental healthcare systems using two single items. Non-parametric tests were performed to compare trust levels across sites and mixed-effects linear regression models to investigate predictors of trust in healthcare providers.
Results: The study included 333 patients (Montreal=165, Chennai=168) and 324 family members (Montreal=128, Chennai=168). Across all timepoints, Chennai patients and families had higher trust in healthcare providers and the healthcare and mental healthcare systems. The effect of site on trust in healthcare providers was significant after controlling for sociodemographic characteristics known to impact trust. Patients' trust in doctors increased over follow-up.
Conclusion: This study uniquely focuses on trust as an outcome in psychosis, via a comparative longitudinal analysis of different trust dimensions and predictors, across two geographical settings. The consistent differences in trust levels between sites may be attributable to local cultural values and institutional structures and processes and underpin cross-cultural variations in treatment engagement and outcomes.
... Another related factor that has been found is the perception of unprofessionalism of Bedouin professionals. Previous studies have shown that when mental health professionals are perceived as unprofessional, it can harm the level of trust individuals place in them (Gaebel et al., 2014;Laugharne et al., 2012). The present study suggests that Bedouin society is skeptical of Bedouin professionals and their ability to maintain confidentiality and uphold professionalism in the face of cultural and social pressures. ...
Trust in mental health professionals and services profoundly impacts health outcomes. However, understanding trust in mental health professionals, especially in ethnic minority contexts, is lacking. To explore this within the Bedouin-Arab minority, a qualitative study conducted semi-structured interviews with 25 Bedouins in southern Israel. Participants were primarily female (60%) married (60%), averaging 34.08 years old. Employing grounded theory, three themes emerged. Firstly, concerns about confidentiality were central, eroding trust due to societal repercussions. Secondly, factors influencing confidentiality concerns and distrust were tied to Bedouin-Arab social structures and cultural values rather than professional attributes. Lastly, the consequences of distrust included reduced help-seeking. This study enriches the understanding of trust in mental health professionals among non-Western ethnic minorities, highlighting how cultural factors shape perceptions of mental health services and distrust. Addressing confidentiality worries demands Bedouin mental health professionals to acknowledge hurdles, build community ties, and demonstrate expertise through personal connections and events.
... Nurse champions further reported that customisation (ie, selecting from one of three natural environment videos) was the most engaging feature of the VR intervention, indicating its potential appeal to patients in acute mental healthcare where the need for a shifting balance of power, patient vocalisation and two-way process between patients and clinicians have been previously highlighted. 48 Our study implies that enhanced customisation in content and delivery at the sensory level could make VR suitable for various mental health profiles, enabling greater personalised experiences for patients and improving the applicability of Safewards as well. 33 49 Nurse champions reported that the addition of olfactory stimuli enhanced their experience across immersivity, engagement and want of use, although it did not translate to a higher degree of relaxation. ...
Background
Aggression and negative activation in mental health inpatient units pose significant challenges for both patients and staff with severe physical and psychological ramifications. The Safewards model is an evidence-based conflict-containment framework including 10 strategies, such as ‘Calm Down Methods’. As virtual reality (VR) scenarios have successfully enhanced anxiolytic and deactivating effects of therapeutic interventions, they are increasingly considered a means to enhance current models, like Safewards.
Objectives
The present participatory design investigates the feasibility and user experience of integrating VR therapy as an add-on strategy to the Safewards model, gathering preliminary data and qualitative feedback from bedside staff in an adult inpatient mental health unit.
Methods
An exploratory within-subjects design combining qualitative observations, self-report questionnaires and semistructured interviews is employed with four nurse champions from the mental health unit at Michael Garron Hospital (Toronto, Canada).
Results
A chronological overview of the design process, adaptations and description of the user experience is reported.
Conclusion
‘SafeVRwards’ introduces VR as a promising conflic-containment strategy complementary to the Safewards model, which can be optimised for deployment through user-oriented refinements and enhanced customisation capacity driven by clinical staff input.
Background
There is a growing momentum around the world to foster greater opportunities for the involvement of mental health service users in their care and treatment planning. In‐principle support for this aim is widespread across mental healthcare professionals. Yet, progress in mental health services towards this objective has lagged in practice.
Objectives
We conducted a systematic review of quantitative, qualitative and mixed‐method research on interventions to improve opportunities for the involvement of mental healthcare service users in treatment planning, to understand the current research evidence and the barriers to implementation.
Methods
Seven databases were searched and 5137 articles were screened. Articles were included if they reported on an intervention for adult service users, were published between 2008 and October 2023 and were in English. Evidence in the 140 included articles was synthesised according to the JBI guidance on Mixed Methods Systematic Reviews.
Results
Research in this field remains exploratory in nature, with a wide range of interventions investigated to date but little experimental replication. Overarching barriers to shared and supported decision‐making in mental health treatment planning were (1) Organisational (resource limitations, culture barriers, risk management priorities and structure); (2) Process (lack of knowledge, time constraints, health‐related concerns, problems completing and using plans); and (3) Relationship barriers (fear and distrust for both service users and clinicians).
Conclusions
On the basis of the barriers identified, recommendations are made to enable the implementation of new policies and programs, the designing of new tools and for clinicians seeking to practice shared and supported decision‐making in the healthcare they offer.
Patient or Public Contribution
This systematic review has been guided at all stages by a researcher with experience of mental health service use, who does not wish to be identified at this point in time. The findings may inform organisations, researchers and practitioners on implementing supported decision‐making, for the greater involvement of people with mental ill health in their healthcare.
Aim
Access to timely treatment is key to early intervention in psychosis. Despite this, barriers to treatment exist. In this review, we aimed to understand the structural barriers that patients and caregivers face in help‐seeking for first‐episode psychosis, and the recommendations provided to address these.
Methods
We conducted a systematic review (PROSPERO: CRD42021274609) of qualitative studies reporting structural barriers to help‐seeking from the patient or caregiver perspective. Searches were performed in September 2023, restricted to studies published from 2001. Study quality was appraised using Critical Appraisal Skills Programme. Data were analysed using thematic synthesis.
Results
Nineteen papers from 11 countries were included. Across all papers, participants reported experiencing structural barriers to receiving healthcare. For many patients and caregivers, the process of accessing healthcare is complex. Access requires knowledge and resources from parents, caregivers and healthcare providers, yet too often there is a misalignment between patients' needs and service resources. Expertise amongst healthcare providers vary and some patients and caregivers experience negative encounters in healthcare. Patients highlighted earlier caregiver involvement and greater peer support as potential routes for improvement.
Conclusion
Patients and caregivers face multiple structural barriers, with legislative practices that discourage family involvement, and healthcare and transport costs found to be particularly problematic. Understanding these barriers can facilitate the co‐design of both new and existing services to provide easier access for patients and caregivers. Further research is needed focusing not only on the perspectives of patients and caregivers who have accessed professional help but also crucially on those who have not.
Background/Aims
A climate of trust in maternity may improve the experiences of staff and women accessing maternity services. The aim of this study was to explore how a climate of trust was promoted through creation of a regular virtual maternity multidisciplinary forum, known as a maternal medicine huddle, during the COVID-19 pandemic and what influence this had on the organisational culture of a local maternity system and the experiences of women receiving maternity care.
Methods
Through a critical feminist methodology, six participants were interviewed using a semi-structured interview schedule. Interviews were conducted through Miscrosoft Teams, with the six participants representing each of the six trusts in a selected local maternity and neonatal system.
Results
Developing trust for teamwork is valued, while at the same time interprofessional and interorganisation challenges are highlighted that can impact workplace culture.
Conclusions
The huddles have built a climate of trust, working to deliver safe, equitable care for those using maternity services and a supportive learning environment for those providing it.
Using a visual analog scale, 34 schizophrenia patients receiving long-term treatment in community care rated the extent to which their treatment was right for them. We investigated whether these assessments would predict the duration of patient hospitalization during an initial followup period of 12 months and a longer followup period of 30 months. The duration of full and partial hospitalization was assessed by means of a hospitalization index. Patients who assessed their treatment more negatively had significantly higher hospitalization indices in the two followup periods. The predictive value of the patients' assessments of treatment was not explained by the influence of other variables.
This textbook, edited by Jane RITCHIE and Jane LEWIS, is meant for both students and researchers, but be- cause it primarily presents basic knowledge it is more sui- table for students. It is intended to lead practitioners through the process of qualitative research, i.e. from the design of a study, conducting of in-depth interviews and analysis of da- ta to the presentation of results. The authors impart in a pro- fessional way both broad theoretical knowledge and practi- ce-oriented information. They do not provide the reader with an overview of qualitative methods, but focus on in- depth interviews and so-called focus groups.
This paper explores the experience of illness, service and treatment from users of the Mood Swings Network. From a literature review a questionnaire was developed to ascertain users' illness experiences. Questionnaires were distributed to eighteen support groups based throughout the North West of England. Fifty questionnaires were returned, and results showed a range of positive and negative opinions about hospital and community services; pharmacological treatments; psychological and social effects of the illness, including stigma; and the personal experience of being high or low. The paper concludes by suggesting that these findings have added important information for the development of psychosocial interventions for clients with bipolar disorders.
Background: The degree to which psychiatric patients want to play a role in decision making and their desire for information regarding their treatment has not been studied in detail. Aims: To measure the information seeking and decision-making preferences of psychiatric patients. Method: The Autonomy Preference Index (API) was adapted for use in psychiatry and administered to patients of a community mental health team (CMHT) and mental health user groups. Results: Desire for information regarding their illness and treatment was very high. There was a great variation in the extent patients wanted to make decisions regarding their care. Desire for decision making was greater for the young and for those in employment. Conclusions: Psychiatric patients want a high degree of information regarding their psychiatric care. Most patients wanted to play some role in decision making. Declaration of interest: The project was jointly funded by East Cornwall Community Mental Health Team and Cornwall Mental Health Forums.
The outbreak of foot-and-mouth disease in the United Kingdom during 2001 had devastating consequences on rural communities. The farming community was already under major stress from factors such as BSE and low incomes. This study aimed to investigate the psychological impact of the outbreak on farmers by comparing a badly affected area (Cumbria) with an unaffected area (Scottish Highlands), using the General Health Questionnaire. A second aim was to examine sources of psychological support that farmers had sought; and what other supports should be available. Farmers were contacted via a postal survey; the response rate was 29%. Cumbrian farmers obtained significantly higher scores than their Highland counterparts, although high levels of psychological morbidity were obtained in both samples. Farmers were more likely to turn to their own communities, and to veterinary surgeons, for support. Few would welcome more support from health or social work authorities, many preferring to use anonymous supports such as the internet or self help booklets. However in view of the low response rate, caution must be exercised in interpreting these results.
This paper describes a measure of continuity of care, establishes its reliability and tests it in a field trial sample for evidence of its validity. In contrast to others, this measure has been generated from the perspectives of service users. As continuity of care is a concern particularly for those with severe mental illness, we have confined our work to this population group.
Service users in focus groups and expert panels generated the measure. The researchers were themselves service users. Test-retest reliability was assessed with an independent sample. The measure was administered to a final independent field trial sample to determine their experiences of continuity of care and for further psychometric testing.
The measure generated by service users has satisfactory psychometric properties. Service users in the field trial sample were more satisfied when continuity, as assessed by this measure, was in place.
It is possible and valid to construct outcome measures in mental health entirely from the user perspective. This has not been done before.
In a study designed to maximize the effectiveness of treatment by allowing participants to select the target of treatment, 40 depressed older adults were randomly assigned to a waiting-list control condition or to conditions in which the target of treatment was either chosen or assigned. All participants received self-management therapy and the choice was between changing behavior or changing cognition. It was found that individually administered self-management therapy was effective in treating depression for older adults. There were no differences in outcome between versions of self-management therapy that targeted behavioral or cognitive change. Among those who completed treatment, there were no differences in outcome between those who received a choice and those who did not. Individuals who were given a choice of treatment options, however, were less likely to drop out of treatment prematurely.
