Culture and Spirituality in the Process of Mental Health and Recovery: Users and Providers Perspectives

Background: Spiritual beliefs are known to impact on mental well-being and recovery, yet professionals and clinicians often fail to explore user and carer perspectives on these. Aims: Explore views of ethnically diverse service users, carers, service providers including Early Intervention in Psychosis service (EIS) professionals and spiritual care team representatives on the significance of spirituality, culture and religion on mental health recovery. Method: Eleven focus groups were conducted with service users, carers, health professionals and representatives of spiritual care. Results: Thematic analysis uncovered three main themes on service users’ mental health recovery: Shame and Creating a Positive Sense of Self; Meeting Cultural, Spiritual, Religious and Individual Needs; Spiritual and Religious Beliefs impact on Well-being. Clinical Implications: Healthcare professionals should consider the impact of spirituality on services users’ mental health recovery and well-being. Further training, guidance and support are needed to increase professional competency

Predictors of engagement in first-episode psychosis

Engagement with psychiatric services is critical for ensuring successful outcomes in patients experiencing a first episode of psychosis (FEP). However, it is not known how sociodemographic factors and patient beliefs about the causes of mental illness affect engagement. This study explored predictors of engagement in a cohort of 103 FEP patients presenting to an early-intervention service. Beliefs that mental illness is caused by social stress or thinking odd thoughts predicted higher engagement scores. Patients with no qualifications were found to have higher engagement scores than those educated to a higher level. Ethnicity, gender, age and socioeconomic factors were not significantly correlated with engagement scores. Duration of untreated illness (DUI) significantly predicted higher engagement scores, but only for values >1220days. Duration of untreated psychosis (DUP) was not a significant predictor of patient engagement scores. Patient beliefs about the causes of mental illness are an important factor to be taken into consideration and may represent a target of interventions to increase engagement in FEP

Process, outcome and experience of transition from child to adult mental healthcare : multiperspective study

Background Many adolescents with mental health problems experience transition of care from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS). Aims As part of the TRACK study we evaluated the process, outcomes and user and carer experience of transition from CAMHS to AMHS. Method We identified a cohort of service users crossing the CAMHS/AMHS boundary over 1 year across six mental health trusts in England. We tracked their journey to determine predictors of optimal transition and conducted qualitative interviews with a subsample of users, their carers and clinicians on how transition was experienced. Results Of 154 individuals who crossed the transition boundary in 1 year, 90 were actual referrals (i.e. they made a transition to AMHS), and 64 were potential referrals (i.e. were either not referred to AMHS or not accepted by AMHS). Individuals with a history of severe mental illness, being on medication or having been admitted were more likely to make a transition than those with neurodevelopmental disorders, emotional/neurotic disorders and emerging personality disorder. Optimal transition, defined as adequate transition planning, good information transfer across teams, joint working between teams and continuity of care following transition, was experienced by less than 5% of those who made a transition. Following transition, most service users stayed engaged with AMHS and reported improvement in their mental health. Conclusions For the vast majority of service users, transition from CAMHS to AMHS is poorly planned, poorly executed and poorly experienced. The transition process accentuates pre-existing barriers between CAMHS and AMH

Stigma and access to care in first-episode psychosis

Aim Mental health‐related stigma is considered a significant barrier to help‐seeking and accessing care in those experiencing mental illness. Long duration of untreated psychosis is associated with poorer outcomes. The impact of stigma on the duration of untreated psychosis, in first‐episode psychosis remains unexplored. To examine the association between mental health‐related stigma and access to care in people experiencing first‐episode psychosis in Birmingham, UK. Methods We collected data on a prospective cohort of first‐episode psychosis. The Stigma Scale was used as a measure of mental health‐related stigma, and duration of untreated psychosis as a measure of delay in accessing care. We performed logistic and linear regression analyses to explore the relationship between mental health‐related stigma and duration of untreated psychosis, adjusting for sex, age, educational level, religion and ethnicity. Results On the 89 participants included in this study, linear regression analysis revealed that overall stigma and the discrimination sub‐factor were significant predictors of longer duration of untreated psychosis, whereas logistic regression identified the disclosure sub‐factor to be a significant predictor of longer duration of untreated psychosis. Conclusions These findings demonstrate that stigmatizing views of mental illness from the patient's perspectives can result in delayed access to care. This emphasizes the importance of tackling mental health‐related stigma to ensure early treatment and improved outcomes for people experiencing first‐episode psychosis

Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds

BackgroundThis study explored whether or not, and how, terminally ill patients from ethnically diverse backgrounds and their family caregivers think ahead about deterioration and dying, and explored their engagement with health-care professionals in end-of-life care planning.ObjectiveThe aim was to address the question, what are the barriers to and enablers of ethnically diverse patients, family caregivers and health-care professionals engaging in end-of-life care planning?DesignThis was a qualitative study comprising 18 longitudinal patient-centred case studies, interviews with 19 bereaved family caregivers and 50 public and professional stakeholder responses to the findings.SettingThe study was set in Nottinghamshire and Leicestershire in the UK.ResultsKey barriers – the predominant stance of patients was to live with hope, considering the future only in terms of practical matters (wills and funerals), rather than the business of dying. For some, planning ahead was counter to their faith. Health-care professionals seemed to feature little in people’s lives. Some participants indicated a lack of trust and experienced a disjointed system, devoid of due regard for them. However, religious and cultural mores were of great importance to many, and there were anxieties about how the system valued and enabled these. Family duty and community expectations were foregrounded in some accounts and concern about being in the (un)care of strangers was common. Key enablers – effective communication with trusted individuals, which enables patients to feel known and that their faith, family and community life are valued. Health-care professionals getting to ‘know’ the person is key. Stakeholder responses highlighted the need for development of Health-care professionals’ confidence, skills and training, Using stories based on the study findings was seen as an effective way to support this. A number of behavioural change techniques were also identified.LimitationsIt was attempted to include a broad ethnic diversity in the sample, but the authors acknowledge that not all groups could be included.ConclusionsWhat constitutes good end-of-life care is influenced by the intersectionality of diverse factors, including beliefs and culture. All people desire personalised, compassionate and holistic end-of-life care, and the current frameworks for good palliative care support this. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people’s lives that may be unfamiliar. The challenge for health-care professionals and services is the delivery of holistic care and the range of skills that are required to do this.Future workPriorities for future research: How can health professionals identify if/when a patient is ‘ready’ for discussions about deterioration and dying? How can discussions about uncertain recovery and the need for decisions about treatment, especially resuscitation, be most effectively conducted in a crisis? How can professionals recognise and respond to the diversity of faith and cultural practices, and the heterogeneity between individuals of beliefs and preferences relating to the end of life? How can conversations be most effectively conducted when translation is required to enhance patient understanding?FundingThis project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. X. See the NIHR Journals Library website for further project information

Thinking ahead about medical treatments in advanced illness: a qualitative study of barriers and enablers in end-of-life care planning with patients and families from ethnically diverse backgrounds

Background This study explored whether or not, and how, terminally ill patients from ethnically diverse backgrounds and their family caregivers think ahead about deterioration and dying, and explored their engagement with health-care professionals in end-of-life care planning. Objective The aim was to address the question, what are the barriers to and enablers of ethnically diverse patients, family caregivers and health-care professionals engaging in end-of-life care planning? Design This was a qualitative study comprising 18 longitudinal patient-centred case studies, interviews with 19 bereaved family caregivers and 50 public and professional stakeholder responses to the findings. Setting The study was set in Nottinghamshire and Leicestershire in the UK. Results Key barriers – the predominant stance of patients was to live with hope, considering the future only in terms of practical matters (wills and funerals), rather than the business of dying. For some, planning ahead was counter to their faith. Health-care professionals seemed to feature little in people’s lives. Some participants indicated a lack of trust and experienced a disjointed system, devoid of due regard for them. However, religious and cultural mores were of great importance to many, and there were anxieties about how the system valued and enabled these. Family duty and community expectations were foregrounded in some accounts and concern about being in the (un)care of strangers was common. Key enablers – effective communication with trusted individuals, which enables patients to feel known and that their faith, family and community life are valued. Health-care professionals getting to ‘know’ the person is key. Stakeholder responses highlighted the need for development of Health-care professionals’ confidence, skills and training, Using stories based on the study findings was seen as an effective way to support this. A number of behavioural change techniques were also identified. Limitations It was attempted to include a broad ethnic diversity in the sample, but the authors acknowledge that not all groups could be included. Conclusions What constitutes good end-of-life care is influenced by the intersectionality of diverse factors, including beliefs and culture. All people desire personalised, compassionate and holistic end-of-life care, and the current frameworks for good palliative care support this. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people’s lives that may be unfamiliar. The challenge for health-care professionals and services is the delivery of holistic care and the range of skills that are required to do this. Future work Priorities for future research: How can health professionals identify if/when a patient is ‘ready’ for discussions about deterioration and dying? How can discussions about uncertain recovery and the need for decisions about treatment, especially resuscitation, be most effectively conducted in a crisis? How can professionals recognise and respond to the diversity of faith and cultural practices, and the heterogeneity between individuals of beliefs and preferences relating to the end of life? How can conversations be most effectively conducted when translation is required to enhance patient understanding? Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. X. See the NIHR Journals Library website for further project information

A prospective, quantitative study of mental health act assessments in England following the 2007 amendments to the 1983 act: did the changes fulfill their promise?

BACKGROUND: In 2008, the Mental Health Act (MHA) 2007 amendments to the MHA 1983 were implemented in England and Wales. The amendments were intended to remove perceived obstacles to the detention of high risk patients with personality disorders (PDs), sexual deviance and learning disabilities (LDs). The AMEND study aimed to test the hypothesis that the implementation of these changes would lead to an increase in numbers or proportions of patients with these conditions who would be assessed and detained under the MHA 2007. METHOD: A prospective, quantitative study of MHA assessments undertaken between July-October 2008-11 at three English sites. Data were collected from local forms used for MHA assessment documentation and patient electronic databases. RESULTS: The total number of assessments in each four month period of data collection varied: 1034 in 2008, 1042 in 2009, 1242 in 2010 and 1010 in 2011 (n = 4415). Of the assessments 65.6% resulted in detention in 2008, 71.3% in 2009, 64.7% in 2010 and 63.5% in 2011. There was no significant change in the odds ratio of detention when comparing the 2008 assessments against the combined 2009, 2010 and 2011 data (OR = 1.025, Fisher's exact Χ 2 p = 0.735). Only patients with LD and 'any other disorder or disability of the mind' were significantly more likely to be assessed under the MHA post implementation (Χ2 = 5.485, P = 0.018; Χ2 = 24.962, P > 0.001 respectively). There was no significant change post implementation in terms of the diagnostic category of detained patients. CONCLUSIONS: In the first three years post implementation, the 2007 Act did not facilitate the compulsory care of patients with PDs, sexual deviance and LDs

Negotiating identities: the lives of Pakistani and Bangladeshi young disabled people

Research has generally amalgamated minority ethnic (all called ‘Asian’ or ‘black’) disabled young people’s experiences and failed to acknowledge the multiple aspects of Asian and black disabled identities, for example how the combined attributes of race, ethnicity, religion, gender, culture, class and disability shape their perspectives and experiences. In an attempt to address this issue my doctoral research explored the experiences and perspectives of 13 young Pakistani and Bangladeshi disabled people. By drawing on the substantive and theoretical findings which emerged from my analysis in this paper I shall consider how multiple aspects of identity, such as ethnicity, disability and gender, affect this population’s identity and self‐image and how this makes their experiences different from white disabled young people and other minority groups’ experiences

Transition experiences of mental health service users, parents, and professionals in the United Kingdom : a qualitative study

Objective: The aim of this study was to describe the experiences of child and adolescent mental health service (CAMHS) users, parents and professionals in relation to transition between CAMHS and adult mental health services (AMHS) in the United Kingdom. Methods: Young people were sampled from an observational study population of people reaching the transition boundary between CAMHS and AMHS. We thematically analyzed qualitative interviews with service users, parents and clinicians. Results: Eleven service users were interviewed and linked interviews were completed with parents (n=6), and responsible clinicians in CAMHS (n=3) and AMHS (n=6). Informal and gradual preparation, transfer planning meetings, periods of parallel care, and consistency in key-workers promoted positive experiences of transition. Transfers between AMHS, changes of key-worker and waiting lists were viewed negatively. Other life transitions, including changes in housing, pregnancy, physical illness, and the involvement of parents or other services were sometimes powerful extraneous influences on transition experiences. Conclusions and Implications for Practice: The cumulative effect of multiple transitions is a complex and unsettling experience for many service users. Service user experiences are more likely to be positive if healthcare transition is a gradual process, tailored to the young person's needs and managed in the context of the other simultaneous practical, developmental and psychosocial transitions. Transfer planning meetings and parallel care were valued by all parties and should be standard practice at transition. CAMHS and AMHS need to work jointly to improve the transition process in these ways in order to enhance the outcomes for young people