Zoebia Islam

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 AMHS.

Transfers and transitions between child and adult mental health services

BACKGROUND Transfer of care from one healthcare provider to another is often understood as a suboptimal version of the process of transition. AIMS To separate and evaluate concepts of transfer and transition between child and adolescent mental health services (CAMHS) and adult mental health services (AMHS). METHOD In a retrospective case-note survey of young people reaching the upper age boundary at six English CAMHS, optimal transition was evaluated using four criteria: continuity of care, parallel care, a transition planning meeting and information transfer. RESULTS Of 154 cases, 76 transferred to AMHS. Failure to transfer resulted mainly from non-referral by CAMHS (n = 12) and refusal by service users (n = 12) rather than refusal by AMHS (n = 7). Four cases met all criteria for optimal transition, 13 met none; continuity of care (n = 63) was met most often. CONCLUSIONS Transfer was common but good transition rare. Reasons for failure to transfer differ from barriers to transition. Transfer should be investigated alongside transition in research and service development.

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 persons 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.

‘Talking a different language’: an exploration of the influence of organizational cultures and working practices on transition from child to adult mental health services

BackgroundOrganizational culture is manifest in patterns of behaviour underpinned by beliefs, values, attitudes and assumptions, which can influence working practices. Cultural factors and working practices have been suggested to influence the transition of young people moving from child to adult mental health services. Failure to manage and integrate transitional care effectively can lead to young people losing contact with health and social care systems, resulting in adverse effects on health, well-being and potential.MethodsThe study aim was to identify the organisational factors which facilitate or impede transition of young people from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS) from the perspective of health professionals and representatives of voluntary organisations. Specific objectives were (i) to explore organizational cultures, structures, processes and resources which influence transition from child to adult mental health services; (ii) identify factors which constitute barriers and facilitators to transition and continuity of care and (iii) make recommendations for service improvements. Within an exploratory, qualitative design thirty four semi-structured interviews were conducted with health and social care professionals working in CAMHS and AMHS in four NHS Mental Health Trusts and four voluntary organizations, in England.ResultsA cultural divide appears to exist between CAMHS and AMHS, characterized by different beliefs, attitudes, mutual misperceptions and a lack of understanding of different service structures. This is exacerbated by working practices relating to communication and information transfer which could impact negatively on transition, relational, informational and cross boundary continuity of care. There is also evidence of a cultural shift, with some positive approaches to collaborative working across services and agencies, involving joint posts, parallel working, shared clinics and joint meetings.ConclusionsCultural factors embodied in mutual misperceptions, attitudes, beliefs exist between CAMHS and AMHS. Working practices can exert either positive or negative effects on transition and continuity of care. Implementation of shared education and training, standardised approaches to record keeping and information transfer, supported by compatible IT resources are recommended, alongside management strategies which evaluate the achievement of outcomes related to transition and continuity of care.

The effect of organisational resources and eligibility issues on transition from child and adolescent to adult mental health services

Objectives To investigate the organisational factors that impede or facilitate transition of young people from child and adolescent (CAMHS) to adult mental health services (AMHS). Methods Thirty-four semi-structured interviews were conducted with health and social care professionals working in child and adult services in four English NHS Mental Health Trusts and voluntary organisations. Data were analysed thematically using a structured framework. Results Findings revealed a lack of clarity on service availability and the operation of different eligibility criteria between child and adult mental health services, with variable service provision for young people with attention deficit hyperactivity disorder, autism spectrum disorders and learning disabilities. High workloads and staff shortages were perceived to influence service thresholds and eligibility criteria. Conclusions A mutual lack of understanding of services and structures together with restrictive eligibility criteria exacerbated by perceived lack of resources can impact negatively on the transition between CAMHS and AMHS, disrupting continuity of care for young people.

Black and Minority Ethnic Groups’ Perception and Experience of Early Intervention in Psychosis Services in the United Kingdom:

In the United Kingdom, Black and minority ethnic (BME) service users experience adverse pathways into mental health care. Ethnic differences are evident even at first-episode psychosis; therefore, contributory factors must operate prior to first presentation to psychiatric services. This study examines the cultural appropriateness, accessibility, and acceptability of the Early Intervention (EI) for Psychosis Services in Birmingham (the United Kingdom) in improving the experience of care and outcomes for BME patients. Thirteen focus groups were conducted with EI service users (n = 22), carers (n = 11), community and voluntary sector organizations (n = 6), service commissioners (n = 10), EI professionals (n = 9), and spiritual care representatives (n = 8). Data were analyzed using a thematic approach and framework analysis. Findings suggest that service users and carers have multiple, competing, and contrasting explanatory models of illness. For many BME service users, help-seeking involves support from faith/spiritual healers, before seeking medical intervention. EI clinicians perceive that help-seeking from faith institutions in Asian service users might lead to treatment delays. The value of proactively including service user’s religious and spiritual perspectives and experiences in the initial assessment and therapy is recognized. However, clinicians acknowledge that they have limited spiritual/religious or cultural awareness training. There is little collaborative working between mental health services and voluntary and community organizations to meet cultural, spiritual, and individual needs. Mental health services need to develop innovative collaborative models to deliver holistic and person-centered care.

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.

I never knew that! Why do people from Black and Asian Minority Ethnic groups in Leicester access hospice services less than other groups? A discussion with community groups

In the UK, Black and AsianMinority Ethnic (BAME) patients are less likely to access palliative care services than their White counterparts. An increasingly diverse population makes this a cause for concern. This paper describes a project in Leicester to discover what members of the BAME communities knew about palliative care and the providers of hospice services; what they thought the barriers were to their use of these services; and how they would like to find out about them.Informal discussion groups were used as the vehicle for information gathering; accessing communities to develop such groups posed specific problems. Two project workers made notes during and immediately after the discussion groups. These were thematically analysed. Findings suggested that knowledge about palliative care was scant, though much valued when understood. Cultural and religious strictures on using palliative care services or a palliative care approachwere not demonstrated, though others, including considerable concerns about food when an inpatient, were deemed of importance. The need to know what is locally available, and how to access those services, was uniformly agreed, and the information given warmly welcomed, even by those with reservations.

17 Discussions about resuscitation in advanced illness: what are the public’s views?

Background Patients with advanced illness who are at risk of deteriorating and dying are ipso facto at risk of their heart stopping. The law with regards to involvement of patients and relatives in discussions about resuscitation is clear and mirrored in National Guidance. However there is very little evidence about public and user views about such discussions and decisions. This study aimed to explore the views of public participants with a focus on those from minority ethnic backgrounds. Method Members of the public were approached through a number of strategies including adverts in hospice shops, local radio, approach to cancer support groups and community organisations. Q methodology was used to reveal key viewpoints and to understand those viewpoints holistically. Participants attended a workshop where resuscitation was explained together with the likely benefits and harms in advanced illness. Participants then completed a structured ranking (Q sort) of statements about resuscitation to best reflect their views. The 49 statements had been developed with reference to the literature, expert advisors, interviews with professionals and with PPI volunteers. A brief interview was conducted with each participant after their ranking of statements to further explore their views. Results 38 people with diverse socio-cultural demographics attended 9 workshops. Some participants required one to one verbal translation of materials. Analysis of the Q sorts identified four viewpoints summarised as foregrounding: self-actualisation: ambivalent perspectives; fear of dying; and family as decision makers. Conclusion Workshops about resuscitation decisions in advanced illness were welcomed. Q method can help describe the public viewpoints about resuscitation and the related discussions and decisions in advanced illness. In turn this information about the way a patient perceives the issues may help professionals best support patients in discussions about their end of life care.

45 Thinking ahead about medical treatments in advanced illness: the complexities of supporting diverse communities in leicestershire

Background Advance care planning (ACP) supports people who are seriously ill to be cared for in the way, and in the place that they prefer. Yet, evidence suggests there are lower levels of ACP in people from Black, Asian and Minority Ethnic (BAME) communities. Little is known about how the model of resuscitation decision-making fits with the social, cultural and religious values and beliefs of BAME groups. Health care professionals (HCPs) also report a lack of confidence in having culturally appropriate discussions with BAME patients and their families. Equipping professionals to be more confident about such ACP discussions may lead to achieving patient preferences. Aims This study explores professional views and experiences of ACP with patients from BAME backgrounds. With a focus on making decisions about resuscitation, it aims to identify barriers and enablers and person-centred outcomes to such discussions and provide evidence for training professionals. Methods Thematic analysis of qualitative semi-structured interviews with HCPs across primary, secondary and tertiary care in Leicester, including GPs, hospital doctors and nurses. Results There was an emphasis on building rapport, the timing of discussions and navigating communication barriers. Barriers to decision-making included: patients‘ and their families understanding of both prognosis and resuscitation; and differing values amongst generations of migrants. Professionals struggled with how to find a balance between acting in a non-discriminatory way whilst respecting cultural differences. Patients and family members, who wished to prolong life at all costs, commonly framed religiously as the sanctity of life, was described as a key challenge to discussions. Most HCPs highlight the need for further training and/or support. Conclusion There are significant barriers for HCPs when discussing resuscitation decisions with people from BAME communities. This increases the complexity of navigating ACP and achieving patients‘ preferences. HCPs would benefit from further training and support.