Defining continuity of care from the perspectives of mental health service users and professionals: an exploratory, comparative study.

BACKGROUND: Continuity of care (COC) is central to the organization and delivery of mental health services. Traditional definitions have excluded service users, and this lack of involvement has been linked to poor conceptual clarity surrounding the term. Consequently, very little is known about the differences and similarities in the conceptualization of COC by mental health service users and professionals. OBJECTIVE: To explore and compare mental health service users' and professionals' definitions of COC. METHODS: Using an exploratory, qualitative design, five focus groups with 32 service users each met twice. Data were analysed thematically to generate a service user-defined model of COC. In a cross-sectional survey, health and social care professionals (n = 184) defined COC; responses were analysed thematically. Service user and professional definitions were conceptually mapped and compared to identify similarities and differences. RESULTS: There was crossover between the service user and professional derived models of COC. Both contained temporal, quality, systemic, staff, hospital and needs-related elements of COC. Service users prioritized access, information, peer support and avoiding services; health professionals most frequently referred to staff, cross-sectional and temporal COC. Service users alone identified service avoidance, peer support and day centres as COC elements; professionals alone identified cross-sectional working. CONCLUSIONS: Important similarities and differences exist in service user and professional conceptualizations of COC. Further research is necessary to explore these differences, prior to integrating service user and professional perspectives in a validated COC framework which could enable the development and evaluation of interventions to improve COC, informing policy and practice.

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.

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

BACKGROUND: Organizational 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. METHODS: The 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. RESULTS: A 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. CONCLUSIONS: Cultural 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.

Pan-London tuberculosis services: a service evaluation.

BACKGROUND: London has the largest proportion of tuberculosis (TB) cases of any western European capital, with almost half of new cases drug-resistant. Prevalence varies considerably between and within boroughs with research suggesting inadequate control of TB transmission in London. Economic pressures may exacerbate the already considerable challenges for service organisation and delivery within this context. This paper presents selected findings from an evaluation of London's TB services' organisation, delivery, professional workforce and skill mix, intended to support development of a strategic framework for a pan-London TB service. These may also interest health service professionals and managers in TB services in the UK, other European cities and countries and in services currently delivered by multiple providers operating independently. METHODS: Objectives were: 1) To establish how London's TB services are structured and delivered in relation to leadership, management, organisation and delivery, coordination, staffing and support; 2) To identify tools/models for calculating skill mix as a basis for identifying skill mix requirements in delivering TB services across London; 3) To inform a strategic framework for the delivery of a pan-London TB service, which may be applicable to other European cities. The multi-method service audit evaluation comprised documentary analysis, semi-structured interviews with TB service users (n = 10), lead TB health professionals and managers (n = 13) representing London's five sectors and focus groups with TB nurses (n = 8) and non-London network professionals (n = 2). RESULTS: Findings showed TB services to be mainly hospital-based, with fewer community-based services. Documentary analysis and professionals' interviews suggested difficulties with early access to services, low suspicion index amongst some GPs and restricted referral routes. Interviews indicated lack of managed accommodation for difficult to treat patients, professional workforce shortages, a need for strategic leadership, nurse-led clinics and structured career paths for TB nurses and few social care/outreach workers to support patients with complex needs. CONCLUSIONS: This paper has identified key issues relating to London's TB services' organisation, delivery, professional workforce and skill mix. The majority of these present challenges which need to be addressed as part of the future development of a strategic framework for a pan-London TB service. More consistent strategic planning/co-ordination and sharing of best practice is needed, together with a review of pan-London TB workforce development strategy, encompassing changing professional roles, skills development needs and patient pathways. These findings may be relevant with the development of TB services in other European cities.

Listening to those on the frontline: service users' experiences of London tuberculosis services.

AIM: To explore tuberculosis (TB) service users' experiences and satisfaction with care provision. BACKGROUND: Thirty-nine percent of all new UK TB cases occur in London. Prevalence varies considerably between and within boroughs. Overall, research suggests inadequate control of London's TB transmission; TB has become a health care priority for all London Primary Care Trusts. Service users' experiences and satisfaction with care provision have not been explored adequately previously. METHODS: A qualitative research design, using semi-structured face-to-face interviews was used. Ten service users, purposively selected in key risk groups across London, were interviewed. All interviews were digitally recorded with users' permission, transcribed verbatim, and analyzed thematically. RESULTS: Participants were treated in local hospitals for 6-12 months. Treatment was administered by TB nurses to inpatients and outpatients receiving directly observed therapy in consultation with medical staff and home visits for complex cases. Two participants did not realize the importance of compliance. Overall, they were satisfied with many TB services' aspects, communication, and service organization. Early access, low suspicion index amongst some GPs, and restricted referral routes were identified as service barriers. Other improvement areas were information provision on drug side effects, diet, nutritional status, and a few health professionals' attitudes. The effects on people varied enormously from minimal impact to psychological shock; TB also affected social and personal aspects of their life. With regard to further support facilities, some positive views on managed accommodation by TB-aware professionals for those with accommodation problems were identified. CONCLUSION: This first in-depth study of TB service users' experiences across London offers valuable insights into service users' experiences, providing information and recommendations for a strategic framework for TB service organization and delivery. Overall, further research is needed; TB services - local, national, and international - need to be more closely aligned with service users' complex needs.

Achieving continuity of care: facilitators and barriers in community mental health teams.

BACKGROUND: The integration of mental health and social services for people diagnosed with severe mental illness (SMI) has been a key aspect of attempts to reform mental health services in the UK and aims to minimise user and carer distress and confusion arising from service discontinuities. Community mental health teams (CMHTs) are a key component of UK policy for integrated service delivery, but implementing this policy has raised considerable organisational challenges. The aim of this study was to identify and explore facilitators and barriers perceived to influence continuity of care by health and social care professionals working in and closely associated with CMHTs. METHODS: This study employed a survey design utilising in-depth, semi-structured interviews with a proportionate, random sample of 113 health and social care professionals and representatives of voluntary organisations. Participants worked in two NHS Mental Health Trusts in greater London within eight adult CMHTs and their associated acute in-patient wards, six local general practices, and two voluntary organisations. RESULTS: Team leadership, decision making, and experiences of teamwork support were facilitators for cross boundary and team continuity; face-to-face communication between teams, managers, general practitioners, and the voluntary sector were facilitators for information continuity. Relational, personal, and longitudinal continuity were facilitated in some local areas by workforce stability. Barriers for cross boundary and team continuity were specific leadership styles and models of decision making, blurred professional role boundaries, generic working, and lack of training for role development. Barriers for relational, personal, and longitudinal continuity were created by inadequate staffing levels, high caseloads, and administrative duties that could limit time spent with users. Incompatibility of information technology systems hindered information continuity. Flexible continuity was challenged by the increasingly complex needs of service users. CONCLUSIONS: Substantive challenges exist in harnessing the benefits of integrated CMHT working to deliver continuity of care. Team support should be prioritised in terms of IT provision linked to a review of current models of administrative support. Investment in education and training for role development, leadership, workforce retention, and skills to meet service users' complex needs are recommended.

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.

Closing the gap between expectations and practice in continuity of care: can we still teach continuity of care?

An educational improvement audit of general practitioner (GP) training in continuity of patient care with special reference to patients with long-term conditions was commissioned by a postgraduate medical and dental deanery. The audit comprised interviews (n = 13) with GP trainers, trainees and GPs who had recently completed their training. These interviews were thematically analysed and the findings discussed in workshops with stakeholders in GP education. The interviews showed that trainers and trainees found considerable difficulty in reconciling the values of continuity of care with recent changes in policy and practice. It was also found that while training practices could demonstrate aspects of continuity of patient care, it was difficult to give trainees practical experience and responsibilities that could underline and reinforce this. Newly qualified GPs found it particularly difficult to maintain and apply their understanding of continuity of care in the realities of practice after moving on from their training practice and before obtaining a long-term GP post. The workshops formulated proposals for a series of measures to make continuity of care, in all its forms, more explicit in every element of training and in support for professional development. These proposals were analysed to develop a phased action programme and to assess their cost and utility. This showed great potential to improve the value of training in continuity of care for GP practices and trainees, and ultimately for patients.

Specialist nursing interventions for inflammatory bowel disease.

BACKGROUND: The number, type and roles of specialist nurses dedicated to the care and management of patients with inflammatory bowel disease is increasing. Despite this increase, there has been little evidence to date to demonstrate the effectiveness of specialist nursing interventions. This review aims to identify and evaluate the impact of specialist nursing interventions on management of inflammatory bowel disease, access to treatment, remission, morbidity and quality of life. OBJECTIVES: To identify and evaluate the impact of specialist nursing interventions for improving the care and management of patients with inflammatory bowel disease (IBD). SEARCH STRATEGY: A comprehensive search of databases including the Cochrane Library, MEDLINE, and British Nursing Index was carried out to identify trials. References from relevant papers were searched and hand searching was undertaken of relevant publications including gastroenterology conference proceedings to identify additional trials (date of last search 30 September 2008). SELECTION CRITERIA: Randomised controlled trials, controlled before and after studies and interrupted time series studies of gastroenterology and IBD specialist nurses intending to improve access and outcomes for patients with ulcerative colitis and Crohn's disease were considered for inclusion. DATA COLLECTION AND ANALYSIS: Two investigators independently extracted data and assessed trial quality. Any discrepancies were resolved by consensus. MAIN RESULTS: One randomised controlled trial of 100 IBD patients receiving a specialist nurse delivered counselling package (n = 50) or routine outpatient clinic follow-up (n = 50), with assessments at entry and six and 12 months, was included in this review. This study was of low methodological quality. Disease remission, patient compliance, clinical improvement, utilisation of nurse-led services, patient satisfaction, hospital admission, outpatient attendance, progression to surgery, length of hospital stay and cost effectiveness data were not reported. Pooled mean mental health scores at 6 months were higher in patients who received nurse-led counselling compared to patients who received routine follow-up. However, this difference was not statistically significant (WMD 3.67; 95% CI -0.44 to 7.77; P = 0.08). Other pooled assessments of physical and psychological well-being showed no statistically significant differences. AUTHORS' CONCLUSIONS: Although specialist nurse counselling interventions might provide benefit for IBD patients the one included study was of low quality and the results of this study should be interpreted with caution. Higher quality trials of gastroenterology and IBD specialist nursing interventions are needed to assess the impact of specialist nursing interventions on the care and management of patients with inflammatory bowel disease.

Stakeholder perceptions of specialist Inflammatory Bowel Disease nurses' role and personal attributes.

The number of advanced nursing roles dedicated to the care and management of patients with chronic, long-term Inflammatory Bowel Disease (IBD) has increased, particularly in the UK. However, studies reporting effectiveness and scope of practice remain extremely limited. This paper focuses on specialist or advanced nursing practice from the perception of patients and their families living with IBD. One hundred and thirty-one qualitative descriptions of the perceived difference made by specialist nurses to the care of IBD patients were received from members of the UK National Association for Crohn's Disease and Colitis following invited nominations in support of its Nursing Award. These qualitative descriptions were analysed thematically. Two main categories of themes emerged: role behaviours/skills and personal qualities/attributes. Twenty-four role behaviours and 12 personal attributes were identified. In contrast with literature on advanced nursing roles which stresses technical competence, findings from this study suggest that patients perceive support, advice, caring, empathy and disease management to be of particular importance to their care.