Kathryn Berzins

UK self-care support initiatives for older patients with long-term conditions: a review

Objectives: Supporting self-care for people with long-term conditions is an aim of UK health policy. As many with long-term conditions are older it is of interest to explore which self-care support interventions have positive impacts for this group. This review explores what types of intervention have been reported in the UK and their impact upon older people. Methods: Studies were identified using existing reviews, electronic databases and through hand searching journals. After inclusion and exclusion criteria were applied data were extracted from 18 studies. These were summarized in a narrative synthesis supported by summary tables. Results: All studies described interventions to support self-care, many targeted at people with arthritis. All used patient education, usually delivered to groups by a range of professionals. The majority of studies reported some significant positive outcomes, most frequently changes in physical functioning, illness knowledge and increased self-efficacy. The average age of participants was 60. Discussion: This review shows that self-care interventions have had positive effects for older participants but it remains unknown how best to support self-care in participants over 75, a group of people with long-term conditions who may have different needs.

Carers’ experiences of involvement in care planning: a qualitative exploration of the facilitators and barriers to engagement with mental health services

BackgroundFormal recognition and involvement of carers in mental health services has been the focus of recent policy and practice initiatives as well as being supported by carers themselves. However, carers still report feeling marginalised and distanced from services. A prominent theme is that that they are not listened to and their concerns are not taken seriously. Compared to service user views, the reasons underpinning carers’ dissatisfaction with care-planning procedures have been relatively neglected in the research literature, despite the substantial and significant contribution that they make to mental health services. The aim of the study was to explore carers’ experiences of the care planning process for people with severe mental illness.MethodsQualitative interviews and focus groups were undertaken with carers. Data were combined and analysed using framework analysis.ResultsWhilst identifying a shared desire for involvement and confirming a potential role for carers within services, our data highlighted that many carers perceive a lack of involvement in care planning and a lack of recognition and appreciation of their role from health professionals. Barriers to involvement included structural barriers, such as the timing and location of meetings, cultural barriers relating to power imbalances within the system and specific barriers relating to confidentiality.ConclusionsThis qualitative study led by a researcher who was a carer herself has developed the understanding of the potential role of carers within the care planning process within mental health services, along with the facilitators and barriers to achieving optimal involvement.

Defining Quality of Life in the Children of Parents with Severe Mental Illness: A Preliminary Stakeholder-Led Model

Severe parental mental illness poses a challenge to quality of life (QoL) in a substantial number of children and adolescents, and improving the lives of these children is of urgent political and public health concern. This study used a bottom-up qualitative approach to develop a new stakeholder-led model of quality of life relevant to this population. Qualitative data were collected from 19 individuals participating in focus groups or individual interviews. Participants comprised 8 clinical academics, health and social care professionals or voluntary agency representatives; 5 parents and 6 young people (aged 13–18 yrs) with lived experience of severe parental mental illness. Data underwent inductive thematic analysis for the purposes of informing a population-specific quality of life model. Fifty nine individual themes were identified and grouped into 11 key ‘meta-themes’. Mapping each meta-theme against existing child-centred quality of life concepts revealed a multi-dimensional model that endorsed, to a greater or lesser degree, the core domains of generic quality of life models. Three new population-specific priorities were also observed: i) the alleviation of parental mental health symptoms, ii) improved problem-based coping skills and iii) increased mental health literacy. The identification of these priorities raises questions regarding the validity of generic quality of life measures to monitor the effectiveness of services for families and children affected by severe mental illness. New, age-appropriate instruments that better reflect the life priorities and unique challenges faced by the children of parents with severe mental illness may need to be developed. Challenges then remain in augmenting and adapting service design and delivery mechanisms better to meet these needs. Future child and adult mental health services need to work seamlessly alongside statutory education and social care services and a growing number of relevant third sector providers to address fully the quality of life priorities of these vulnerable families.

A cluster randomised controlled trial and process evaluation of a training programme for mental health professionals to enhance user involvement in care planning in service users with severe mental health issues (EQUIP): study protocol for a randomised controlled trial

BackgroundInvolving service users in planning their care is at the centre of policy initiatives to improve mental health care quality in England. Whilst users value care planning and want to be more involved in their own care, there is substantial empirical evidence that the majority of users are not fully involved in the care planning process. Our aim is to evaluate the effectiveness and cost-effectiveness of training for mental health professionals in improving user involvement with the care planning processes.Methods/DesignThis is a cluster randomised controlled trial of community mental health teams in NHS Trusts in England allocated either to a training intervention to improve user and carer involvement in care planning or control (no training and care planning as usual).We will evaluate the effectiveness of the training intervention using a mixed design, including a ‘cluster cohort’ sample, a ‘cluster cross-sectional’ sample and process evaluation. Service users will be recruited from the caseloads of care co-ordinators.The primary outcome will be change in self-reported involvement in care planning as measured by the validated Health Care Climate Questionnaire. Secondary outcomes include involvement in care planning, satisfaction with services, medication side-effects, recovery and hope, mental health symptoms, alliance/engagement, well-being and quality of life. Cost- effectiveness will also be measured. A process evaluation informed by implementation theory will be undertaken to assess the extent to which the training was implemented and to gauge sustainability beyond the time-frame of the trial.DiscussionIt is hoped that the trial will generate data to inform mental health care policy and practice on care planning.Trial Registration NumberISRCTN16488358 (14 May 2014)

Implementation of case management in long-term conditions in England: Survey and case studies:

Objectives Our aim was to describe the current provision of case management arrangements in primary care for people with long-term conditions in England and identify the extent and nature of self-care support services within it. Methods Cross-sectional survey of primary care trusts (PCTs) in England and four case studies using semi-structured interviews and focus groups. Results Services were predominantly nurse-led, typically by community matrons, and delivered on a geographical basis. Often multiple arrangements existed within a PCT but integration of services with local authority adult social care was not widespread. A range of self-care support services were utilized and often tuition was provided by case managers to patients in their own homes. Assessment, care coordination and direct support to patients were the principal tasks. Often care plans were limited to primary care services and did not include service costings. Links with nurse-led services within PCTs were evident but operational links with adult social care were poorly developed. This is consistent with previous research relating to the introduction of care management in social services in England which also resulted in a plethora of organizational arrangements. Conclusions Case management for patients with long-term conditions is at an early stage of development. Effective links with a range of local services are required if care plans are going to be comprehensive.

Mental healthcare staff well-being and burnout: A narrative review of trends, causes, implications, and recommendations for future interventions.

Rising levels of burnout and poor well-being in healthcare staff are an international concern for health systems. The need to improve well-being and reduce burnout has long been acknowledged, but few interventions target mental healthcare staff, and minimal improvements have been seen in services. This review aimed to examine the problem of burnout and well-being in mental healthcare staff and to present recommendations for future research and interventions. A discursive review was undertaken examining trends, causes, implications, and interventions in burnout and well-being in healthcare staff working in mental health services. Data were drawn from national surveys, reports, and peer-reviewed journal articles. These show that staff in mental healthcare report poorer well-being than staff in other healthcare sectors. Poorer well-being and higher burnout are associated with poorer quality and safety of patient care, higher absenteeism, and higher turnover rates. Interventions are effective, but effect sizes are small. The review concludes that grounding interventions in the research literature, emphasizing the positive aspects of interventions to staff, building stronger links between healthcare organizations and universities, and designing interventions targeting burnout and improved patient care together may improve the effectiveness and uptake of interventions by staff.

Case management for long-term conditions: developing targeting processes.

Intensive case management (ICM) is traditionally targeted at patients with complex needs and exists within a wider service context. Targeting is integral to the efficiency of the service. A process and outcome evaluation of case management was conducted in a large urban area in England between 2007 and 2008. Data from a postal questionnaire, interviews, and resource utilization data of patients within the service are used to explore issues associated with targeting. The study identified various approaches to select appropriate patients. A lack of standardization in assessment was apparent. Reported policies on case allocation, caseload size, and frequency of visiting patients varied. There was little evidence of ICM. Not all patients in receipt of case management admitted to hospital were diagnosed with a specific disease or condition. Few patients were recorded as discharged and transferred to another service. We conclude that measures of targeting often focus only on admission to a service and specific outcomes and suggest that targeting be considered as a series of interconnected processes rather than static indicators.

Case management for people with long-term conditions: impact upon emergency admissions and associated length of stay

AIM This paper describes findings from a study that evaluated the implementation and impact of case management for long-term conditions (CMLTC) in 10 primary care trusts (PCTs). BACKGROUND Patients who have long-term conditions and complex health and social needs may require case management to deliver and coordinate their care from a range of agencies. METHODS A cross-sectional postal survey of managers with lead responsibility for CMLTC in each PCT is adopted to describe the implementation of services. A retrospective cohort analysis of longitudinal routinely collected admission data for patients enrolled within the CMLTC service (nine months before and nine months after the entry; n = 867) is used to measure their impact. FINDINGS The organisation of case management varied between PCTs in some aspects despite a high level of coordination across the geographical area. Mean emergency admissions and associated length of stay (LOS) for patients reduced significantly in the nine months after the service entry. There were a number of fairly robust positive and negative influences on these outcome measures in the regression analysis. Most patients with a history of emergency admissions experienced a marked improvement over time. However, most of those without any or with few admissions experienced an increase in admissions and corresponding LOS. Furthermore, a proportion of frequent service users with particular diagnoses also experienced an increase or remained at a high level. A very modest effect was shown with regard to the features of case management arrangements. For each day spent in hospital before service entry, patients are predicted to experience a reduction of nearly one day after. The main contributor explaining increases in LOS for emergency admissions was the number of primary and secondary diagnoses. Each added diagnosis is associated with a 2.4-day increase in LOS, everything else being equal.

Service users’ and carers’ views of the Named Person provisions under the Mental Health (Care and Treatment) (Scotland) Act 2003

Background: The Mental Health (Care and Treatment) (Scotland) Act 2003 removed the role of the Nearest Relative and allowed service users to nominate instead a Named Person. Service users’ and carers’ perceptions of, and experiences with the new legislation were unknown. Aim: To identify whom service users had nominated; important factors in making a nomination; and carers’ perspectives of the provisions. Method: Twenty service users and ten carers were interviewed to explore experiences with the Named Person provisions. Data were analysed using Thematic Analysis. Results: Service users often did not wish to nominate their Nearest Relative, many nominating a friend. Important factors in making a nomination were that the nominee knew the service users wishes and could be trusted to carry them out. Service users may also choose not to nominate relatives to spare them responsibility. Conclusions: Service users’ relationships with Nearest Relatives may be problematic. Scottish service users should be supported in making a nomination prior to becoming subject to the Act. In the rest of the UK, relations between service users and their Nearest Relatives must be considered and service users supported to displace their Nearest Relative if necessary.

Emergent approaches to care coordination in England: exploring the evidence from two national organizations.

For many years, there has been an international concern about the fragmented nature of health and social care services for vulnerable older people and younger adults. This article examines the implementation of two major policies in England designed to ensure frail adults and older people receive services appropriate to their needs. First, care management, which was introduced in 1993 and provided by local government, and second, case management, which was introduced in 2005 and provided by primary care through the National Health Service. An analysis of the implementation of the two policies is presented, and data from two national surveys are used to describe similarities and differences between the two approaches in terms of goals, arrangements, service characteristics, and indicators of integration and differentiation within care coordination arrangements. Both were designed to promote the provision of care at home as an alternative to more costly alternatives. Discretion within the policy implementation process has militated against the development of a more differentiated approach to care management in local authorities as compared with case management in primary care trusts and more generally, integration between the two. Future developments within both service settings will be influenced by the introduction of personal budgets.