Paulina Szymczynska

Implementing personalisation for people with mental health problems: a comparative case study of four local authorities in England

Background Enhancing choice and control for people using services is a mental health and social-care service priority in England. Personalisation is a new policy and practice for delivery of social-care services where eligible adults are allocated a personal budget to spend to meet their agreed support needs. Aims To describe approaches to introducing personal budgets to people with severe and enduring mental health needs, and to identify facilitators or barriers encountered. Method Within four English local authority (LA) areas, purposively selected to provide maximum variation, semi-structured interviews were undertaken with 58 participants from LAs, NHS trusts and third-sector organisations. An Interpretive Framework analysis considered within- and across-site insights. Results Issues arising from the implementation of personalisation for people with mental health needs are presented under two general themes: “responsibility and power” and “vision and leadership”. Key challenges identified were complexities of working across NHS and LAs, the importance of effective leadership and engagement with service user representatives. Conclusions Implementing personal budgets in mental health requires effective engagement of health and social-care systems. Change processes need strong leadership, clear vision and personal commitment, with ownership by all key stakeholders, including front-line practitioners.

A Review of Diagnostic Process and Postdiagnostic Support for People With Dementia in Rural Areas

Purpose: Early diagnosis of dementia allows the affected individuals to make plans, and helps services to identify and act on need. Previous work has suggested that obtaining an early diagnosis in rural areas can be difficult. This paper discusses diagnosis and postdiagnostic support for people with dementia, with a focus on service delivery in rural areas. Methods: A review of published English language literature 1999 to 2011 identified in Medline, PsycINFO, PubMed, Cochrane Library, and ScienceDirect. Results: Primary care services play a key role in accessing services in many health care systems. The role of primary care staff, and in particular general practitioners, is greatest in rural communities where specialist service access is often reduced. Despite this, rural staff often report limited training on supporting people with dementia. Postdiagnostic services can be more difficult to access in rural areas, and informal caregivers in rural areas can be more reluctant to seek such services. Transport difficulties and distance from specialist services can act as a barrier to service use. Memory services have been offered in both rural and urban areas. Conclusions: Addressing stigma, supporting staff, and signposting access are important in all areas, but seem to be particularly important in rural areas. Training and support for general staff in rural areas can be improved. Memory services provide one way of delivering services in rural areas. Service planners should take negative perceptions of dementia, barriers to access, and training of generalist service providers into account when designing dementia services in rural areas.

Meaningful Activities for Improving the Wellbeing of People with Dementia: Beyond Mere Pleasure to Meeting Fundamental Psychological Needs

Aims: Dementia is being increasingly recognised as a major public health issue for our ageing populations. A critical aspect of supporting people with dementia is facilitating their participation in meaningful activities. However, research to date has not drawn on theories of ageing from developmental psychology that would help undergird the importance of such meaningful activity. For the first time, we connect existing activity provision for people with dementia with developmental psychology theories of ageing. Method: We reviewed the literature in two stages: first, we narratively searched the literature to demonstrate the relevance of psychological theories of ageing for provision of meaningful activities for people with dementia, and in particular focused on stage-based theories of adult development (Carl Jung and Erik Erikson), gerotranscendence (Tornstam), selective optimisation with compensation (Baltes and Baltes), and optimisation in primary and secondary control (Heckhausen and Schulz). Second, we systematically searched PubMed and PsycINFO for studies with people with dementia that made use of the aforementioned theories. Results: The narrative review highlights that activity provision for people with dementia goes beyond mere pleasure to meeting fundamental psychological needs. More specifically, that life review therapy and life story work address the need for life review; spiritual/religious activities address the need for death preparation; intergenerational activities address the need for intergenerational relationships; re-acquaintance with previously conducted leisure activities addresses the need for a sense of control and to achieve life goals; and pursuit of new leisure activities addresses the need to be creative. The systematic searches identified two studies that demonstrated the utility of applying Erikson’s theory of psychosocial development to dementia care. Conclusion: We argue for the importance of activity provision for people with dementia to help promote wellbeing among an increasing proportion of older people.

Dementia diagnosis and post-diagnostic support in Scottish rural communities: experiences of people with dementia and their families.

This paper explores the reported difficulties and satisfactions with diagnostic processes and post-diagnostic support offered to people with dementia and their families living in the largest remote and rural region in Scotland. A consultation with 18 participants, six people with dementia and 12 family members, was held using semi-structured interviews between September and November 2010. Three points in the diagnostic process were explored: events and experiences pre-diagnosis; the experience of the diagnostic process; and post-diagnostic support. Experiences of people with dementia and their carers varied at all three points in the diagnostic process. Participant experiences in this study suggest greater efforts are required to meet Government diagnosis targets and that post-diagnostic support needs to be developed and monitored to ensure that once a diagnosis is given people are well-supported. Without post-diagnostic provision Government targets for diagnosis are just that, quota targets, rather than a means to improve service experiences.

Co-production in mental health research: Reflections from the People Study

Purpose – The purpose of this paper is to reflect on the process of co-producing mental health research where work was shared between university academics, charity-based researchers and a Lived Experience Advisory Panel. Design/methodology/approach – The authors express the opinions of a research team made up of people with experience of using mental health services, being carers and being academically trained researchers from a range of health and social science disciplines. Some had experience in several areas. The paper is co-produced to provide collective reflection and recommendations. Findings – Co-production of research is not well documented in published literature. The authors believe there is scope to develop co-production approaches, but further conceptual and theoretical work is needed alongside empirical studies. A socially situated complex research project, possibly involving multi-stakeholder groups, demands flexibility in approach. Similarly to user-controlled and other emancipatory method...

Decisions about the use of psychotropic medication during pregnancy: a qualitative study

Objective To understand the perspectives of women with severe mental illness concerning the use of psychotropic medicines while pregnant. Design Interviews conducted by female peer researchers with personal experience of making or considering decisions about using psychotropic medicines in pregnancy, supported by professional researchers. Participants 12 women who had had a baby in the past 5 years and had taken antipsychotics or mood-stabilisers for severe mental illness within the 12-month period immediately prior to that pregnancy. Recruitment to the study was via peer networks and the women interviewed came from different regions of England. Setting Interviews were arranged in places where women felt comfortable and that accommodated their childcare needs including their home, local library and the research office. Results The views expressed demonstrated complex attempts to engage with decision-making about the use of psychotropic medicines in pregnancy. In nearly all cases, the women expressed the view that healthcare professionals had access to limited information leaving women to rely on experiential and common sense evidence when making decisions about medicine taking during pregnancy. Conclusions The findings complement existing work using electronic health records by providing explanations for the discontinuation of psychotropic medicines in pregnancy. Further work is necessary to understand health professionals’ perspectives on the provision of services and care to women with severe mental illness during pregnancy.

Outcomes from personal budgets in mental health: service users’ experiences in three English local authorities

Abstract Background: In England, personal budgets are offered to eligible people with severe mental health problems to enable them to purchase what is helpful for their quality of life or recovery. However, in-depth insight into people’s own perceptions of the outcomes is lacking. Aims: To investigate people’s own reporting of outcomes from using personal budgets in relation to social care needs arising from severe mental health problems. Method: A convenience sample of 47 individuals receiving personal budgets was recruited from three English local authorities. In-depth semi-structured interviews were subject to thematic framework analysis. Results: Most participants identified positive outcomes across domains interconnected through individual life circumstances, with mental health and wellbeing, social participation and relationships, and confidence and skills most commonly reported. Some needed more support than others to identify goals and make use of the personal budget to take a more active part in the society. Conclusions: Personal budgets can enable people to achieve outcomes that are relevant to them in the context of their lives, particularly through enhancing their wellbeing and social participation. Consideration should be given to distinguishing those individuals potentially requiring more support for engagement from those who can engage more independently to identify and pursue their goals.

Attrition in trials evaluating complex interventions for schizophrenia: Systematic review and meta-analysis

Essential criteria for the methodological quality and validity of randomized controlled trials are the drop-out rates from both the experimental intervention and the study as a whole. This systematic review and meta-analysis assessed these drop-out rates in non-pharmacological schizophrenia trials. A systematic literature search was used to identify relevant trials with ≥100 sample size and to extract the drop-out data. The rates of drop-out from the experimental intervention and study were calculated with meta-analysis of proportions. Meta-regression was applied to explore the association between the study and sample characteristics and the drop-out rates. 43 RCTs were found, with drop-out from intervention ranging from 0% to 63% and study drop-out ranging from 4% to 71%. Meta-analyses of proportions showed an overall drop-out rate of 14% (95% CI: 13-15%) at the experimental intervention level and 20% (95% CI: 17-24%) at the study level. Meta-regression showed that the active intervention drop-out rates were predicted by the number of intervention sessions. In non-pharmacological schizophrenia trials, drop-out rates of less than 20% can be achieved for both the study and the experimental intervention. A high heterogeneity of drop-out rates across studies shows that even lower rates are achievable.

Implementing personalisation in integrated mental health teams in England

Abstract This article explores how role boundaries and professional priorities in integrated mental health teams have impacted on the implementation of personalised approaches to social care support. We focus on the use of personal budgets to meet mental health-related social care needs as a key mechanism for personalised care. Drawing on 28 qualitative interviews with mental health practitioners from three local authorities in England undertaken in 2013, we report nurses’, social workers’, and occupational therapists’ attitudes towards, and engagement with, personal budgets. Professional boundaries and competing priorities heavily influenced the extent to which personal budgets were perceived as a legitimate part of their roles. Across different professional groups, a sense emerged that personal budgets should be somebody else’s job. A focus on attention to treatment, stability, and risk management often resulted in low prioritisation of personal budgets and led practitioners to avoid recommending them or to exclude service users from the process as a way to save time. Implications of the dominant medical model and the protection of traditional professional roles for the implementation of new, person-centred models of practice are discussed.

The trialists’ perspectives on the participant retention in mental health randomised controlled trials

Understanding the factors affecting participant attrition in trials is essential for ensuring ethical and effective conduct, appropriate power of the study and successful completion of data collection. The purpose of this research is to explore factors affecting the retention of patients with mental health problems in non-pharmacological randomised controlled trials (RCTs). This paper reports on a qualitative study with staff working on trials aiming to investigate the processes and strategies employed in mental health RCTs. Trialists from universities and research centres in the UK were recruited to take part in this qualitative study. 30 semi-structured interviews were conducted to understand the experiences of staff working on trials, the processes involved in planning and running RCTs and specific issues relevant to clinical research in mental health. The data were analysed using a framework analysis approach. This paper will focus on what retention strategies are used in non-pharmacological mental health trials, how the issue of attrition is dealt with, and what trialists perceive to affect participants’ decisions about staying involved or ceasing their involvement.