19 pubs · 546 cites · h-index 12
Purpose The purpose of this paper is to understand how women with a diagnosis of schizophrenia or bipolar disorder approach medication decision making in pregnancy. Design/methodology/approach The study was co-produced by university academics and charity-based researchers. Semi-structured interviews were conducted by three peer researchers who have used anti-psychotic medication and were of child bearing age. Participants were women with children under five, who had taken anti-psychotic medication in the 12 months before pregnancy. In total, 12 women were recruited through social media and snowball techniques. Data were analyzed following a three-stage process. Findings The accounts highlighted decisional uncertainty, with medication decisions situated among multiple sources of influence from self and others. Women retained strong feelings of personal ownership for their decisions, whilst also seeking out clinical opinion and accepting they had constrained choices. Two styles of decision making emerged: shared and independent. Shared decision making involved open discussion, active permission seeking, negotiation and coercion. Independent women-led decision making was not always congruent with medical opinion, increasing pressure on women and impacting pregnancy experiences. A common sense self-regulation model explaining management of health threats resonated with women’s accounts. Practical implications Women should be helped to manage decisional conflict and the emotional impact of decision making including long term feelings of guilt. Women experienced interactions with clinicians as lacking opportunities for enhanced support except in specialist perinatal services. This is an area that should be considered in staff training, supervision, appraisal and organization review. Originality/value This paper uses data collected in a co-produced research study including peer researchers.
BACKGROUND: Positive psychology interventions may usefully treat depression and can be delivered online to reduce the treatment gap. However, little is known about how acceptable patients find this approach. To address this, the present study interviewed recent users of a positive psychology self-help website. METHODS: In-depth semi-structured interviews explored the experiences of twenty-three participants from a larger feasibility study. A stratified purposive sampling strategy selected participants with varying intervention experience according to their intervention logins, as well as varying age, gender and depressive symptoms. Framework analysis was used to explore patterns and linkages within and between participants' accounts. RESULTS: Acceptability varied between participants. Those who found it more acceptable felt it was relevant to their depression and reported feeling empowered by a self-help approach. Conversely, participants for whom it was less acceptable perceived the positive focus irrelevant to their depression and found the emphasis on self-action unsupportive. CONCLUSIONS: The acceptability of an online positive psychology intervention may be facilitated by a patients' preference for a psychological focus on the positive. However, patients may also have distinct preferences for online self-help. Future research should investigate the importance of the therapeutic orientation of online self-help interventions and whether patients' preferences for these can be reliably identified. This could help to target online self-help in clinical practice.
We argue for the importance of activity provision for people with dementia to help promote wellbeing among an increasing proportion of older people.
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.
While there is substantial common ground between the ideas of self-directed support and recovery, there are also significant differences in how these ideas have been implemented in policy and practice. This paper develops an ‘ideal type’ model of how personal budgets may need to be set up for people with mental health difficulties if they are to be effective as a mechanism that can enable recovery. Aspects of this ‘ideal type’ model are then examined in relation to the reported experiences of people accessing personal budgets from a national study of the implementation of personal budgets in mental health in England. In-depth qualitative interviews were undertaken across three Local Authority areas with 53 people with serious mental health difficulties who had accessed personal budgets in 2012-13. Our findings suggest that personal budgets can support recovery thinking and processes, and can be used to mobilise relevant resources to make this possible. Key to achieving this can be co-productive and/or peer-supported processes of assessment and planning. In addition, resource allocation may need to be flexible to take account of fluctuating levels of mental distress, and budgets should be linked to recovery goals rather than assuming long-term care needs.
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 methodologies, co-production makes the democratisation of research a primary objective in order to produce better quality and more relevant studies. Co-production also addresses inequalities in power and control within research projects; this way of working does provide a healthy challenge to traditional research hierarchies. Practical implications – Lessons learned should be honestly shared to develop co-production research methods. Projects need to have a strategy for how to value different contributions and facilitate constructive relationships if discord emerges. Establishing clear project roles, expectations and process for payment are essential in developing genuine collaborative partnerships. Originality/value – It is a viewpoint paper.
Personal budgets aim to increase choice and independence for people with social care needs but they remain underused by people with mental health problems compared to other disability groups. The use of personal budgets may impact on families in a variety of ways, both positive and negative. This paper draws on interviews, undertaken in 2012-2013 with 18 family carers and 12 mental health service users, that explored experiences of family involvement in accessing and managing personal budgets for a person with mental health-related social care needs. The sample was drawn from three sites across England, with additional carers being recruited via voluntary sector networks. Our findings show that for many people with severe mental health needs who lack motivation and confidence to negotiate access to personal budgets, carers may provide the necessary support to enable them to benefit from this form of social care support. We illustrate the role carers may play in initiating, pursuing and maximising the level of support available through personal budgets. However, some carers interviewed considered that personal budget funding was reduced because of practitioners' assumptions about carers' willingness and ability to provide support. We also report perceived tensions between family carers and practitioners around appropriate involvement in decision-making. The study findings have implications for local authorities, practitioners and family carers in supporting the involvement of family carers in support for people with severe mental health problems.
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.
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.
There has been substantial research on the implementation of personal budgets across adult social care in England, but relatively little exploration of take-up within the field of mental health—and whether personal budgets are providing an effective mechanism for service users to exercise greater power, choice and control in their lives. Drawing upon in-depth interviews with fifty-two people using mental-health-related social care services and twenty-eight social work and other practitioners, undertaken for a national study in 2010–13, this paper explores experiences from their different perspectives. Interviews were undertaken in three English local authorities which were at different stages of implementing personal budgets in mental health social care. Data were analysed using an Interpretive Framework Approach. The findings provide evidence of how personal budgets may deliver opportunities for people to take more power and control, sometimes collaboratively with practitioners, and also identify some of the barriers and challenges which can militate against such outcomes. A key factor in enabling personal budgets to support empowerment and recovery was reported to be the quality and continuity of the professional relationship—which raises particular implications for the organisation of mental health social work and the organisational cultures within which this is situated.
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.
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.
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.