Contribution of the voluntary sector to mental health crisis care in England: protocol for a multimethod study.

Introduction - Timely access to the right kind of support for people experiencing a mental health crisis can be problematic. The voluntary sector (VS) plays a key role in providing support and enabling access, but there is a knowledge gap concerning its contribution and interface with public services in mental health crisis care. Methods and analysis - This study aims to address this. The study has three empirical elements: (1) a national survey of voluntary sector organisations (VSOs) in England and national stakeholder interviews to develop a typology of organisations and interventions provided by VSOs; (2) detailed mapping of VS services in two regions through interviews and extending the national survey; (3) four case studies, identified from the regional mapping, of VS mental health crisis services and their interface with National Health Service (NHS) and local authority services, at both a system and individual level. Data collection will involve interviews with commissioners; VSO and NHS or local authority providers; and focus groups with people who have experience of VSO crisis support, both service users and carers; and mapping the crisis trajectory of 10 service users in each study site through narrative interviews with service users and informal carers to understand the experience of VSO crisis care and its impact. Ethics and dissemination - The University of Birmingham Humanities and Social Sciences Ethical Review Committee granted ethical approval (reference ERN_16-1183) for the national and regional elements of the study. Ethical review by the Health Research Authority will be required for the case study research once the sites have been identified from the first two elements of the study. A range of methods including a policy seminar, publication in academic journals and a tool kit for commissioners and practitioners will be produced to maximise the impact of the findings on policy and practice

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference

Palliative care integration for patients with advanced chronic obstructive pulmonary disease (COPD):An action research study

Background: Chronic obstructive pulmonary disease (COPD) is a life-limiting condition where patients have palliative care needs. Despite increasing awareness about the role palliative care could play in care provision for patients with advanced COPD, integration in standard care remains underdeveloped. The disease unpredictability and misconceptions about palliative care being only relevant for patients in oncological settings and being equivalent to end-of-life care prevent a timely integrated approach in advanced COPD. Aim: To understand how to integrate palliative care provision for patients with advanced COPD in a respiratory care service in Southern Switzerland. Methods: A participatory action research approach was conducted in two sequential phases. Phase I explored the experiences and perceptions of five advanced COPD patients and five informal carers during the illness trajectory. Phase II focused on developing knowledge on palliative care integration in advanced COPD through six action research cycles with healthcare professionals working in both palliative (three healthcare professionals) and respiratory care settings (four healthcare professionals). Results: Living day to day with COPD, psychosocial dimension of the disease and management of complex care were the main themes identified in the first phase of the study. During the second phase key elements of integrated palliative care in advanced COPD such as multidimensional assessment, healthcare professionals’ education, interdisciplinary team meetings and knowledge dissemination were identified. These elements converged in a new integrated palliative care model for patients with advanced COPD. Conclusion: The new integrated palliative care model in advanced COPD includes essential elements with a focus on patients, healthcare professionals and care delivery. Further research on model testing in clinical practice, service development, implementation processes and possible outcomes, including evaluation of the financial impact of integrated palliative care provision is necessary to foster this care approach across all possible settings

Caregiving in multiple sclerosis and quality of life: a meta-synthesis of qualitative research

Objective: The lack of adequate conceptualisation and operationalisation of quality of life (QoL) limits the ability to have a consistent body of evidence to improve QoL research and practice in informal caregiving for people with multiple sclerosis (MS). Thus, we conducted a meta-synthesis of qualitative research to improve the conceptual understanding of the experiences of MS carers and to identify factors that affect carers' QoL. Design: Systematic searches of five electronic databases yielded 17 qualitative studies which were synthesised using the principles of meta-ethnography. Results: The synthesis resulted in nine inter-linking themes: Changes and losses; challenges revolving around MS; caregiving demands; burden of care; future concerns; external stressors; experiences of support; strategies used in managing the caregiving role; and motivating factors. Our findings suggest that MS carers can have both positive and negative experiences which may bring challenges and rewards to the carers. Conclusion: We present a proposed QoL model for MS caregiving which can be used to inform the development of interventions for MS carers to improve their QoL. However, further empirical research is needed to examine the utility of this model and to explore the concept of QoL in MS carers in more detail

Creating Excellence in Dementia Care: A Research Review for Ireland's National Dementia Strategy

Examines the prevalence and economic and social costs of dementia; policies, practices, and data on health and social care services in community-based, acute care, and long-term residential settings; and proposed elements for a new strategy

Harnessing Technology: new modes of technology-enhanced learning: opportunities and challenges

A report commissioned by Becta to explore the potential impact on education, staff and learners of new modes of technology enhanced learning, envisaged as becoming available in subsequent years. A generative framework, developed by the researchers is described, which was used as an analytical tool to relate the possibilities of the technology described to learning and teaching activities. This report is part of the curriculum and pedagogy strand of Becta's programme of managed research in support of the development of Harnessing Technology: Next Generation Learning 2008-14. A system-wide strategy for technology in education and skills. Between April 2008 and March 2009, the project carried out research, in three iterative phases, into the future of learning with technology. The research has drawn from, and aims to inform, all UK education sectors

Psychosocial intervention for carers of people with dementia: What components are most effective and when? A systematic review of systematic reviews

Psychosocial interventions for carers of people with dementia are increasingly recognized as playing an important role in dementia care. We aim to systematically review the evidence from existing systematic reviews of psychosocial interventions for informal carers of people with dementia.  Thirty-one systematic reviews were identified; following quality appraisal, data from 13 reviews, rated as high or moderate quality, were extracted.  Well-designed, clearly structured multi-component interventions can help maintain the psychological health of carers of people with dementia and delay institutionalization of the latter. To be most effective, such interventions should include both an educational and a therapeutic component; delivery through a support group format may further enhance their effectiveness.  Successful translation of evidence into practice in this area remains a challenge. Future research should focus on determining the most cost-effective means of delivering effective multi-component interventions in real-world settings; the cost-effective potential of technology-based interventions is considerable

A practitioner behaviour change intervention for deprescribing in the hospital setting

Background Half of older people in hospital have a pre-admission medicine prescribed that is potentially inappropriate. Deprescribing research has historically focused on the primary care setting. The aim of this thesis was to develop a practitioner behaviour change intervention for enhancing deprescribing in the hospital setting. Methods Underpinned by behavioural science, the research programme comprised four empirical studies: evaluation of existing hospital deprescribing activity; survey of patients’ and carers’ attitudes towards deprescribing; focus groups with geriatricians and pharmacists to identify key barriers and enablers to address in an intervention; expert panel consensus study to select Behaviour Change techniques (BCTs) for the intervention. Results Deprescribing in hospital occurred for 0.6% of pre-admission medicines, of which 84.1% was reactive in response to harm and 15.9% proactive to prevent harm. Deprescribing in hospital was acceptable to patients and carers: 97.4% and 76.3% respectively were willing to accept a doctor’s deprescribing proposition. Geriatricians and pharmacists described several existing deprescribing enablers in hospital including alignment with their generalist role/knowledge and routine patient monitoring. Key barriers to deprescribing were a misconception of patients’ and carers’ resistance to deprescribing, pharmacists’ perception that deprescribing is riskier than continuing to prescribe, pharmacists’ working patterns limiting capacity to support deprescribing and it being a low hospital priority. Introduction of incentives to deprescribe was an enabler. Six BCTs were selected and characterised to address the key barriers and enabler: social comparison (two distinct characterisations); salience of consequences; pros and cons; restructure the physical environment; action planning. Conclusion There is significant scope to increase deprescribing in hospital and this is acceptable to patients and carers. The behavioural intervention to enhance geriatrician and pharmacist led deprescribing requires modelling to determine the optimal configuration of BCTs. Subsequent testing of the intervention is necessary to determine efficacy at enhancing deprescribing and impact on patient outcomes

A discussion of the information needs of people with multiple sclerosis (MS) and the implications for information provision based on a national UK survey of people with MS

This research took place between January and October 2002. It was conducted by the Department of Information Science at Loughborough University and was commissioned and funded by the Multiple Sclerosis Trust (MS Trust). In this article the identified information needs are discussed and possible solutions explored including the use of Extensible Mark–up Language (XML) and Extensible Stylesheet Language (XSL). Qualitative and quantitative methods were used to study the information needs of people with multiple sclerosis (people with MS) in the United Kingdom. 103 people with MS were involved in focus groups that helped to identify significant situations that people with MS had experienced. 4100 people with MS were sent questionnaires (approximately 5% of the MS population). 2030 (49.5%) responded in the time specified. Categories of information need were identified. Their importance and difficulty in obtaining them quantified. The research highlighted how, although people shared many information needs, there were significant differences in terms of: ♦ people’s desire for the information (some people did not want apparently useful information); ♦ the topics they were interested in (due to their situation); ♦ how they wanted that information (due to the physical and psychological condition of the person). Information provision to people with MS was found to have improved dramatically over the last seven years. Out of those respondents who had been diagnosed in the last five years 71% thought they had received information whereas 29% did not, whereas only 29% diagnosed in 1980 stated that they received information. Taking the total surveyed population 43% thought they had not received information. Information provision was found to be inconsistent in terms of subjects covered. However it should be borne in mind that at the time of diagnosis, and also afterwards, it may be difficult for people to take on board information for a variety of reasons. Furthermore, as indicated above, different individual needs means that information provision is a complex task. Many intervening factors can make it fail. The research made it clear how access to relevant information, provided in an appropriate way, could significantly improve the quality of life of the person 2 with MS and that there is considerable scope for improving provision of information to people with MS