Self-Reported Experiences of Midwives Working in the UK across Three Phases during COVID-19: A Cross-Sectional Study.

Maternity services cannot be postponed due to the nature of this service, however, the pandemic resulted in wide-ranging and significant changes to working practices and services. This paper aims to describe UK midwives' experiences of working during the COVID-19 pandemic. This study forms part of a larger multiple phase research project using a cross-sectional design based on an online survey. The online survey used validated psychometric tools to measure work-related quality of life, wellbeing, coping, and burnout as well as open-ended questions to further understand the experiences of staff working during the pandemic. This paper reports the qualitative data collected from the open-ended questions. The qualitative data were subjected to thematic analysis and the four main themes that emerged were 'relentless stress/pressure', 'reconfiguration of services', 'protection of self and others', and 'workforce challenges'. The key conclusions were that midwives experienced a reduction in quality of working life and significant stress throughout the pandemic due to a range of factors including staffing shortages, restrictions placed on women's partners, changes to services and management support, all of which compounded workforce pressures that existed prior to the pandemic. This research recommends consultation of front-line midwives in relation to possible changes in practice and workforce planning in preparation for crises such as a pandemic and to ensure equitable and supportive management with access to practical and psychological support.

Wellbeing and coping of UK nurses, midwives and allied health professionals during COVID-19-a cross-sectional study.

Nurse, Midwives and Allied Health Professionals (AHPs), along with other health and social care colleagues are the backbone of healthcare services. They have played a key role in responding to the increased demands on healthcare during the COVID-19 pandemic. This paper compares cross-sectional data on quality of working life, wellbeing, coping and burnout of nurses, midwives and AHPs in the United Kingdom (UK) at two time points during the COVID-19 pandemic. An anonymous online repeated cross-sectional survey was conducted at two timepoints, Phase 1 (7th May 2020-3rd July 2020); Phase 2 (17th November 2020-1st February 2021). The survey consisted of the Short Warwick-Edinburgh Mental Wellbeing Scale, the Work-Related Quality of Life Scale, and the Copenhagen Burnout Inventory (Phase 2 only) to measure wellbeing, quality of working life and burnout. The Brief COPE scale and Strategies for Coping with Work and Family Stressors scale assessed coping strategies. Descriptive statistics and multiple linear regressions examined the effects of coping strategies and demographic and work-related variables on wellbeing and quality of working life. A total of 1839 nurses, midwives and AHPs responded to the first or second survey, with a final sample of 1410 respondents -586 from Phase 1; 824 from Phase 2, (422 nurses, 192 midwives and 796 AHPs). Wellbeing and quality of working life scores were significantly lower in the Phase 2 sample compared to respondents in Phase 1 (p<0.001). The COVID-19 pandemic had a significant effect on psychological wellbeing and quality of working life which decreased while the use of negative coping and burnout of these healthcare professionals increased. Health services are now trying to respond to the needs of patients with COVID-19 variants while rebuilding services and tackling the backlog of normal care provision. This workforce would benefit from additional support/services to prevent further deterioration in mental health and wellbeing and optimise workforce retention.

Transitions and challenges for people with Parkinson's and their family members: A qualitative study.

OBJECTIVE: To explore the experiences and challenges of people with Parkinson's and their family members living in the community through the lens of their transitions to better understand the phases and changes in their lives. DESIGN: Qualitative study using semi-structured interviews and analysed using codebook thematic analysis. SETTING/PARTICIPANTS: Purposive sampling was used in primary and secondary healthcare services across Southern England in 2019 to recruit 21 people with Parkinson's (aged between 45-89 years) and 17 family members (13 spouses and 4 adult children, aged between 26-79 years). RESULTS: Participants' descriptions were classified in three main phases of transition from a place of health towards greater dependency on others: 1) 'Being told you are a person with Parkinson's' (early), 2) 'Living with Parkinson's' (mid), and 3) 'Increasing dependency' (decline). Seven sub-themes were identified to describe the transitions within these three phases: phase 1: receiving and accepting a diagnosis; navigating reactions; phase 2: changing social interactions and maintaining sense of self; information: wanting to know but not wanting to know; finding a place within the healthcare system; and 3: changes in roles and relationships; and increasingly dependent. CONCLUSION: This study has identified points of change and means of supporting key transitions such as diagnosis, changes in social connections, and increased use of secondary healthcare services so that comprehensive, holistic, individualised and well-timed support can be put in place to maintain well-being.

What does Success Look Like for Leaders of Integrated Health and Social Care Systems? a Realist Review.

INTRODUCTION: Health and social care services in England are moving towards greater integration, yet little is known about how leadership of integrated care teams and systems can be supported and improved. This realist review explores what works about the leadership of integrated care teams and systems, for whom, in what circumstances and why. METHODS: A realist synthesis approach was undertaken in 2020 to explore English language literature on the leadership of integrated care teams and systems, complemented by ongoing stakeholder consultation. RESULTS: Evidence was identified for seven potentially important components of leadership in integrated care teams and systems: 'inspiring intent to work together'; 'creating the conditions'; 'balancing multiple perspectives'; 'working with power'; 'taking a wider view'; 'a commitment to learning and development' and 'clarifying complexity'. DISCUSSION: Research into the leadership of integrated care teams and systems is limited, with ideas often reverting to existing framings of leadership, where teams and organisations are less complex. Research also often focuses on the importance of who the leader is rather than what they do. CONCLUSION: This review has generated new perspectives on the leadership of integrated care teams and systems that can be built upon, developed, and tested further.

Health care professionals' perspectives on self-management for people with Parkinson's: qualitative findings from a UK study.

BACKGROUND: Parkinson's disease is a long-term, complex health condition. To improve or maintain quality of life, people with Parkinson's can have an active involvement in their care through self-management techniques. Given the complexity and individualization of self-management, people with Parkinson's will need support and encouragement from their healthcare professionals (HCPs). Despite the key role HCPs have in this, research has seldom explored their perspectives and understanding of self-management for people with Parkinson's. METHODS: Multi-disciplinary teams providing care for people with Parkinson's across London, Coventry and Hertfordshire were approached and took part in either one of four focus groups or individual interviews. Forty-two HCPs, including a range of specialist doctors, general practitioners, allied health professionals, nurses, and social workers, took part in this study. Interviews were transcribed and analysed using thematic analysis to identify themes. RESULTS: Four themes were developed from the data: 1) Empowerment of patients through holistic care and being person-centred; 2) Maximising motivation and capability for patients, for example using asset based approaches and increasing opportunities; 3) importance of empowerment of carers to support self-management and 4) contextual barriers to self-management such as the social context. CONCLUSIONS: This study is the first to explore the perspectives of HCPs on self-management in people with Parkinson's. Our findings have identified important considerations surrounding empowerment, motivation, carers and contextual barriers to better understand how we enable effective self-management techniques in people with Parkinson's. Research should build on these findings on to develop acceptable and effective self-management tools for use in practice with people affected by Parkinson's.

Understanding key mechanisms of successfully leading integrated team-based services in health and social care: protocol for a realist synthesis.

INTRODUCTION: As systems of health and social care in England move towards more integrated and collaborative models, leaders will need different skills than their predecessors to enable system leadership, building partnerships and working across organisations and sectors. There is little understanding of what the mechanisms for effective leadership across integrated health and social care systems might be, the contexts that influence good leadership, or the nature of the resulting outcomes. This review aims to identify, refine and test programme theories of leadership of integrated team-based services in health and social care, exploring what works, for whom and in what circumstances. METHODS AND ANALYSIS: This study uses a realist synthesis approach, following RAMESES guidelines, supported by stakeholder consultation. Stage 1 will develop initial programme theories about leadership of integrated health and social care based on a review of the scientific and grey literature and a stakeholder consultation workshop. Stage 2 will involve focused searching of empirical literature, data extraction and synthesis to refine the initial programme theories and identify relationships between identified contexts, mechanisms and outcomes. A second stakeholder event will guide the focus of the review. Stage 3 will further refine and interrogate the theories testing them against substantive theory on leadership of complex systems and through the experiences and expertise of the stakeholder group. ETHICS AND DISSEMINATION: Our study does not require ethics committee approval. This research will contribute to building an in-depth understanding of what aspects of leadership of integrated team-based services work, for whom and in what circumstances. It will identify the professional development needs of leaders and provide recommendations about optimal organisational and interorganisational structures and processes that support effective leadership in integrated health and social care systems. Findings will be disseminated through peer-reviewed journal publications, conference presentations and formal and informal reports. PROSPERO REGISTRATION NUMBER: CRD42018119291.

A roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025.

OBJECTIVE: National and global dementia plans have focused on the research ambition to develop a cure or disease-modifying therapy by 2025, with the initial focus on investment in drug discovery approaches. We set out to develop complementary research ambitions in the areas of prevention, diagnosis, intervention, and care and strategies for achieving them. METHODS: Alzheimer's Society facilitated a taskforce of leading UK clinicians and researchers in dementia, UK funders of dementia research, people with dementia, and carer representatives to develop, using iterative consensus methodology, goals and recommendations to advance dementia research. RESULTS: The taskforce developed 5 goals and 30 recommendations. The goals focused on preventing future cases of dementia through risk reduction, maximising the benefit of a dementia diagnosis, improving quality of life, enabling the dementia workforce to improve practice, and optimising the quality and inclusivity of health and social care systems. Recommendations addressed gaps in knowledge and limitations in research methodology or infrastructure that would facilitate research in prioritised areas. A 10-point action plan provides strategies for delivering the proposed research agenda. CONCLUSIONS: By creating complementary goals for research that mirror the need to find effective treatments, we provide a framework that enables a focus for new investment and initiatives. This will support a broader and more holistic approach to research on dementia, addressing prevention, surveillance of population changes in risk and expression of dementia, the diagnostic process, diagnosis itself, interventions, social support, and care for people with dementia and their families.

Inequalities in receipt of mental and physical healthcare in people with dementia in the UK.

Background: UK Dementia Strategies prioritise fair access to mental and physical healthcare. We investigated whether there are inequalities by deprivation or gender in healthcare received by people with dementia, and compared healthcare received by people with and without dementia. Methods: we investigated primary care records of 68,061 community dwelling dementia patients and 259,337 people without dementia (2002-13). We tested hypotheses that people with dementia from more deprived areas, and who are women receive more psychotropic medication, fewer surgery consultations, are less likely to receive annual blood pressure, weight monitoring and an annual review, compared with those from less deprived areas and men. Results: only half of people with dementia received a documented annual review. Deprivation was not associated with healthcare received. Compared to men with dementia, women with dementia had lower rates of surgery consultations (adjusted incidence rate ratio (IRR) 0.90, 95% CI 0.90-0.91), of annual blood pressure monitoring (adjusted IRR 0.96, 95% CI 0.95-0.97) and of annual weight monitoring (adjusted IRR 0.91, 95% CI 0.90-0.93). Men with dementia were less likely to be taking psychotropic medication than women with dementia. People with dementia had fewer surgery consultations and were less likely to have their weight and blood pressure monitored at least annually, compared to the non-dementia group. Conclusions: people with dementia, in particular women, appear to receive less primary healthcare, but take more psychotropic medication that may negatively impact their physical health. Reducing these inequalities and improving access of people with dementia to preventative healthcare could improve the health of people with dementia.

A co-design process developing heuristics for practitioners providing end of life care for people with dementia.

BACKGROUND: The end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with dementia. METHODS: An iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals. Family carers were recruited from a national charity, purposively sampling those with experience of end-of-life care for a person with dementia. Health and care professionals were purposively sampled to include a broad range of expertise including; general practitioners, palliative care specialists, and geriatricians. A co-design group was established consisting of health and social care experts and family carers, to synthesise the findings from the qualitative work and produce a toolkit of heuristics to be tested in practice. RESULTS: Four broad areas were identified as requiring complex decisions at the end of life; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing "routine care" at the end of life. Each topic became a heuristic consisting of rules arranged into flowcharts. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency, and considering 'comfort feeding' only versus time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and the carer's wellbeing. Ending life-sustaining treatment supports practitioners through a process of considering the benefits of treatment versus quality-of-life and comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners to consider adapting the delivery of care, in order to promote comfort and dignity at the end of life. CONCLUSIONS: The heuristics are easy to use and remember, offering a novel approach to decision making for dementia end-of-life care. They have the potential to be used alongside existing end-of-life care recommendations, adding more readily available practical assistance. This is the first study to synthesise experience and existing evidence into easy-to-use heuristics for dementia end-of-life care.

Implementing personalisation in integrated mental health teams in England.

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.

Quality palliative care for cancer and dementia in five European countries: some common challenges.

OBJECTIVES: There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. METHOD: One focus group (n=7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. RESULTS: The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. CONCLUSION: These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care.

Designing a complex intervention for dementia case management in primary care.

BACKGROUND: Community-based support will become increasingly important for people with dementia, but currently services are fragmented and the quality of care is variable. Case management is a popular approach to care co-ordination, but evidence to date on its effectiveness in dementia has been equivocal. Case management interventions need to be designed to overcome obstacles to care co-ordination and maximise benefit. A successful case management methodology was adapted from the United States (US) version for use in English primary care, with a view to a definitive trial. Medical Research Council guidance on the development of complex interventions was implemented in the adaptation process, to capture the skill sets, person characteristics and learning needs of primary care based case managers. METHODS: Co-design of the case manager role in a single NHS provider organisation, with external peer review by professionals and carers, in an iterative technology development process. RESULTS: The generic skills and personal attributes were described for practice nurses taking up the case manager role in their workplaces, and for social workers seconded to general practice teams, together with a method of assessing their learning needs. A manual of information material for people with dementia and their family carers was also created using the US intervention as its source. CONCLUSIONS: Co-design produces rich products that have face validity and map onto the complexities of dementia and of health and care services. The feasibility of the case manager role, as described and defined by this process, needs evaluation in 'real life' settings.

Models of inter professional working for older people living at home: a survey and review of the local strategies of English health and social care statutory organisations.

BACKGROUND: Most services provided by health and social care organisations for older people living at home rely on interprofessional working (IPW). Although there is research investigating what supports and inhibits how professionals work together, less is known about how different service models deliver care to older people and how effectiveness is measured. The aim of this study was to describe how IPW for older people living at home is delivered, enacted and evaluated in England. METHOD: An online survey of health and social care managers across England directly involved in providing services to older people, and a review of local strategies for older people services produced by primary care organisations and local government adult services organisations in England. RESULTS: The online survey achieved a 31% response rate and search strategies identified 50 local strategies that addressed IPW for older people living at home across health and social care organisations. IPW definitions varied, but there was an internal consistency of language informed by budgeting and organisation specific definitions of IPW. Community Services for Older People, Intermediate Care and Re-enablement (rehabilitation) Teams were the services most frequently identified as involving IPW. Other IPW services identified were problem or disease specific and reflected issues highlighted in local strategies. There was limited agreement about what interventions or strategies supported the process of IPW. Older people and their carers were not reported to be involved in the evaluation of the services they received and it was unclear how organisations and managers judged the effectiveness of IPW, particularly for services that had an open-ended commitment to the care of older people. CONCLUSION: Health and social care organisations and their managers recognise the value and importance of IPW. There is a theoretical literature on what supports IPW and what it can achieve. The need for precision may not be so necessary for the terms used to describe IPW. However, there is a need for shared identification of both user/patient outcomes that arise from IPW and greater understanding of what kind of model of IPW achieves what kind of outcomes for older people living at home.

Service user involvement in nursing, midwifery and health visiting research: a review of evidence and practice.

OBJECTIVES: In the UK policy recommends that service users (patients, carers and the public) should be involved in all publicly funded health and social care research. However, little is known about which approaches work best in different research contexts and why. The purpose of this paper is to explain some of the theoretical limitations to current understandings of service user involvement and to provide some suggestions for theory and methods development. This paper draws upon findings from a review of the research 'evidence' and current practice on service user involvement in the design and undertaking of nursing, midwifery and health visiting research. DESIGN: A multi-method review was commissioned by the NHS Service Delivery and Organisation (SDO) Research and Development Programme. The timeframe was April 2004-March 2005. The full report (Ref: SDO/69/2003) and supplementary bibliography are available from: http://www.sdo.lshtm.ac.uk. REVIEW METHODS/DATA: Initial searches of the health and social care literature and consultations with researchers were used to develop a broad definition of the topic area. A service user reference group (26 members) worked with the project team to refine the scope of the review, to set inclusion criteria and develop a framework for the analysis. Systematic searches of the literature were undertaken online and through library stacks (345 relevant documents were identified). Ongoing and recently completed studies that had involved service users were identified through online databases (34 studies) and through a national consultation exercise (17 studies). Selected studies were followed up using telephone interviews (n=11). Members of the service user reference group worked with the research team to advise on key messages for dissemination to different audiences. RESULTS: Information was gained about contextual factors, drivers, concepts, approaches and outcomes of service user involvement in nursing, midwifery and health visiting research, as well as developments in other research fields. Synthesis of this information shows that there are different purposes and domains for user involvement, either as part of researcher-led or user-led research, or as part of a partnership approach. A number of issues were identified as being important for future research. These include: linking different reasons for service user involvement with different outcomes; understanding the relationship between research data and service user involvement, and developing conceptualisations of user involvement that are capable of accommodating complex research relationships. Suggestions for the development of practice include: consideration of diversity, communication, ethical issues, working relationships, finances, education and training. CONCLUSIONS: Because research is undertaken for different reasons and in different contexts, it is not possible to say that involving service users will, or should, always be undertaken in the same way to achieve the same benefits. At a research project level uniqueness of purpose is a defining characteristic and strength of service user involvement.

Four years on: the impact of the National Service Framework for Older People on the experiences, expectations and views of older people.

AIM: Evaluation of the impact of the National Service Framework for Older People (NSFOP) on the experiences and expectations of older people, 4 years into its 10 year programme. BACKGROUND: the NSFOP is a comprehensive strategy designed to promote fair, high quality, integrated health and social care services for older people in England. It emphasises (i) the need for services to support independence and promote health, (ii) the specialisation of services for key conditions (stroke, falls and mental illness) and (iii) advocates a cultural change in services so that the older people and their carers are treated with respect, dignity and fairness. It has a 10-year timetable for implementation, starting in 2001. METHOD: A mixed methods approach to evaluation was taken in ten purposively selected localities in England. A portfolio of methods (listening events, nominal groups and interviews) was used with older people and carers to focus on processes as well as on outcomes and to allow for the possibility of conflicting or differing judgements about service quality. FINDINGS: One thousand eight hundred and thirty-nine people participated in public listening events, 1,639 took part in nominal groups and 120 were interviewed individually. The existence of the NSFOP was not widely known beyond the NSFOP local implementation teams and voluntary sector activists. Many, but not all older people, identified themselves as members of a group that was subject to age prejudice that altered the quality and standard of their care. This identity included a role as carer for others, but there was less emphasis on the rights of older people. Positive changes in primary care services were offset by difficulties in accessing general practice and a sense that services were becoming impersonal. The quality of social care at home varied from sensitive and personal to fragmentary, hurried and impersonal. Hospitals treatment was perceived as improved in speed and quality in most places, but hospitals were also seen as risky and insufficiently caring, with discharge sometimes being unprepared, over-zealous and disorganised. CONCLUSIONS: If asked, older people do not perceive improvements as the result of a NSFOP, but nonetheless they do perceive improvements in systems. It is difficult to attribute any of the changes in experiences that we identified to the NSFOP itself, but we can see that other change processes run contrary to some aspects of the NSFOP whilst some trends are congruent with the aspirations of the NSFOP. Government initiatives face the difficulty of distinguishing experiences that may be attributable to multiple causes. They are influenced nonetheless by the outcome of public consultation since these provide relatively rapid means of feedback and commentary by citizens and regulators on the performance of services.

Developing wider workforce regulation in England: lessons from education, social work and social care.

This paper draws on the findings of a review of regulation of professionally qualified teachers, social workers and other staff in social care. It charts the process of developing and implementing both professional and wider workforce regulation in England, focusing on the implications for generic and integrated working and the development of cross-professional procedures for the protection of vulnerable adults and children from abuse. There are many uncertainties about how best to develop workforce regulation especially when integrated working is a policy goal. In light of the paucity of evidence of outcomes and benefits for improved practice and the protection of the public, there is a need for research to address this complex arena.

The impact of home enteral tube feeding in everyday life: a qualitative study.

Advances in clinical and technical areas, combined with developments in community support services, have enabled people to receive enteral tube feeding at home in the UK. Research has focused on clinical and technical aspects, and people's experiences have largely been explored through the audit of after-care services. The research reported in the present paper consisted of a qualitative study in which a small number of people under going enteral tube feeding at home and their carers were interviewed. The study took place in one area of northern England. The interviews explored aspects of daily life, focusing on decision-making and adaptation, and revealed positive feelings about the process of tube feeding, as well as areas of difficulty and concern. Opportunities to improve practice and services are identified from these accounts.