Tensions in dementia care in China: An interpretative phenomenological study from Shandong province.

AIMS: The study aims to analyse the tensions and the challenges of dementia care that are experienced by people with dementia and their family caregivers in China. BACKGROUND: China has the largest dementia population in the world; however, dementia care services and related support services are still developing. Caring for a person with dementia is very challenging, as evidenced by many studies. As the majority of people with dementia are looked after by their family in their homes in China, it is very important to understand what people with dementia and their family caregivers are experiencing in the context of dementia care services that are in the process of developing. DESIGN: Interpretative phenomenological analysis (IPA) was used. METHOD: Semi-structured individual interviews with 24 participants (10 people with dementia and 14 unrelated family caregivers) recruited from a mental health centre in Shandong Province. FINDINGS: Three main themes emerged that highlighted unmet need: (a) Lack of support services, (b) Insufficient institutional care and (c) Social attitude and social stigma towards dementia. CONCLUSIONS: These themes reveal the challenges that the participants face in the context of dementia care services that are in the process of development in China; and how their lived experiences have been affected by the constraints of social support, public services, healthcare access, long-term care services and social stigma. IMPLICATIONS FOR PRACTICE: This study highlights the tensions that are identified by people with dementia and family caregivers. The research recommends that more support services would be beneficial for this group and would also enhance family support dementia care in China. Looking after an older family member is a culturally, socially and legally embodied norm in Chinese society, so it is important to address education for dementia awareness and the sustainability of family support care services in China by providing dementia services and resources to support both people with dementia and family caregivers.

Shades of grey: Marine litter research developments in Europe.

European research efforts to address concerns in relation to increasing levels of marine litter and potential effects on ecosystems and human health have been launched. We assessed a total of 52 European projects which researched or contributed to the implementation of European marine litter legislation. These projects ranged from national initiatives, to large scale programmes involving multiple EU member states. The best represented topics within those European projects were 'Policy, Governance and Management' and 'Monitoring'. Comparatively 'Risk Assessment', 'Fragmentation' and 'Assessment Tools' were underrepresented. The analyses showed that West-European countries have contributed more to marine litter research and therefore received more funding. As a result, thematic hotspots were present, and scientific capacity is concentrated by topic and countries. The results indicate the need to continue to support initiatives to cover clearly identified gaps, either geographic or thematic, to deliver risk assessments and recommendations to address the marine litter issue.

A standardised approach to the environmental risk assessment of potentially polluting wrecks.

The potential risk to the marine environment of oil release from potentially polluting wrecks (PPW) is increasingly being acknowledged, and in some instances remediation actions have been required. However, where a PPW has been identified, there remains a great deal of uncertainty around the environmental risk it may pose. Estimating the likelihood of a wreck to release oil and the threat to marine receptors remains a challenge. In addition, removing oil from wrecks is not always cost effective, so a proactive approach is recommended to identify PPW that pose the greatest risk to sensitive marine ecosystems and local economies and communities. This paper presents a desk-based assessment approach which addresses PPW, and the risk they pose to environmental and socio-economic marine receptors, using modelled scenarios and a framework and scoring system. This approach can be used to inform proactive management options for PPW and can be applied worldwide.

Using risk management to promote person-centred dementia care.

Risk management for people with dementia has traditionally focused on preventing physical harm. However, research has demonstrated that focusing on the physical safety of people with dementia may result in their social and psychological wellbeing being overlooked - the very aspects that are necessary to achieve person-centred care. This article discusses the main challenges for practitioners caring for people with dementia in various settings, and encourages a care approach which enables appropriate risk taking as a way of promoting person-centred care.

Organisational space for partnership and sustainability: lessons from the implementation of the National Dementia Strategy for England.

National policy initiatives are faced with challenges in their partnership development and sustainability. The National Dementia Strategy for England recommended Dementia Adviser (DA) and Peer Support Network (PSN) services and 40 demonstration sites were established. In this paper, we report on the national evaluation of these demonstration sites, with specific reference to aspects of organisational development. The research used a mixed-methods design with three main strands: (i) activity and outcome monitoring; (ii) organisational surveys and collaborative discussion; (iii) in-depth case studies in eight of the 40 sites. This paper focuses primarily on three rounds of organisational surveys distributed to all 40 demonstration sites over a period of 21 months and interviews in the case studies. Data identify the significance of infrastructure within immediate services as well as the position of services within the external infrastructure of the wider health and social care landscape. Partnership - both internally and externally - was key to establishing and sustaining services that flourished. When working well, DAs and PSNs acted as a link between services and people with dementia at the same time as filling gaps in existing support, providing information, advice and interpersonal support that was tailored to individual needs and circumstances. In conclusion, to achieve the full potential and sustainability of services requires them to be in an organisational space that allows them to work in partnership and collaboration with other services, and that values their distinct knowledge of their communities.

Making and maintaining lifestyle changes with the support of a lay health advisor: longitudinal qualitative study of health trainer services in northern England.

OBJECTIVE: To explore and document the experiences of those receiving support from a lay health trainer, in order to inform the optimisation and evaluation of such interventions. DESIGN: Longitudinal qualitative study with up to four serial interviews conducted over 12 months. Interviews were transcribed and analysed using the constant comparative approach associated with grounded theory. PARTICIPANTS: 13 health trainers, 5 managers and 26 clients. SETTING: Three health trainer services targeting disadvantaged communities in northern England. RESULTS: The final dataset comprised 116 interviews (88 with clients and 28 with staff). Discussions with health trainers and managers revealed a high degree of heterogeneity between the local services in terms of their primary aims and activities. However, these were found to converge over time. There was agreement that health trainer interventions are generally 'person-centred' in terms of being tailored to the needs of individual clients. This led to a range of self-reported outcomes, including behaviour changes, physical health improvements and increased social activity. Factors impacting on the maintenance of lifestyle changes included the cost and timing of health-promoting activities, ill-health or low mood. Participants perceived a need for ongoing access to low cost facilities to ensure that any lifestyle changes can be maintained in the longer term. CONCLUSIONS: Health trainers may be successful in terms of supporting people from socio-economically disadvantaged communities to make positive lifestyle changes, as well as achieving other health-related outcomes. This is not a 'one-size-fits-all' approach; commissioners and providers should select the intervention models that best meet the needs of their local populations. By delivering holistic interventions that address multiple lifestyle risks and incorporate relapse prevention strategies, health trainers could potentially have a significant impact on health inequalities. However, rigorous, formal outcome and economic evaluation of the range of health trainer delivery models is needed.

Reframing risk management in dementia care through collaborative learning.

Risk management is a complex aspect of practice which can lead to an emphasis on maintaining physical safety, which impacts on the well-being of people with dementia. Education for practitioners in risk management is particularly challenging because of its conceptual nature and diverse perceptions of risk between and within professional groups. The practice development research reported here formed one part of a multisite study and contributed to developing a risk assessment and management framework for use by practitioners in partnership with people with dementia and their families. Practice development research uses learning theories in the process of the research, and in so doing its intent is to not only create new knowledge but to view the research process as also a process of learning for those involved. Twenty practitioners from varying professions participated in five Collaborative Learning Groups, each of at least 2 hours duration, which were held over a 7-month period. Data analysis highlighted contradictions in the care system and in the professional's intention to practice in a person-centred way. These were expressed through the themes of: Seeking Certainty; Making Judgements; Team Working; Managing Complexity; Gathering and Using Information.

What does respite care mean for palliative care service users and carers? Messages from a conceptual mapping.

Over the coming years, as an ageing population with multiple chronic illnesses increases, the number of carers and paid carers is set to decrease. There is, therefore, an urgent need to understand what types of services are most supportive in helping to sustain caring relationships. Respite care is frequently mentioned as a key factor in supporting family carers and improving their quality of life but there is a lack of research to support its efficacy. This paper will present a conceptual map of respite care in order to promote a greater understanding of the multiple tensions that the palliative care respite literature reveals. As learning more about carer's needs and the complexities of the caring relationship develops, it is an appropriate time to map the key messages from the literature to help us understand what respite care does actually mean to palliative care service users and carers.

The manager's role in mobilizing and nurturing development: entrenched and engaged approaches to change.

AIMS: Drawing on findings from the evaluation of a Health Action Zone (HAZ), this paper explores the manager's role in promoting and nurturing learning. BACKGROUND: Initiating practice development is a core function of the manager's role. Learning must be nurtured to reach beyond individual to organizational learning and address knowledge exchange as well as creation. In the United Kingdom, HAZs were established to reduce health inequalities. They embraced a variety of service delivery approaches, all with an emphasis on developing new ways of working and innovation. METHODS: Qualitative interviews of the HAZ coordinators, performance manager and staff delivering services. RESULTS: Two alternative ways of engagement and entrenchment to practice were identified to developing new ways of working and learning from experience. CONCLUSIONS: Development of sustainable and enduring structures which facilitate learning at both individual and organizational levels are key to utilization of knowledge and accumulation of learning. IMPLICATIONS FOR NURSING MANAGEMENT: When entrenched and engaged experiential learning in practice are pursued, the role of the manager as a catalyst needs to be highlighted. A tool is proposed to facilitate reflection and promote action plan development. This tool has potential general application, but our experience is that it makes a specific contribution to public health and primary care.

The impact of research governance in the United Kingdom on research involving a national survey.

PURPOSE: The purpose of this paper is to examine the impact that research governance processes in the National Health Service (NHS) are having on the conduct of research that involves a national survey and to point to ways that existing processes may develop to facilitate such research. DESIGN/METHODOLOGY/APPROACH: The paper describes the experiences of a research team of seeking approval in 357 NHS organisations to carry out a national postal survey to investigate specialist services and specialist staffing for older people in England in the wake of recent policy developments. Through reflection on this experience, the team propose approaches for the development of existing research governance processes. The national survey was the first stage of the study, which was followed by a detailed investigation of the development of specialist service provision for older people in six case study sites across England. The national survey aimed to map specialist service provision for older people by identifying the range of service models, agency and professional involvements, and nature of the case load in statutory services (health and social care), independent and voluntary sector organisations. FINDINGS: Of the 357 NHS organisations approached for approval to carry out the survey within the organisation, this was achieved only in 247 organisations over 12 months. Many organisations were facilitative of the process; however, protracted and extensive approval processes in others led to long delays and redesigning of the research that was commissioned by the Department of Health. ORIGINALITY/VALUE: The paper is of value in that it highlights processes and practices that hinder research and builds on those that work well.

Specialist nurses for older people: implications from UK development sites.

AIM: This paper is a report of a study to explore the development of specialist staffing for older people in six case study sites in the United Kingdom. BACKGROUND: In the United Kingdom there has been some concern about the health care available to older people, leading to the development of a National Service Framework. A key theme of this framework is the development of specialist staff skilled in providing services tailored to the needs of older people. METHOD: A soft systems methodology was used in 2004-2005 to carry out interviews with key people, including specialist nurses for older people, other service providers, patients and informal carers (n = 132) in six case study sites identified from a national questionnaire. Interviewees were asked to describe their perceptions of the development, its history and its impact. FINDINGS: The development of specialist nursing services seemed to be shaped by national policy drivers for service development, which may not have been directly linked to the needs of older people. The ideal qualities of a specialist nurse for older people were described by participants as including not only knowledge and skills, but also personal characteristics. CONCLUSION: While progress has been made in establishing specialist posts, much remains to be explored about the roles of postholders, the qualities needed, and the support and preparation required. While advanced practice is a professional aspiration, a number of questions arise about the development of nursing as a self-directing profession in diverse international settings. Theories of specialist nursing practice also need to address the tensions between universal and local models and to consider theories about nursing older people.

Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT).

BACKGROUND: Meaningful communication with people with profound communication difficulties depends on the ability of carers to recognize and translate many different verbal cues. Carers appear to be intuitively skilled at identifying distress cues, but have little confidence in their observations. To help in this process, a number of pain tools have been developed, but this sits uncomfortably with the lack of evidence that pain has any specific signs or behaviours. A palliative care team working with people with intellectual disabilities developed the Disability Distress Assessment Tool (DisDAT) to document a wide range of signs and behaviours of distress and when an individual is content. METHOD: The tool was piloted with 16 carers and 8 patients. It was then assessed using quantitative and qualitative methods, employing 56 carers in routine clinical situations with 25 patients, most with severe communication difficulties. Carers of 10 patients participated in semi-structured interviews exploring the signs and behaviours demonstrated by patients when distressed and when content. These same 10 patients were observed for distress cues during different activities. RESULTS: It became clear that distress did not have a common meaning among carers, but there was a clear understanding that distress did not just cover physical pain. The range of distress cues was wide, with no evidence that any cues were specific to particular causes. Although some distress cues were common between patients, each patient had a distinct pattern of distress cues. In addition, different carers identified a different range of distress cues, while the length of the relationship did not influence the number of cues identified. Most distress cues were a change from the norm, but some patients demonstrated distress as an absence of content cues. Carers found the DisDAT simple to use and useful, and several felt that DisDAT would have helped advocate for the patients in previous conflicts with clinical teams. CONCLUSIONS: There was no evidence that pain has any specific signs or behaviours. The preliminary and assessment phases showed that distress was a useful clinical construct in providing care. The DisDAT reflected patients' distress communication identified by a range of carers, and provided carers with evidence for their intuitive observations of distress.

The SEIQoL and functional status: how do they relate?

Over recent years, an emphasis has emerged in the UK and international policy documents, over the involvement of people in the delivery of health care. However, evaluations of health services still largely rest on outcome measures that reflect professional concerns. As new health services are being developed, new patient-centred outcome measures are needed to evaluate them. This paper aims at exploring the possibility of individual quality of life as an outcome measure for health services. As a first step, it aims to elucidate the relationship of functional outcome measures to the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) in groups of people whose age or medical diagnosis serve as the basis for health service design. Its objectives are to study the relation of SEIQoL scores and life areas to functional status in an older population and in a group of people with chronic obstructive pulmonary disease (COPD). Older people selected their health most frequently as one of the most important areas in their life (9.9%, vs. 8.6% for people with COPD) and were more satisfied with it (U = 2,512, p = 0.007). People's health status did not impact on the way they defined their quality of life, but on their level of satisfaction with discrete life areas. The weights attributed to health were significantly negatively correlated to people's overall quality of life score in the overall sample (rho = -0.34, p < 0.001). In the light of recent national and international policy documents advocating for the development of new, more person-centred health services, our results support the proposition of the authors of SEIQoL, that individual quality of life measures have the potential to bring a significant contribution to the evaluation of health services.

The discipline of improvement: something old, something new?

In response to calls to improve the efficacy of health care services, there is an increasing focus on the processes of achieving a continuous improvement of services and practices. One specific response is that of the NHS Modernization Agency and National Health Service University in relation to the Discipline of Improvement in Health and Social Care. This paper draws on a study that explored the underpinning knowledge base of the Discipline of Improvement and focuses on describing the framework that was developed. The two-dimensional framework is composed of five primary categories, which cross-link to 11 competencies. The study concludes that the Discipline of Improvement draws together a group of ideas that together cohere to form a distinctive model to aid the improvement of health care. While some of these ideas are well-established, the way in which the Discipline of Improvement makes connections between them offers something new to our understanding of change in the complex world of health care provision, and to nursing management.