Chemical restraint in nursing older people.

The inappropriate and over-prescribing of medication is an area of nursing fraught with legal and ethical considerations. It can lead to people being chemically restrained and must only be used in exceptional situations. Therapeutic alternatives should take precedent. This article reviews studies on chemical restraint that show high levels of neuroleptic drug prescribing, including pro re nata or 'when required' medication, in care settings for older people. Studies also demonstrate that chemical restraint tends to be used in busy and under-resourced settings. Reviews and audits of neuroleptic medication should be undertaken regularly to alert nurses to local trends and patterns.

'The reflections you get': an exploration of body image and cachexia.

BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people with advanced cancer, their emotions, relationships and social functioning. DESIGN: qualitative study using face-to-face in-depth interviews of a conversational style. Rich narrative data analysed by thematic content analysis. PARTICIPANTS: 12 participants recruited from two community palliative care teams in south east England. RESULTS: altered body image impacts on other aspects of embodiment: the emotions, spirituality, relationships and social functioning. Lives were restricted and isolated, which was compounded by emotional distancing by carers and health care professionals. Participants discussed their repeated attempts to re-adapt to disruptions of self caused by an altered body image. CONCLUSIONS: the key study implications focus on the need for (i) improved holistic care and support, and advice; (ii) training and awareness raising of care professionals; (iii) further research on the lived experiences of the condition and the development of effective measures of cachexia.

Discussion of quality and audit in health.

Attaining quality health care has long been a social policy priority for countries internationally. This discussion considers issues important to understanding quality, and audit implementation in particular. The paper covers, first, the principles and practice of audit and, second, broader implementation issues, which together point to the further development of quality initiatives in health in the United Kingdom health care context. To close, the future of audit as a means of improving health care is elaborated.

What is important to measure in the last months and weeks of life?: A modified nominal group study.

BACKGROUND: Identifying the most important issues for palliative care patients and their families, and assessing whether services address these appropriately is important. Little is known about the views of United Kingdom service users and whether, and in what ways, they differ from those in the published literature from other countries, or from health professionals. AIMS: To investigate what is important to measure at the end of life from the perspectives of United Kingdom patients, bereaved relatives and health care professionals. METHODS: Ten focus groups, using a modified nominal group technique, with a total of 75 participants (10 patients, 35 professionals and 30 bereaved relatives) enabled issues participants thought important to measure at the end of life to be identified and prioritised using ratings and rankings. Thematic analysis of the data was conducted to enable cross-group comparison. FINDINGS: Seven themes were identified as most important to participants: symptom management; choice and control; dignity; quality of life; preparation; relationships; and co-ordination and continuity. Bereaved relatives and professionals emphasised symptom management, relationships and quality of life, whilst patients prioritised issues around preparation. CONCLUSIONS: The study was successful in identifying aspects of end of life care that are important to patients, families and health professionals in the United Kingdom. Although participants were not representative of the wider population in the United Kingdom, the degree of concordance with published studies from outside the United Kingdom increases the credibility of the findings. Quality assurance initiatives need to ensure that they act on information such as this on users' priorities. Further research is needed to test out the findings in other settings in the United Kingdom, to build on the findings about different participants' views and to identify similarities and variations between countries.

Is audit research? The relationships between clinical audit and social-research.

PURPOSE: Quality has an established history in health care. Audit, as a means of quality assessment, is well understood and the existing literature has identified links between audit and research processes. This paper reviews the relationships between audit and research processes, highlighting how audit can be improved through the principles and practice of social research. DESIGN/METHODOLOGY/APPROACH: The review begins by defining the audit process. It goes on to explore salient relationships between clinical audit and research, grouped into the following broad themes: ethical considerations, highlighting responsibilities towards others and the need for ethical review for audit; asking questions and using appropriate methods, emphasising transparency in audit methods; conceptual issues, including identifying problematic concepts, such as "satisfaction", and the importance of reflexivity within audit; emphasising research in context, highlighting the benefits of vignettes and action research; complementary methods, demonstrating improvements for the quality of findings; and training and multidisciplinary working, suggesting the need for closer relationships between researchers and clinical practitioners. FINDINGS: Audit processes cannot be considered research. Both audit and research processes serve distinct purposes. ORIGINALITY/VALUE: Attention to the principles of research when conducting audit are necessary to improve the quality of audit and, in turn, the quality of health care.

Towards a culturally acceptable end-of-life survey questionnaire: a Bengali translation of VOICES.

AIM: To assess the cultural acceptability and appropriateness of an English end-of-life survey questionnaire translated into Bengali for use in east London. STUDY DESIGN: Group discussions with informal carers (n=3 groups) and professionals (n = l1 group). SAMPLE AND SETTING: Informal carers within a Bengali-speaking community (n = 26) in east London participated in three groups discussions led by three community workers trained in interviewing procedures. These data were followed up with one group discussion with bilingual health and social care professionals (n = 6). ANALYSIS: Data subject to content analysis. RESULTS: Participants were supportive of the development of the translated questionnaire. However, attention should be paid to vocabulary, shared meanings, cultural equivalence and the ways people conceptualize health and illness, and death and dying. CONCLUSIONS: These findings, together with participants' views on the administration of the questionnaire, will prompt revisions to the research approach when targeting ethnic and cultural groups in the future.

A research study to identify facilitators and barriers to outcome measure implementation.

AIM: To identify facilitators and barriers to implementing outcome measures. METHODS: An action-research approach within a hospice and nursing home was used. Staff took part in semistructured interviews pre- and post-implementation of the Palliative Care Outcome Scale (POS), completed diaries and participated in monthly meetings. FINDINGS: Qualitative content analysis identified barriers to implementation including: a top-down decision-making approach; outcome measures perceived as time-consuming to use; limited resources for data analysis; and a lack of knowledge of the importance of outcome measures. Facilitators to successful implementation include: involving all staff in decisions about implementation; and using a measure that can be adapted to organization needs and clinical practice. The benefits of using the measure are rapidly noticeable. CONCLUSIONS: Given the need to evaluate services and the role outcome measures can have within clinical governance, this article indicates methods by which measures may be more successfully implemented.

Feeding back survey research findings within palliative care. Findings from qualitative research.

The feedback of research findings to practitioners and policy makers is an important component of palliative care research. Little is, however, understood about professionals' views on the ways research findings should be fed back. This study used semi-structured telephone interviews with a vignette to understand professionals' views on the feedback of survey research findings within palliative care. Content analysis of data uncovered a range of issues professionals emphasised as important to consider. These issues are discussed within the context of existing literature in order to raise the profile of research feedback within palliative care.

Living with motor neurone disease: lives, experiences of services and suggestions for change.

Palliative care involves the complete, holistic care of people with progressive illness and their families. People living with motor neurone disease (MND) require a range of multidisciplinary palliative care services. However, there are significant gaps in our understanding of these people's lives, experiences of services and their suggestions for service change. The present study addressed the following questions: (1) What are the lived experiences of people living with MND? (2) What are people's experiences of services? and (3) Can improvements to care be identified? A qualitative research design was adopted using semi-structured interviews. The topic guide was developed from existing literature. The study was based in three boroughs in London, UK. People living with MND and professionals were drawn from a database at King's College Hospital, and additionally, through 'snowball' sampling. Nine people with MND, five carers/family members and 15 professionals took part in the interviews. These interviews were audio-taped, transcribed and checked for accuracy against the original recordings. Themes within the interviews were coded and grouped. The analysis was facilitated with the NVIVO computer software package. The findings are presented within three substantive groups: (1) the impact of MND on people's lives (the physical impacts of the illness, including increasing disability; social issues, including restrictions on social activities; and adjustments to people's lives, including methods of coping with the illness); (2) experiences of services (accessing service entitlements, information sources, professionals' attitudes and approaches, and professionals' knowledge and understanding of MND); and (3) suggestions for service change (better information and communication, including information on service entitlements; improved knowledge amongst professionals about MND; and some suggestions for service restructuring). This study brings a fresh approach to understanding the impacts of MND and the ways in which services can be improved to meet people's needs. The paper concludes with methodological considerations, the implications of the findings for practitioners and policy makers, and suggestions for further research.

"When you're using gear you put HIV to the back of your mind and forget about it": constructs of risk.

This article presents findings from a qualitative study concerning drug injectors' constructs of human immunodeficiency virus (HIV) risk behavior. Analysis of data obtained from in-depth interviews (some with a vignette) of drug injectors found that when individuals needed an injection of drugs and were experiencing drug withdrawal they were more likely to take drug injecting risks. This was often discussed within an overall preoccupation with drug use. The substantive focus of the analysis goes on to explore drug injectors' desire to think about the consequences of HIV risk behavior at a later point in time. These exploratory findings highlight how further research needs to be undertaken in order to improve understanding of the temporal issues concerning drug injecting HIV risk behavior.

Assessing palliative care outcomes for people with motor neurone disease living at home.

A number of palliative care outcome measures are used to facilitate the provision of palliative care. This short article reports the use of one palliative care outcome measure, the Palliative care Outcome Scale, with people with motor neurone disease (MND) living at home. The outcome measure was generally viewed positively by those involved. However, problems with this scale itself point to the need for a specialized instrument to assess palliative care outcomes for people living with MND.

Safety in nursing social research.

BACKGROUND: Researcher safety is an important consideration in all areas of nursing social research. Risks to researchers' safety are multidimensional and manifest differently, contingent on the context of the research encounters. AIM: To review researcher safety issues in social research with special attention to nursing. REVIEW FOCUS: A small number of studies are used in this article, as examples, to demonstrate the range of researcher safety issues in nursing. Some preliminary suggestions to help ensure researcher safety are outlined: organisational culture, resources, a researcher safety lead, systems and procedures, education and training and insurance. CONCLUSIONS: There is a need to raise the profile of researcher safety issues in nursing for all involved, including researchers, students, funders and review committees. The article highlights the importance of nursing researchers writing reflexively about their safety. There is also a need for new nursing research to assess the nature and extent of safety issues. Taken together, these issues represent the starting point for establishing researcher safety guidelines and identifying good practice for the nursing research community.

What methods do stakeholders prefer for feeding back performance data: a qualitative study in palliative care.

OBJECTIVE: To investigate the opinions of stakeholders (service commissioners and providers) on how performance data should be presented, in order to develop effective feedback methods to facilitate the use of these data in decision making. DESIGN: A qualitative analysis of semi-structured face-to-face and telephone interviews. League tables and fictional box plots were presented as an illustrative guide. The themes covered in the interviews were the effectiveness of these two feedback formats, their positive and negative characteristics, and ideas for new and improved feedback mechanisms. PARTICIPANTS: Thirty-six stakeholders representing a range of clinical and non-clinical roles within palliative care and the wider health care system across a variety of statutory and non-statutory organizations from London and the West Midlands. RESULTS: Box plots were received more positively than league tables, and qualitative information was considered more appropriate than pictorial feedback. Conventional methods such as league tables and box plots were judged to lack essential information on which important decisions could be based, such as additional contextual information and the methodological assumptions of the instrument. Both feedback methods were considered useful as an impetus to further discussion. There was a consensus that feedback should be constructive and able to be adapted to the organizational realities in which UK health services function. CONCLUSION: Qualitative research was viewed as the right evidence for gaining an understanding of the quality of end of life care. Stakeholders highlighted the importance of the lay perspective, which requires approaches that illuminate the subjective meanings of patient experience.

It just didn't work: the realities of quality assessment in the English health care context.

AIMS: Assessment of care quality is integral to health and palliative care provision and there is a need to develop and implement outcome measures to assess quality. This study aimed to: (1) describe the implementation of a palliative care outcome measure in non-specialist palliative care settings and (2) to understand the implementation of the measure. METHOD: Twenty-five non-specialist palliative care settings were purposely sampled and invited to implement a palliative care outcome measure. Fifteen settings agreed to take part. The research team provided training and support in the use of the measure. Data were collected on actual use of the measure and, via interviews with patients and nurses, on their experiences. RESULTS: The number of assessments was low (21 patients assessed against an anticipated minimum of 240). The analysis of nurses' accounts identified important considerations in understanding the low response. Although nurses saw the implementation of the outcome measure as bringing opportunities for themselves, including their own professional development, and for the organisations they represent, including raising organisational profiles, there were a number of factors that acted as impediments. These include: perceived time to administer the paperwork; competence and confidence in recruiting patients and proceeding with informed consent; concerns about the effects of completing the measure with very ill patients; and the effects of nurses raising palliative care issues on their relationships with patients. CONCLUSIONS: It is difficult to integrate outcome measures into routine clinical practice. Future interventions should consider how to tailor the implementation of outcome measures within existing working structures and provide education and training to enable nurses to deal with potentially sensitive palliative care issues.

What is the potential for the use of clinical outcome measures to be computerised? Findings from a qualitative research study.

Clinical outcome measures are used in clinical audit to monitor the quality of care provided to patients. As information technology (IT) is increasingly being integrated into the delivery of health care, computerising the use of clinical outcome measures has been proposed. However, little is known about the attitudes of health professionals towards this. Aims to understand professionals' views on adapting one clinical outcome measure--the palliative care outcome scale (POS)--for use on hand-held computers. Concludes that these results reinforce existing research on clinical outcome measures and IT in health care; identify special palliative care issues when considering the use of computerised clinical outcome measures with patients; and highlight the need for further research.