Quality care as ethical care: a poststructural analysis of palliative and supportive district nursing care.

Quality of care is a prominent discourse in modern health-care and has previously been conceptualised in terms of ethics. In addition, the role of knowledge has been suggested as being particularly influential with regard to the nurse-patient-carer relationship. However, to date, no analyses have examined how knowledge (as an ethical concept) impinges on quality of care. Qualitative semi-structured interviews were conducted with 26 patients with palliative and supportive care needs receiving district nursing care and thirteen of their lay carers. Poststructural discourse analysis techniques were utilised to take an ethical perspective on the current way in which quality of care is assessed and produced in health-care. It is argued that if quality of care is to be achieved, patients and carers need to be able to redistribute and redevelop the knowledge of their services in a collaborative way that goes beyond the current ways of working. Theoretical works and extant research are then used to produce tentative suggestions about how this may be achieved.

A poststructural rethinking of the ethics of technology in relation to the provision of palliative home care by district nurses.

Technology and its interfaces with nursing care, patients and carers, and the home are many and varied. To date, healthcare services research has generally focussed on pragmatic issues such access to and the optimization of technology, while philosophical inquiry has tended to focus on the ethics of how technology makes the home more hospital like. However, the ethical implications of the ways in which technology shapes the subjectivities of patients and carers have not been explored. In order to explore this, poststructural theory, in particular the work of Butler, Foucault, and Deleuze, is used to theorize the relationship between subjectivity and materiality as ethically mandated on producing rather than precluding the development of subjectivities in novel ways. This theoretical understanding is then utilized through a process of 'plugged in' as described by Jackson and Massie that aims to link empirical data, research, and philosophical inquiry. Through this process, it is suggested that power, which the empirical data demonstrate, is frequently exercised through medical discourses and restricts patients' and carers' ability to shape the material environment of the home as a place to live and be cared for in palliative stages of illness. Alternative discourses are suggested both from the empirical data as well as other research, which may offer patients and carers the possibility of reclaiming power over the home and their subjectivities. Finally, the dichotomy between the home and hospital, mediated via technology, is posited as being problematic. It is argued the dichotomy is false and should be moved away from in order to allow an ethical embrace of technology in palliative care.

Referral and management options for patients with chronic kidney disease: perspectives of patients, generalists and specialists.

BACKGROUND: Chronic Kidney Disease (CKD) is increasing in prevalence and significance as a global public health issue. Appropriate management of CKD stages 3-4 in either generalist or specialist care is essential in order to slow disease progression. As various consulting options between services may be used, it is important to understand how patients and practitioners view these options. OBJECTIVE: To elicit patient and practitioner views and preferences on the acceptability and appropriateness of referral practices and consulting options for CKD stage 3-4. DESIGN: A mixed methods approach involving a semi-structured interview and structured rating exercise administered by telephone. SETTING & PARTICIPANTS: Adult (18+) patients with CKD stage 3-4 were recruited via their General Practitioner (GP). Practitioners were recruited from both general and specialist services. RESULTS: Sixteen patients and twenty-two practitioners participated in the study between July and September, 2011. Both patients and practitioners preferred 'GP with access to a specialist' and least preferred 'Specialist Review'. Computer review and telephone review were acceptable to participants under certain conditions. Practitioners favoured generalist management of patients with CKD 3. Specialists recommended active discharge of patients with stabilised stage 4 back to generalist care. Both generalists and specialists strongly supported sharing patients' medical records via electronic consultation systems. CONCLUSION: Participants tended to prefer the current model of CKD management. Suggested improvements included; increasing the involvement of patients in referral and discharge decisions; improving the adequacy of information given to specialists on referral and encouraging further use of clinical guidelines in practice.

Colorectal cancer patients' attitudes towards involvement in decision making.

OBJECTIVES: To design and administer an attitude rating scale, exploring colorectal cancer patients' views of involvement in decision making. To examine the impact of socio-demographic and/or treatment-related factors on decision making. To conduct principal components analysis to determine if the scale could be simplified into a number of factors for future clinical utility. METHODS: An attitude rating scale was constructed based on previous qualitative work and administered to colorectal cancer patients using a cross-sectional survey approach. RESULTS: 375 questionnaires were returned (81.7% response). For patients it was important to be informed and involved in the decision-making process. Information was not always used to make decisions as patients placed their trust in medical expertise. Women had more positive opinions on decision making and were more likely to want to make decisions. Written information was understood to a greater degree than verbal information. The scale could be simplified to a number of factors, indicating clinical utility. CONCLUSION: Few studies have explored the attitudes of colorectal cancer patients towards involvement in decision making. This study presents new insights into how patients view the concept of participation; important when considering current policy imperatives in the UK of involving service users in all aspects of care and treatment.

Influences on individuals with osteoarthritis in deciding to undergo a hip or knee joint replacement: a qualitative study.

PURPOSE: Osteoarthritis (OA) of the hip and knee is one of the major long-term health conditions. At the end-stage of the disease, a hip or knee replacement may be necessary. Yet, deciding to undergo a total joint replacement (TJR) due to OA may be a difficult decision for individuals. We conducted a study to elucidate the factors that influence whether or not individuals with OA decide to undergo a hip or knee replacement. METHOD: A qualitative study nested within a longitudinal study (n = 268) that was exploring the management of OA. We interviewed a purposive sample of individuals (n = 27) with OA referred for consideration for TJR. FINDINGS: Participants were aged 49 to 89 with hip or knee OA. Participants' decision-making was influenced by (1) symptoms, in particular pain and effect on physical functioning; (2) the opinion of others; (3) a weighing up of risks with benefits and (4) information sources. CONCLUSIONS: Participants with end-stage knee OA were less willing to undergo surgery than those with hip OA. There is a need to provide more treatment options and quality information and advice to individuals to enable informed decision-making.

A systematic review of informal caregivers' needs in providing home-based end-of-life care to people with cancer.

AIMS: This paper presents the results of a systematic review examining the practical information needs of informal caregivers providing home-based palliative and end-of-life care to people with advanced cancer. BACKGROUND: Modern hospice care has led to increases in home-based palliative care services, with informal caregivers assuming responsibility for the majority of care. In response, health policy emphasises the provision of palliative care services in which both the patient and carer receive adequate support throughout illness and death. While the emotional needs of carers have been extensively researched, their practical needs with respect to the provision of physical care are yet to receive systematic attention. DESIGN: Systematic review. METHODS: Eligible articles were identified via electronic searches of research and evidence-based databases, hand-searching of academic journals and searches of non-academic grey literature websites. Quality of research was assessed via accepted guidelines for reviewing non-randomised, observational and qualitative literature. Data were synthesised by comparing and contrasting the findings to identify prominent themes. RESULTS: Research consistently highlights this lack of practical support, often related to inadequate information exchange. These deficits typically manifest in relatives adopting a 'trial and error' approach to palliative care. Informal carers request a greater quantity of practically-focussed information, improvements in quality and increased methods of dissemination. CONCLUSION: Synthesis of the literature suggests that home-based palliative care services have been insufficiently focussed on assisting informal caregivers acquire practical nursing skills. RELEVANCE TO CLINICAL PRACTICE: Enhanced access to professional advice represents a potentially effective method of increasing carers' confidence in their ability to undertake practical aspects of home-based care. Evidence suggests that nurses and other health providers may better assist home-based carers by providing the information and skills-training necessary to facilitate this. This may necessitate the involvement of carers in the design and testing of new educational interventions.

A review of the information and support needs of family carers of patients with chronic obstructive pulmonary disease.

AIMS AND OBJECTIVES: The objectives of this narrative review were to identify: (1) The information and support needs of carers of family members with chronic obstructive pulmonary disease; (2) appropriate interventions to support carers in their caregiving role; (3) information on carers' needs as reported in studies of patients living with COPD in the community. BACKGROUND: Chronic obstructive pulmonary disease is a major health problem in the UK resulting in significant burden for patients, families and the health service. Current National Health Service policies emphasise, where medically appropriate, early discharge for acute exacerbations, hospital-at-home care and other models of community care to prevent or reduce re-hospitalisations of people with chronic conditions. Understanding carers' needs is important if health care professionals are to support carers in their caregiving role. DESIGN: A narrative literature review. METHODS: Thirty five papers were reviewed after searching electronic databases. RESULTS: Few studies were identified which addressed, even peripherally, carers' needs for information and support, and no studies were found which described and evaluated interventions designed to enhance caregiving capacity. Several studies of hospital-at-home/early discharge, self care and home management programmes were identified which included some information on patients' living arrangements or marital status. However, there was little or no detail reported on the needs of, and in many cases, even the presence of a family carer. CONCLUSIONS: This review highlights the dearth of information on the needs of carers of chronic obstructive pulmonary disease patients and the need for future research. RELEVANCE TO CLINICAL PRACTICE: There is little research based knowledge of the needs of carers of chronic obstructive pulmonary disease patients and interventions to assist them in providing care. This knowledge is critical to ensure that carers receive the information they need to carry out this role while maintaining their own physical and emotional health.

At home in hospital? Interaction and stigma in people affected by cancer.

Social research conducted in cancer hospitals has tended to focus on interaction between patients and staff, and studies of interaction amongst people with cancer often centre on group therapy and patient-patient support mediated by health professionals. Informal interaction between patients and fellow patients, and their carers/visitors, occurs in cancer hospitals every day but has remained largely unanalysed, particularly in the case of visitors. In this paper, based on data from 71 in-depth interviews, we compare patient and carer perceptions of interacting with fellow patients/visitors in a cancer centre with their perceptions of interacting in the outside world. We apply Erving Goffman's theories on stigma to the data and argue that these theories have both relevance and currency. The outside world can be seen as a 'civil place' where people with cancer often encountered difficulties such as undue admiration, uneasiness, avoidance and lack of tact, whereas the cancer centre appears to have been a 'back place' where, for most patients, stigmatisation was not an issue, and they could 'get on with it' in the company of fellow patients and their visitors. However, some groups of patients experienced social isolation in the hospital or seemed to be assigned to the lower strata of cancer patient society. We conclude that patients who are outside the informal support system in cancer hospitals may have psychosocial difficulties that might be recognised and addressed by healthcare staff, and that patients and their carers might benefit from enhanced support following discharge from hospital.

Meeting the information needs of women with breast cancer: Piloting a nurse-led intervention.

This study evaluated a telephone intervention, administered by specialist breast care nurses, that aimed to meet the information needs of women with breast cancer. The intervention was developed from previous work that examined priority information needs. Participants were allocated to a telephone intervention (n = 67) or control group (n = 68). Data were collected by means of semi-structured interviews with participants at two time points (3 months and 8-12 months post-diagnosis) and focused on patient satisfaction with sources of information, information needs and psychological morbidity. Interviews were also conducted with breast care nurses to ascertain their views on administering the intervention. The intervention group reported fewer physical problems at Time 2 and were more likely to have had their information needs met than women in the control group. The control group were more likely to utilise media sources of information at Time 2 whereas women in the intervention group reported breast care nurses as their most prominent source of information. There were no significant differences in psychological morbidity between the two study groups. The findings indicate that the intervention is a feasible and acceptable approach to meeting the information needs of women with breast cancer. Further research is required to evaluate the intervention in a randomised controlled trial.

Everyday death: how do nurses cope with caring for dying people in hospital?

In the UK, policies on health recognise the importance of supporting healthcare professionals if they are to realise their potential for delivering quality services. Little is known about how nurses working in hospitals cope with caring for dying people and, hence how they might be best supported in this work. This paper reports a qualitative study informed by phenomenological philosophy, which developed a theory of how newly qualified nurses cope with caring for dying people in acute hospital medical wards. On the basis of the theory, interventions are proposed that could help support nurses in their work with dying people.

Decision-making role preferences and information needs: a comparison of colorectal and breast cancer.

OBJECTIVE: An exploratory study has been carried out to examine decision-making role preferences and information needs for a sample of people with colorectal cancer (n=48). The work replicated a larger study carried out for women with breast cancer (n=150), and this paper compares and contrasts findings for both disease groups. DESIGN: A cross-sectional design was employed, involving structured interviews. The main variables investigated were decision-making preference (using a decisional role preference card sort), perceived decisional role and information need (using an information needs questionnaire). RESULTS: The majority (78%) of the colorectal cancer patients preferred to play a passive role in decision making, in contrast to 52% of women with breast cancer in previous work. Eighty per cent of the colorectal sample and 61% of the women with breast cancer perceived that the doctor had made treatment decisions. Priority information needs for both groups related to cure, spread of disease and treatment options. CONCLUSIONS: The two most striking findings from the comparison between the two disease groups relate to the differences in decision-making role preferences and the similarities in information needs. The process of involving people with colorectal cancer in treatment decision making warrants further investigation. The similarity in information needs of the two disease groups has implications for health care professionals providing information to people with cancer.

Macmillan cancer and palliative care specialists: their practice development support needs.

This study explores the practice development support needs of specialist nurses working in cancer and palliative care, in order to assist in the improvement of cancer and palliative care services. Using a whole population survey, postal questionnaires were sent to 1144 Macmillan post holders in England, Scotland and Wales. There was a 75.7% response rate. Three focus groups consisting of a total of 21 respondents were also used as a secondary form of data collection to supplement and expand upon the questionnaire responses. The findings reveal substantial practice development needs, particularly in relation to organizational support and guidance, education support, resources and access to evidence. The study demonstrates that nurses felt unable to engage in improving care unless initiatives were supported in practical ways by their organizations.

Individuals' expectations and challenges following total hip replacement: a qualitative study.

PURPOSE: Hip replacements are one of the most common operations for individuals with hip osteoarthritis. There have been numerous quantitative studies investigating the recovery from joint replacement surgery and these show how effective and satisfied patients are. However, little qualitative work has been conducted to explore patients' actual experiences. Therefore, this study aimed to detail the experiences of individuals undergoing a total hip replacement (THR) to determine whether their expectations were met. METHOD: The qualitative study was nested within a longitudinal study (n = 215) that was investigating biomedical and psychosocial outcomes from THR. We interviewed a purposive sample of individuals (n = 25) 6 months after THR to explore their experiences of having a THR. FINDINGS: Participants were aged 48-82 years. They felt disabled following the THR and some had unrealistic expectations of recovery. Most of them received minimal information and health professional support. Participants had to overcome a number of challenges such as diminished confidence, frustration over slow progress and reduced physical functioning. CONCLUSION: Individuals undergoing THR need to have the opportunity to discuss their expectations of THR, so there is no "false optimism". Support requirements, following THR, need to be reviewed as they were often underestimated by patients and health professionals.

Quality of care for individuals with osteoarthritis: a longitudinal study.

OBJECTIVES: The objectives of this paper were to investigate quality of care for individuals with osteoarthritis (OA) and to determine if those most in need had the outcome of a total joint replacement (TJR). Key quality indicators were involvement in treatment decisions, appropriate information provision and outcomes of care. METHODS: A longitudinal study was conducted on individuals newly referred to an orthopaedic specialist at one hospital in North West England. A total of 268 participants were recruited consecutively and followed up at 3, 6 and 12 months. Validated measurement tools such as, a Visual Analogue Scale for pain and the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) assessed pain and physical functioning. Mean scores on the outcome measures were estimated and plotted over time by joint affected and whether or not the participant had a TJR by 12 months. RESULTS: Most participants (82%) felt that they were involved in the decision about their care, although 21% reported that they had not received a diagnosis of OA. Information was not provided on OA, pain management and exercise to 58%, 65% and 57% of participants, respectively. However, 98% of the 109 having a TJR reported receiving information about the procedure. Among the 118 known not to have had a TJR, pain and physical functioning remained relatively stable over time. CONCLUSION: It appears that patients with the most severe symptoms of pain and physical functioning were selected for TJR. However, care for individuals with OA could be improved by providing standard information on OA in general and pain management and exercise. In particular, effective strategies for the implementation of the research evidence and guidelines are required to improve quality of care.

GP referral of patients with osteoarthritis for consideration of total joint replacement: a longitudinal study.

BACKGROUND: Individuals with hip or knee osteoarthritis (OA) are referred to orthopaedic surgeons if considered by their GP as potential candidates for total joint replacement (TJR). It is not clear which patients end up having this surgery. AIM: The aim of the study was to investigate symptom variation in individuals with OA newly referred by GPs to an orthopaedic surgeon for consideration for TJR, and to determine the predictors of having this procedure. DESIGN AND SETTING: A longitudinal study of patients at a regional orthopaedic centre with follow-up at 3, 6, and 12 months by postal questionnaire. METHOD: GP referrals of patients with OA to orthopaedic surgeons were consecutively sampled. Of the 431 eligible patients, 257 (59.6%) were recruited. Validated measurement tools were used to measure pain, physical functioning, severity of OA, and health-related quality of life. RESULTS: Over half the participants were in constant pain, taking pain medication more than once per day. Only 67 of 134 (50%) hip and 40 of 123 (33%) knee patients had a TJR within 12 months. Those who had a replacement had been diagnosed with OAfora shorter time, reported more frequent pain, were more likely to use a walking stick, and had worse pain, stiffness, and physical functioning. CONCLUSION: Many individuals considered for TJR ultimately may not have surgery, and more effective strategies of management need to be developed between primary and secondary care to achieve better outcomes and to improve quality of care.

District nurses' role in palliative care provision: a realist review.

OBJECTIVES: The aim of this review is to construct a detailed account of the role of the district nurse (generalist registered nurse providing nursing care in primarily home settings) in providing palliative care, to determine if and how district nursing care provides effective care to such patients at home, and to examine the utility of a realist review for the above purpose. DESIGN: Realist review of literature. DATA SOURCES: Papers in English reporting aspects of the district nurse role in the provision of palliative care are included. Electronic databases (Ovid Medline, Cinnahl, British Nursing Index, Embase, PsycINFO and EBM reviews) were searched, supplemented by citation tracking and grey literature searches. REVIEW METHODS: Assumptions about district nursing practice with palliative care patients are derived from a range of sources. Reviewed papers are interrogated to support, refute or develop these statements. RESULTS: Forty six papers employing a range of research methods are incorporated into the review. Studies focus on district nurses, patients, family carers and other professionals and include work from a range of countries. Studies highlight the value district nurses place on palliative care provision, the importance of developing a relationship with patients, and the emotional difficulties of providing such care. District nurses have key skills in providing physical care and in coordinating the work of others, but struggle more with psychological aspects of care. District nurses report feeling undervalued, and express some reluctance to work with other health and social care professionals to provide care. CONCLUSIONS: There is little in this synthesis to shed light on the outcomes of care or to explicitly guide practice. District nurses clearly articulate what they consider to be important, but research in this area is limited and needs to undergo a renaissance to examine what is important: namely what district nurses do in practice; what patients and family carers' views are on what they do and do not do; and how district nurses can improve care outcomes. The inclusiveness of realist review works well for this field of study.

Specialist community nurses: a critical analysis of their role in the management of long-term conditions.

The aim of this narrative review is to identify strategies in use by specialist community and public health nurses in the prevention, care and management of individuals with long-term conditions, specifically chronic obstructive pulmonary disease (COPD) and musculoskeletal disorders. These conditions have been selected as they are highly prevalent; a burden on health services globally and a major public health issue. From a UK policy perspective, specialist community nurses have been placed at the forefront of taking a lead role in the coordination and delivery of more responsive services for individuals with long-term conditions; whether this has been an effective use of skills and resource is questionable. We systematically searched relevant databases between 1999-2009 to identify interventions used by specialist community nurses and critically appraised the studies. This review reports on impact and value of interventions used by specialist community nurses in the prevention and management of COPD and musculoskeletal conditions, and makes recommendations for improving services.

Patients waiting for a hip or knee joint replacement: is there any prioritization for surgery?

OBJECTIVE: To investigate whether patients are prioritized for joint replacement surgery on the basis of severity of osteoarthritis, pain and physical functioning. METHOD: A total of 105 patients on the waiting list for primary total knee or hip replacement from a UK regional orthopaedic centre were interviewed at baseline and followed up at 3, 6 and 9 months or until joint replacement. Measurement tools were the visual analogue scale (VAS), Western Ontario and McMaster Universities (WOMAC) osteoarthritis index and the Oxford hip or knee score. RESULTS: Most participants (81, 77%) were categorized on the waiting list as 'routine', despite having high levels of pain according to the measurement scales. There was no significant correlation between the waiting list categorization and the actual waiting time for a hip or knee joint replacement operation (Kendall's tau = 0.17; P = 0.062) and the waiting list categorization did not appear to ensure that patients were operated upon earlier. There were also no significant differences in measures (VAS pain, WOMAC and Oxford hip or knee scores) between those individuals who had their operations earlier (before 6 months) compared with those participants who had their operations later (6 months or greater) or even not at all. Of the 105 patients who were listed for joint replacement, 24 (25%) patients did not have their operation due to: a medical delay (14); self-delay/cancellation (7); arthroscopy instead (2); and death (1). CONCLUSION: With the expected increase in demand for joint replacement, there needs to be a re-examination of assessment procedures of patients listed for joint replacement. The use of measurement tools to assess symptoms such as pain and physical function would be one way forward.

Pain, physical functioning and quality of life of individuals awaiting total joint replacement: a longitudinal study.

OBJECTIVES: To investigate if pain, physical function and the quality of life changed among adults with osteoarthritis while on the waiting list for hip or knee joint replacement. METHODS: A longitudinal study of patients listed for primary hip or knee joint replacement. Participants were interviewed at baseline (n = 105) and followed up at 3 (n = 84), 6 (n = 47) and 9 months (n = 24), or until their joint replacement. Measurement tools used were a visual analogue scale (VAS), Western Ontario and McMaster's Universities (WOMAC) Osteoarthritis Index and the Medical Outcomes Study Short Form Health Survey (SF-36). RESULTS: Baseline data indicated high levels of pain as measured by VAS [mean 7.0 (SD 2.2)] and WOMAC pain [mean 11.2 (SD 3.5)]. At baseline, the mean physical function measured by WOMAC was 40.3 (SD 12.1). At the 3-month follow-up, there was significant deterioration in VAS pain scores (0.6; 95% CI mean difference 0.3, 1.0); WOMAC pain scores (1.2; 95% CI mean difference 0.7, 1.8) and WOMAC physical function scores (4.8; 95% CI mean difference 2.8, 6.7) compared with baseline. CONCLUSION: The often long wait for joint replacement surgery and deterioration in pain and physical function has highlighted the need for active management by health professionals while patients are on the waiting list.

Quality of care for people with osteoarthritis: a qualitative study.

AIM: The overall aim of this qualitative study was to explore within primary care the experiences of management and care of individuals with end-stage lower limb osteoarthritis who are on the waiting list for joint replacement. BACKGROUND: Osteoarthritis, one of the most common chronic diseases, causes loss of physical function and severe pain among sufferers. Improving quality of care and service provision for individuals with chronic diseases is high on the UK's NHS agenda. METHODS: Data were collected by semi-structured qualitative interviews with 21 individuals with osteoarthritis who were waiting for a hip or knee replacement operation. Interviews were analysed using framework analysis. RESULTS: Participants had been suffering with osteoarthritis for between seven months and 38 years. The management by health professionals for people on the waiting list for joint replacement was minimal. However, participants spoke of 'hiding' their symptoms from health professionals and were trying to 'self-manage' their symptoms. Families became more involved in helping individuals with osteoarthritis to manage with everyday life. CONCLUSION: Management of individuals' osteoarthritis while on the waiting list needs to be given consideration by health professionals in primary and secondary care. Health professionals need to be working with each other to provide more comprehensive care across the primary and secondary care interface. RELEVANCE TO CLINICAL PRACTICE: Case managers or community matrons could be identified as the co-ordinator and assessor of the needs of patients with osteoarthritis so as to try and improve pain management and service provision for these individuals especially while on the waiting list.