Carol Tishelman

A cross sectional study of ‘care left undone’ on nursing shifts in hospitals

AIMSnTo determine factors associated with variation in care left undone (also referred to as missed care) by Registered Nurses (RNs) in acute hospital wards in Sweden.nnnBACKGROUNDnCare left undone has been examined as a factor mediating the relationship between nurse staffing and patient outcomes. The context has not previously been explored to determine what other factors are associated with variation in care left undone by RNs.nnnDESIGNnCross-sectional survey to explore the association of RN staffing and contextual factors such as time of shift, nursing role and patient acuity/dependency on care left undone was examined using multi-level logistic regression.nnnMETHODSnA survey of 10,174 RNs working on general medical and surgical wards in 79 acute care hospitals in Sweden (January-March 2010).nnnRESULTSnSeventy-four per cent of nurses reported some care was left undone on their last shift. The time of shift, patient mix, nurses role, practice environment and staffing have a significant relationship with care left undone. The odds of care being left undone is halved on shifts where RN care for six patients or fewer compared with shifts where they care for 10 or more.nnnCONCLUSIONnThe previously observed relationship between RN staffing and care left undone is confirmed. Reports of care left undone are influenced by RN roles. Support worker staffing has little effect. Research is needed to identify how these factors relate to one another and whether care left undone is a predictor of adverse patient outcomes.

Post-operative mortality, missed care and nurse staffing in nine countries: A cross-sectional study

Background Variation in post-operative mortality rates has been associated with differences in registered nurse staffing levels. When nurse staffing levels are lower there is also a higher incidence of necessary but missed nursing care. Missed nursing care may be a significant predictor of patient mortality following surgery. Aim Examine if missed nursing care mediates the observed association between nurse staffing levels and mortality. Method Data from the RN4CAST study (2009–2011) combined routinely collected data on 422,730 surgical patients from 300 general acute hospitals in 9 countries, with survey data from 26,516 registered nurses, to examine associations between nurses’ staffing, missed care and 30-day in-patient mortality. Staffing and missed care measures were derived from the nurse survey. A generalized estimation approach was used to examine the relationship between first staffing, and then missed care, on mortality. Bayesian methods were used to test for mediation. Results Nurse staffing and missed nursing care were significantly associated with 30-day case-mix adjusted mortality. An increase in a nurse’s workload by one patient and a 10% increase in the percent of missed nursing care were associated with a 7% (OR 1.068, 95% CI 1.031–1.106) and 16% (OR 1.159 95% CI 1.039–1.294) increase in the odds of a patient dying within 30 days of admission respectively. Mediation analysis shows an association between nurse staffing and missed care and a subsequent association between missed care and mortality. Conclusion Missed nursing care, which is highly related to nurse staffing, is associated with increased odds of patients dying in hospital following common surgical procedures. The analyses support the hypothesis that missed nursing care mediates the relationship between registered nurse staffing and risk of patient mortality. Measuring missed care may provide an ‘early warning’ indicator of higher risk for poor patient outcomes.

Research in public health and end-of-life care – Building on the past and developing the new

Introduction: Public health approaches offer the opportunity to move beyond clinical and health services approaches to end-of-life (EoL) care, to focus on whole populations, individuals and communities rather than patients and carers. They also allow concepts such as capacity, resilience, and wellbeing to come to the fore. Methods: This paper, drawing on the experience of a diverse group of academics and practitioners from three countries in Europe, considers the research challenges related to examining new public health approaches to EoL care and how learning from more traditional or classic public health research can influence a future research agenda. Additional opportunities provided by the new public health approach to broaden learning and participation in research are considered. Results: By bringing together strong traditional methods such as analysis of longitudinal population-level data with participatory approaches that draw on communities experience and aspirations for care, the authors suggest that new and improved opportunities exist to evaluate the impact of participatory approaches. Discussion: In conclusion, the paper urges researchers from classic and new public health to work in partnership to generate and respond to the emerging research agenda around new public health initiatives. There is much to be learned from both.

Room for Death – International museum-visitors’ preferences regarding the end of their life

Just as pain medications aim to relieve physical suffering, supportive surrounding for death and dying may facilitate well-being and comfort. However, little has been written of the experience of or preferences for the surroundings in which death and dying take place. In this study, we aim to complement our research from perspectives of patients, family members and staff, with perspectives from an international sample of the general public. Data derives from a project teaming artists and craftspeople together to create prototypes of space for difficult conversations in end-of-life (EoL) settings. These prototypes were presented in a museum exhibition, Room for Death, in Stockholm in 2012. As project consultants, palliative care researchers contributed a question to the public viewing the exhibition, to explore their reflections: How would you like it to be around you when you are dying? Five-hundred and twelve responses were obtained from visitors from 46 countries. While preliminary analysis pointed to many similarities in responses across countries, continued analysis with a phenomenographic approach allowed us to distinguish different foci related to how preferences for surroundings for EoL were conceptualized. Responses were categorized in the following inductively-derived categories: The familiar death, The larger-than life death, The lone death, The mediated death, The calm and peaceful death, The sensuous death, The green death, and The distanced death. The responses could relate to a single category or be composites uniting different categories in individual combinations, and provide insight into different facets of contemporary reflections about death and dying. Despite the selective sample, these data give reason to consider how underlying assumptions and care provision in established forms for end-of-life care may differ from peoples preferences. This project can be seen as an example of innovative endeavors to promote public awareness of issues related to death and dying, within the framework of health-promoting palliative care.

Agile, a guiding principle for health care improvement?

PURPOSEnThe purpose of this paper is to contribute to increased understanding of the concept agile and its potential for hospital managers to optimize design of organizational structures and processes to combine internal efficiency and external effectiveness.nnnDESIGN/METHODOLOGY/APPROACHnAn integrative review was conducted using the reSEARCH database. Articles met the following criteria: first, a definition of agility; second, descriptions of enablers of becoming an agile organization; and finally, discussions of agile on multiple organizational levels. In total, 60 articles qualified for the final analysis.nnnFINDINGSnOrganizational agility rests on the assumption that the environment is uncertain, ranging from frequently changing to highly unpredictable. Proactive, reactive or embracive coping strategies were described as possible ways to handle such uncertain environments. Five organizational capacities were derived as necessary for hospitals to use the strategies optimally: transparent and transient inter-organizational links; market sensitivity and customer focus; management by support for self-organizing employees; organic structures that are elastic and responsive; flexible human and resource capacity for timely delivery. Agile is portrayed as either the new paradigm following lean, the needed development on top of a lean base, or as complementary to lean in distinct hybrid strategies.nnnPRACTICAL IMPLICATIONSnEnvironmental uncertainty needs to be matched with coping strategies and organizational capacities to design processes responsive to real needs of health care. This implies that lean and agile can be combined to optimize the design of hospitals, to meet different variations in demand and create good patient management.nnnORIGINALITY/VALUEnWhile considerable value has been paid to strategies to improve the internal efficiency within hospitals, this review raise the attention to the value of strategies of external effectiveness.

Going public: reflections on developing the DöBra research program for health-promoting palliative care in Sweden

Introduction: Public health approaches to end-of-life (EoL) research and care are relatively rare in Sweden, and health-promoting palliative care (HPPC) remains a foreign concept for most. We recently consolidated our HPPC endeavors into a cohesive research program, DöBra, to promote constructive change and awareness to support better quality of life and death among the general population, in specific sub-groups, and in interventions directed to professional groups caring for dying individuals, their friends and families. Objectives: In this article, we aim to share ideas, experiences, and reflections from the early stages of this research program, particularly in relation to how we try to work with new ‘publics’, to contribute to the development of HPPC as a new research field. Methods and Results: We discuss some considerations which arise in the Swedish context, and present the underlying ideas and approaches used in the research program, with examples of their application. HPPC, based on ideas from new public health, is essential as an umbrella for the DöBra program. Action research, experience-based co-design, and knowledge exchange, all aim to bring together a variety of stakeholders to exchange ideas and expertise, and co-create experience-based evidence through knowledge generation, dissemination, and sharing. Discussion: In reflecting on what we have learned about publics and partnerships in EoL research to date, we question distinctions made between professionals and publics, concluding that including publics in public health research, means also including ourselves and making public many of the reflections, the mistakes, and the experiences we all have, to foster collective learning.

Beyond the visual and verbal : Using participant-produced photographs in research on the surroundings for care at the end-of-life.

The web of relationships between wellbeing and the environments in which people live has long been recognized. However, relatively little research has been conducted about end-of-life surroundings from the perspective of the dying person. In this study, we investigate which aspects of their surroundings are particularly meaningful for the people inhabiting them in the last phases of life, based on participant-produced photographs with follow-up interviews. Twenty-three people were purposefully recruited via specialized in-patient palliative care/hospice units, specialized palliative care home care teams, and residential care facilities for the elderly. Participants were given a digital camera, and asked to take pictures of that which was meaningful for them in their surroundings. The interviewer later viewed the photographs with the participant, asking: what is this picture of? and why is it meaningful to you? The database consists of 76 photographs with follow-up interviews, which were analyzed qualitatively in an iterative process. These empirical data demonstrate how a sense of being valued, and of being able to maintain contacts with ones daily life and sense of identity appear supported or hindered by features of the care surroundings. These features include a positive aesthetic experience incorporating both sensory stimulation using ones body as well as general ambiance; support appropriate for maintaining a sense of functional independence; and connections with ones past, present and future as a person within a wider world. Corporeality appears crucial for understanding, negotiating and interacting in ones surroundings, while maintaining both physical and social function. This data collection approach was found to offer alternative forms of expression as verbal ability decreases and symptom burden increases, making it useful in end-of-life research and practice development.

Patients' initial steps to cancer diagnosis in Denmark, England and Sweden: What can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?

Objectives To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms. Design Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer. Participants 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6u2009months before interview. Setting Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants’ homes. Results Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden. Conclusion We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced.

Opening the doors a crack wider: palliative care research data in the public domain

This report builds further on OPCARE9, an EU 7th framework project aiming to identify knowledge gaps in care provision in the last days of life. This study began with curiosity about new ways of generating research questions to meet future challenges in palliative care (PC) and how to better engage disciplines not generally included in PC research. We here describe an innovative methodological approach to generating data; put data relevant for PC research in the public domain; and raise issues about open access in PC research. We aimed to compile research questions from different disciplines, based on raw data consisting of approximately 1000 descriptions of non-pharmacological caregiving activities (NPCAs), generated through previous research. 53 researchers from different fields were sent the full list of NPCAs and asked to generate research questions from their disciplinary perspective. Responses were received from 32 researchers from 9 countries, generating approximately 170 research topics, questions, reflections and ideas, from a wide variety of perspectives, which are presented here. Through these data, issues related to death and dying are addressed in several ways, in line with a new public health approach. By engaging a broader group of disciplines and facilitating availability of data in the public domain, we hope to stimulate more open dialogue about a wider variety of issues related to death and dying. We also introduce an innovative methodological approach to data generation, which resulted in a response rate at least equivalent to that in our Delphi survey of professionals in OPCARE9.

Awareness of cancer symptoms and anticipated patient interval for healthcare seeking. A comparative study of Denmark and Sweden

Abstract Background Recent epidemiologic data show that Denmark has considerably poorer survival from common cancers than Sweden. This may be related to a lower awareness of cancer symptoms and longer patient intervals in Denmark than in Sweden. The aims of this study were to: 1) compare population awareness of three possible symptoms of cancer (unexplained lump or swelling, unexplained bleeding and persistent cough or hoarseness); 2) compare anticipated patient interval when noticing any breast changes, rectal bleeding and persistent cough; and 3) examine whether potential differences were noticeable in particular age groups or at particular levels of education in a Danish and Swedish population sample. Method Data were derived from Module 2 of the International Cancer Benchmarking Partnership. Telephone interviews using the Awareness and Beliefs about Cancer measure were conducted in 2011 among 3000 adults in Denmark and 3070 adults in Sweden. Results Danish respondents reported a higher awareness of two of three symptoms (i.e. unexplained lump or swelling and persistent cough or hoarseness) and a shorter anticipated patient interval for two of three symptoms studied (i.e. any breast changes and rectal bleeding) than Swedish respondents. Differences in symptom awareness and anticipated patient interval between these countries were most pronounced in highly educated respondents. Conclusion Somewhat paradoxically, the highest awareness of symptoms of cancer and the shortest anticipated patient intervals were found in Denmark, where cancer survival is lower than in Sweden. Thus, it appears that these differences in symptom awareness and anticipated patient interval do not help explain the cancer survival disparity between Denmark and Sweden.