Strategies and checklist for designing and conducting palliative care research with family carers: EAPC international expert elicitation study.

BACKGROUND: Palliative care services seek to improve the wellbeing of family carers of people living with serious and life-limiting illness. To help achieve this goal, systematic reviews have recommended priority areas for family carer research and the need to improve the quality of study design. Policy makers have also advocated for enhanced family carer support. However, there are specific methodological considerations and challenges in designing and conducting carer research conducted during the course of the serious illness trajectory and in bereavement. AIM: To develop strategies to improve the design and conduct of research with family carers. DESIGN: Expert elicitation study using an adapted version of the 'Identify, Discuss, Estimate and Aggregate' elicitation protocol, supplemented with strategies from peer-reviewed literature. SETTING/PARTICIPANTS: Nine members of the management committee of the European Association for Palliative Care's Reference group on family carer research, comprising international senior research academics in family caregiving. RESULTS: A compilation of recommended strategies and checklist was created to: (a) help researchers plan research involving family carers focussing on: preparation, conduct and dissemination and (b) assist ethics committees and funding bodies to evaluate proposals. CONCLUSIONS: The strategies and checklist for conducting research with family carers may enhance methodologically rigorous research. Consequently, researchers, practitioners and policy makers will not only gain a more comprehensive understanding of the unmet needs of family carers but also promote the development of empirically sound interventions.

Impact of an education program to facilitate nurses' discussions of existential issues in neurological care.

OBJECTIVES: Discussing existential issues is integral to caring for people with acute, progressive, or life-limiting neurological illness, but there is a lack of research examining how nurses approach existential issues with this patient group and their family members. The purpose was to examine the experiential impact of an educational program for nurses designed to facilitate discussions of existential issues with patients and family members in neurological wards. METHOD: Nurses in inpatient and outpatient care at a neurological clinic in Sweden were invited to participate in an education program about discussing existential issues with patients and their family members as related to neurological conditions. The evaluation of the program and of the nurses' view of discussing existential issues was conducted through focus groups before and after participation. The data were analyzed by qualitative content analysis. RESULTS: The program gave nurses a deeper understanding of existential issues and how to manage these conversations with patients and their family members. Both internal and external barriers remained after education, with nurses experiencing insecurity and fear, and a sense of being inhibited by the environment. However, they were more aware of the barriers after the education, and it was easier to find strategies to manage the conversations. They demonstrated support for each other in the team both before and after participating in the program. SIGNIFICANCE OF RESULTS: The educational program gave nurses strategies for discussing existential issues with patients and family members. The knowledge that internal and external barriers impede communication should compel organizations to work on making conditions more conducive, for example, by supporting nurses to learn strategies to more easily manage conversations about existential issues and by reviewing the physical environment and the context in which they are conducted.

Daily Assessment of Stressful events and Coping in early post-operative recovery after colorectal cancer surgery.

This study describes the most stressful events and coping strategies used by patients with colorectal cancer 4-6 weeks after surgery and whether the coping strategies were considered helpful or not. For the investigation of situational coping, an exploratory design was used. One hundred and five patients from three Swedish hospitals were included to fill in the Daily Coping Assessment. Most stressful event, number and types of pre-defined coping strategies used, and if the coping strategy used was considered helpful or not, were measured for 5 days. Of 523 diary entries, 180 reported no stressful events. The most stressful event, also with worst level of control and expectation, was "Pain," followed by "Nausea/vomiting." The areas causing most stressful events were "Bowel-related" and "Surgery and treatment-related problems." Acceptance and Direct action were the most frequently used coping strategies. There was a wide range of perceived helpfulness if coping strategies were placed in relation to specific areas of events. The conclusion was that patients revealed several strategies for coping with stressful events but needed a higher level of preparedness for what might come and therefore need to be given appropriate support to cope during the early recovery phase. Such support is suggested to be person-centred and oriented towards individually adapting standardised regimens, given the variety of situations to which the stressful events reported in the study were related.

Challenges of evaluating a computer-based educational programme for women diagnosed with early-stage breast cancer: a randomised controlled trial.

In a two-group, multi-centre, randomised controlled 9 months trial, we (1) evaluated the impact of a computer-based educational programme compared to standard care and (2) examined whether different patterns of programme usage could be explained by demographic, medical and psychosocial factors. We involved 226 Swedish-speaking women diagnosed with early-stage breast cancer and scheduled for surgery. Primary outcomes were health self-efficacy and health care participation measured by the Comprehensive Health Enhancement Supportive System instrument. Secondary outcomes were anxiety and depression levels measured by the Hospital Anxiety and Depression scale. The Functional Assessment of Cancer Therapy-Breast and Sense of Coherence scales measured psychosocial factors for the study's secondary aim. Multi-level modelling revealed no statistically significant impact of the computer-based educational programme over time on the outcomes. Subsequent exploratory regression analysis revealed that older women with axillary dissection and increased physical well-being were more likely to use the programme. Furthermore, receiving post-operative chemotherapy and increased meaningfulness decreased the likelihood of use. Providing reliable and evidence-based medical and rehabilitation information via a computer-based programme might not be enough to influence multi-dimensional outcomes in women diagnosed with breast cancer. The use of these programmes should be further explored to promote adherence to e-Health supportive interventions.

Development and validation of the preparedness for Colorectal Cancer Surgery Questionnaire: PCSQ-pre 24.

PURPOSE: The aims of the study were to develop and psychometrically evaluate a patient-reported outcome instrument for the measurement of preoperative preparedness in patients undergoing surgery for colorectal cancer. METHODS: This study was conducted in two stages: a) instrument development (item generation, construction of items and domains), empirical verification and b) instrument evaluation. A questionnaire with 28 items measuring preparedness for surgery was developed covering four domains and was tested for content validity with an expert panel and with patients. Psychometric testing of the questionnaire was conducted on 240 patients undergoing elective surgery for colorectal cancer. RESULTS: The scale content validity index of the preparedness items was 0.97. The final version consisted of 24 items measuring 4 subscales: Searching for and making use of information, Understanding and involvement in the care process, Making sense of the recovery process and Support and access to medical care. Confirmatory factor analysis revealed good model fit with standardized factor loadings ranging from 0.58 to 0.97. A well-fitting second-order factor model provided support for a total preparedness score with second-order factor loadings ranging from 0.75 to 0.93. The ordinal alpha values of the four latent factors ranged from 0.92 to 0.96, indicating good internal consistency. The polyserial correlations with the total score were 0.64 (p < 0.01) for the overall preparedness question and 0.37 (p < 0.01) for overall well-being. CONCLUSION: The Swedish Preparedness for Colorectal Cancer Surgery Questionnaire for use in the preoperative phase demonstrated good psychometric properties based on a sound conceptualization of preparedness.

Enabling sense-making for patients receiving outpatient palliative treatment: A participatory action research driven model for person-centered communication.

OBJECTIVES: In clinical palliative cancer care, the diversity of patient concerns over time makes information provision a critical issue, the demands of information-seeking patients presenting a challenge to both the communicative and organizational skills of the health provider. This study puts forward a practice model for communication between patients, their family members, and professional health providers during ongoing palliative chemotherapy; a model which supports the providers in enabling person-centered communication. METHOD: A constant comparative analysis adapted to participatory action research was applied. The model was developed step-wise in three interrelated cycles, with results from previous studies from palliative cancer care processed in relation to professional health providers' experience-based clinical knowledge. In doing this, focus group discussions were carried out with providers and patients to develop and revise the model. RESULTS: The Enabling Sense Making model for person-centered communication gave rise to three domains (which are also the major communicative actors in palliative care): the patient, the family, and the provider. These actors were placed in the context of a communicative arena. The three respective domains were built up in different layers discriminating between significant aspects of person-centered communication, from the manifest that is most usually explicated in dialogues, to the latent that tends to be implicitly mediated. SIGNIFICANCE OF RESULTS: The model intends to facilitate timely reorientation of care from curative treatment or rehabilitation to palliation, as well as the introduction of appropriate palliative interventions over time during palliative phases. In this way the model is to be regarded a frame for directing the awareness of the professionals, which focuses on how to communicate and how to consider the patient's way of reasoning. The model could be used as a complement to other strategic initiatives for the advancement of palliative care communication. It needs to be further evaluated in regard to practice evidence.

Structure and content in consultations with patients undergoing surgery for colorectal cancer.

PURPOSE: To explore the structure and content of pre-planned consultations as part of the care and treatment of patients undergoing surgery for colorectal cancer. METHODS: The study was based on 50 transcripts of audio-recorded pre-planned consultations between seven patients and 36 healthcare professionals from the time of diagnosis, pre-operative consultation, discharge consultation and pathology report in a colorectal unit. RESULTS: The spread of consultation time between professions was considerable. Total mean consultation time for patients during the care process (7 consultations/patient) was 111 min (range 83-191). The mean consultation time for surgeons was 18 min (7-40), anaesthesiologists 12 min (5-18) and nurses 14 min (5-49). Patients took up 40% of the word space, healthcare professionals used 59% and significant others 1%. Word space changed in such a way that the patient became more active towards the final consultation. Neither during the diagnosis consultation nor during the pre-operative consultation did the patients meet the operating surgeon. Six major subjects emerged: general health, diagnosis, surgical procedure, pre-operative preparations, recovery and treatment and follow-up. CONCLUSIONS: There is a need for clearer structure in the consultations. Most consultations lacked a clear introduction to the subject of the conversation. The study makes it possible to develop methods and structure for supporting conversations in which the patient is given space to help with the difficult issues present after undergoing surgery for colorectal cancer. The study also contributes to providing knowledge of how to organise surgical consultations in order to optimise person-centeredness, teamwork and clinical efficiency.

Students' learning as the focus for shared involvement between universities and clinical practice: a didactic model for postgraduate degree projects.

In an academic programme, completion of a postgraduate degree project could be a significant means of promoting student learning in evidence- and experience-based practice. In specialist nursing education, which through the European Bologna process would be raised to the master's level, there is no tradition of including a postgraduate degree project. The aim was to develop a didactic model for specialist nursing students' postgraduate degree projects within the second cycle of higher education (master's level) and with a specific focus on nurturing shared involvement between universities and healthcare settings. This study embodies a participatory action research and theory-generating design founded on empirically practical try-outs. The 3-year project included five Swedish universities and related healthcare settings. A series of activities was performed and a number of data sources secured. Constant comparative analysis was applied. A didactic model is proposed for postgraduate degree projects in specialist nursing education aimed at nurturing shared involvement between universities and healthcare settings. The focus of the model is student learning in order to prepare the students for participation as specialist nurses in clinical knowledge development. The model is developed for the specialist nursing education, but it is general and could be applicable to various education programmes.

On the use of narratives in nursing research.

On the use of narratives in nursing research Narratives have always been a path to knowledge in nursing care but are a recent element within nursing research. Therefore, this article deals with the narrative and its use within nursing research. First, the use of narratives in nursing care and nursing research is examined. Second, Paul Ricoeur's narrative theory with its dimensions of interpretation, time, action and ethics is presented as a possible methodological basis. Third, the use of Ricoeur's narrative theory in nursing research is examined, showing that, at present, support mainly comes from Ricoeur's text interpretation theory. Finally, a nursing research approach to the narrative, based on the life-world, is suggested.

Context and methodological decontextualization in nursing research with examples from phenomenography.

In both human science and nursing research the concept of context is important. However, context can be understood in different ways. The aim of this article is to elucidate, discuss and problematize context, decontextualization and recontextualization in some health care-related phenomenographical studies. A further aim is to problematize the concept of context in a wider perspective of human science, in order to gain a better understanding of phenomenographical research related to nursing care. Our analysis indicates that the complex phenomena which characterize nursing research demand a broad contextual understanding. Both the local or immediate context and the global or mediated context must be considered, as they are dialectically related. This includes the informants' experiences of the phenomenon of interest as well as the socio-cultural discourse. A balance between openness and pliability to the phenomenon is suggested. Reflection is considered an important tool in this process. Within phenomenography, the interest is directed towards conceptions of certain aspects of the world. Thus, context in a wider sense is given a subordinate role. Accordingly, phenomenography is considered to have limited applicability in nursing research when complex phenomena are to be studied.

The professional identity of the nurse: concept analysis and development.

The aim of this paper is to highlight the concept of professional identity of the nurse in order to promote theoretical clarity and examine implications for nursing practice. A modification of the hybrid model for concept development was followed. Accordingly, the theoretical analysis of conceptualizations and corresponding theoretical frameworks were combined with empirical data gathered from the field, from semi-structured interviews with eight registered nurses. The sampling was strategic and continuous. Personal and interpersonal dimensions and socio-historical aspects of the concept were found in the literature review as well as in the interview data. Attributes, antecedents and consequences of professional identity of the nurse in relation to the identified dimensions were stated. The analysis ends with a comprehensive description of the concept. Further, the relations to the concepts of self-esteem, self-image, professionalism and professional self-image, as well as professional function and roles of the nurse, are outlined. Finally, the importance of the developed concept is discussed, and suggestions for further research are presented.

[Long-term prognosis of chronic B and C viral hepatitis]. / Die Langzeitprognose chronischer Virus B- und Virus C-Hepatitiden. Wartenberg-Studie (1974-1994), Teil 1.

146 patients (62 female, 84 male) with chronic hepatitis B and 80 patients (34 female, 46 male) with chronic hepatitis C were regularly examined in 1 to 2 year intervals with an average follow-up period of 12 years (mean). Each time patients were evaluated by physical examination, routine laboratory data, immunological and serological testing, ultrasonography, and laparoscopy and/or percutaneous liver biopsy. No patient of the study underwent immunosuppressive or antiviral treatment at any time.-The average time data in years are given as the median value (mean). Chronic hepatitis B: Histologic diagnoses and their long-term prognosis: Chronic persistent hepatitis (CPH) on first biopsy: 10% of cases complete recovery after 15 years, 70% progression to chronic active hepatitis (CAH) after 5 years; CAH: 30% advanced remission/complete recovery 8 years after the first diagnosis of CAH, 40% progression to liver cirrhosis after 5 years; liver cirrhosis: 50% advanced remission/recovery 4 years after the first diagnosis of cirrhosis, 5% developed a hepatocellular carcinoma (HCC) 11 years after the first diagnosis of cirrhosis. Natural history: In the 11 years following initial diagnosis of HBV-infection spontaneous recovery was observed in 49% of cases. In 3% of the patients the disease eventually caused death (1 x hemorrhage of oesophageal varices, 3x HCC after 14 to 20 years). Chronic hepatitis C: All patients were anti-HCV- and HCV-RNA-positive.-There was no spontaneous elimination of virus in any patient (maximal follow-up 27 years).(ABSTRACT TRUNCATED AT 250 WORDS)

Professionalization--theoretical analysis of the implications for nursing practice.

The aim of the present paper is to examine ideas of professionalization, and to explore in what way they might give directions for the development of nursing practice. An examination of the literature on professionalization in social science reveals that the existing ideas of professionalization may be divided into two paradigms, denominated naïve paradigm and cynical paradigm. Both paradigms have been criticized on the grounds of being idealistic and ahistoric. A contemporary view has developed from this criticism, oriented towards the historical and social contexts of professions. The implications for nursing practice of this view brings into focus the development of nursing practice in relation to the public and the tradition of nursing. This view of professionalization contributes to a contemporary view of nursing practice, and an expanded idea of professionalization is discussed.

[Clinico-chemical diagnosis of the cholestasis syndrome]. / Klinisch-chemische Diagnostik des Cholestase-Syndroms.

1. Cholestatic reactions of various etiology are biochemically established by determination of alkaline phosphatase, gamma-glutamyltranspeptidase (and leucinaminopeptidase) activities and of bile acid concentrations in serum. 2. The pathomechanisms of elevated serum activities of AP, gamma-GT and LAP in cholestatic diseases are - an induction of these canalicular membrane bound enzymes, probably due to an intracellular increase of bile acids, - a partial solubilization of canalicular membrane structure (detergent effect of bile acids), - a histochemically and morphologically demonstrable change of liver cell polarity. 3. A discrimination of intra- or extrahepatic cholestasis only by means of biochemical parameters is impossible. 4. Additional serological and immunological parameters often demonstrate the etiology of cholestatic diseases; a short review is given.