'Everything is as before, but nothing is as it was'-A phenomenological-hermeneutic study of meaningfulness in adult patients with refractory epilepsy after interdisciplinary epilepsy rehabilitation.

BACKGROUND: Interdisciplinary Rehabilitation aimed at adults with refractory epilepsy (RE) establishes scientific evidence of higher health-related QoL, including improved self-worth and increased self-awareness as outcomes. Yet, there is very little research-based knowledge of how life transforms itself after the rehabilitation program from patients' perspectives. AIM: The aim of this study was to identify and describe how - from the patient perspectives - life transforms itself after rehabilitation among adults with RE, focusing on the meaningfulness of interdisciplinary rehabilitation. METHOD: Nine patients, who all completed an Interdisciplinary Rehabilitation Program in an Adult Epilepsy Clinic, were interviewed between six months and two years after rehabilitation. Nine interviews were recorded, transcribed verbatim, and analyzed as described by the phenomenological method 'Reflective Lifeworld Research' (RLR). FINDINGS: The essence of the phenomenon was revealed as life as a struggle for a dignified existence with RE as a navigating life companion. Through the clusters of meaning, four constituents emerged from the phenomenon: 1) to accept the limitations of body and mind; 2) to be on a journey toward your inner self; 3) to be quietly understood; 4) to fight for renewed hope and recognition during transition. CONCLUSION: The patients consider it significant to know their own bodies with the constraints that this involves. This knowledge helps them make decisions that not only have a positive effect on their epilepsy, but also raise their self-esteem and give them renewed hope and courage to face life. However, the struggle for a dignified life is continuously hard, and it comes to a head in patients' transition from 'patient to citizen', where asymmetries arise. These asymmetries leave considerable marks on the patients' worlds and challenge their renewed hope for a dignified existence.

Results from the family and coping oriented palliative homecare intervention study (FamCope)-A randomized controlled trial.

We tested if a family-and-coping-oriented basic palliative homecare intervention (six visits within 15 weeks) could improve quality-of-life and reduce anxiety and depression of advanced cancer patients and their closest relative, and reduce acute hospital admissions of patients. Fifty-seven families were randomized, but patient enrollment was terminated before reaching target sample due to a low recruitment rate. We found no evidence of effect of the FamCope-intervention, but further investigation of effective methods to support how families cope with advanced cancer at home is needed as levels of distress is as high in relatives as it is in patients. However, duration of interventions to support family-coping may need a considerable time-span to show effect on quality-of-life. We recommend that recruitment is undertaken in close collaboration with the hospital clinics, and that complexity of problems is used as inclusion criterion to decide when a family-coping intervention is needed based on the level of problems and distress in the family.

How can group-based multidisciplinary rehabilitation for patients with fibromyalgia influence patients' self-efficacy and ability to cope with their illness: a grounded theory approach.

AIMS AND OBJECTIVES: To describe how group-based multidisciplinary rehabilitation for patients with fibromyalgia can influence patients' self-efficacy and ability to cope with their illness. BACKGROUND: Multidisciplinary rehabilitation is recommended in the management of fibromyalgia. Self-efficacy is said to influence and predict adaptive coping behaviours and functioning. However, knowledge is lacking on how rehabilitation programmes may influence self-efficacy and ability to cope, from the patients' perspective. DESIGN: Grounded theory study of semi-structured focus group interviews. METHODS: Participants (n = 17) were included in four focus groups that had completed a two-week multidisciplinary rehabilitation programme together. Interviews were conducted four weeks after each group had completed the programme. The analysis was conducted constant comparatively applying open, axial and selective coding. RESULTS: Categories (in italics) were derived from data in which the explanatory core category was identified: Learning to accept and live with pain as a life condition, and linked to three categories mutually influencing each other: Increased self-acceptance of living with the illness, experiencing acceptance from others and developing new coping strategies. Thus, patients benefitted from multidisciplinary rehabilitation with stronger self-efficacy and expectations to their future coping. However, limitations in the programme were identified, as the programme was short and intensive with no subsequent follow-up, and social welfare was not sufficiently addressed. Participants also found it difficult to maintain knowledge and were lacking individual sessions with the psychologist and had waited long to receive rehabilitation. CONCLUSION: Multidisciplinary rehabilitation may advantageously be offered to patients with fibromyalgia. However, earlier action with longer programmes, in which patients' social situation is addressed, comprising individual sessions with the psychologist, with multiple repetitions of the content and follow-up sessions, may further enhance the patients' self-efficacy and coping with their illness.

Barriers and facilitating factors related to use of early warning score among acute care nurses: a qualitative study.

BACKGROUND: The early warning score (EWS) was developed to identify deteriorating patients early. It is a track-and-trigger system based on vital signs designed to direct appropriate clinical responses based on the seriousness and nature of the underlying condition. Despite its wide dissemination, serious adverse events still occur, often due to failure among staff on general wards to follow the EWS protocol. The purpose of the study was to determine barriers and facilitating factors related to three aspects of the EWS protocol: 1) adherence to monitoring frequency, 2) call for junior doctors to patients with an elevated EWS, and 3) call for the medical emergency team. METHODS: Focus groups were conducted with nurses from medical and surgical acute care wards, and content analysis was used to identify barriers and facilitating factors in relation to the research questions. RESULTS: Adherence to monitoring frequency would frequently be set aside during busy periods for other tasks. Collaboration and communication with doctors about medical patients with elevated EWS was considered to be unrealistic due to the high number of patients with these scores. Collaboration with the medical emergency team was problematic, since many nurses found the team to have negative attitudes. CONCLUSION: EWS reduces complex clinical conditions to a single number, with the inherent risk to overlook clinical cues and subtle changes in patients' condition. The study showed that identifying and treating deteriorating patients is a collaborative task that requires diverse technical and non-technical skills for staff to perform optimally.

The experiences of health-related quality of life in patients with nonspecific symptoms who undergo a diagnostic evaluation for cancer: a qualitative interview study.

The diagnostic phase of cancer can affect health-related quality of life (HRQoL). The aim of this study was to investigate how patients with nonspecific symptoms experience HRQoL while undergoing diagnostic evaluations for cancer. Twenty-one participants who had completed a fast-track evaluation for possible cancer at one of three hospitals in the Capital Region, Denmark were interviewed 2-4 weeks after completing diagnostic evaluations. The interviews were semi-structured and were supported by an interview guide based on the same themes as in The European Organisation for Research and Treatment of Cancer Quality of Life questionnaire (EORCT-QLQ-C30). Data analysis was based on qualitative content analysis by Krippendorff. The analysis generated six categories: symptoms, physical-, role-, emotional-, cognitive- and social functioning, and the diagnostic fast-track experience. From these categories, a main theme was identified: Health-related quality of life is not solely affected by the diagnostic process. The results provide a comprehensive understanding of HRQoL in the diagnostic phase of possible cancer, which can be used not only to enhance evidence-based care, but also in the interpretation of the EORTC-QLQ-C30 scores. Psycho-social support with a focus on individual informational needs during the diagnostic phase may be warranted.

Health-related quality of life, anxiety and depression in the diagnostic phase of suspected cancer, and the influence of diagnosis.

BACKGROUND: Undergoing diagnostic evaluation for cancer has been associated with a high prevalence of anxiety and depression and affected health-related quality of life (HRQoL). The aims of this study were to assess HRQoL, anxiety, and depression pre- and post-diagnosis in patients undergoing diagnostic evaluations for cancer due to non-specific symptoms; to examine changes over time in relation to final diagnosis (cancer yes/no); and to assess the predictive value of pre-diagnostic psychological, socio-demographic and clinical factors. METHODS: A prospective, multicenter survey study of patients suspected to have cancer based on non-specific symptoms was performed. Participants completed the EORTC-QLQ-C30 quality of life scale, HADS, SOC-13 and self-rated health before and after completing diagnostic evaluations. Intra- and inter-group differences between patients diagnosed with cancer versus patients with non-cancer diagnoses were calculated. The impact of baseline psychological, socio-demographic, and medical factors on HRQoL, anxiety and depression at follow-up was explored by bootstrapped multivariate linear regression analyses and logistic regression analyses. RESULTS: A total of 838 patients participated in this study; 679 (81 %) completed the follow-up. Twenty-two percent of the patients received a cancer diagnosis at the end of the follow-up. Patients presented initially with a high burden of symptoms and affected role and emotional functioning and global health/QL, irrespective of diagnosis. The prevalence of clinical anxiety prior to knowledge of the diagnosis was 32 % in patients with cancer and 35 % in patients who received a non-cancer diagnosis. HRQoL and anxiety improved after diagnosis, and a larger improvement was seen in patients who received a non-cancer diagnosis. There were no intra- or inter-group differences in the depression scores. The strongest predictors of global QL, anxiety, and depression after a known diagnosis were baseline scores, co-morbidity and poor self-rated health. CONCLUSIONS: Patients undergoing diagnostic evaluations for cancer based on non-specific symptoms experience a high prevalence of anxiety and affected quality of life prior to knowledge of the diagnosis. The predictive value of the baseline scores is important when assessing the psychological impact of undergoing diagnostic evaluations for cancer.

Alcoholic liver disease patients' perspective of a coping and physical activity-oriented rehabilitation intervention after hepatic encephalopathy.

AIM AND OBJECTIVE: To identify and describe the impact of a coping and physical activity-oriented rehabilitation intervention on alcoholic liver disease patients after hepatic encephalopathy in terms of their interaction with professionals and relatives. BACKGROUND: Patients who have experienced alcohol-induced hepatic encephalopathy have reduced quality of life, multiple complications, and social problems, and rehabilitation opportunities for these patients are limited. DESIGN: A grounded theory study and an evaluation study of a controlled intervention study. METHODS: Semi-structured interviews were conducted with 10 alcoholic liver disease patients who were diagnosed with hepatic encephalopathy and participated in a coping and physical activity-oriented rehabilitation intervention. Richard S. Lazarus's theory of stress and coping inspired the interview guide. RESULTS: The significance of a coping and physical activity-oriented rehabilitation intervention on alcoholic liver disease patients' ability to cope with problems after surviving alcohol-induced hepatic encephalopathy in terms of their interaction with professionals and relatives was characterised by the core category 'regain control over the diseased body'. This is subdivided into three separate categories: 'the experience of being physically strong', 'togetherness' and 'self-control', and they impact each other and are mutually interdependent. CONCLUSION: Alcoholic liver disease patients described the strength of the rehabilitation as regaining control over the diseased body. Professionals and relatives of patients with alcoholic liver disease may need to focus on strengthening and preserving patients' control of their diseased body by facilitating the experience of togetherness, self-control and physical strength when interacting with and supporting patients with alcoholic liver disease. RELEVANCE TO CLINICAL PRACTICE: A coping and physical activity-oriented rehabilitation intervention may help alcoholic liver disease patients to regain control over their diseased body and give patients the experience of togetherness, self-control and physical strength. Professionals should be aware of giving the patients the experience of togetherness in their interactions, help them perceive self-control and gain physical strength during their rehabilitation.

The adaptation of a Danish version of the Pain Self-Efficacy Questionnaire: reliability and construct validity in a population of patients with fibromyalgia in Denmark.

The aim of this study was to translate, culturally adapt and evaluate the psychometric properties of the Pain Self-Efficacy Questionnaire (PSEQ) in a population of patients with fibromyalgia in Denmark. The study sample included 102 patients diagnosed with fibromyalgia referred to a specialist clinic. The PSEQ was translated and adapted to a Danish setting using a standard stepwise forward-backward translation procedure, followed by initial testing and focus group interview. Reliability was examined by analysing internal consistency and test-retest agreement. Construct validity was examined by investigating dimensionality, targeting, local independence, category functioning and differential item functioning (DIF). Reliability was high: Cronbach's alpha 0.88, test-retest correlation 0.93, intraclass correlation coefficient (ICC) 0.89 and item-total correlations 0.44-0.70. Factor analyses and item response (IRT) models indicated unidimensionality, and the PSEQ-DK was well targeted to the sample. High interitem correlation was observed between two items, indicating local dependence, and item misfit and DIF were observed for a few items. However, the overall fit of the scale to a single-factor model and IRT models supported acceptable construct validity. The PSEQ-DK showed acceptable psychometric properties and can therefore represent a reliable and valid measure for evaluating self-efficacy in patients with fibromyalgia in Denmark.

Coping and rehabilitation in alcoholic liver disease patients after hepatic encephalopathy--in interaction with professionals and relatives.

AIMS AND OBJECTIVES: To identify and describe conditions that limit or support patients, with alcoholic liver disease after surviving alcohol-induced hepatic encephalopathy, ability to cope with current and potential physical and psychosocial problems--in interaction with professionals and relatives--and to recommend appropriate interventions. BACKGROUND: Alcoholic liver disease patients surviving alcohol-induced hepatic encephalopathy have significantly impaired quality of life. Internationally, there is a lack of knowledge about the conditions that affect alcoholic liver disease patients' coping and rehabilitation. DESIGN: A grounded theory study. METHODS: Semi-structured interviews, conducted with 11 alcoholic liver disease patients who were diagnosed with hepatic encephalopathy. The interview guide was inspired by Richard S. Lazarus's theory of stress and coping. RESULTS: The elements that support or limit alcoholic liver disease patients' ability to cope with physical and psychosocial problems in interaction with professionals and relatives were represented by the core category 'Struggle for preservation of identity as a significant individual'. It was characterised by three categories, which are interrelated and impact upon each other: 'Acknowledgement', 'Struggle to maintain control' and 'Achieving a sense of security'. CONCLUSION: Alcoholic liver disease patients experience a struggle to preserve their identity as a significant individual. It can be assumed that professionals and relatives in their interaction with, and support of, patients should focus on strengthening and preserving patients' identity in the form of acknowledgement, helping alcoholic liver disease patients maintain self-control and providing a safety net so patients feel a sense of security. RELEVANCE TO CLINICAL PRACTICE: It can be assumed that professionals should support alcoholic liver disease patients' appraisal of, and coping with, physical and psychosocial problems based on acknowledgment, understanding and a sympathetic attitude. Professionals should proactively approach patients when they withdraw. It may be useful for professionals to be aware of alcoholic liver disease patients' individual coping strategies and thereby their individual requirements for professional supportive intervention.

Home-based telehealth hospitalization for exacerbation of chronic obstructive pulmonary disease: findings from "the virtual hospital" trial.

BACKGROUND: Telehealth interventions for patients with chronic obstructive pulmonary disease (COPD) have focused primarily on stable outpatients. Telehealth designed to handle the acute exacerbation that normally requires hospitalization could also be of interest. The aim of this study was to compare the effect of home-based telehealth hospitalization with conventional hospitalization for exacerbation in severe COPD. MATERIALS AND METHODS: A two-center, noninferiority, randomized, controlled effectiveness trial was conducted between June 2010 and December 2011. Patients with severe COPD admitted because of exacerbation were randomized 1:1 either to home-based telehealth hospitalization or to continue standard treatment and care at the hospital. The primary outcome was treatment failure defined as re-admission due to exacerbation in COPD within 30 days after initial discharge. The noninferiority margin was set at 20% of the control group's risk of re-admission. Secondary outcomes were mortality, need for manual or mechanical ventilation or noninvasive ventilation, length of hospitalization, physiological parameters, health-related quality of life, user satisfaction, healthcare costs, and adverse events. RESULTS: In total, 57 patients were randomized: 29 participants in the telehealth group and 28 participants in the control group. Testing the incidence of re-admission within 30 days after discharge could not confirm noninferiority (lower 95% confidence limit [CL], -24.8%; p=0.35). Results were also nonsignificant at 90 days (lower 95% CL, -16.2%; p=0.33) and 180 days (lower 95% CL, -16.6%; p =0.33) after discharge. Superiority testing on secondary outcomes showed nonsignificant differences between groups. Healthcare costs have not yet been evaluated. CONCLUSIONS: Whether home-based telehealth hospitalization is noninferior to conventional hospitalization requires further investigation. The results indicate that a subgroup of patients with severe COPD can be treated for acute exacerbation at home using telehealth, without the physical presence of health professionals and with a proper organizational "back-up."

Recruitment and Reasons for Non-Participation in a Family-Coping-Orientated Palliative Home Care Trial (FamCope).

Cancer patients and their family caregivers need support to cope with physical, psychosocial, and existential problems early in the palliative care trajectory. Many interventions target patient symptomatology, with health care professionals acting as problem-solvers. Family coping, however, is a new research area within palliative care. The FamCope intervention was developed to test if a nurse-led family-coping-orientated palliative home care intervention would help families cope with physical and psychosocial problems at home--together as a family and in interaction with health care professionals. However, an unexpectedly high number of families declined participation in the trial. We describe and discuss the recruitment strategy and patient reported reasons for non-participation to add to the knowledge about what impedes recruitment and to identify the factors that influence willingness to participate in research aimed at family coping early in the palliative care trajectory. Patients with advanced cancer and their closest relative were recruited from medical, surgical, and oncological departments. Reasons for non-participation were registered and characteristics of participants and non-participants were compared to evaluate differences between subgroups of non-participants based on reasons not to participate and reasons to participate in the trial. A total of 65.9% of the families declined participation. Two main categories for declining participation emerged: first, that the "burden of illness is too great" and, second, that it was "too soon" to receive this kind of support. Men were more likely to participate than women. Patients in the "too soon" group had similar characteristics to participants in the trial. Timing of interventions and readiness of patients and their relatives seems to affect willingness to receive a family-coping-orientated care approach and impeded recruitment to this trial. Our findings can be used in further research and in clinical practice in order to construct interventions and target relevant populations for early family-coping-orientated palliative care.

The impact of virtual admission on self-efficacy in patients with chronic obstructive pulmonary disease - a randomised clinical trial.

AIMS AND OBJECTIVES: To investigate how virtual admission during acute exacerbation influences self-efficacy in patients with chronic obstructive pulmonary disease, compared with conventional hospital admission. BACKGROUND: Telemedicine solutions have been highlighted as a possible way to increase self-efficacy in patients with chronic diseases, such as chronic obstructive pulmonary disease. However, little is known about how telemedicine-based virtual admission as a replacement of hospital admission during acute exacerbation affects chronic obstructive pulmonary disease patients' self-efficacy. DESIGN: This study was a nonblinded, randomised clinical multicentre trial. The study was a substudy to The Virtual Hospital, investigating the feasibility and safety of telemedicine-based treatment at home for patients with acute exacerbation of chronic obstructive pulmonary disease. METHODS: Participants were consecutively randomised to virtual admission or conventional hospital admission. Data from 50 patients were analysed. Self-efficacy was assessed at baseline, three days after discharge, and also six weeks and three months after discharge, using the Danish version of 'The chronic obstructive pulmonary disease self-efficacy scale'. RESULTS: Intergroup comparison showed no significant differences between the two groups at baseline, three days after discharge, six weeks after discharge or three months after discharge. Furthermore, intragroup comparison did not reveal significant differences in the chronic obstructive pulmonary disease self-efficacy scale mean sum score within the two groups. CONCLUSIONS: The results of the study suggest that there is no difference between self-efficacy in chronic obstructive pulmonary disease patients undergoing virtual admission, compared with conventional hospital admission. However, the anticipated sample size could not be reached, which prompts caution regarding interpretation of the findings. RELEVANCE TO CLINICAL PRACTICE: This study provides new insight into how virtual admission affects chronic obstructive pulmonary disease patients' self-efficacy. Clinicians should consider the timing, duration and the content in the design of telemedical interventions directed at improving chronic obstructive pulmonary disease patients' self-efficacy, as telemedicine solutions alone may not be sufficient to enhance self-efficacy.

How virtual admission affects coping - telemedicine for patients with chronic obstructive pulmonary disease.

AIMS AND OBJECTIVES: To describe what characterises chronic obstructive pulmonary disease patients' coping of physical, emotional and social problems before, during and after virtual admission, in interaction with health professionals and relatives. BACKGROUND: Telemedicine for patients with chronic obstructive pulmonary disease is gaining ground. However, virtual admission using telemedicine in the patients' home as a replacement of hospital admission has received little attention. Furthermore, little is known about how telemedicine affects chronic obstructive pulmonary disease patients' coping. DESIGN: Grounded Theory study using semi-structured interviews. METHODS: The study was a part of The Virtual Hospital study, exploring virtual admission for patients with acute exacerbation of chronic obstructive pulmonary disease. During virtual admission, patients had access to medical equipment consisting of monitoring devices, medication, nebuliser and a touch screen with built-in videoconference system. Nine participants were interviewed after virtual admission. Open coding, axial coding and selective coding, using constant comparative analysis, were conducted. RESULTS: A substantive Grounded Theory was developed, containing the core category - struggling to be in control of life with chronic obstructive pulmonary disease - related to four categories: complete powerlessness, dependency, pursuit of regaining autonomy and efforts to remain in control of problems related to chronic obstructive pulmonary disease. Virtual admission supported participants' autonomy. The involvement of health professionals was reduced as participants used the medical equipment to cope with disease-related problems. Participants' coping was closely linked to the presence of the equipment, making it difficult for them to apply their experiences after discharge from virtual admission. CONCLUSIONS: Virtual admission may support chronic obstructive pulmonary disease patients' coping of physical and emotional problems. However, coping experiences made during virtual admission may not be directly applicable outside a telemedical setting. RELEVANCE TO CLINICAL PRACTICE: Telemedicine may result in different roles for patients, relatives and health professionals. Clinicians should consider how they can support chronic obstructive pulmonary disease patients' coping during telemedical interventions, focusing on how to ensure a sustained improvement that patients can benefit from outside the telemedical setting.

Telemedicine-based treatment versus hospitalization in patients with severe chronic obstructive pulmonary disease and exacerbation: effect on cognitive function. A randomized clinical trial.

OBJECTIVES: Telemedicine is gaining ground in the treatment of patients with chronic obstructive pulmonary disease (COPD). Because telemedicine often requires both participation and engagement of the patients, it is important to take differences in cognitive ability into account, as there is evidence that cognitive dysfunction may be a limitation in patients with severe COPD. The aim of this study was to investigate whether cognitive performance is better after telemedicine-based treatment than after conventional hospitalization in patients with severe COPD and a mild to moderate exacerbation. MATERIALS AND METHODS: This randomized study was a substudy of the "Virtual Hospital," a multicenter, randomized controlled trial. The primary outcome in this substudy was cognitive function, evaluated 3 days and 6 weeks after discharge using a neuropsychological test battery comprising four tests and seven variables. RESULTS: We included 44 patients consecutively. Baseline characteristics were as follows: mean age, 70 (standard deviation [SD] 10) years; mean forced expiratory volume in 1 s, 1.0 (SD 0.55) L (42% of predicted); mean hemoglobin oxygen saturation, 95 (SD 2.0) percent; and mean Mini Mental State Examination score, 27.5 (SD 1.6) points. The performance in all seven neuropsychological test variables tended to be better in the group allocated to virtual admission 3 days and 6 weeks after discharge, but the difference was not significant after Bonferroni's correction for multiple comparisons. CONCLUSIONS: There were no significant differences in cognitive performance between the telemedicine-based group and the conventional hospital group. Patients with severe COPD suffering from mild to moderate exacerbations were able to manage the telemedicine-based treatment despite the reduced cognitive function often seen in COPD patients.

Identifying factors significant to continuity in basic palliative hospital care-from the perspective of patients with advanced cancer.

Based on the research method grounded theory and semistructured patient interviews at home following hospitalization, the aim was to provide information on issues relating to the identification and alleviation of patients' physical and emotional problems, understood as continuity in palliative care. The interviews were based on selected problems that patients found significant. The results are distilled into the core category disheartening interactions and four categories: falling outside the professional framework, not being seen as a person, unidentified/unmet need for guidance and involvement, and patient strategy-minimizing conflict. The categories are significant in generating and maintaining continuity in basic palliative care.

Conditions that are significant for advanced cancer patients' coping with their suffering-as experienced by relatives.

As long as life could be lived as before patients could cope with their problems. But the progression of the illness challenged feelings and filled life with increasing levels of chaos and feelings of powerlessness. Relatives became involved quite late in the patients' interaction with the professionals, an interaction that was characterized by lack of continuity and the professionals' focus on the patient's sick body. It was therefore seldom that professionals had insight into the family's resources and need for professional support. This made it more difficult for the family to evaluate, control and cope with their suffering. Instead, patients gradually adapted to the professionals' and relatives' priorities and sometimes their control over the increasingly failing and dying body.

Danish version of 'The COPD self-efficacy scale': translation and psychometric properties.

The aim of the study was to translate 'The COPD self-efficacy scale' (CSES) into Danish and to evaluate the psychometric properties of the Danish version (CSES-DK). CSES enables assessment of self-efficacy in individuals with chronic obstructive pulmonary disease (COPD). The scale consists of 34 items, describing situations which may cause dyspnoea in patients with COPD. The CSES was translated into Danish using a standard forward-backward translation procedure. To estimate the reliability, measurements of internal consistency and repeatability were applied. The validity of the Danish version was evaluated by examining the associations between the CSES-DK score and socio-demographic variables (age, gender, education, disease severity and self-rated health). Factor analysis was conducted to compare the internal structure of the Danish version and the American source version. The study included 151 patients with COPD, recruited from three outpatient clinics. Estimates of reliability were in accordance with the original version of CSES (Cronbach's α = 0.97, test-retest r = 0.82, p < 0.001). Significant correlations were obtained between the CSES-DK total score and vocational training and education (r = 0.27, p = 0.001), disease severity (r = -0.27, p = 0.001) and self-rated health (r = -0.41, p < 0.001), indicating construct validity. Five factors were extracted from both versions of CSES. However, in the CSES-DK, only one factor concerns emotions, whereas two factors describing emotions were obtained for the original scale. Furthermore, important discrepancies exist with respect to the direction of the scoring of CSES. In some studies, a high score indicates high self-efficacy, whereas it indicates low self-efficacy in other studies, which complicates the comparison of studies. The Danish version of CSES showed acceptable measurements of reliability and validity. Potential limitations of the scale were identified, and discrepancies exist between the factor structure of the original and Danish version. Consequently, more studies of the factor structure should be conducted on both the original CSES and the translated versions of the instrument.

Testing the feasibility of the Dignity Therapy interview: adaptation for the Danish culture.

BACKGROUND: 'Dignity Therapy' (DT) is a brief, flexible intervention, which allows patients to complete an interview and create a document regarding their life, identity and what they want to leave in writing for their loved ones. DT is based on the DT Question Protocol. Developed and tested in English speaking settings, DT has proven to be a feasible and effective way to enhance patient dignity, while diminishing suffering and depression. The aim of this study was to test the acceptability and feasibility of the DT Question Protocol among Danish health professionals and cancer patients, and to obtain preliminary estimates of patient uptake for DT. These results will be used to inform a larger evaluation study. METHOD: Ten professionals were interviewed about their perception of DT and the Question Protocol. It was then tested with 20 patients at two palliative care sites and one gynecologic oncology department. Data was analyzed using content analysis techniques to evaluate the protocol for relevance, acceptability and comprehension. The interest and relevance of the intervention was also determined by examining the preliminary participation rate. RESULTS: Overall, DT was perceived to be comprehensible and relevant. Professionals highlighted six concerns that might warrant modification. These issues were examined using patient data. Some of their concerns overlapped with those raised by the professionals (e.g. 'unacceptable self-praise' and 'interference with the lives of others'). Tailoring DT to Danish culture required easily accommodated adjustments to the procedures and the DT Question Protocol. Some concerns expressed by health professionals may have reflected protectiveness toward the patients. While the intervention was relevant and manageable for patients admitted to palliative care, DT was less easily implemented at the gynecologic oncology department. CONCLUSION: Based on patients' and professionals' reaction to the DT Question Protocol, and based on the preliminary proportion of participants accepting DT, the DT question protocol - with minor adaptations - appears to be a manageable, acceptable and relevant intervention for Danish patients admitted to palliative care.

A review of potential factors relevant to coping in patients with advanced cancer.

AIMS: The aim was to identify characteristics that are considered to describe coping in patients with advanced cancer, as seen from a patient perspective. Based on the identified characteristics, the second aim was to identify potential factors that are relevant to coping in patients with advanced cancer. BACKGROUND: Patients with advanced or incurable cancer often express a need for professional help to cope with their complex situation. Furthermore, the support of health care professionals may often be dominated by a focus on symptom treatment and its effectiveness and less on the kind of needs that the patients consider most important. DESIGN: Systematic review. METHODS: Based on guidelines from the Centre for Review and Dissemination, York University, a systematic literature search identified 30 articles. Using Lazarus and Folkman's theory of coping as the theoretical framework, relevant data were extracted, analysed and synthesised. RESULTS: Based on the identification of 160 characteristics, seven potential factors emerged: 'Creating meaning', 'Support systems', 'Minimising the impact of cancer', 'Bodily and mental functioning', 'Control' and 'Uncertainty' and 'Emotions'. CONCLUSIONS: The results indicate that emotion-focused coping may be used more often by patients with advanced cancer than problem-focused coping. However, it cannot be ruled out that this finding relates to a nomenclature of coping function that is too limited. Furthermore, the results indicate that the seven potential factors may be related to both the appraisal process and the coping process. RELEVANCE TO CLINICAL PRACTICE: By choosing, as the theoretical framework, Lazarus and Folkman's theory about the connection between the stress, appraisal and coping processes, it has been possible to highlight how the identified factors may be used as the underlying basis of clinical questions focusing on the patients' appraisal of and coping with the concrete situation.

The motivation to volunteer as a peer support provider to newly diagnosed patients with acute leukemia - A qualitative interview study.

PURPOSE: To identify and describe the motivation to volunteer as a peer support provider (PSP) to newly diagnosed patients with acute leukemia (AL). METHOD: A phenomenological individual interview study based on one open-ended question. The participants (n = 12) had previously been treated for AL and were recruited from an ongoing peer support feasibility study. The interviews were carried out prior to participation as a peer support provider. A phenomenological methodology developed by Amadeo Giorgi was used for the analysis of the data. RESULTS: The essence of the phenomenon can be characterized by the following characteristics: "A wish to move on with life", "A wish to instill hope to those in a hopeless situation" and "Expecting own course of disease to become meaningful". The motivation reflected the experience that when helping others they also helped themselves. CONCLUSION: Former patients treated for AL are motivated to undertake their new role as PSP because their own course of disease becomes meaningful, helps facilitate a better post-cancer recovery through greater self-confidence while instilling hope to newly diagnosed patients with AL. CLINICAL IMPLICATIONS: It is important to identify readiness before recruiting former patients for the PSP role and to develop peer-to-peer programs to sustain motivation. Future studies should examine how motivation changes over time while practicing as a PSP to newly diagnosed patient with AL.