Family Members' Engagement in Symptom Communication, Assessment, and Management in the Intensive Care Unit: A Qualitative Study.

BACKGROUND: Opportunities for communication and participation in decision making are limited for critically ill patients, but family members serving as surrogates enable empowerment of these patients. OBJECTIVE: The aim of this study was to explore family members' engagement in symptom communication in the intensive care unit. METHODS: A qualitative descriptive design using fieldwork methodology with triangulation of participant observation and individual interviews was conducted. Nine mechanically ventilated patients were observed in interaction with family members and clinicians in the intensive care unit. Six of the observed patients, 6 family members, and 9 clinicians were interviewed after participant observation. Field notes and transcripts were analyzed using Braun and Clarke's method of thematic analysis. RESULTS: Family members engaged actively in symptom communication, assessment, and management, and there were barriers and facilitators to family engagement. Three main themes and 9 subthemes describing family engagement emerged: (1) intermediary role (recognize and report symptoms, provide patient information, and assist in communication), (2) independent role (provide familiarity, manage symptoms, and promote patient communication), and (3) conditions for family engagement (intensive care unit environment, relationship with the patient, and patient preferences). DISCUSSION: Family members have unique knowledge of the patient that differs from and complement the competence of the staff, and might contribute to improved symptom communication. Future research should examine how family members can contribute to symptom communication, assessment, and management.

STRONG for Surgery & Strong for Life - against all odds: intensive prehabilitation including smoking, nutrition, alcohol and physical activity for risk reduction in cancer surgery - a protocol for an RCT with nested interview study (STRONG-Cancer).

BACKGROUND: There is a large unused potential for risk reduction in the preoperative period via effective lifestyle intervention targeting co-existing risky lifestyles: Smoking, malNutrition, obesity, risky Alcohol intake and insufficient Physical activity (SNAP). This trial compares the efficacy of the integrated STRONG programme with standard care on preoperative risk reduction and secondly on SNAP factor improvement and frailty, postoperative complications and quality of life. A nested interview study explores the patient preferences and the multi-perspective view of patients, relatives and health professionals. METHODS: In total, 42 surgical patients with ≥1 SNAP factor are allocated to individually tailored STRONG programme or usual care during adjuvant chemotherapy prior to radical bladder cancer surgery. The STRONG programme has ≥6 weekly sessions with patient education, motivational and pharmaceutical support. It is based on intensive smoking and alcohol cessation interventions reporting perioperative quit rates > 50%. Surgical risk reduction is measured as ≥1 step for 1 or more risky lifestyles on the ASA-score, secondly as having no risky SNAP factors, and as any SNAP improvement. The outcomes are validated by measurements and biomarkers. Postoperative complications are categorised according to the Clavien-Dindo classification. Health-related quality of life is measured by EQ-5D. The patients are followed up after 6 weeks at surgery and 6 weeks and 6 months postoperatively. A representative sample of the participants, their relatives and the clinical staff are interviewed until data saturation. Transcription, triangulated analyses and data management are conducted using NVivo computer software. DISCUSSION: The surgical agenda is characterised by fixed dates for surgery focusing on clear risk reduction within a short time. This requires a clinical useful lifestyle intervention programme with a high effect and coverage as well as containing all SNAP factors and tailored to individual needs. The STRONG programme seems to meet these requirements. After development in multi-professional collaboration, STRONG is delivered by a specially trained nurse as part of the surgical patient journey. Overall, this study will bring important new knowledge about risk reduction in a frail patient group undergoing major cancer surgery. TRIAL REGISTRATION: Registration at www.clintrials.gov ( NCT04088968 ) The manuscript form from https://trialsjournal.biomedcentral.com/bmc/journal and the SPIRIT guidelines are followed.

Design of Clinical Trials Evaluating Sedation in Critically Ill Adults Undergoing Mechanical Ventilation: Recommendations From Sedation Consortium on Endpoints and Procedures for Treatment, Education, and Research (SCEPTER) Recommendation III.

OBJECTIVES: Clinical trials evaluating the safety and effectiveness of sedative medication use in critically ill adults undergoing mechanical ventilation differ considerably in their methodological approach. This heterogeneity impedes the ability to compare results across studies. The Sedation Consortium on Endpoints and Procedures for Treatment, Education, and Research Recommendations convened a meeting of multidisciplinary experts to develop recommendations for key methodologic elements of sedation trials in the ICU to help guide academic and industry clinical investigators. DESIGN: A 2-day in-person meeting was held in Washington, DC, on March 28-29, 2019, followed by a three-round, online modified Delphi consensus process. PARTICIPANTS: Thirty-six participants from academia, industry, and the Food and Drug Administration with expertise in relevant content areas, including two former ICU patients attended the in-person meeting, and the majority completed an online follow-up survey and participated in the modified Delphi process. MEASUREMENTS AND MAIN RESULTS: The final recommendations were iteratively refined based on the survey results, participants' reactions to those results, summaries written by panel moderators, and a review of the meeting transcripts made from audio recordings. Fifteen recommendations were developed for study design and conduct, subject enrollment, outcomes, and measurement instruments. Consensus recommendations included obtaining input from ICU survivors and/or their families, ensuring adequate training for personnel using validated instruments for assessments of sedation, pain, and delirium in the ICU environment, and the need for methodological standardization. CONCLUSIONS: These recommendations are intended to assist researchers in the design, conduct, selection of endpoints, and reporting of clinical trials involving sedative medications and/or sedation protocols for adult ICU patients who require mechanical ventilation. These recommendations should be viewed as a starting point to improve clinical trials and help reduce methodological heterogeneity in future clinical trials.

Disease self-management in patients with moderate COPD: a thematic analysis.

BACKGROUND: Treatment of patients with moderate chronic obstructive pulmonary disease (COPD) is challenged by the low priority of the disease by patients and general practitioners (GPs) affecting the extent of self-management. The aim of this study was to explore (i) attitudes to COPD self-management in patients with moderate COPD, (ii) perceptions of GP commitment to pulmonary rehabilitation in patients with moderate COPD, and (iii) COPD knowledge in patients with moderate COPD. METHODS: The study had a qualitative design using semi-structured interviews to explore the views of 14 patients diagnosed with moderate COPD. We applied strategic sampling to obtain maximum variation and conducted a thematic analysis of the data. RESULTS: Our main findings were that the degree of COPD self-management was linked to the resources of the informants. Further, the patients experienced that GPs only availed themselves of selected parts of the recommendations for COPD treatment by focusing on medical treatment and smoking cessation rather than physical activity and diet. Many patients lacked knowledge regarding the tolerated level of physical activity and therefore avoided activity increasing their heart rate. Finally, many patients were reluctant to accept the diagnosis because the disease is known to be self-inflicted. CONCLUSION: Our study suggests that patients with moderate COPD need more information, especially regarding the positive effects of physical activity. GPs might need to devote more time to the three main elements of COPD treatment, smoking cessation, medical treatment, and physical activity, to promote self-management and a healthier lifestyle in patients with COPD.

Danish general practitioners' management of patients with COPD: a nationwide survey.

BACKGROUND: In Denmark, general practitioners (GPs) have the main responsibility for chronic obstructive pulmonary disease (COPD) management. Internationally, COPD appears to be significantly under-treated, which could be explained by 'therapeutic nihilism' or lack of knowledge. AIM: To investigate: (1) To what extent COPD management provided by GPs includes the core elements of pharmacological treatment, smoking cessation and physical activity, and (2) To what extent GPs need educational support and consulting with a specialist in pulmonary medicine. DESIGN: A national cross-sectional web-based survey conducted in April-June 2019. The survey included items on COPD management and educational support needs. SETTING: Danish general practice. SUBJECTS: A population of approximately 3400 GPs (all GPs in Denmark). RESULTS: We received response from 470 GPs (14% response rate). Overall, the respondents reported that they offered COPD management including all relevant treatment elements. Smoking cessation was supported in 58% and physical activity was supported in 23% of the respondents. Future consultations on smoking cessation were planned by 35% and physical activity by 15% respondents. GPs responded to 'needing educational support in COPD management' to a 'high degree' in 8% and to 'some degree' in 43%. CONCLUSION: The survey suggested that COPD maintenance support provided by GPs seemed to be inadequate regarding smoking cessation and physical activity. Moreover, some GPs expressed a need for educational support in COPD management. More research is needed to understand the potential barriers to evidence-based delivery of COPD-management. Key points In Denmark, general practitioners (GPs) have the main responsibility for the management of chronic obstructive pulmonary disease (COPD). The present study shows that non-pharmacological interventions such as supporting smoking cessation and particularly promoting physical activity received less attention than pharmacological treatment. The study suggests a need for educational support of the GPs in COPD management.

Delirium prevalence and prevention in patients with acute brain injury: A prospective before-and-after intervention study.

OBJECTIVES: Knowledge regarding delirium prevention in patients with acute brain injury remains limited. We tested the hypothesis that an intervention bundle which targeted sedation, sleep, pain, and mobilisation would reduce delirium in patients with acute brain injury. DESIGN: A prospective before-after intervention study: a five-month phase of standard care was followed by a six-month intervention phase. SETTING: The neuro-intensive care unit, University Hospital of Copenhagen, Denmark. MAIN OUTCOME MEASURES: The Intensive Care Delirium Screening Checklist was used to detect delirium. Primary outcome was delirium duration; secondary outcomes were delirium prevalence, ICU length of stay and one year mortality. RESULTS: Forty-four patients were included during the standard care phase, and 50 during the intervention phase. Delirium was present in 90% of patients in the standard care group and 88% in the intervention group (p = 1.0), and time with delirium was 4 days vs 3.5 days (p = 0.26), respectively. Also, ICU length of stay (13 vs. 10.5 days (p = 0.4)) and the one year mortality (21% vs 12% (p = 0.38))) were similar between groups. CONCLUSION: We found a high prevalence of delirium in patients with acute brain injury. The intervention bundle did not significantly reduce prevalence or duration of delirium, ICU length of stay or one year mortality.

The challenge of non-adherence to early rehabilitation after coronary artery bypass surgery: Secondary results from the SheppHeartCABG trial.

BACKGROUND: Attending and maintaining a cardiac rehabilitation programme is a challenge. AIMS: The purpose of this study was to explore associations between non-adherence to early coronary artery bypass graft rehabilitation and sociodemographic and clinical baseline data. METHODS: Coronary artery bypass graft patients were randomised 1:1 to either four weeks of comprehensive early rehabilitation or usual care. Outcomes were assessed at three time-points points: baseline, discharge and four weeks post-coronary artery bypass graft. Differences in sociodemographic and clinical baseline data in adherent versus non-adherent patients were tested using the Pearson χ2 test for categorical variables. To test associations between non-adherence to exercise training and sociodemographic and clinical baseline data, multivariate logistic regression was used to estimate the odds ratio for in-hospital training and post-discharge training adjusted for age, sex and left ventricular ejection fraction. RESULTS: Non-adherence to in-hospital versus post-discharge exercise training was 31% (n=48) versus 53% (n=81). Female non-adherence was 20% versus 70%. Non-adherence to in-hospital versus post-discharge mindfulness was 87% versus 70%. Male non-adherence to mindfulness was 85% versus 70%. Non-adherence to psycho-educational consultations was 3%, most of whom were men. Patients with university level education were more adherent to in-hospital exercise training than patients with lower educational level (odds ratio=3.14 (95% confidence interval; 1.16-8.51), p=0.02). Diabetic patients were more non-adherent to exercise training after discharge (3.74 (1.54-9.08), p=0.004) as were overweight patients (0.37 (0.17-0.80), p=0.01). CONCLUSIONS: This study demonstrated wide acceptance of psycho-educational consultations in post-coronary artery bypass graft patients. Adherence to physical rehabilitation was low especially after discharge from hospital and the opportunity to attend a mindfulness programme was not used.

Spousal bereavement after fibrotic interstitial lung disease: A qualitative study.

INTRODUCTION: Fibrotic interstitial lung disease (f-ILD) comprises a group of diseases with lung scarring and reduced life expectancy. The short time from diagnosis to death affects the patients' bereaved spouses, who risk developing prolonged grief. In Denmark palliative care is most often offered to cancer patients. AIM: We aimed to investigate the experience of spouses of f-ILD patients during the final stages of illness and up to the first year after the patient's death to investigate if palliative care could ease the transition and prevent PGD. METHODS: Our study had a qualitative design triangulating in-depth interviews, field notes, participant diaries and the prolonged grief questionnaire PG-13. We included 20 spouses and applied thematic analysis. Initial coding was performed deductively according to the chronological stages of before, during and after the death of the patient. We subsequently coded inductively within the stages. RESULTS: During the final days the spouses experienced emotional ambivalence shifting between hope, acceptance and despair. Factors affecting the spouses during the final hours were the timing, location, and process of death. After the patient's death the spouses experienced feelings of grief and optimism as they moved toward a new life on their own. CONCLUSIONS: Some of the factors affecting the spouses and potentially causing prolonged grief might be alleviated by offering palliative/supportive care and advance care planning to f-ILD patients and their family.

Delirium assessment in neuro-critically ill patients: A validation study.

BACKGROUND: Delirium is underinvestigated in the neuro-critically ill, although the harmful effect of delirium is well established in patients in medical and surgical intensive care units (ICU).To detect delirium, a valid tool is needed. We hypothesized that delirium screening would be feasible in patients with acute brain injury and we aimed to validate and compare the Confusion Assessment Method for the ICU and the Intensive Care Delirium Screening Checklist against clinical International Classification of Diseases-10 criteria as reference. METHODS: Nurses assessed delirium using the Confusion Assessment Method for the ICU and Intensive Care Delirium Screening Checklist in adult patients with acute brain injury admitted to the Neurointensive care unit (Neuro-ICU), Copenhagen University Hospital, if their Richmond agitation-sedation scale score was -2 or above. As the reference, a team of psychiatrist assessed patients using the International Classification of Diseases-10 criteria. RESULTS: We enrolled 74 patients, of whom 25 (34%) were deemed unable to assess by the psychiatrists, leaving 49 (66%) for final analysis. Sensitivity and specificity for the Confusion Assessment Method for the ICU was 59% (95% CI: 41-75) and 56% (95% CI: 32-78), respectively, and 85% (95% CI: 70-94) and 75% (95% CI: 51-92), respectively, for the Intensive Care Delirium Screening Checklist. CONCLUSIONS: Our findings suggest that the Intensive Care Delirium Screening Checklist may be a valid tool and the Confusion Assessment Method for the ICU is less suitable for delirium detection for patients in the Neuro-ICU. In the neuro-critically ill, delirium screening is challenged by limited feasibility.

Early physical and psycho-educational rehabilitation in patients with coronary artery bypass grafting: A randomized controlled trial.

OBJECTIVES: Rehabilitation of patients following coronary artery bypass grafting (CABG) has been widely studied; however, research into early rehabilitation after CABG is sparse. The aim of this trial was to assess the impact of early rehabilitation, compared with usual care in patients following CABG. DESIGN: Randomized controlled trial. PATIENTS: A total of 326 patients treated with CABG. METHODS: Patients treated with CABG were randomized 1:1 to 4 weeks of comprehensive early rehabilitation or usual care. The primary outcome was the Six Minute Walk Test (6MWT). Secondary outcomes were mental health and physical activity (Medical Outcome Study Short Form; SF-12); anxiety and depression (Hospital Anxiety and Depression Scale; HADS); physical and emotional scores; sleep (Pittsburgh Sleep Quality Index; PSQI); pain (Örebro Musculoskeletal Screening Questionnaire; ÖMSQ) and muscle endurance (Sit-To-Stand test). RESULTS: Sixteen patients dropped out. No significant differences between groups in the primary outcome (6MWT) were found after 4 weeks (p = 0.27). For secondary outcomes the odds ratio of HADS-D ≥ 8 decreased in favour of the experimental intervention (p = 0.04). There was non-adherence to parts of the intervention. Per-protocol analysis showed differences between groups for the 6MWT (p = 0.02) and the Sit-To-Stand test (p = 0.046). CONCLUSION: In general, the intervention had no effect on the 6MWT, or secondary outcomes, except for depressive symptoms. However, in adherent participants, the intervention had a positive effect for the primary and several secondary outcomes.

Staff experiences with strategic implementation of clinical health promotion: A nested qualitative study in the WHO-HPH Recognition Process RCT.

OBJECTIVES: Health promotion is on the global agenda. The risks targeted include smoking, hazardous alcohol consumption, nutrition and insufficient physical activity. Implementation of clinical health promotion, however, remains a major challenge. While several processes, models and frameworks for strategic implementation exist, very few have been tested in randomized designs. Testing a strategic implementation process for clinical health promotion was only recently attempted via a randomized clinical trial on the World Health Organization Health Promotion Hospitals Recognition Process. The randomized clinical trial showed that the process improved central parts of implementation. To complement these findings, this nested qualitative study aimed to explore experiences and perceptions of staff and managers, who had completed the process, and generate hypotheses for improvements. METHODS: We interviewed a purposeful sample of 45 key informants from four countries, who worked at clinical departments and had undertaken the World Health Organization Health Promotion Hospitals implementation process. The informants included 14 managers, 14 medical doctors, 13 nurses and 4 other clinical staff. Interview transcripts were analyzed using qualitative content analysis and an inductive approach to coding and categorization supported by QSR NVivo. RESULTS: The informants' experiences and perceptions centered around four global themes concerning (1) awareness, cultural re-orientation and integration; (2) learnings; (3) normalization and legitimacy and (4) a more evidence-based, structured and systematic approach to clinical health promotion. Informants were positive toward the implementation process, although it was sometimes challenging. The suggested improvements to increase acceptability related to the patient survey, time consumption, translation, tailoring to local circumstances and in-advance training. CONCLUSIONS: Managers and staff were positive toward the World Health Organization Health Promotion Hospitals process, which was perceived to bring about positive changes and learnings. The findings also suggest that the implementation process may be improved by minor adjustments to process elements and design. It is our recommendation to use the process in clinical departments to further implementation of clinical health promotion.

Pain distress: the negative emotion associated with procedures in ICU patients.

PURPOSE: The intensity of procedural pain in intensive care unit (ICU) patients is well documented. However, little is known about procedural pain distress, the psychological response to pain. METHODS: Post hoc analysis of a multicenter, multinational study of procedural pain. Pain distress was measured before and during procedures (0-10 numeric rating scale). Factors that influenced procedural pain distress were identified by multivariable analyses using a hierarchical model with ICU and country as random effects. RESULTS: A total of 4812 procedures were recorded (3851 patients, 192 ICUs, 28 countries). Pain distress scores were highest for endotracheal suctioning (ETS) and tracheal suctioning, chest tube removal (CTR), and wound drain removal (median [IQRs] = 4 [1.6, 1.7]). Significant relative risks (RR) for a higher degree of pain distress included certain procedures: turning (RR = 1.18), ETS (RR = 1.45), tracheal suctioning (RR = 1.38), CTR (RR = 1.39), wound drain removal (RR = 1.56), and arterial line insertion (RR = 1.41); certain pain behaviors (RR = 1.19-1.28); pre-procedural pain intensity (RR = 1.15); and use of opioids (RR = 1.15-1.22). Patient-related variables that significantly increased the odds of patients having higher procedural pain distress than pain intensity were pre-procedural pain intensity (odds ratio [OR] = 1.05); pre-hospital anxiety (OR = 1.76); receiving pethidine/meperidine (OR = 4.11); or receiving haloperidol (OR = 1.77) prior to the procedure. CONCLUSIONS: Procedural pain has both sensory and emotional dimensions. We found that, although procedural pain intensity (the sensory dimension) and distress (the emotional dimension) may closely covary, there are certain factors than can preferentially influence each of the dimensions. Clinicians are encouraged to appreciate the multidimensionality of pain when they perform procedures and use this knowledge to minimize the patient's pain experience.

Experiences of family caregivers the first six months after patient diagnosis of necrotising soft tissue infection: A thematic analysis.

BACKGROUND: Necrotising soft tissue infection, or necrotising fasciitis, is a rapidly progressing disease requiring immediate diagnosis and treatment consisting of antimicrobial therapy, hyperbaric oxygen, debridement surgery and treatment in the intensive care unit. The harrowing illness trajectory affects the family caregivers potentially producing long-term psychological issues. OBJECTIVES: We aimed to explore the experiences and coping strategies of family caregivers during the first six months after patient diagnosis of necrotising soft tissue infection. METHODS: Our study had a prospective, explorative, qualitative design using semi-structured interviews and thematic analysis to understand necrotising soft tissue infection as an intrinsic and instrumental case. Family caregivers (n = 25) were recruited at three university hospitals in Denmark and Sweden. FINDINGS: We identified three chronological themes describing issues of importance to the family caregivers. In the intensive care unit: Coping with illness and intensive care; In the ward: Coping with injury and post-intensive care and At home: Coping with recovery and new home life. CONCLUSION: Challenges facing family caregivers of necrotising soft tissue infections survivors are still under-recognised. Healthcare professionals need to ensure that families and stakeholders throughout the patient trajectory have access to and co-create timely information and care plans to bridge the knowledge gap across care environments and to relieve family responsibility.

Nurses' and physicians' perceptions of Confusion Assessment Method for the intensive care unit for delirium detection: focus group study.

BACKGROUND: Delirium in the intensive care unit (ICU) has received more attention in the past decade. Early detection, prevention and treatment of delirium are important, and the most commonly used tool for delirium assessment is the Confusion Assessment Method for the ICU (CAM-ICU). AIM: The aim of this study was to identify nurses' and physicians' perceived professional barriers to using the CAM-ICU in Danish ICUs. METHODS: This study uses a qualitative explorative multicentre design using focus groups and a semi-structured interview guide. Five focus groups with nurses (n = 20) and four with physicians (n = 14) were conducted. Strategic sampling was used to include participants with varying CAM-ICU experience at units, with variable implementation of the tool. RESULTS: Using a hermeneutical approach, three main themes and nine sub-themes emerged. The main themes were (1) Professional role issues: CAM-ICU screening affected nursing care, clinical judgment and professional integrity; (2) Instrument reliability: nurses and physicians expressed concerns about CAM-ICU assessment in non-sedated patients, patients with multi-organ failure or patients influenced by residual sedatives/opioids; and (3) Clinical consequence: after CAM-ICU assessment, physicians lacked evidence-based treatment options, and nurses lacked physician acknowledgment and guidelines for disclosing CAM-ICU results to patients. CONCLUSION: In this study, ICU nurses and physicians raised a number of concerns regarding the use of the CAM-ICU for delirium detection. It might be necessary to revalidate the instrument as ICU care has changed in recent years, with lighter sedation and early mobilization of patients. We recommend that nurses and physicians receive more training in the use of the CAM-ICU to address some of the issues identified in our study. RELEVANCE TO CLINICAL PRACTICE: There is a need for ongoing training and clearer guidelines on how to proceed with the delirium screening of non-sedated patients.

SheppHeartCABG trial-comprehensive early rehabilitation after coronary artery bypass grafting: a protocol for a randomised clinical trial.

INTRODUCTION: Patients undergoing coronary artery bypass graft surgery often experience a range of symptoms. Studies indicate that non-pharmacological interventions such as exercise training and psychoeducation have a positive physiological and psychological effect in early outpatient rehabilitation. The SheppHeartCABG trial will investigate the effect of early comprehensive rehabilitation in early phase rehabilitation versus usual care. The aim of this paper is to present the protocol for the SheppHeartCABG trial. METHODS/ANALYSIS: SheppHeartCABG is an investigator-initiated randomised clinical superiority trial with blinded outcome assessment, employing 1:1 central randomisation to rehabilitation plus usual care versus usual care alone. On the basis of a sample size calculation, 326 patients undergoing coronary artery bypass grafting will be included from two clinical sites. All patients receive usual care and patients allocated to the experimental intervention follow 4 weeks rehabilitation consisting of an exercise programme, psycho-educative consultations and a compact mindfulness programme. The primary outcome is physical function measured by the 6-min walk test. The secondary outcomes are mental health and physical activity measured by the Medical Outcome Study Short Form (SF-12), anxiety and depression measured by the Hospital Anxiety and Depression Scale questionnaire, physical, emotional and global scores by the HeartQoL questionnaire, sleep measured by the Pittsburgh Sleep Quality Index, pain measured by the Örebro Musculoskeletal Screening Questionnaire and muscle endurance measured by the sit-to-stand test. A number of explorative analyses will also be conducted. ETHICS AND DISSEMINATION: SheppHeartCABG is approved by the regional ethics committee (no. H-4-2014-109) and the Danish Data Protection Agency (no. 30-1309) and is performed in accordance with good clinical practice and the Declaration of Helsinki in its latest form. Positive, neutral and negative results of the trial will be submitted to international peer-reviewed journals. Furthermore, results will be presented at national and international conferences relevant to the subject fields. TRIAL REGISTRATION NUMBER: NCT02290262; pre-results.

Feasibility and acceptability of active book clubs in cancer survivors - an explorative investigation.

BACKGROUND: While the increasing number of people surviving cancer is promising, the long-term health effects warrant broad, innovative interventions. We investigated the feasibility and acceptability of a 24-week intervention called 'Active Book Club' comprising audio book listening, pedometer walking and supervised book club meetings. MATERIAL AND METHODS: An exploratory and descriptive design was applied. Qualitative data included baseline and post-intervention focus group interviews as well as post-intervention individual interviews. The study also included data on retention, attendance, and adherence. Seventeen self-referred cancer survivors with various oncological and sociodemographic backgrounds were included. RESULTS: Eight (47%) participants completed the entire intervention. Their median attendance at the book club meetings was eight [interquartile range (IQR) 6-9] of nine possible, and they reached the walking step goal in a median of 11 (IQR 7-12) of the first 12 weeks, and seven (IQR 1-10) of the last 12 weeks. The qualitative analysis revealed five themes including: Motivation and expectations (i.e. reasons for enrollment), Attentive listening (i.e. experiences of the audio book format), Affected by the story (i.e. experiences of the content of the books), Group involvement (i.e. experiences of the book club meetings) and Walking regularly (i.e. experiences of the walking program). Overall, findings revealed that while audio books may bring new meaning to physical activity and serve as a relief from own concerns, certain stories may affect some individuals negatively. The substantial dropout rate, however, suggested that modification is necessary and that patient involvement in choice of literature may be critical to enhance acceptability. CONCLUSION: The 'Active Book Club' represents a novel psychosocial intervention potentially supporting physical activity adoption and mental health in cancer survivors. However, several issues related to feasibility and acceptability including choice of literature genre, format and supervision of book club meetings need to be considered before larger scale clinical trials are initiated.

The lived experience with idiopathic pulmonary fibrosis: a qualitative study.

The disease course in idiopathic pulmonary fibrosis (IPF) is variable, but patients experience a progressive decline in lung function and increased symptom burden leading to death. Little is known about the patients' experience and their needs during the disease course or about the burden on family caregivers. Both patients and family caregivers face an altered life as the disease progresses. The aim of our study was to increase knowledge of life with IPF for patients and family caregivers.This study had a qualitative descriptive design using in-depth dyadic interviews with IPF patients (n=25) and family caregivers (n=24). We used the five-step analysis from the framework method and analysed the data on three levels: the patient, the family caregivers and couple level.The following six themes emerged as the main results: information and disclosure, reactional dyssynchrony, perpetual vigilance, emotional ambivalence, gradual and tacit role shift, and adapted coping strategies.Our findings suggest that IPF patients need information at the time of diagnosis, but some issues should be paced as the disease progresses. A palliation plan was demanded by patients and their caregivers. Further efforts are required to provide palliative care to IPF patients starting at the time of diagnosis.

Early physical training and psycho-educational intervention for patients undergoing coronary artery bypass grafting. The SheppHeart randomized 2 × 2 factorial clinical pilot trial.

BACKGROUND: Patients undergoing coronary artery bypass graft surgery often experience a range of problems and symptoms such as immobility, pain and insufficient sleep. Results from trials investigating testing in-hospital physical exercise or psychological intervention have been promising. However, no randomized clinical trials have tested a comprehensive rehabilitation programme consisting of both physical exercise and psycho-education in the early rehabilitation phase. AIMS: The aims of the present SheppHeart pilot randomized clinical trial were to evaluate the feasibility of patient recruitment, patient acceptance of the intervention, safety and tolerability of the intervention. METHODS AND DESIGN: Sixty patients admitted for coronary artery bypass graft were randomized 1:1:1:1 to: 1) physical exercise plus usual care, or 2) psycho-educational intervention plus usual care, or 3) physical exercise and psycho-educational plus usual care, or 4) usual care alone during a four week period after surgery. RESULTS: The acceptability of trial participation was 67% during the three month recruitment period. In the physical exercise groups, patients complied with 59% of the total expected training sessions during hospitalization. Nine patients (30%) complied with >75% and nine patients (30%) complied with 50% of the planned exercise sessions. Eleven patients (42%) participated in ⩾75% of the four consultations and six patients (23%) participated in 50% of the psycho-educational programme. CONCLUSION: Comprehensive phase one rehabilitation combining physical exercise and psycho-education in coronary artery bypass graft patients shows reasonably high inclusion, feasibility and safety.

Acute pain management in burn patients: appraisal and thematic analysis of four clinical guidelines.

OBJECTIVE: Burn patients suffer excruciating pain due to their injuries and procedures related to surgery, wound care, and mobilization. Acute Stress Disorder, Post-Traumatic Stress Disorder, chronic pain and depression are highly prevalent among survivors of severe burns. Evidence-based pain management addresses and alleviates these complications. The aim of our study was to compare clinical guidelines for pain management in burn patients in selected European and non-European countries. We included pediatric guidelines due to the high rate of children in burn units. METHOD: The study had a comparative retrospective design using combined methodology of instrument appraisal and thematic analysis. Three investigators appraised guidelines from burn units in Denmark (DK), Sweden (SE), New Zealand (NZ), and USA using the AGREE Instrument (Appraisal of Guidelines for Research & Evaluation), version II, and identified core themes in the guidelines. RESULTS: The overall scores expressing quality in six domains of the AGREE instrument were variable at 22% (DK), 44% (SE), 100% (NZ), and 78% (USA). The guidelines from NZ and USA were highly recommended, the Swedish was recommended, whereas the Danish was not recommended. The identified core themes were: continuous pain, procedural pain, postoperative pain, pain assessment, anxiety, and non-pharmacological interventions. CONCLUSION: The study demonstrated variability in quality, transparency, and core content in clinical guidelines on pain management in burn patients. The most highly recommended guidelines provided clear and accurate recommendations for the nursing and medical staff on pain management in burn patients. We recommend the use of a validated appraisal tool such as the AGREE instrument to provide more consistent and evidence-based care to burn patients in the clinic, to unify guideline construction, and to enable interdepartmental comparison of treatment and outcomes.

Post-discharge symptoms following fast-track colonic cancer surgery: a phenomenological hermeneutic study.

OBJECTIVE: To obtain knowledge of patients' experiences of postoperative symptoms during the initial two weeks following fast-track colonic cancer surgery. METHOD: Semi-structured in-depth interviews with seven colonic cancer patients two weeks post hospital discharge. Analysis was performed using a phenomenological hermeneutical approach. RESULTS: During the first two weeks after discharge the patients experienced unfamiliar symptoms that affected their everyday lives. Despite distressing symptoms, they applied a "wait-and-see" strategy, and only reacted when symptoms became intolerable. The patients failed to report their unfamiliar symptoms during hospital nurse follow-up telephone call. While waiting for the final histology patients suffered loss of sleep and chaotic thinking, and experienced ambiguity of hoping for the best and expecting the worst. CONCLUSION: Although fast-track surgery programmes lead to shorter hospitalisation and improved physical performance, post-colonic surgery patients experience various symptoms after discharge. Healthcare professionals need to address symptoms that might have immediate and long-term consequences on patients' everyday life. Follow-up studies are encouraged to explore the patient perspective to identify the needs of individual patients after hospital discharge.