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. @ERSpublications IPF patients and caregivers need information, but full disclosure should be gradual and palliation initiated early

Background: Dysphagia occurs commonly in the intensive care unit (ICU). Despite the clinical relevance, there is little worldwide research on prevention, assessment, evaluation, and/or treatment of dysphagia for ICU patients. We aimed to gain insight into this international knowledge gap. Methods:We conducted a multi-center, international online cross-sectional survey of adult ICUs. Local survey distribution champions were recruited through professional and personal networks. The survey was administered from November 2017 to June 2019 with three email and a final telephone reminder. Results:Responses were received from 746 ICUs (26 countries). In patients intubated >48 hours, 17% expected a >50% chance that dysphagia would develop. This proportion increased to 43% in patients intubated >7 days, and to 52% in tracheotomized patients. Speech-language pathologist (SLP) consultation was available in 66% of ICUs, only 4% reported a dedicated SLP.Although 66% considered a routine post-extubation dysphagia protocol important, most (67%) did not have a protocol. Few ICUs routinely assessed for dysphagia after 48 hours intubation (30%) or tracheostomy (41%). A large proportion (46%) used water swallow screening tests to determine aspiration, few (8%) used instrumental assessments (i.e., flexible endoscopic evaluation of swallowing). Swallowing exercises were used for dysphagia management by 30% of ICUs.Conclusions: There seems to be limited awareness among ICU practioners that patients are at risk of dysphagia, particularly as ventilation persists, protocols, routine assessment and instrumental assessments are generally not used. We recommend the development of a research agenda to increase the quality of evidence and ameliorate the implementation of evidence-based dysphagia protocols by dedicated SLPs.

Diabetes distress (DD) disproportionately affects vulnerable people with type 2 diabetes mellitus and interventions targeting this population are therefore relevant. A systematic review and meta-analysis was performed to assess the evidence for an effect of psychosocial interventions for reducing DD, and, secondly HbA1c, depression, and health-related quality of life in vulnerable people with type 2 diabetes mellitus. Vulnerability encompasses poor glycemic control (HbA1c >7.5%) and at least one additional risk factor for poor diabetes outcomes such as low educational level, comorbidity, and risky lifestyle behavior. The interventions should be theoretically founded and include cognition- or emotion-focused elements. We systematically searched four databases for articles published between January 1995 and March 2018. Eighteen studies testing a variety of psychosocial interventions in 4,066 patients were included. We adhered to the Cochrane methodology and PRISMA guidelines. Review Manager 5.3 was used for data extraction and risk of bias assessment, and Grades of Recommendation, Assessment, Development and Evaluation for assessing the quality of the evidence. Data were pooled using the fixed or random effects method as appropriate. We investigated effects of individual vs group, intensive vs brief interventions, and interventions with and without motivational interviewing in subgroup analyses. To assess the robustness of effect estimates, sensitivity analyses excluding studies with high risk of bias and attrition >20% were conducted. We found low to moderate quality evidence for a significant small effect of psychosocial interventions on DD, and very low to moderate quality evidence for no effect on HbA1c, both outcomes assessed at 3, 6, 12, and 24 months follow-up. The effect on depression was small, while there was no effect on health-related quality of life. Exploratory subgroup analyses suggested that interventions using motivational interviewing and individual interventions were associated with incremental effects on DD. Likewise, intensive interventions were associated with significant reductions in both DD and HbA1c.

The ever-changing bulge posed a threat to patients' control of the ostomy and required specific care from the stoma therapist. Needs-based access to counselling, advice and supplementary materials is important.

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BackgroundDespite smoking and risky alcohol drinking being modifiable risk factors for cancer as well as postoperative complications, perioperative cessation counselling is often ignored. Little is known about how cancer patients experience smoking and alcohol interventions in relation to surgery. Therefore the aim of this study was to explore how bladder cancer patients experience a perioperative smoking and alcohol cessation intervention in relation to radical cystectomy.MethodsA qualitative study was conducted in two urology out-patient clinics. We conducted semi-structured in-depth interviews with 11 purposively sampled persons who had received the smoking and alcohol cessation intervention. The analysis followed the steps contained in the thematic network analysis.ResultsTwo global themes emerged: “smoking and alcohol cessation was experienced as an integral part of bladder cancer surgery” and “returning to everyday life was a barrier for continued smoking cessation/alcohol reduction”. Participants described that during hospitalization their focus shifted to the operation and they did not experience craving to smoke or drink alcohol. Concurrent with improved well-being or experiencing stressful situations, the risk of relapse increased when returning to everyday life.ConclusionsThe smoking and alcohol cessation intervention was well received by the participants. Cancer surgery served as a kind of refuge and was a useful cue for motivating patients to quit smoking and to reconsider the consequences of risky drinking. These results adds to the sparse evidence of what supports smoking and alcohol cessation in relation to bladder cancer patients undergoing major surgery and point to the need to educate healthcare professionals in offering smoking and alcohol cessation interventions in hospitals. The study also provides knowledge about the intervention in the STOP-OP study and will help guide the design of future smoking and alcohol cessation studies aimed at cancer patients undergoing surgery.Electronic supplementary materialThe online version of this article (10.1186/s12885-017-3792-5) contains supplementary material, which is available to authorized users.

Most ICUs in Denmark offered bereavement follow-up services, but these varied in their approach, were not evidence-based, and lacked formal evaluation. More systematic quality improvement of bereavement practices is required.

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