UNASSIGNED: To study the effect of informing patients with video before cardiac surgery on intensive care experience.
UNASSIGNED: This randomized controlled trial was conducted between December 2021 and December 2022 in the cardiovascular surgery clinic of a public hospital with the participation of 90 patients (45 patients in experimental group - 45 patients in control group) who were scheduled to undergo cardiac surgery. Patient Information Form and Intensive Care Experiences Scale were used for study data. Patients in experimental group were informed with video about the intensive care before cardiac surgery.
UNASSIGNED: It was found that the total score on ICES of the experimental group (74.5±3.9) was statistically and significantly higher than that of the control group (63.9±6.4) (p<0.001). The sub-dimension of awareness of surroundings (20.8±1.7), the frightening experiences (18.6±1.0), and the recall of experience (18.5±1.5) and satisfaction with care (16.7±1.4) were found to be statistically significantly higher in the experimental group, than in the control group sub-dimension scores (p<0.001).
UNASSIGNED: It was found that informing patients with video about the intensive care setting and process before cardiac surgery had a positive effect on the intensive care experience. Note: The study was produced from a master\'s thesis and was not presented. All participants gave informed consent for the study, and that their anonymity was preserved.Trial Registration NO.: NCT05255887.

UNASSIGNED: The participation of patients in clinical trials is crucial for the development of healthcare. There are several challenges in the recruitment of trial participants with acute medical conditions. The registry-based randomized DAPA-MI clinical trial recruited patients during hospitalization for myocardial infarction and provided study drugs in bottles with smart caps that used wireless technology to transmit monitoring data. This interview study aimed to investigate patients\' experience of participation in a clinical trial and their attitude to the new bottle cap technology.
UNASSIGNED: A subset of patients participating in the DAPA-MI trial were recruited from four hospitals in Sweden. Semi-structured interviews were conducted and analysed using manifest content analysis.
UNASSIGNED: Video interviews were performed including 21 patients (four women and 17 men). The median age was 59 years (range 44-80). Four categories of patients\' experiences were identified. A willingness to contribute consisted of patients\' positive attitudes to participation and to be a part of development and research. The perception of information emphasized the value of the oral information as well as the importance of time for reflection. Be in a vulnerable condition highlighted the impaired ability to perceive and remember in the acute medical condition. Adaptation to a new technology described the overall positive experiences of the smart bottle cap to evaluate adherence.
UNASSIGNED: Patients\' experiences of trial participation were in general positive but some challenges in the acute setting of a myocardial infarction were revealed. The smart bottle cap was well accepted, despite some handling difficulties.

OBJECTIVE: We sought to explore the lived experience of people with Debilitating Symptom Complexes Attributed to Ticks (DSCATT) to inform the development of a potential treatment intervention.
METHODS: We conducted one-to-one in-depth, semi-structured interviews with 13 people living in Australia affected by DSCATT. Interviews were transcribed and analysed using thematic analysis.
RESULTS: Although participants attributed the origin of their illness to tick bites, not all were adamant they had Lyme disease. Negative experiences in conventional healthcare were marked and were reported to exacerbate the impact of the illness and affect mental health. Further, these negative experiences propelled participants to seek unapproved treatments (by Australian standards). The desire for the illness to be acknowledged and causative agents identified was pronounced among the participant group.
CONCLUSIONS: Individuals with DSCATT experience significant challenges amid a contentious healthcare landscape surrounding chronic symptoms attributed to ticks in Australia. Our findings suggest the need for empathetic, supportive and patient-centred treatments for this cohort.
CONCLUSIONS: DSCATT results in a considerable burden across multiple domains for those affected. Negative experiences with healthcare exacerbate the suffering of people with DSCATT in Australia. New approaches that acknowledge the illness experience of people with DSCATT, alongside evidence-based treatments that encompass biopsychosocial models of care, are needed to tackle this debilitating condition.

BACKGROUND: Diuresis renography is a nuclear medicine examination that can distinguish between obstructive and non-obstructive uropathy. Renography has been investigated before, but not from a patient perspective. The aim of this study was to gain knowledge and understanding of patient experiences with the diuresis renography process.
METHODS: The study had a qualitative descriptive design; data was collected through semi-structured interviews with 17 adult patients that had recently undergone diuresis renography. The transcripts were analysed using inductive qualitative content analysis to identify their manifest and latent content.
RESULTS: One main theme was identified: \'Not smooth all the way through, but still in good hands\'. The participants understood the necessity of the performed renography and endured the examination despite its worrying elements. They were bothered by diuretic effects, worried about radioactivity and felt isolated during the imaging. The technologists\' caring and informative approach eased their experience. The main theme was identified from three subthemes: \'I experienced inconvenience\', \'I was worried\' and \'I felt safe\'.
CONCLUSIONS: The participants experienced worry throughout the renography process but were still satisfied with the examination, mostly because of the technologists being involved. Communication and interaction between patient and technologist are important for creating a good experience. Improved knowledge of patient experiences during renographies could be used to develop patient information and increase technologists\' awareness of factors patients may experience as troubling.
CONCLUSIONS: This study describes issues that contribute to both negative and positive experiences. Improved professional awareness and knowledge about these issues can contribute to the development of patient information and professional encounters, and may improve patients\' compliance and overall experience.

OBJECTIVE: Desmoid tumors are a rare and complex disease characterized by a great diversity in its forms, localizations, and prognosis. Both the disease and the treatment can have a significant impact on quality of life in patients. Given the complexity of the disease and its rarity, the literature on patients\' experience with the disease scarce. The purpose of this study is to investigate illness representations and subjective experience in participants affected with desmoid tumors.
METHODS: Telephonic semi-directive interviews were used in French patients over 18 years, diagnosed with desmoid tumor. Data were analyzed through a general inductive method to identify emergent general themes in participants\' discourse.
RESULTS: Participants (8 women, 7 men) in this study were aged between 27 and 71. The analysis revealed eight major themes relative to representations of illness and treatment, live with the illness, the impact of illness on relationships with others, the illness and medical pathways, and the identity changes caused by the illness. The two most salient themes were illness and treatment representations and life with the illness. Those themes were chosen for this study.
CONCLUSIONS: The results provide new insights on representation of and experience with desmoid tumors in patients. It brings arguments for the necessity of development wider systematic study to explore those variables in a larger sample during all the illness pathway. Indeed, this population meets particular issues appealing for the development of a specific psychosocial support.

WHAT IS KNOWN ON THE SUBJECT?: Continuous observation is often used in mental health wards to support the safety of service users, where they will be constantly watched by a member of staff. Evidence suggests that continuous observations may be unhelpful and restrictive, but not enough is known about the practice or the best ways to improve it. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: This evaluation integrates the perspectives of service users, informal carers and staff to explore current continuous observation experiences and inform future improvements. While previous research highlights the importance of therapeutic engagement, this study additionally emphasizes how the observation procedure could be adapted to individual needs. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Continuous observations could be more beneficial if they are therapeutic, proportional to the level of risk and co-developed with the service user, informal carer and staff. Further training about communication could support staff engagement and the observation process could be formalized to ensure regular collaborative reviews.
UNASSIGNED: INTRODUCTION: Continuous observation is a frequently used tool to manage high levels of risk on psychiatric wards. However, there is little previous research on its use in practice.
OBJECTIVE: This qualitative service evaluation aims to explore the continuous observation experiences of service users, informal carers and staff in a local NHS Mental Health Trust, informing suggested future improvements to current practice.
METHODS: Five service users, three informal carers and seven healthcare staff completed semi-structured interviews, which were thematically analysed to create four themes.
RESULTS: Positive interaction and engagement in activities were critical for a therapeutic approach to observations, supporting service users and staff to minimize the unproductive behaviours that can arise. Difficulties balancing safety with privacy could suggest the importance of proportionate and tailored observation procedures for each service user. Ensuring the voices of service users and informal carers remain central to decisions regarding care could further improve the observation experience.
CONCLUSIONS: This study highlights therapeutic, proportionate and co-produced observations as key characteristics to improve practice. Further training and formalization of the observation process could foster cultural changes towards more long-term approaches to risk management.

The study aimed to explore patients\' experiences and perceptions throughout the various stages of endoscopic procedures and examine the association between patient-centered communication and the patient\'s experience. A total of 191 patients responded to pre- and post-procedure surveys that inquired about fear and pain, patients\' satisfaction regarding the information provided to them, perceptions and experience. Pain was associated with post-procedure fear (r = 0.63, p < 0.01) and negatively associated with reported patient experience at the end of the visit (r = -0.17, p < 0.01). Significant positive associations were found between patient experience and satisfaction from the information provided before (r = 0.47, p < 0.01) and the information provided after the procedure (r = 0.51, p < 0.001). A predictive model found that perceptions toward the physicians, satisfaction from information provided before discharge, and feelings of trust are predictors of the patient experience (F = 44.9, R2 = 0.61, p < 0.001). Patients\' satisfaction with information provided before and after the procedure can positively affect the patients\' experience, leading to a decrease in fear and anxiety and increasing compliance with medical recommendations. Strategies for PCC with endoscopic patients should be developed and designed in a participatory manner, taking into account the various aspects associated with the patient experience.

OBJECTIVE: Continuous positive airway pressure (CPAP) is considered effective treatment for moderate-severe obstructive sleep apnea (OSA). Clinicians measure compliance to treatment by the number of hours CPAP is used per 24 hours. There have been very few studies examining the patients\' lived experience of CPAP and the barriers to use. This study examined the patients\' experience of OSA, CPAP use and treatment during COVID-19.
METHODS: This CPAP patient experience qualitative study was part of a larger project. The overarching study was a three-armed nonblinded randomized controlled trial of patients on CPAP for treatment of OSA using standard care or one of two telemedicine interventions. Patients who had completed the RCT study were invited to be interviewed via telephone, about their OSA diagnosis, CPAP experiences, their experience of using telemedicine and the impact of SARS-CoV-2 (COVID-19).
RESULTS: Fifteen patients (five from each arm of the trial) took part in a semi-structured interview. Thematic analysis identified three themes: day to day living, standard hospital care versus telemedicine management and living though COVID-19 with CPAP.
CONCLUSIONS: All participants described significant symptoms caused by their OSA before diagnosis. While CPAP treatment was often described as challenging, patients discussed the improvement in their symptoms with treatment. There were differing opinions on virtual appointments, however the consensus was the use of telemedicine to support CPAP treatment was well received. COVID-19 appeared to have little effect on the patient experience.

UNASSIGNED: Cultural humility is a lifelong commitment to self-evaluation, redressing power imbalances in patient-physician relationships and developing mutually trusting beneficial partnerships.
UNASSIGNED: The objective of this study was to determine the feasibility and efficacy of cultural humility training.
UNASSIGNED: From July 2020-March 2021, 90-minute educational workshops attended by 133 medical students, resident physicians and medical education faculty included 1) pre- and post- intervention surveys; 2) interactive presentation on equity and cultural humility principles; 3) participants explored sociocultural identities and power; and 4) reflective group discussions.
UNASSIGNED: There were significant increases from pre to post intervention assessments for perception scores (3.89 [SEM= 0.04] versus 4.22 [0.08], p<0.001) and knowledge scores (0.52 [0.02] versus 0.67 [0.02], p<0.001). Commonest identities participants recognized as changing over time were personality = 40%, appearance = 36%, and age =35%. Commonest identities experienced as oppressed/subjugated were race/ethnicity = 54%, gender = 40% and religion = 28%; whilst commonest identities experienced as privileged were gender= 49%, race/ethnicity = 42% and appearance= 25%. Male participants assigned mean power score of 73% to gender identity compared to mean power score of -8% by female participants (P<0.001). Non-Hispanic Whites had mean power score for race identity of 62% compared to 13% for non-white participants (p<0.001). English as a second language was only acknowledged as an oppressed/subjugated identity by those born outside the United States (p<0.001).
UNASSIGNED: An interactive educational workshop can increase participants\' knowledge and perceptions regarding cultural humility. Participants can self-reflect to recognize sociocultural identities that are oppressed/subjugated or privileged.

Oral and dental manifestations of scleroderma are extremely common, yet they are often overlooked within rheumatology and poorly understood within dentistry. Previous research has indicated the need to understand the oral and dental experiences of people living with scleroderma and those involved in their care. This scoping review aims, for the first time, to comprehensively map what is known regarding the identification and management of oral and dental manifestations of scleroderma, how these are experienced by people living with scleroderma, and to explore key characteristics of barriers and enablers to good oral and dental care in scleroderma. A scoping review was conducted using six databases (Embase, PubMed, PsychINFO, ASSIA, Scopus and SSCI), according to the Preferred Reporting Items for Systematic Reviews and Meta-analyses - extension for Scoping Review. Grey literature was also included. Studies were eligible for inclusion if the full text and abstract were available in English, published between 2002 and 2022, and focused on the concept of oral and dental care in adults with scleroderma, either relating to identification and management, enablers and barriers to best practice, or patient experiences and well-being. Qualitative research which seeks to understand patients\' lived experiences was a notable gap in the literature. Similarly, there was a significant lack of focus on the oral and dental manifestations of scleroderma in rheumatology. Three key features were identified which would facilitate best practice in research and clinical contexts: the necessity of multidisciplinary care; the necessity of centralising patient experience; and the necessity of mitigating barriers to dental care. We conclude that increased awareness of scleroderma within dentistry and streamlining referral procedures between the disciplines of dentistry and rheumatology, to enable the early identification and management of scleroderma, are crucial.