Patients´ experiences in a newly established clinic for late complications after colorectal and anal cancer treatment: a qualitative study

Purpose Treatment of late complications is not systematically provided in Denmark. We therefore established a clinic to treat patients´ late complications. With this study we wanted to explore patients´ experiences with treatment and care in the clinic, including their recommendations for the future organization and structure of the clinic. Methods We conducted a qualitative semi-structured interview study with patients who had attended our late complication clinic after treatment for colorectal or anal cancer. Results We included 14 patients. We found two main categories: 1: benefitting from the late complication clinic and 2: preparation and delivery of the consultations. Patients benefitted from attending the late complication clinic and some experienced complete relief from symptoms. Others did not, but they gained hope that they might be able to receive treatment in the future. Patients wished for more information about late complications, preferring that the most common symptoms were described along with patient-friendly treatment options. The patients were satisfied with telephone consultations, as they were easy to fit into a daily schedule, and patients found it easy to express themselves openly. Conclusions Patients were satisfied with the late complication clinic as they felt it gave them a safety net. For the future, patients recommended provision of more information about late complications and possible treatments.

Estimation of the potential of energy efficiency increase in SMARTGRID systems with prosum-ers based on electric vehicles

The modes of operation of power transformer substations 6 (20)/0.4 kV are analyzed. Scientific and technical solutions for the use of electric vehicles as prosumers of electric energy are substantiated. The potential influence of electric cars on electricity losses in "smart" electric networks is determined. Feasibility study of expediency of using electric mobiles as prosumers from the standpoint of loss reduction and efficiency of network equipment use is given. Quantitative indicators of the potential of equalization of the daily schedule of electric loads of the typical area of consumers of city electric networks are determined. The main indicator is the reduction of electricity losses in transformers by 7-10% compared with the existing ones when regulating the mode from the side of 0.4 kV with help of electric vehicles. Additionally, the possibility of increasing the capacity of electrical networks up to 45% identified.

The Huddle: A Daily Dose of Communication

Teamwork and communication are critical to ensure safe and quality care for students. A huddle offers the team a daily dedicated time to connect with each other. Huddles are short, regular debriefings designed to engage clinical staff in discussions about existing or emerging safety issues. The huddle was already systematically and uniformly part of the daily practice at Akron Children’s Hospital’s School Health Services daily schedule prior to COVID-19. The pandemic increased the need for the daily huddle. The fluid and frequently changing guidelines, personal protective equipment, and mitigation considerations has increased nursing anxiety and has made regular communication and daily debriefing even more important. Akron Children’s Hospital School Health Services has used huddle for over 10 years with excellent quality, team building, and nurse satisfaction outcomes.

Research with Older Asian American Family Caregivers Pre- and During the Pandemic: Challenges and Lessons Learned

Research with hard-to-reach, monolingual adults from ethnic minority communities can present a multitude of challenges throughout the research process. This presentation will highlight challenges and lessons learned from two pilot studies with Vietnamese-, Cambodian-, and Korean-American family caregivers aged 50 and older. The first study (n=9) implemented a one-on-one, telephone-based psychosocial intervention before the COVID-19 pandemic; the second is an ongoing study (n=12) consisting of a group-based intervention via Zoom. Throughout recruitment, the following challenges arose: addressing the lack of familiarity with research among caregivers, earning the trust of caregivers, and identifying creative ways to recruit caregivers to participate. During study implementation, common challenges included: caregivers’ unpredictable daily schedule that made it difficult to participate in the scheduled classes, caregivers feeling apprehensive about technology and Zoom, access to reliable internet, and facilitating participation and engaging the voices of caregivers over the phone or via Zoom. Strategies were identified to address these barriers: engaging the support and collaboration of trusted, bilingual and bicultural community-based providers, building culturally-responsive rapport with caregivers, and seeking continuous feedback from caregivers to improve the appeal of the project implementation. The COVID-19 pandemic added an additional layer of difficulty to the research, requiring creativity and flexibility in implementation that took into consideration caregivers’ heightened anxiety, distress, lack of participation due to around-the-clock care, and loss and grief. The challenges and lessons learned from these studies could guide the development of future research efforts and strategies to effectively engage older hard-to-reach, monolingual Asian American caregivers.

Characteristics of the self-regulation of middle school students in Russia during the period of distance learning

Distance learning can be considered as “self-regulated learning” as it involves students managing their own time, planning their own activities, and taking an active part in interactive communication with classmates and the teacher. The purpose of the study is to identify problems in middle school students’ self-regulation of learning activities during the period of distance learning. Based on a comparative analysis of international research, the study identifies the structural components of self-regulation in distance learning including self-organization, goal setting, planning, prediction, self-control, self-assessment, and reflection. The most significant structural component is students’ self-organization, which implies making a daily schedule, recording the tasks performed, controlling one’s actions in accordance with the daily schedule, as well as independently allocating time for homework. The study is based on a survey of 196 middle school students in the Republic of Komi, Russia. The results of the survey allow identifying the most vulnerable areas of students’ self-regulatory activity in the process of planning, organizing, and controlling their time and individual learning activities in a distance learning environment. The practical significance of the study lies in the possibility of using the data obtained to improve the process of distance learning. The materials of the study may be of use to managers, methodologists, and teachers in secondary education in developing methodological recommendations for students regarding the development of self-regulatory skills of middle school students.

Symptoms, impacts, and suitability of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire in patients with sarcoidosis-associated pulmonary hypertension (SAPH): a qualitative interview study

Background Sarcoidosis-associated pulmonary hypertension (SAPH) is a prevalent and serious complication of sarcoidosis. No SAPH-specific self-report instruments for assessing SAPH symptoms and their impact on patients are available to date. This study sought to determine whether the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire is suitable for use in patients with SAPH. Methods Patients diagnosed with SAPH participated in qualitative one-on-one telephone interviews to better understand SAPH symptoms and their impacts on patients’ lives and to determine the appropriateness of the PAH-SYMPACT™ for use in patients with SAPH. The interviews comprised concept elicitation, completion of the PAH-SYMPACT™, and cognitive debriefing. Interview transcripts were analyzed by content analysis. Results Eleven patients with SAPH were interviewed between August 2019 and June 2020. In the concept elicitation, all 11 participants endorsed shortness of breath and nine participants (82%) rated it as their “most bothersome or severe” symptom. Impacts endorsed by all 11 participants were difficulty walking uphill or up stairs and difficulty in performing daily activities. Cognitive debriefing indicated that the PAH-SYMPACT™ items were relevant and understandable to most participants and reflected their experiences of SAPH. Participants indicated that no key symptoms or impacts of SAPH were missing. They also reported that the PAH-SYMPACT™ instructions and response options were clear, and that it would be feasible to complete the 11 symptom items and one oxygen use item as part of their daily schedule. Conclusions This study suggests the PAH-SYMPACT™ is suitable for assessing symptoms and their impact in patients with SAPH. However, larger longitudinal studies are needed to confirm that it is fit for use in this patient population and that it can be used to reliably detect temporal changes in patients’ symptom status. Trial registration Not applicable.

P086 The organization of sleep-wake patterns around daily schedules in college students

A potential contributor to insufficient sleep among college students is their daily schedule, with sleep sacrificed for other waking activities. We investigated how daily schedules predict day-to-day sleep-wake timing in college students. 223 undergraduate college students (M±SD = 19.2±1.4 years, 37% females) attending a Massachusetts university in the US between 2013–2016 were monitored for approximately 30 days during semester. Sleep-wake timing was measured using daily online sleep diaries and wrist-actigraphy. Daily schedules were measured using daily online diaries that included self-reported timing and duration of academic, exercise-based, and extracurricular activities, and duration of self-study. Linear mixed models were used to examine the association between sleep-wake patterns and daily schedules at both the between-person and within-person levels. An earlier start time of the first-reported activity predicted earlier sleep onset (between and within: p<.001) and shorter total sleep time (within: p<.001) for the previous night, as well as earlier wake onset on the corresponding day (between and within: p<.001). A later end time of the last-reported activity predicted later sleep onset (within: p=.002) and shorter total sleep time (within: p=.02) on that night. A more intense daily schedule (i.e., greater total duration of reported activities) predicted an earlier wake onset time (between: p=.003, within: p<.001), a later sleep onset time (within: p<.001), a shortened total night-time sleep duration (between: p=.03, within: p<.001), and greater sleep efficiency (within: p<.001). These results indicate that college students may organize their sleep and wake times based on their daily schedule.

1382Adjustment for the Siblings of Children with Autism Spectrum Disorder during COVID-19

Background During the COVID-19 pandemic, children with autism spectrum disorders (ASD) and neurotypical siblings of children with ASD and their parents and caregivers have been required to change their daily schedule. In this study, we focused on siblings of children with ASD to reveal their adjustment to their daily life. In addition, we examined their caregivers’ stress. Methods An online Qualtrics survey was given to caregivers of children with ASD on February, 2021 at Thomas Jefferson University in the United States. First, we assessed the severity of children with ASD. In addition, we examined how their neurotypical siblings adjusted to their daily life using the validated Strength and Difficulties Questionnaire (SDQ). Moreover, we analyzed caregivers’ stress and their socioeconomic status. Results Fifteen caregivers responded to the survey. 42% of children with ASD had behavioral issues beforehand, 80% of which showed worse behaviors during this pandemic. Siblings of children with ASD showed higher scores of difficulties in adapting to new routines during COVID-19. Some caregivers lost their jobs and caregivers of those with behavioral issues reported stress levels that were 4.4 points higher on the scale. Conclusions Siblings of children with ASD and their caregivers are facing difficulties in their daily life during this pandemic. Appropriate support systems for children with ASD, their siblings, and their parents and caregivers may help them with their better adjustment. Key messages Siblings of children with ASD show difficulties in adjusting, and their caregivers feel more stress during COVID-19 pandemic.

Qualitative and quantitative analyses of polysomnographic measurements in foals

Veterinary and human medicine are still seeking a conclusive explanation of the function of sleep, including the change in sleep behaviour over the course of an individual’s lifetime. In human medicine, sleep disorders and abnormalities in the electroencephalogram are used for prognostic statements, therapeutic means and diagnoses. To facilitate such use in foal medicine, we monitored 10 foals polysomnographically for 48 h. Via 10 attached cup electrodes, brain waves were recorded by electroencephalography, eye movements by electrooculography and muscle activity by electromyography. Wireless polysomnographs allowed us to measure the foals in their home stables. In addition, each foal was simultaneously monitored with infrared video cameras. By combining the recorded data, we determined the time budgeting of the foals over 48 h, whereby the states of vigilance were divided into wakefulness, light sleep, slow-wave sleep and rapid-eye-movement sleep, and the body positions into standing, suckling, sternal recumbency and lateral recumbency. The results of the qualitative analyses showed that the brain waves of the foals differ in their morphology from those previously reported for adult horses. The quantitative data analyses revealed that foals suckle throughout all periods of the day, including night-time. The results of our combined measurements allow optimizing the daily schedule of the foals according to their sleep and activity times. We recommend that stall rest should begin no later than 9.00 p.m. and daily stable work should be done in the late afternoon.