Challenges when going on excursions with children with medical complexity in Japan.

BACKGROUND: With advances in medical technology, the number of children with medical complexity (CMC) has increased. Excursions with such children encourage their social participation and have been shown to have a positive impact on their caregivers. However, the first-hand experience of the excursions has not yet been evaluated regarding the difficulties faced by CMC and their caregivers during preparation, transportation, and in the local area. METHODS: Semi-structured interviews were conducted with eight informal and eight formal caregivers of CMC who attended an excursion to Tokyo Disney Land (TDL) via video conference. We investigated challenges that they had experienced through the excursion, performing inductive thematic analysis. RESULTS: Three themes were identified: the preparation stage (Theme 1), problems encountered while traveling to the theme park (Theme 2), and problems at the theme park (Theme 3). In the preparation stage, three subthemes, i.e. preparation for the trip, cooperation with related parties, and researching about the theme park and asking for help, are reported. Theme 2 includes four subthemes: activities of daily living, respiratory care, luggage, and weather changes. Theme 3 has three subthemes: activities of daily living, physical condition management, and issues for the theme parks. CONCLUSIONS: We found that securing the power supply, location, and time for daily procedures are challenges in realizing excursions for CMC, but with sufficient preparation, it is possible in Japan without major difficulty.

Emotional impacts of excursions on parents of children with medical complexity.

BACKGROUND: Parents of children with medical complexity (CMC) have extra child-raising responsibilities because of the time commitments necessary for care, and their social participation is often compromised. Experiencing leisure excursions with such children may be a solution to some of these problems but the first-hand experience of excursions in regard to their psychological impact on the caregivers of CMC remains to be appraised. METHODS: Semi-structured interviews were conducted, via video conference, with eight informal and eight formal caregivers of CMC who attended an excursion to Tokyo Disney Land (TDL). We investigated the psychological changes that they had experienced through the excursion, performing inductive thematic analysis. RESULTS: Three themes were identified among parents and five were identified among medical professionals. Themes reported by the parents were: Increased trust in the public and society (Theme 1); confidence for other challenges (Theme 2), and connection with other parents in the non-medical settings (Theme 3). Themes reported by medical professionals were: Expanding the initiative to other CMC (Theme 1); feeling bonded with other caregivers within the working group (Theme 2); information exchange across different working groups (Theme 3), positive responses from CMC (Theme 4); families' confidence to go out (Theme 5). CONCLUSIONS: This study showed that the excursion to TDL led to positive psychological changes in both medical professionals and parents of CMC, enhancing trust, connection, and confidence. The promising results of this study suggest a need for further research about the impact of an excursion on caregivers of CMC.

Possibility for Children with Medical Complexities to Reach a 3000-m Peak: A Report of 2 Cases.

With the recent development of neonatal medicine, the number of children with medical complexities (CMCs) is increasing. Outdoor activities are important for their psychosocial development, and the principles of accessibility should be addressed. We report the experience of 2 CMCs' high-altitude mountaineering with the necessary support. The participants were a 3-y-old girl with cerebral palsy, symptomatic epilepsy, and a ventriculoperitoneal shunt (Child A) and a 6-y-old girl who underwent bilateral Glenn operations at 11 mo for hypoplastic left heart syndrome (Child B). The support staff consisted of 4 doctors, 1 nurse, 5 nonmedical staff , 3 members from a mountaineering association, and 2 people from an oxygen company. The climbing schedule was 2 days. On the first day, we took a bus to a hut at an altitude of 2450 m and stayed overnight to acclimatize to the altitude. On the second day, we took the beginner's route, which took 3 h to climb 500 m, and our team made an attempt on the summit. During the attempt, Child B panicked. Although her lung sounds did not raise suspicions of pulmonary edema, we decided to leave the mountain with her because her transcutaneous oxygen saturation decreased. Child A had no apparent health problems and made it to the summit. Although CMCs' alpine climbing requires careful planning and staffing considering the risk of high-altitude sickness, our case suggests the feasibility of such activities with CMCs as part of accessibility.

Videoconferencing for Home Care Delivery in Japan: Observational Study.

BACKGROUND: Telemedicine has been increasingly used in many health care fields, including home care, where patients receive medical care at home. Owing to the current COVID-19 crisis, the value of telemedicine via videoconferencing is more recognized, particularly in allowing immobile patients to continue receiving care. However, the efficacy of telemedicine in home care settings in Japan remains to be fully appraised. OBJECTIVE: This study aims to identify the use and impact of telemedicine in a singular home care delivery setting in Japan. METHODS: A retrospective observational study was conducted using patient and other administrative records from a home care clinic. We considered patients who were involved in videoconferencing with home care physicians and telepresenters serving patients during 2018 and 2019. We extracted sociodemographic data of the patients and details of the videoconferencing and descriptively illustrated some specific cases. RESULTS: In a home care clinic in Japan, videoconferencing was conducted in 17 cases (involving 14 patients) over a 2-year period. Of all the cases, 12% (2/17) required emergency transfers and were hospitalized. A total of 88% (15/17) of cases remained; 71% (12/17) of cases were found to need extra medication or to go to a medical facility for consultation, whereas 18% (3/17) of cases were found not to be in need of urgent attention and were asked to rest. Problematic symptoms subsequently improved in 82% (14/17) of cases, and only 6% (1/17) of cases were later hospitalized. CONCLUSIONS: Telemedicine was deemed effective for assessing patients' conditions in the home care setting in situations where home visits by a physician cannot be carried out. Our findings indicate that consultations via videoconferencing are safe and effective, suggesting more active use of videoconferencing in other clinical contexts.

Case report on the legal assurance of Advance Care Planning in collective culture.

This case report shows that there is a lack of a legal framework in Japan to protect patients' right during the end-of-life period, which hinders the implementation of ACP in medical practice. This report suggests that legal support can contribute to the advancement of ACP while addressing cultural differences.

The Impact of Heavy Snowfall on Home Care: A 2018 Case Study in Fukui City, Japan.

OBJECTIVE: Little is known regarding how home care is affected by extreme weather. In February 2018, Fukui City in Japan experienced unprecedented levels of snowfall. We examined snowfall impact on the provision of home care to elucidate whether patients incurred any harm. METHODS: A retrospective observational study using clinical and administrative records from a clinic in Fukui City was conducted on 294 patients (mean age = 69.9 ± 27.7 years; women = 60.5%, median age = 81). The study period was from February 5 to February 18, 2018. We analysed the patients' characteristics, daily trend of planned/actual patient visits, emergency transportation situations, and local snow accumulation. We summarized the situation in the clinic. RESULTS: There were 326 planned home visits, however only 121 (37%) occurred. Despite this, there were only 2 emergency transfers. Although the available clinical staff was limited, they managed to contact most patients via telephone and social networking services. CONCLUSION: Although the number of home visits dramatically decreased, the number of emergency transfers did not increase. This study therefore highlights the necessity for effective disaster preparation, such as assessment training, or use of telemedicine, and on-site decision-making to maintain home care during disasters.

Cross-Sectional Study on Risk of Flooding and Landslides and Their Associated Perceptions Among Home Health-Care Patients Living in Fukui Prefecture, Japan.

OBJECTIVE: This study aimed to evaluate a risk of flooding and landslides among home-care patients, to reveal an extent to which patients require support for evacuation, and to determine whether risk was accurately perceived among the patients. METHODS: This is a cross-sectional study targeting the patients who were actively treated at the home-care clinic in Fukui Prefecture, Japan. We collected data on the patients' sociodemographic and clinical characteristics. Additionally, we collected data on their risk of flooding and landslides through hazard maps and distributed a questionnaire to these patients regarding their risk awareness of flooding and landslides. RESULTS: Of the 199 eligible home-care patients, 84.9% (169 of 199) were at risk of flooding and/or landslides, and 58.6% (99 of 169) of them needs support during evacuation. Furthermore, of those who were at risk of flooding and/or landslides, 46.0% (45 of 99) had accurate risk assessments. Factors that resulted in inadequate risk awareness of flooding and landslides included: not placing importance on evacuation, not using medical equipment, and living on the first floor. CONCLUSIONS: There was limited risk awareness of flooding and/or landslides among the home-care patients. The information of the risk factors regarding inadequate risk awareness of flooding and landslides should be used to sophisticate flooding and landslides evacuation strategy.

The survival time of end-of-life home care patients in Fukui prefecture, Japan: A retrospective observational study.

ABSTRACT: End-of-life advance care planning (ACP) has become increasingly important in home care setting. In facilitating ACP discussion in home care setting, accurate understanding of patients' survival would be beneficial because it would facilitate healthcare professionals to individualize ACP discussion. However, little is known about survival outcome of home care patients. This study aimed to clarify the outcome of patients and identify factors to better predict the survival outcome of home care patients with the focus on patients' primary diseases.We conducted a retrospective analysis using data from 277 patients managed at a home care clinic in Japan and first treated in 2017 or 2018. Data regarding sociodemographic and clinical characteristics, and clinical outcome on December 31, 2019 were extracted. Using Kaplan-Meier product-limit method, we estimated the overall 30 days, 90 days, 1 year, and 3 year survival probabilities among the entire patients and their differences according to their primary disease. We also evaluated whether outcomes differed based on the primary disease or other factors using the hazard ratio and Cox proportional hazards regression.The overall survival probability was 82.5% at 30 days, 67.8% at 90 days, 52.7% at 1 year, and 39.1% at 3 years. The survival rates at 30 days, 90 days, 1 year, and 3 years were 64.6%, 33.4%, 9.5%, and 4.1% among cancer patients; 91.9%, 86.4%, 78.1%, and 47.0% among dementia patients; and 91.9%, 86.4%, 78.1%, and 47.0% among patients with other nervous and cerebrovascular diseases, respectively. Cox proportional hazard regression clarified that cancer patients (hazard ratio 6.53 [95% CI 4.16-10.28]) and older adults (hazard ratio 1.01 [95% CI 1.00-1.02]) were significantly more likely to die than dementia patients and young patients, respectively.Primary disease had a significant influence on the prediction of survival time and could be a useful indicator to individualize ACP in home care setting.

Emergency transfers of home care patients in Fukui Prefecture, Japan: A retrospective observational study.

Little is known about how emergency transfers take place and what outcomes they lead to in the patients who receive home care in Japan. We aimed to assess outcomes of emergency transfers and factors associated with such outcomes in the Japanese home care setting.A retrospective analysis of patient data from a home care clinic in Fukui, Japan, included all patients who experienced emergency transfers which were reported to the clinic during 2018 and 2019. We collected data on patients' sociodemographic and clinical characteristics, as well as the transfer process and its outcome, using patient charts and other administrative records. We first analyzed the overall outcome and then evaluated whether transfer outcomes would differ according to by whom and from where the emergency medical service (EMS) was called, by univariate and multivariate analyses.We considered 63 patients who experienced emergency transfers during the study period. Of the total, 10 (15.9%) returned to their residences without being admitted or being dead on arrival. Although only 2.6% (1/39) of patients whose transfers were determined by health care professionals (HCPs) returned home without being admitted, a direct return was observed for 37.5% (9/24) of patients whose transfer was determined by those other than HCPs (odds ratio of direct return to residences 22.80, 95% confidence interval 2.65-195.87). There was no other variable which was significantly associated with the outcomes after the emergency transfers, although all the patients who have no available caregivers resulted in hospitalization.In this preliminary analysis in the Japanese home care setting, only a small proportion of patients returned to their residences without being admitted following emergency transfers. Patients whose EMS transfer was requested by an HCP usually resulted in an admission to the clinic, whereas transfers requested by non-HCPs frequently did not.

Extreme snowfall and residential care: A case report of a 2-year-old girl with heart failure.

In residential care, the daily use of social networking services with patients (and patients' families) helps prepare for a potential disaster. This enables health workers to continue providing essential care even during disasters, while saving human and medical resources for those who need them the most.