[in Japanese]

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We have prepared two types of laryngotracheal separation with an end-tracheostomy to completely prevent pulmonary aspiration for patients with tracheostomy. The type I is laryngotracheal separation with a removal of exsisting tacheostomy. The type II is tracheostomy-preserving laryngotracheal separation. Between June 2009 and July 2016, 17 patients with a tracheostomy underwent laryngotracheal separation and the usefulness of these two procedures was evaluated retrospectively. The type I procedure was performed in 10 cases and type II in 7. Tracheoesophageal anastomosis was done in 6 patients and one case in the type I and type II, respectively. The average operation time was 269 ± 62 minutes in the type I and 160 ± 50 minutes in the type II. The intraoperative blood loss was 120±55g and 31±45g in the type I and type II, respectively. Tracheo-innominate artery fistula and lung atelectasis developed in one each patient in the type I, and failure of the tracheal closure and orifice　stenosis of the tracheostomy due to skin tag occurred in one each patient in the type II. Since the type II procedure needed no exfoliation around the lung side trachea, which resulted in a narrow area exfoliation during surgery, the type II method showed shorter operation time and less intraoperative blood loss, compared to the type I. In addition, the risk of occurrence of tracheo-innominate fistula was considered to be low in the type II, equivalent following a tracheotomy, because this procedure can be accomplished without peeling the lung side trachea or causing tracheal deviation. The tracheostomy-preserving laryngotracheal separation could be a treatment of choice for patients with an intractable pulmonary aspiration after receiving tracheostomy.

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The objective of this study was to reveal changes and characteristics of cumulative fatigue in mothers of disabled children who require medical care. We investigated attributes, child-rearing/environmental factors, cumulative fatigue symptoms index (CFSI) and free answer of subjects for about every 2 months using a questionnaire form. The subjects included 6 mothers of disabled children who require medical care. Their age was 37.50±6.51 years. Three of them had jobs, and the other three did not. The age of their children was 4.72±1.78 years. The medical care that they required included home oxygen therapy for 3 children, tube feeding for 1, gastrostomy for 5, aspiration for 6, and inhalation for 2. The mean rate of complaints in subjects according to each CSFI category exceeded that of general women for 7 categories. As for annual changes in cumulative fatigue, the mean value in many of them exceeded that of general women at any time, suggesting that the subjects had been feeling cumulative fatigue throughout the year. The free answer revealed that many of them had realized the changes in their own fatigue or stress according to their children’s health status. This suggests that it is important to provide them with supports from various aspects according to the individual situations and needs.

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The present study aimed to examine the status of collaboration in nursing care conducted by nurses to support children with medical care needs and their families as well as their awareness of collaboration in nursing practice. The subjects were 1,398 nurses in a prefecture to which self-administered questionnaire survey forms were sent by mail. Responses from 327 nurses were analyzed. Most nurses were able to collaborate with hospital nurses to discuss psychological, physical, and medical care provided for pediatric patients and their families. However, they sometimes encountered difficulty when addressing children with illness that they had no experience treating and providing the pediatric patients with advice on self-care unique to each patient and their behaviors for recovery. Nurses working in child care facilities and general educational institutions were able to collaborate with each other. Most nurses recognized the importance of collaboration in nursing practice. They also stated that it is necessary for them to be able to communicate with other nurses, patients, and their families without difficulty and frequently exchange information to further promote collaboration, secure sufficient numbers of personnel and time, and provide opportunities for meetings. Nurses who are involved in the lives of pediatric patients and their families and working in a variety of health care facilities and institutions should provide them with support while collaborating with each other across the borders of different fields, and this will promote the development of a society where children with medical care needs and their families can lead comfortable lives.

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The symptom of nasal obstruction induced by allergic rhinitis could disturb not only upper respiratory function, but also sleep qualities including sleep apnea, sleeplessness, daytime sleep tendency. The patients with severe motor and intellectual disabilities (SMID) might be affected by the symptom of nasal obstruction with same or above degree. Fexofenadine hydrochloride (histamine H1-receptor antagonist) / pseudoephedrine hydrochloride (α adrenergic agonist) combination drug could be useful for the patients with allergic rhinitis presenting nasal obstruction without major side effect. And it was reported that the side effect induced by the stimulation of the sympathetic nerve might not be affected by this drug, except for the patients with severe hypertension and coronary vascular disease, glaucoma, or ischuria. However, we experienced the crisis of unexpected abnormal behaviors after administration of this drug in the treatment of allergic rhinitis for the patients with SMID (three in five patients). They presented self-harm, aggressive behavior, running away suddenly, and sever irritation after administration of this drug. Those symptoms disappeared after the discontinuance of this drug within two days. Thus, it could be suggested that even if this drug might be safe in general patients, it could be harmful to the patients with SMID, because the conditions of the autonomic nerve in the patients with SMID should be very unstable.

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It takes time for children (adults) with severe motor and intellectual disabilities (patients with severe conditions) to return to ordinary lives that they had before hospitalization even after completion of acute-phase treatments following onset of acute diseases. The families who provide care may feel difficulty judging whether or not the patients need care, which increased during hospitalization, and living with anxiety without perspectives that the patients would be able to return to the ordinary lives after discharge. We have admitted patients to our facility in order to help them return to the ordinary lives in their communities after completing treatments at the acute care hospital. The care we provide for the patients with severe conditions have been highly individualized in each case. By reviewing the hospitalized cases, we found that there were several processes in common: 1. Assessment of disease/disorder and estimation of functional prognosis, 2. Medical management and intensive rehabilitation, 3. Reestablishment of a care plan and life simulation, and 4. Coordination of social resource use. These processes require expectation and coordination from the life-model aspect so that we can play a role as an intermediate facility specialized for accommodating children with severe conditions requiring medical care. It has been a challenge to establish a system with which we can sufficiently coordinate the patients' hospital stay as well as their daily lives from the comprehensive perspectives throughout their lives from childhood to adulthood.

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The drug therapy used in treatments for patients with severe motor and intellectual disabilities (SMID) is generally polypharmacy. We conducted this study to investigate whether or not intervention by pharmacists would be useful for prescription adjustment or reduction of nursing task load. The subjects included 134 patients with SMID who had been hospitalized, and investigational drugs were the agents which had not been changed for the past 6 months in prescriptions. The subjects had been evaluated and classified in advance by pharmacists into two groups: 84 patients who would need interventions and 50 patients who would not. For 84 patients who were considered as “intervention required”, prescriptions were reconsidered by the pharmacists along with physicians; a total of 132 drugs were reduced in 69 out of 84 patients at 2.0 drugs (1.1-2.2) / day / person (median [interquartile range: 25-75%]). The most common reason for the drug reduction was “stabilized disease status” reported by 43 subjects, and the drugs which had been commonly reduced included anti-epileptic agents and laxatives. Consequently, the drug cost was reduced at 134.7 (54.1-215.3) yen / day / person (mean [95% confidence interval: the lower-upper limit). After the intervention, a questionnaire survey was conducted in nurses. It was assumed that prescription intervention by pharmacists resulted in reduction of drug-related task load. According to the results, it was suggested that prescription intervention by pharmacists for patients with SMID may contribute to adjustment of prescriptions, reduction of medical cost, as well as reduction of nursing task load.

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Regarding gastrostomy for patients with severe motor and intellectual disabiities (SMID), making gastrostoma at accurate site of abdominal wall or stomach can avoid long-term complications. We performed laparoscopic gastrostomy in seven patients with SMID during a two-year and three-month period. Patients were 2 to 41 years old. Among these, five received gastrostomy, one received re-gastrostomy, and one received Nissen’s fundoplication and gastrostomy. We could gastrostomy at the appropriate site of stomach even towards elder patients with severe deformation by laparoscopic surgery with increased ports. Pre-operative marking of the appropriate gastrostomy site while the patient was in the half-sitting position was useful to determine the appropriate site of the abdominal wall. During laparoscopic operations, via traction of the stomach, gastrostomy at the appropriate stomach site is feasible even in SMID cases with a highly transformed trunk. All cases had good postoperative courses; no postoperative complications were observed.

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Objective: We investigated the state of Helicobacter pylori (H. pylori) infection in patients with severe motor and intellectual disabilities (SMID) admitted to Tsudumigaura Medical Center for Children with Disabilities. Methods: The subjects were 77 patients with SMID (male: female = 52:25; median age = 27 years; range = 2-53 years) who were admitted to our center between September 2013 and March 2014. H. pylori antigens in the stool and serum H. pylori IgG antibodies were determined. Patients with positive results for either or both of the tests were defined as having H. pylori infection. Infected patients were treated with primary therapy of lansoprazole, amoxicillin and clarithromycin. Results: Of 77 patients, 18 (23.4%) were antigen-positive, 33 (42.9%) were antibody-positive, and 35 (45.5%) were determined to have H.pylori infection. The infection rates of patients with tube feeding had significantly higher infection rates than those with oral feeding (60.7% vs. 36.7%; p < 0.05). Among patients under 19 years of age, patients with tube feeding had significantly higher infection rates than those with oral feeding (60% vs. 8.3%; p < 0.01). The primary therapies were successful in 60.0% of the infected patients. Conclusions: The H. pylori infection rate of patients with SMID in our hospital was high. In particular, the infection rates of patients with tube feeding were very high. The efficacy of the primary therapy was not sufficient.

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It is assumed that patients on mechanical ventilation would face tremendous problems when they need an evacuation during and after large-scale disasters. We conducted interviews with 7 mothers of children on mechanical ventilation and home-care staff in order to reveal evacuation behaviors of patients on home mechanical ventilation and their families during and after 2016 Kumamoto earthquakes as well as what sort of supports they received before they returned home. According to the results, it was found that no one had prepared evacuation kits even after the earthquakes as there were simply too many items required for a few days. The patients were able to go home satisfied for the following reasons: They were immediately accepted by medical centers, home-care staff were making the rounds to provide care for patients and their families who had moved to the medical centers, and they were able to receive day-care services. This suggests issues associated with storage of essential items and provision of transportation services as well as the need of seamless collaboration between the home-care service office and medical centers.

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A 67-year old patient with severe motor and intellectual disabilities who presented with edema in the limbs and hypoproteinemia as well as hypoalbuminemia was treated with medium chain triglyceride (MCT). Although the patient did not show any improvement in symptoms or hematological test results with intake of nutritional supplement drinks rich in branched-chain amino acids, he improved greatly with intake of MCT about 9g per day, sprinkled over the staple food and the other foods at each meal; his edema disappeared, and remarkable improvement was observed in the serum albumin as well as in the other data of nutritional indexes such as serum cholinesterase and total lymphocyte count. MCT is a type of food which allows us to take lipids, namely high-calorie nutrition supplement, without imposing any stress on the intestinal tracts. The patient was able to take MCT without tasting or smelling anything and to improve his nutritional state. In addition, it appeared effective for hypoproteinemia with its protein synthesis stimulation and protein degradation inhibition.

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We previously reported two cases where patients died due to esophageal bleeding caused by catheter placement in the esophagus, which was overriding the descending aorta and then running down into the left side in association with the mediastinal deviation towards the left due to right-convex thoracic scoliosis. In this study, we further report two additional cases where we observed the similar esophageal condition without lethal bleeding. The Case 1 was a 36-year old male with metachromatic leukodystrophy. A chest CT image, which was obtained when he had aspiration, revealed that his esophagus was overriding the descending aorta at the site where the left main bronchus and the descending aorta were crossing over in association with right-convex thoracic scoliosis, and then further running down into the left side with a large curve. He had been managed with a gastric fistula and had never experienced a long-term catheter placement in the esophagus. He had no past history of esophageal bleeding. The Case 2 was a 53-year old female with cerebral palsy. She had persistent coffee-ground gastric residue during nasogastric tube-feeding. A chest CT image revealed that the esophagus, which had received catheter placement due to right-convex thoracic scoliosis as in the Case 1, was overriding the descending aorta and then running into the left side, being sandwiched between the left main bronchus and the descending aorta. Erosion and redness were observed on the esophageal mucosa with esophagoscopy, suggesting that there was esophageal bleeding caused by catheter placement.

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A 43-year-old woman with severe motor and intellectual disabilities (SMID) presented with left leg swelling that appeared suddenly following symptoms of respiratory infection including fever. Using ultrasonography, we detected extensive thrombosis from the common iliac vein to the soleus muscle vein despite the fact that the patient had no evidence of coagulation abnormalities or other risk factors for thrombosis. Use of the factor Xa inhibitor apixaban dramatically reduced the thrombi and associated leg swelling. It is widely accepted that patients with SMID are at greater risk of deep vein thrombosis (DVT) because of their reduced voluntary movements and their respiratory insufficiency. Unfortunately, most reports of DVT in these patients are subclinical and discovered accidentally. Therefore, we recommend that SMID patients, whether asymptomatic or with some degree of leg swelling, be routinely examined using ultrasonography to check for DVT. In addition, we recommend the use of factor Xa inhibitor anticoagulants for the treatment of patients with DVT because of the low risk of bleeding associated with these drugs.

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Semi-structured interviews were conducted with two mothers of children with severe disabilities requiring pediatric medical care at home to reveal how they felt about their children's growth and development since they started using a development support center. The results of the interviews suggested that they had recognized their children's growth as follows: “children could express what they want to express", “they came to be able to enjoy communications with others", “they are growing while they enjoy visiting the development support center", “the family members came to be able to deal with children in various ways" and “they came to be able to have various experiences with the help of professionals". It was revealed that mothers had recognized that professionals could promote development as long as safety was assured even in children with severe disabilities requiring medical care.

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We experienced two cases of acute angle-closure glaucoma (acute glaucoma attack) at a facility for children (patients) with severe motor and intellectual disabilities (SMID). The symptoms observed when it was discovered include loss of consciousness for one patient, and for the other, crying and hyperemic conjunctiva. Acute angle-closure glaucoma is a condition which requires immediate treatments; it may lead to loss of vision shortly after the onset if it is left untreated. In children (patients) with SMID, it is sometimes difficult to notice their changes at onset as they are unable to complain of symptoms most of the time and may have chronic ophthalmological symptoms such as hyperemic conjunctiva due to constant malclosure of eyes, compression of eyes in association with the facial position, and self-stimulation. In addition, common use of oral drugs which cause dilation of the pupil as well as the position of the body such as prone position may also induce the onset. It often occurs in elderly patients as it can be also induced by cataract. Further attentions will be required as incidence of acute angle-closure glaucoma may increase in the future along with aging of the children (patients) with SMID.

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Bone density was measured in 15 female in-patients with severe motor and intellectual disabilities (SMID) aged 40 years or above in order to evaluate usefulness of bone density measurement as well as factors associated with fractures in osteoporotic patients with SMID. Furthermore, their muscle tone was assessed using the Modified Ashworth Scale (MAS). According to the results, (1) the young adult mean (YAM) of bone density in the entire group was 62.2%; 11 patients had been diagnosed with osteoporosis (73.3%) and 6 had fractures (40.0%). For the elderly patients in the post-menopause group, 6 out of 7 patients had osteoporosis (85.7%) and 4 patients had fractures (57.1%). (2) There was no significant difference in the mean age between the osteoporosis group and the non-osteoporosis group. The number of anticonvulsants being used was significantly greater in the osteoporosis group. (3) The number of anticonvulsants being used was significantly greater for fracture cases in the osteoporosis group. (4) A significant decrease in bone density and increase in fracture rate were observed in the patient group using phenytoin (PHT). (5) Incidences of osteoporosis and fractures were significantly high in patients categorized to the Class I of Oshima classification and MAS 0. (6) Fracture was frequently observed in the patient group of body mass index (BMI) below 15 kg/m2 and that of BMI greater than 20 kg/m2. These findings suggested that appropriate classification of anticonvulsants, adequate control of body weight, and additional stress to the bones in association with muscle tone would be the keys to prevention of osteoporosis and fractures.

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We conducted a literature review regarding difficulties for parents with children who require medical care at home. On the ICHUSHI website version 5, we primarily searched domestic medical journals published between 1996 and 2015 using 7 keywords: “family, mother, parent”, “child (children)”, “pediatric”, “medical care”, “pediatric home”, “after discharge from NICU” and “child care”. Of these, 29 original articles which described specific problems in detail regarding home care were selected for the review. We looked at the overviews of the articles and analyzed the trend of the studies and difficulties that the parents had been facing. As a consequence, we found that the number of studies reporting such difficulties had been increasing every year. There were 4 types of difficulties for parents with children who require medical care at home: “difficulties associated with medical care”, “difficulties associated with children’s conditions”, “difficulties associated with social lives”, and “difficulties associated with parents, families and siblings”. They had experienced various situations in home care settings and had been living with mixed feelings. It is necessary to consider provision of supports in home care from various perspectives in order to relieve difficulties for children who require medical care and for their parents.

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The purpose of this study was to reveal nursing care provided according to individuality of children with severe motor and intellectual disabilities (SMID) based on episodes shared by experienced nurses. We conducted an analysis qualitatively and descriptively using semi-structured interviews with nurses who had over 3years of nursing experiences with children with SMID as well as nurses at the level III or above in the clinical ladder assessment. The investigation was conducted between June and August 2016. The participants included a total of 11 nurses from a pediatric hospital and a rehabilitation center for children with SMID, and the mean duration of the interviews was 59.1 minutes. For the nursing care methods used according to individuality of children with SMID, we extracted the following types: “care maintaining the comfortable condition”, “care corresponding to the complicated symptoms”, “care predicting the onset of an event”, “care reading and corresponding to emotions”, and “care promoting development”. Experienced nurses had individualized the patients’ care while understanding their complicated symptoms associated with physical characteristics of children with SMID. They were providing nursing care corresponding to the patients’ emotions so that they could maintain the comfortable condition, while removing uncomfortable situations, and promote development.

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In A hospital 's severe child' s ward, we provided "eating fun" and worked on dietary education through various cooking. In collaboration with child instructor, childcare professional, occupational therapist, speech-language-hearing therapist and ward staff, fresh juice, soft cream, chocolate fondue etc. were planned and implemented. We conducted 22 times from February 2014 to April 2015, with 54 items of ingredients and 11 kinds of menu. From the patients' families and ward staff, they were also able to enjoy 'eating through the senses of vision, olfaction, hearing, tactual sensation and taste'. We enjoyed expectation by seeing the process of cooking, also from the staff evaluation was obtained. It is also important to grasp the feeding / swallowing function of the child correctly and to support the child to eat deliciously while devising a safe diet form, how to assist. We would like to continue making efforts to improve food education activities and food service in the severe child ward.

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Outbreaks of virus infections frequently occur in wards for children (patients) with severe motor and intellectual disabilities. As most patients are unlikely to report subjective symptoms, it is difficult to detect infections at an early stage, resulting in serious outcomes or delayed isolation. Moreover, infections spread rapidly through activities or tasks of multidisciplinary professionals which require direct contact with patients. In order to determine limitations of various activities or tasks immediately after outbreaks and notify the faculty of the decisions, we prepared “Direction Confirmation Form for Nosocomial Infection Control” in 2012 and have been utilizing this form since then. Our ICT (Infection Control Team) and the hospital director worked together on this form and promptly determined three limitation levels for each item, as “direction by the hospital director” and notified the entire faculty of this direction via documents and electric charts. This confirmation form was utilized for a total of 5 times in 5 years. Hence, we could promptly assess all necessary items and immediately notify the faculty of all professions of the “direction of the hospital director”. Furthermore, this enabled us to spend more time and efforts in the clinical setting, and to promptly and appropriately deal with the patients. We believe that this confirmation form is a very useful tool which can be easily understood by multidisciplinary professionals so that they can cope with outbreaks of infections through prompt and organizational collaborations.

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Effects of serum magnesium level and magnesium oxide in children (adults) with severe motor and intellectual disabilities (SMID) were investigated retrospectively. Subjects were 92 hospitalized patients with SMID ward at Shikoku Medical Center for Children and Adults whose serum magnesium levels were measured between April 1, 2014 and October 31, 2016. During the investigation period, serum magnesium levels tended to be low in the patients with SMID who had limited life freedom, and serum magnesium levels were probably corrected with magnesium oxide administration. Furthermore, there was no correlation between dose and serum magnesium level fluctuation in magnesium oxide-administered patients, and levels tended to increase with long-term administration.

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