[in Japanese]

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The present study aimed to clarify fundamental intellectual activities and problem behavior of patients admitted to Japanese public and private institutions for patients with severe motor and intellectual disabilities (SMID) from 1988 to 2009. We conducted a survey of fundamental intellectual activities, including playing, communication-receiving, and communication-producing. Twelve items of abnormal habits and interpersonal interactions were also employed as typical problem behaviors. Complete difficulty in playing was observed in 17% of the patients, while the proportions of patients who were capable of playing alone and playing with others were 58% and 25%, respectively. The proportions of patients who were unable to communicate and who communicated using nonverbal messages, such as body language and signs, were 20% and 70%, respectively. A total of 10% of patients communicated using simple verbal or written messages. Our results indicated a diversity of limitations in fundamental intellectual activities. Activity limitations in three items relating to abnormal habits and interpersonal interactions were determined in more than 15% of the patients. These problem behaviors were not accompanied by a wide range of physical activities. Therefore, problem behavior in patients with SMID appears to be closely affected by severe impairment of motor functions.

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The daycare service for patients with severe motor and intellectual disabilities (SMID) living at home began more than 20 years ago and has grown in terms of the number of people cared for year by year. There are now more than 300 centers across Japan, with over 6000 regular users. This number is ever increasing, thanks in part to the support of the government; however, there are several problems left unresolved. In this study, we conducted a questionnaire to clarify problems within the existing system. Questionnaires were distributed to 310 daycare centers engaged in the care of patients with SMID. Questions were designed to better understand the operations of the facilities and to identify important problems within the system, including patient transportation and managerial concerns. Additionally, the questionnaire offered space for facility members to make suggestions and offer solutions. The participation rate for the questionnaire was 57.1% (177 of 310 daycare centers). Analysis revealed the most important problem to be the current shortage of daycare facilities and a serious lack of capacity at existing centers. In addition, respondents reported a lack of nurses, insufficient staff and equipment to deal with emergencies, the high cost of patient transportation, and inefficient management as further concerns. To address these problems, the creation of small-scale community daycare centers capable of supporting larger facilities and the creation of local part-time daycare programs were put forward as possible solutions. Furthermore, many respondents indicated the need for additional financial assistance to address such issues as the employment of nurses, transportation costs, and bath services for users. Through cooperation between institutions and local governments, it will be possible to address the increasing demand and need for daycare facilities for SMID patients through the construction of new regional facilities, as well as smaller-scale support centers, qualitative improvements to existing facilities, and increased financial resources for transportation services.

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We administered questionnaires to survey all 122 residents of our institution with severe motor and intellectual disabilities (SMID; recuperation treatment from April 2012). The questionnaires investigated use of an abdominal position, crawling position, fourfoot position, forward bent kneeling position, and other positions with the face or abdomen facing downwards (“prone postures”) from physical and environmental perspectives. Sixty-five patients maintained a prone posture for a fixed amount of time each day, of whom 7 had profound intellectual and multiple disabilities (PIMD), 47 had first stage PIMD, and 11 did not have PIMD. Prone posture usage was most common among patients with first stage PIMD. Prone postures were effective for aiding respiration, digestion, and the motor system, and for use in acute stages of infection. It was also used as a measure for tracheotomy, gastric fistula, intestinal fistula, fracture, and care burden and for use of the welfare system (assistive devices). Prone postures were not used by 57 patients, of which most either had severe PIMD or did not have PIMD. The reason for not using prone postures was a combination of physical and environmental factors. In particular, human environmental constraint was a factor for non-usage in those on an artificial ventilator. This study clarified use of prone postures. Further studies are needed to help promote the health of patients with SMID.

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We surveyed the physique and nutritional status of the patients with severe motor and intellectual disabilities (SMID) staying at our hospital. The subjects were 34 patients with SMID aged 20 or older staying at our hospital and 11 patients with SMID aged 20 or older who passed away during hospitalization between 2000 and 2011, for a total of 45 subjects. Data from a healthy period was used for comparisons. Mean age was 41.4±12.3 years (24-73 years), and the male to female ratio was 5:4. Mean height was 148.8±13.5 cm, weight was 32.7±8.1 kg, BMI was 14.7±3.1, Rohrer index was 100.2±23.5, serum total protein (TP) was 7.1±0.9 g/dl, and serum albumin (Alb) was 3.6±0.5 g/dl. Aging was associated with decreasing serum Alb. Although there was no significant difference in mean age for serum TP and Alb in the group of subjects who had passed away, scores for this group were significantly lower than those of the group of subjects who were still alive (serum TP: 7.2±0.7 g/dl for those still living and 6.8±0.5 g/dl for those who passed away; serum Alb: 3.73±0.5 g/dl for those still living and 3.13±0.5 g/dl for those who passed away), suggesting that low serum TP and Alb levels may be mortality risks.

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We investigated the best posture for tube feeding in patients with severe motor and intellectual disabilities (SMID). Subjects were 11 SMID (5 with gastrostomies and 6 with transnasal tubes for feeding) who were given spinal x-rays, upper gastrointestinal tract contrast radiography, and acetaminophen tests to assess spinal scoliosis, gastroesophageal reflux (GER), gastric volvulus, and gastric emptying, among others. The mean age of subjects was 37.3±19.8 years, and 72.7% were medical care dependent SMID. Among subjects, 72.7% had spinal scoliosis, 54.5% had GER, and 27.3% had organoaxial or mesenteroaxial gastric volvulus. Acetaminophen blood level rose more slowly and peak time was more delayed when subjects were in a right recumbent position than when in a supine or left recumbent position (right recumbent: 61.4±15.7 min, left recumbent: 39.5±23.5 min, supine: 40.9±24.3 min). Having organoaxial gastric volvulus tended to accelerate peak time (present: 20.0±8.7 min, not present: 48.8±23.7 min). While posture for tube feeding must be adjusted to suit each individual, caution is needed in using a right recumbent position that tends to aggravate gastric motor function.

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We tested the efficacy of a video of physical therapy for patients with severe motor and intellectual disabilities (SMID) as subject matter. Subjects were 21 students majoring in physical therapy that had not previously witnessed physical therapy for patients with SMID. We measured differences in their perceptions of patients with SMID before and after video viewing using the Semantic Differential Method (SD-Method). SD-Method score of subjects was significantly higher after viewing the video. Score increased in 20 of 21 subjects. Scores were significantly higher in 31 of 68 items in the SD-Method after viewing the video. This suggests that the video may be useful teaching materials to change students’ perceptions of patients with SMID.

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This study investigated 251 patients (mean age; 42.4 ± 9.6 years) with severe motor and intellectual disabilities (SMID) residing at our institution to determine the prevalence of dental diseases. The results were compared to the 2005 Survey of Dental Diseases (SDD). We also investigated the incidence of tooth loss during a ten year period (2002~2011), and estimated the oral health maintenance in the patients. The percentage of decayed and filled teeth per present teeth (DF tooth rate) of the SMID patients (35.7%) was significantly lower than that of the SDD patients (46.3%; p < 0.01). The number of decayed, missing, and filled teeth per person (DMFT) of the SMID patients (14.6 teeth) was the same as that of the SDD patients (14.6 teeth). The number of decayed teeth per person (DT) of the SMID patients (4.6 teeth) was significantly higher than that of the SDD patients (1.1 teeth; p < 0.01). However, the breakdown of decayed teeth was as follows: C1 (68.3%) was very high, while C2 (13.1%) and C3 (0.9%) were very low in the SMID patients in comparison to those in the SDD patients. The number of missing teeth per person of the SMID patients (6.4 teeth) was significantly higher than that of the SDD patients (2.3 teeth). The cause of tooth loss was periodontitis (67.0%), followed by dental caries (19.2%). The annualized tooth loss per person was 0.12 teeth. The institutional DF tooth rate was lower than that of the SDD rate, and DMFT was the same as that of the SDD patients. The number of teeth with caries was lower than that of the SDD patients. These results reflect the benefits of periodic dental examinations and treatment, and the program for oral health maintenance at the institution, and which also reduce the number of teeth that are lost.

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A questionnaire on end-of-life care was administered to family members of 63 patients with severe motor and intellectual disabilities (SMID) living at our institution. The response rate was 80.9%. Regarding basic attitude towards end-of-life care, in the event of no hope for recovery, 64.7% of respondents wanted care to be provided by the institution, 31.3% wanted it to be provided by the family, and 3.9% wanted intensive care to be given to the greatest extent possible. Concerning end-of-life medical intervention, 54.9% requested cardiopulmonary resuscitation, 11.8% requested artificial ventilation, and 7.8% requested artificial dialysis or plasma exchange. Surveying family members on end-of-life care had the effect of increasing their awareness of the unavoidable terminal phase. Moreover, having the entire family consider end-of-life care together was a major step towards them considering what such care should entail when their family member is the one involved.

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To prove the effectiveness of music therapy in severe motor and intellectual disabilities, the effect of the therapy was studied by both subjective and objective ways. Expression was scored as subjective method and biochemical parameter was measured as objective method. Salivary amylase activity was a noninvasive biochemical parameter. The therapy brought various changes of expression as look, glance and body movement in patients with SMID. Decrease of salivary amylase activity in patients with SMID after the therapy was predicted before the studies. As a matter of fact, the change of amylase activity after music therapy for those patients was not significant. Both measurement for music therapy were noninvasive and useful for patients with SMID. Hereafter, to define the meaning of measurement of salivary amylase activity in SMID, the difference between the salivary amylase activities using spiritual uplifting and relaxing music in the music therapy should be examined.

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The purpose of this study was to clarify the changes in parents' perceptions about the burden of care after gastrostomy surgery for their children with severe motor and intellectual disabilities (SMID). Questionnaires were distributed and valid responses were received from 90 parents with children under the age of 18 with SMID who had received gastrostomy surgery in the past five years. Thematically analyzed results yielded six categories regarding the changes in parents' burden: 1) children's physical condition; 2) children's life; 3) medical care; 4) available support; 5) parents' life and 6) feeling for children. Although most parents felt that their burden was reduced, some parents felt that their burden was increased because of the development of complications or the reduction of available support. Parents' perceptions measured on a 100 mm Visual Analog Scale suggested that after their children's gastrostomy surgery, there was a significant decrease in parents' burden of care(t (89) = 8.4, p < 0.001). During the process of parents' decision making about choosing gastrostomy surgery for their children, nurse should provide information to parents about the nature of a gastrostomy and consider with the parents whether gastrostomy surgery could improve the quality of life of children and parents.

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Melatonin is a sleep-inducing hormone that is secreted from the pineal gland. Although it is used to treat sleep disorders in patients with severe motor and intellectual disabilities (SMID), no studies to date have examined melatonin secretion in patients with SMID. We measured salivary melatonin concentration at noon and midnight in 13 patients with SMID living at our institution (all subjects were tube fed and had underwent a tracheotomy and 9 subjects used an artificial ventilator) and compared measurements to 5 healthy controls. Only one SMID subject had an abnormally low nocturnal melatonin concentration, while 7 had abnormally high concentrations. Twelve had abnormally high diurnal melatonin concentrations, indicating that most subjects did not have impaired melatonin secretion, but rather higher concentrations than normal. The ratio of diurnal to nocturnal concentration was 0.64 ± 0.43 in SMID subjects, which was significantly higher than healthy controls (0.18 ± 0.06; p = 0.02). As high diurnal to nocturnal concentration was significantly correlated with conditions such as lack of visual tracking and a dilated third ventricle, the high ratio in SMID subjects may indicate impairment of the melatonin secretion suppression system from the retina to the pineal gland. Presence of daily epileptic seizures was also significantly correlated with high diurnal to nocturnal melatonin concentration.

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We examined the relationship between Yokochi classification and eating and swallowing function. Subjects were orally feeding patients with severe motor and intellectual disabilities among those with “severe” level of intelligence and level of locomotive function according to the Yokochi classification. They were assessed for stage of eating function, presence or absence of lip sealing, and presence or absence of food processing methods in the oral cavity for each level of intelligence and level of locomotive function. The results revealed an association between the self-feeding stage of eating function and level of intelligence. In addition, presence or absence of lip sealing when at rest and while processing and some food processing methods in the oral cavity were affected by both level of intelligence and level of locomotive function. This suggests that applying the classification of disability levels for level of intelligence and level of locomotive function in the Yokochi classification may be useful for predicting severity of eating and swallowing impairment.

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We introduced levetiracetam (LEV) to 62 patients with severe motor and intellectual disabilities (SMID) for their refractory epilepsies and in 10 of the cases evaluated their urinary retention (UR). In 5 of 10 patients, UR promptly disappeared after discontinuation of LEV. Factor analysis revealed a lack of correlation between the LEV dosage, concentration, or duration, and the occurrence, distribution or severity of UR. However, most patients were taking multiple anti-epileptic drugs (range 3 to 5 anti-epileptic drugs, mean 3.0) for control of refractory epilepsies, and other drugs including anti-cholinergic, anti-contracture drugs, muscle relaxants, botulinum toxin, and anti-depressants (range 4 to 7 drugs, mean 4.2) to improve physical and mental disorders. The physical and mental characteristics of patients and concomitant drugs must be taken into consideration before introduction of LEV to SMID patients.

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We examined heart rate variability (HRV) and voluntary action to investigate response to a Snoezelen environment of patients with severe motor and intellectual disabilities (SMID) with different sensory stimulation preferences. Subjects were two non-institutionalized patients with SMID with a strong and weak interest in side glow fibers, respectively. Subjects were observed in two phases, in a dim Snoezelen room and in a bright multipurpose activity room, to examine reproducibility of response to side glow fibers. Electrocardiographic measurements were taken during activity to analyze HRV and voluntary action was recorded by video and analyzed. HRV analysis showed stronger sympathetic nervous system activity in the Snoezelen room than in the multipurpose activity room in Subject 1 but no difference between sympathetic nervous system activity and parasympathetic nervous system activity in Subject 2. In addition, similar heart rate and duration of voluntary action was observed between the two phases in Subject 1 but not in Subject 2. These results suggest that (1) a Snoezelen room can elicit positive physiological arousal in individuals with SMID that have sensory stimulation organs with interest in such rooms, and (2) HRV (HF, LF/HF) may be effective for objectively evaluating patients with SMID that show little response and active movement.

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The purpose of this study was to clarify mothers' health assessment of their children with severe motor and intellectual disabilities (SMID) while providing in-home-care. The subjects of this qualitative study were ten mothers whose children had SMID and who needed special health care at home. Mother's care was based on “knowing the special characteristics of their children”. The “mothers provided medical care adapted to the children's health needs” after assessing and determining the health condition of their children. When their children's health worsened, mothers “assessed the extend of risk to their children's life”, and mothers continued to provide medical care for children at home or they went to the hospital. When mothers judged their continued home care would be futile they sought intensive care at the hospital. Throughout these determinations mothers experienced “the uncertainty about their own assessment of their children's health condition”. These results show that it is important for nurses to maintain a receptive attitude about children whose health status worsens because of the increased burden on the mothers who must assess their child's health. Mothers and nurses need to share information about the child's health condition. Nurses in the outpatient setting, need to rethink the conventional wisdom about mothers performing their children health assessment when mothers experience the uncertainty of their assessment of children's health.

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People with severe motor and intellectual disabilities (SMID) often have additional diseases in cardiovascular, nervous, respiratory and other systems, and are in constant danger of life-threatening events. We held a workshop to raise the number of staff with a common understanding on how to deal with sudden changes in condition, in order to support the lives and daily lifestyles of people with SMID. At the end of the workshop, participants were administered questionnaires, and the data was analyzed with descriptive statistics and with the KJ method for open-ended questions. The results revealed a desire by participants to improve their skills for responding to sudden changes and future self-improvement challenges. They also revealed issues such as establishing fixed criteria when planning the workshop, including background of participants, content, and positioning of the workshop, the need to conduct workshops that are well-coordinated with the hospital environment including the emergency medical system, and positioning of the workshop.

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It is said that one in four Japanese people have athlete's foot. Patients with severe motor and intellectual disabilities (SMID) often have skin problems on their feet, such as thickened epithelium or hyperkeratosis. Trichophytosis, or ringworm, is mostly caused by trichophyton, sensitization to which can cause or exacerbate asthma, leading to increased severity of the condition. We examined 99 patients admitted to our institution to determine the prevalence of trichophytia of the feet (nails) and trichophyton-specific IgE antibody prevalence, and how it is implicated in asthma in patients with SMID living in our institution. Prevalence of trichophytia of the feet (nails) was 11.1%, which was lower than that of the general population. Only three subjects tested positive for the trichophyton-specific IgE antibody, all of whom were adults. There may be a low rate of trichophyton sensitization in patients with SMID, and trichophyton sensitization may have a smaller affect on onset and exacerbation of asthma.

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