Pediatrics International (2015) 57, 1154–1158
doi: 10.1111/ped.12687
Original Article
Time study of staff members in an institution for severe motor and intellectual disabilities Tadashi Matsubasa,1,2 Akihiko Kimura,2 Makoto Shinohara2 and Fumio Endo3 1 Kumamoto University Hospital, 2Kumamoto-Ashikita Institution for Developmental Disabilities and 3Department of Pediatrics, Graduate School of Medical Sciences, Kumamoto University, Kumamoto, Japan Abstract
Background: In Japan, improvement in the care for institutionalized patients with severe motor and intellectual disabilities (SMID) has resulted in improved prognosis compared with previous decades, leading to difficulty in entering institutions because of the limited capacity. In recent years, new SMID patients discharged mostly from neonatal intensive care units receive care in their parents’ homes rather than in institutions. In order to effect this change, an assessment of patient care in both an institutional and home environment is of utmost importance. Methods: We performed a minute-by-minute time study of the work of staff members (n = 31) in a ward in an institution for SMID (31 patients with no ventilators) over 48 h in order to reconstruct patient care. Results: Significant differences were found between the entirely immobile group (n = 15) and semi-mobile group (n = 13) in the area of total care time (124.6 vs 83.4 min/day, respectively, P = 0.003) and non-medical care time (99.1 vs 69.0 min/day, P = 0.003). Nurses (16 in total) did twice as many tasks as other staff members in the areas of medical care and general care management. The number of tasks was the same for nurses and other staff members in the areas of non-medical care and social participation/others. Conclusion: Patient care undertaken by medical professionals in the areas of both ordinary care as well as medical care seemed to have contributed to improved prognosis in SMID patients. This study demonstrates the essential nature of nursing care for SMID patients living in institutions and at home.
Key words home care, institutionalization, intellectual disability, people with disabilities, time study. In Japan, the lives of patients with severe motor and intellectual disabilities (SMID) first began to be supported by law in 1967 at institutions for SMID as well as at national hospitals. The care for SMID patients in institutions and national hospitals has improved these past 40 years, resulting in reduced death rates from 1.66% (1986) to 1.50% (173/11 597, 2012).1 Coinciding with this change, the survival rate of premature newborns has improved over these decades.2 Infants with neurodevelopmental impairment due to low birthweight,3 as well as hypoxic ischemic encephalopathy,4 and chromosomal abnormality associated with the rise in advanced-age births,5 however, have always been the main target of professional care. Most of these patients have come to receive care in their parents’ homes even in cases in which they are considered to be SMID requiring medical care, because there are few empty beds left in the institutions. In the midst of this transition period, it is important to review care for SMID patients in order to create a good model in scope and quality for all disabled persons. The relatively small population
Correspondence: Tadashi Matsubasa, MD, PhD, Kumamoto University Hospital, 1-1-1, Honjo, Chuo-ku, Kumamoto 860-8556, Japan. Email: [email protected] Received 29 August 2014; revised 30 March 2015; accepted 7 May 2015. © 2015 Japan Pediatric Society
of SMID patients – approximately 40 000 in Japan, 30% of them hospitalized – enables us to carry out this objective realistically. The present study was conducted to assess the current state of SMID patients using a time study of staff members in an institution for SMID.
Methods Twenty-four staff members of a ward for SMID (31 patients) in a SMID institution were the subjects. The institution operates a total of four wards for SMID and other severely disabled patients who require SMID-level care. The study was conducted in one of the four wards, where patient age was the highest and their conditions most stable. Staff members included: 12 nurses (10 nationally licensed nurses, two nurse practitioners licensed by the prefecture), nine nurse’s aides, one child counselor, and two kindergarten teachers. Seven staff members worked twice during the study period, making a total of 31 staff members. Each minute of work for each staff member over the course of 48 h (8 h shifts) was recorded on 2 consecutive days on a weekend in 2008. Measurements were made on a minute-to-minute basis using stopwatches by off-duty staff members from the hospital. The content of the work was divided into six work codes:6 A, general care management; B, non-medical care; C, medical care; D, social participation; E, community life support; F, others (Table 1). The work codes were originally designed for monitoring care given
Time study of care for SMID patients 1155 Table 1 Main work codes A Life support or care management A4 Information exchange between staffs A7 Making record of the time of care A8 Making individual care plan B Life care B1,2,3 Patient hygiene, grooming B4,5,6 Clothes changing B7 Bathing B8 Toilet support B9,10,11 Meal assistance B12,13,14 Posture change B15,16,17 Transfer to/from wheel chair B18,19,20 Patient transfer B21,22,23 Posture support B30,31,32 Taking temperature B33,34,35 Indirect patient assistance B36,37,38 Environmental organization B40 Bed/linen organization B41 Laundry B42 Organization of patient goods B45,46 Communication
B Life care B49 Supervision B50 Others C Medical care C1 Medication C2,3 Suction of sputum C4,5 Tube feeding assistance C8,9 Treatment C10 Examination/measurement C11 Physician support C14 Hydration C16 Infection prevention C20 Training (non-professional) D Social participation support D1,2,3,4 Recreation (group) D5,6,7,8 Recreation (individual) D16 Transportation service E Community life support F Others F1 Cleaning task, conference F2 Break, meal
For each code, two numbers indicate preparation or cleanup and practice; three numbers, supervision, stimulative speech, and practice; four numbers, preparation, practice, cleanup, and others.
to physically disabled adults capable of expressing themselves in an institutionalized setting. Experienced staff members in the institution participated in the task of assigning the most appropriate code to each work. The activities of the staff were compiled and transformed via EXCEL to show individual patient care in order to assess the burden to the caregiver at home. Statistical analysis
Mann–Whitney U-test in SPSS (SPSS, Chicago, Il, USA) was used for statistical analysis. Informed consent was obtained from all the staff enrolled in this study. The design of the study was approved by the ethics committee of Kumamoto University School of Medicine.
Results Average patient age and bodyweight were 45.4 years and 37.3 kg, respectively. Underlying disease was as follows: cerebral palsy (CP) stemming from various causes, n = 23; sequela to central nervous system infection, n = 6; sequela to intracranial hemorrhage, n = 1; and Down’s syndrome, n = 1. Sixteen patients had motor function and IQ fulfilling the definition of SMID (Fig. 1).7 Other patients, while not classified as SMID, required equivalent medical attention due to their medical needs, as well as to difficulty adjusting to the daily life of other facilities. There were no patients who needed mechanical ventilator support. Staff work was divided three groups: direct care, common work, and work for medically dependent SMID patients in the adjoining ward (not included in this study). For direct care, average total care time was 105.4 min/patient/day (A, 2.3; B, 86.0; C, 7.1; D, 9.6; E, 0.01; and F, 0.4 min). Five patients (ID 1, 6, 13, 15, and 18) needed long care time (longer than mean + SD (35.6)). Four of them were bedridden, and all of the five suffered from increased muscle tone
Fig. 1 Oshima classification.7 Divisions 1–4 represent severe motor and intellectual disabilities. Patients with Oshima classification 5–9 can enter institutions if the patient needs medical supervision, has progressive disability, or has medical complications.
Table 2 No. tasks carried out Work code †
Nurse (n = 16) Others ( n = 15)
A
B
C
D,E,F
438 195
2695 2761
611 258
332 342
†
Including nurse and nurse practitioner. © 2015 Japan Pediatric Society
1156 T Matsubasa et al. Table 3 Care for patient 16
Date, time
Work time (min)
23 November 7:28:00 23 November 7:44:00 23 November 8:24:00 23 November 8:27:00 23 November 9:09:00 23 November 9:13:00 23 November 9:29:00 23 November 9:31:00 23 November 10:14:00 23 November 11:38:00 23 November 11:39:00 23 November 11:39:00 23 November 11:40:00 23 November 11:57:00 23 November 11:58:00 23 November 11:59:00 23 November 14:13:00 23 November 14:13:00 23 November 14:14:00 23 November 14:15:00 23 November 14:16:00 23 November 14:17:00 23 November 14:42:00 23 November 14:43:00 23 November 14:44:00 23 November 14:45:00 23 November 14:50:00 23 November 14:51:00 23 November 14:53:00 23 November 15:01:00 23 November 15:04:00 23 November 15:08:00 23 November 15:11:00 23 November 15:11:00 23 November 15:17:00 23 November 16:30:00 23 November 16:32:00 23 November 16:32:00 23 November 17:10:00 23 November 17:12:00 23 November 17:13:00 23 November 17:14:00 23 November 17:33:00 23 November 17:49:00 23 November 17:50:00 23 November 18:17:00 23 November 18:18:00 23 November 20:07:00 23 November 20:31:00 23 November 20:31:00 23 November 20:33:00 23 November 22:42:00 23 November 22:45:00 24 November 0:21:00 24 November 0:27:00 24 November 4:25:00 24 November 4:26:00 24 November 7:14:00 24 November 7:22:00
17 4 5 3 1 1 0.5 0.5 18 2 0.5 0.5 1 1 1 1 1 2 6 3 4 4 7 2.5 0.5 3 1 20 3 2 0.3 0.5 3 4 0.3 0.5 2 9
Staff ID 19 19 19 19 18 18 23 25 23 24 24 24 24 24 24 24 28 28 28 28 28 28 28 28 28 28 28 28 28 21 21 18 18 21 23 23 24 24 22 22 22 22 22 22 24 27 27 28 29 29 29 31 31 31 30 31 31 30 30
Staff classification Nurse/NP
Work content
Work code
NA NA NA NA
Meal assistance Meal assistance Teeth brushing, face washing Teeth brushing, face washing Diaper change assistance Diaper change assistance Transfer from futon to wheelchair Transfer from futon to wheelchair Hair combing Meal preparation(getting meal) Meal preparation(affixing apron) Administering medication Meal assistance Meal assistance Meal preparation (pouring milk) Meal assistance Changing clothes Transfer from cushion chair Changing clothes Diaper changing Changing clothes (pants) Clean up Meal preparation (sitting up) Meal assistance (snack) Meal assistance (snack) Meal assistance (drink) Meal assistance (drink) Meal assistance (snack) Meal assistance (snack) Nail clipping Nail clipping Diaper change assistance Diaper change assistance Diaper changing Diaper change assistance Transfer to cushion chair Transfer to cushion chair Meal preparation (setting-up table) Meal assistance Meal assistance Administering medication Meal assistance Meal assistance Tooth brushing Tooth brushing Diaper changing Diaper changing Sleep preparation Medication preparation Administering medication Administering medication Diaper change Diaper change Taking temperature Taking vital signs Diaper changing Diaper changing Meal assistance Meal assistance
B11 B11 B3 B3 B8 B8 B17 B15 B3 B11 B11 C1 B11 B11 B11 B11 B6 B6 B6 B8 B6 B8 B11 B11 B11 B11 B11 B11 B11 B3 B3 B8 B8 B8 B8 B17 B17 B11 B11 B11 C1 B11 B11 B3 B3 B8 B8 B40 C8 C1 C1 B8 B8 B32 B32 B8 B8 B11 B11
Nurse Nurse KT NA KT NA NA NA NA NA NA NA Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse KT KT NA NA NA NA NA NA NA NA NA NA NA Nurse NP NP NP NA NA NA Nurse NA NA Nurse Nurse
KT, kindergarten teacher; NA, nurse’s aide; NP, nurse practitioner.
© 2015 Japan Pediatric Society
NA/KT
Time study of care for SMID patients 1157 due to CP. Among the six work codes, B (non-medical care) required the longest time. Care time of seven patients (ID 1, 2, 6, 13, 14, 15, and 18) was longer than mean + SD (25.3). All but one (ID 18) were bedridden, and all of these 7 patients had CP with a relatively high IQ or good understanding of outer world. For code C (medical care), three patients (ID 6, 9, and 18) needed longer care time than mean + SD (8.5). All of the 3 patients had CP and needed suction of sputa. Significant differences were found between the entirely immobile group (bedridden, n = 15) and semi-mobile group (able to walk with support, n = 13) in the areas of total care time (124.6 vs 83.4 min/day, respectively, P = 0.003) and code B work time (99.1 vs 69.0 min/day, respectively, P = 0.003). The number of tasks in work codes A–F was counted. Among these tasks, the most frequently seen code B tasks were B11 (meal assistance: practice, 1361 times), B8 (toilet support, 1053 times), B3 (patient hygiene: practice, 458 times), and B17 (patient transfer: practice, 414 times). The most frequent code C tasks were C16 (infection prevention, 369 times), C1 (medication, 125 times), and C9 (treatment: practice, 118 times). During the study 4076 tasks (56%) out of a total 7632 were performed by nurses. When the number of tasks was divided into two groups: nurses and other staff members, code B, D, E, and F were similar, but for code A and C tasks, the nurses outnumbered other staff members by more than two to one (Table 2). The care work for patient 16 is an example of average time of care (Table 3). Care began at 07:28 h in the morning with meal assistance provided by a nurse’s aide, and ended at 07:22 h the next morning with meal assistance provided by a nurse. Meal assistance, diaper changing and nail clipping were performed by nurses and nurse practitioners, as well as by kindergarten teachers, a child counselor and nurse’s aides. Several tasks from several work codes were often performed within a single minute: for example meal preparation (affixing apron) and administering medication at 11:39 h, or changing clothes and transferring patient from cushioned chair at 14:13 h. Staff members were also engaged in common work (information exchange between staff, meal preparation etc.) as well as work for patients in the adjoining ward. The total time of the common work in the SMID ward was 4542.1 min/day, and work in the adjoining ward, 493.2 min/day.
Discussion This is the first minute-by-minute time study over a period of 48 h, of staff members of an institution for SMID, as far as we know. From this study we were able to reconstruct care from the side of the patient. To confirm the validity of the data, we calculated work time of one staff member. The total time measured over the course of 48 h was 16 615.2 min (direct care, 6544.6 min; common work, 9084.2 min; and work for adjoining ward, 986.4 min), which calculates to 8.9 h per shift (31 staff members in total). The study also collected supporting evidence that bedridden patients need increased care time. In addition, patients who seemed to be aware of the outer world better than others needed longer nonmedical care (daily life care).One characteristic of such patients
was tracheal stenosis. Such patients, being bedridden and requiring sputum suction, are typical of SMID patients who have greater medical care needs. This study highlighted the importance of nurses in the care of patients with SMID. Nurses carried the burden of most code B, D, E, and F tasks, in addition to code C work. Patient care and attentive observation from a professional viewpoint seem to have contributed to a good prognosis for SMID patients in institutions. In addition to C work, nurses were engaged in code A work more frequently than other care workers. Medical information transfer to staff members as well as to nurses and families of the patients seems also to have contributed to securing the good health of the patients. The option of transitioning SMID patients from full-care institutional settings to alternative environments is becoming increasingly available. Such normalization, while possibly improving the patient’s quality of life, poses serious challenges to maintenance of an adequate level of patient care. A study of the deinstitutionalization of 51 adults with intellectual disabilities and complex health problems in England suggests the need for careful and considered planning. Once elevated quality of life leveled off 1 year after relocation, four of the 51 people died of pneumonia within 2 years of relocation.8 Considering the future lives of SMID patients at home in Japan, nurse-provided non-medical and medical care, as well as the frequent attention of doctors, should not be underestimated. In an institutional setting, the presence of nurses creates a stable environment and ensures patient health. The methods by which such care may be replicated for SMID patients at home is at present a question of great importance. In Japan, suctioning sputum and tubal feeding in the home are newly added functions that will be performed by certified care workers, and such tasks are also being added to the training programs of other workers. With the completion of the course and the attainment of requisite qualifications, these workers will be able to perform these previously restricted medical tasks. The new system is expected to empower the limited human resources involved in home medical care, but at present there are few workers engaged in the medical care of SMID patients in the home. It is the opinion of the authors that some supporting systems, such as remote monitoring system for home care and coordinators to connect the medical and welfare services, should be employed to assist such care workers. Doing so would partially relieve a significant burden both from already timeconstrained professionals as well as from mothers, to whom such medical tasks most often fall. Future studies might benefit from work codes designed especially for SMID patients, rather than for physically disabled adults. Conducting the study on weekdays, as opposed to weekends, could improve the quality of the data. Finally, with regard to the work done by non-medical professionals, non-medical tasks should be further analyzed from the viewpoint of patient quality of life.
Acknowledgments We thank Yoshifumi Ishitsu for data analysis, and David Ostman for comments. This work was supported by a Grant-in-Aid for © 2015 Japan Pediatric Society
1158 T Matsubasa et al. Scientific Research to Masao Kumode from the Ministry of Health, Labour and Welfare of Japan. The authors report no conflicts of interest.
References 1 Japanese Association for Welfare of SMID. The Annual Number of Patients Who Left Institutions. Survey of Actual Conditions in Institutions for Severe Motor and Intellectual Disabilities (SMID). Japanese Association for Welfare of SMID, Tokyo, 2012 (in Japanese). 2 Kusuda S, Fujimura M, Uchiyama A et al. Trends in morbidity and mortality among very-low-birth-weight infants from 2003 to 2008 in Japan. Pediatr. Res. 2012; 72: 531–8. 3 Kono Y, Mishina J, Yonemoto N, Kusuda S, Fujimura M. Outcomes of very-low-birth weight infants at 3 years of age born in 2003-2004 in Japan. Pediatr. Int. 2011; 53: 1051–8.
© 2015 Japan Pediatric Society
4 Ochiai M, Kinjo T, Takahara Y et al. Survival and neurodevelopmental outcome of premature infants born at 22-24 weeks of gestational age. Neonatology 2014; 105: 79–84. 5 Ooki S. Maternal age and birth defect after the use of assisted reproductive technology in Japan, 2004-2010. Int. J. Womens Health 2013; 5: 65–77. 6 National Council of Facilities for the Disabled. Work Code List. Final Report on Time Study at Institutions for the Physically Disabled. National Council of Facilities for the Disabled, Tokyo, 2005 (in Japanese). 7 Oshima K. Basic problems on severe motor and intellectual disabilities. Koshueisei 1971; 35: 648–55 (in Japanese). 8 Bhaumik S, Tyrer F, Ganghadaran S. Assessing quality of life and mortality in adults with intellectual disability and complex health problems following move from a long-stay hospital. J. Pol. Pract. Intellect. Disabil. 2011; 8: 183–90.
doi: 10.1111/ped.12687
Original Article
Time study of staff members in an institution for severe motor and intellectual disabilities Tadashi Matsubasa,1,2 Akihiko Kimura,2 Makoto Shinohara2 and Fumio Endo3 1 Kumamoto University Hospital, 2Kumamoto-Ashikita Institution for Developmental Disabilities and 3Department of Pediatrics, Graduate School of Medical Sciences, Kumamoto University, Kumamoto, Japan Abstract
Background: In Japan, improvement in the care for institutionalized patients with severe motor and intellectual disabilities (SMID) has resulted in improved prognosis compared with previous decades, leading to difficulty in entering institutions because of the limited capacity. In recent years, new SMID patients discharged mostly from neonatal intensive care units receive care in their parents’ homes rather than in institutions. In order to effect this change, an assessment of patient care in both an institutional and home environment is of utmost importance. Methods: We performed a minute-by-minute time study of the work of staff members (n = 31) in a ward in an institution for SMID (31 patients with no ventilators) over 48 h in order to reconstruct patient care. Results: Significant differences were found between the entirely immobile group (n = 15) and semi-mobile group (n = 13) in the area of total care time (124.6 vs 83.4 min/day, respectively, P = 0.003) and non-medical care time (99.1 vs 69.0 min/day, P = 0.003). Nurses (16 in total) did twice as many tasks as other staff members in the areas of medical care and general care management. The number of tasks was the same for nurses and other staff members in the areas of non-medical care and social participation/others. Conclusion: Patient care undertaken by medical professionals in the areas of both ordinary care as well as medical care seemed to have contributed to improved prognosis in SMID patients. This study demonstrates the essential nature of nursing care for SMID patients living in institutions and at home.
Key words home care, institutionalization, intellectual disability, people with disabilities, time study. In Japan, the lives of patients with severe motor and intellectual disabilities (SMID) first began to be supported by law in 1967 at institutions for SMID as well as at national hospitals. The care for SMID patients in institutions and national hospitals has improved these past 40 years, resulting in reduced death rates from 1.66% (1986) to 1.50% (173/11 597, 2012).1 Coinciding with this change, the survival rate of premature newborns has improved over these decades.2 Infants with neurodevelopmental impairment due to low birthweight,3 as well as hypoxic ischemic encephalopathy,4 and chromosomal abnormality associated with the rise in advanced-age births,5 however, have always been the main target of professional care. Most of these patients have come to receive care in their parents’ homes even in cases in which they are considered to be SMID requiring medical care, because there are few empty beds left in the institutions. In the midst of this transition period, it is important to review care for SMID patients in order to create a good model in scope and quality for all disabled persons. The relatively small population
Correspondence: Tadashi Matsubasa, MD, PhD, Kumamoto University Hospital, 1-1-1, Honjo, Chuo-ku, Kumamoto 860-8556, Japan. Email: [email protected] Received 29 August 2014; revised 30 March 2015; accepted 7 May 2015. © 2015 Japan Pediatric Society
of SMID patients – approximately 40 000 in Japan, 30% of them hospitalized – enables us to carry out this objective realistically. The present study was conducted to assess the current state of SMID patients using a time study of staff members in an institution for SMID.
Methods Twenty-four staff members of a ward for SMID (31 patients) in a SMID institution were the subjects. The institution operates a total of four wards for SMID and other severely disabled patients who require SMID-level care. The study was conducted in one of the four wards, where patient age was the highest and their conditions most stable. Staff members included: 12 nurses (10 nationally licensed nurses, two nurse practitioners licensed by the prefecture), nine nurse’s aides, one child counselor, and two kindergarten teachers. Seven staff members worked twice during the study period, making a total of 31 staff members. Each minute of work for each staff member over the course of 48 h (8 h shifts) was recorded on 2 consecutive days on a weekend in 2008. Measurements were made on a minute-to-minute basis using stopwatches by off-duty staff members from the hospital. The content of the work was divided into six work codes:6 A, general care management; B, non-medical care; C, medical care; D, social participation; E, community life support; F, others (Table 1). The work codes were originally designed for monitoring care given
Time study of care for SMID patients 1155 Table 1 Main work codes A Life support or care management A4 Information exchange between staffs A7 Making record of the time of care A8 Making individual care plan B Life care B1,2,3 Patient hygiene, grooming B4,5,6 Clothes changing B7 Bathing B8 Toilet support B9,10,11 Meal assistance B12,13,14 Posture change B15,16,17 Transfer to/from wheel chair B18,19,20 Patient transfer B21,22,23 Posture support B30,31,32 Taking temperature B33,34,35 Indirect patient assistance B36,37,38 Environmental organization B40 Bed/linen organization B41 Laundry B42 Organization of patient goods B45,46 Communication
B Life care B49 Supervision B50 Others C Medical care C1 Medication C2,3 Suction of sputum C4,5 Tube feeding assistance C8,9 Treatment C10 Examination/measurement C11 Physician support C14 Hydration C16 Infection prevention C20 Training (non-professional) D Social participation support D1,2,3,4 Recreation (group) D5,6,7,8 Recreation (individual) D16 Transportation service E Community life support F Others F1 Cleaning task, conference F2 Break, meal
For each code, two numbers indicate preparation or cleanup and practice; three numbers, supervision, stimulative speech, and practice; four numbers, preparation, practice, cleanup, and others.
to physically disabled adults capable of expressing themselves in an institutionalized setting. Experienced staff members in the institution participated in the task of assigning the most appropriate code to each work. The activities of the staff were compiled and transformed via EXCEL to show individual patient care in order to assess the burden to the caregiver at home. Statistical analysis
Mann–Whitney U-test in SPSS (SPSS, Chicago, Il, USA) was used for statistical analysis. Informed consent was obtained from all the staff enrolled in this study. The design of the study was approved by the ethics committee of Kumamoto University School of Medicine.
Results Average patient age and bodyweight were 45.4 years and 37.3 kg, respectively. Underlying disease was as follows: cerebral palsy (CP) stemming from various causes, n = 23; sequela to central nervous system infection, n = 6; sequela to intracranial hemorrhage, n = 1; and Down’s syndrome, n = 1. Sixteen patients had motor function and IQ fulfilling the definition of SMID (Fig. 1).7 Other patients, while not classified as SMID, required equivalent medical attention due to their medical needs, as well as to difficulty adjusting to the daily life of other facilities. There were no patients who needed mechanical ventilator support. Staff work was divided three groups: direct care, common work, and work for medically dependent SMID patients in the adjoining ward (not included in this study). For direct care, average total care time was 105.4 min/patient/day (A, 2.3; B, 86.0; C, 7.1; D, 9.6; E, 0.01; and F, 0.4 min). Five patients (ID 1, 6, 13, 15, and 18) needed long care time (longer than mean + SD (35.6)). Four of them were bedridden, and all of the five suffered from increased muscle tone
Fig. 1 Oshima classification.7 Divisions 1–4 represent severe motor and intellectual disabilities. Patients with Oshima classification 5–9 can enter institutions if the patient needs medical supervision, has progressive disability, or has medical complications.
Table 2 No. tasks carried out Work code †
Nurse (n = 16) Others ( n = 15)
A
B
C
D,E,F
438 195
2695 2761
611 258
332 342
†
Including nurse and nurse practitioner. © 2015 Japan Pediatric Society
1156 T Matsubasa et al. Table 3 Care for patient 16
Date, time
Work time (min)
23 November 7:28:00 23 November 7:44:00 23 November 8:24:00 23 November 8:27:00 23 November 9:09:00 23 November 9:13:00 23 November 9:29:00 23 November 9:31:00 23 November 10:14:00 23 November 11:38:00 23 November 11:39:00 23 November 11:39:00 23 November 11:40:00 23 November 11:57:00 23 November 11:58:00 23 November 11:59:00 23 November 14:13:00 23 November 14:13:00 23 November 14:14:00 23 November 14:15:00 23 November 14:16:00 23 November 14:17:00 23 November 14:42:00 23 November 14:43:00 23 November 14:44:00 23 November 14:45:00 23 November 14:50:00 23 November 14:51:00 23 November 14:53:00 23 November 15:01:00 23 November 15:04:00 23 November 15:08:00 23 November 15:11:00 23 November 15:11:00 23 November 15:17:00 23 November 16:30:00 23 November 16:32:00 23 November 16:32:00 23 November 17:10:00 23 November 17:12:00 23 November 17:13:00 23 November 17:14:00 23 November 17:33:00 23 November 17:49:00 23 November 17:50:00 23 November 18:17:00 23 November 18:18:00 23 November 20:07:00 23 November 20:31:00 23 November 20:31:00 23 November 20:33:00 23 November 22:42:00 23 November 22:45:00 24 November 0:21:00 24 November 0:27:00 24 November 4:25:00 24 November 4:26:00 24 November 7:14:00 24 November 7:22:00
17 4 5 3 1 1 0.5 0.5 18 2 0.5 0.5 1 1 1 1 1 2 6 3 4 4 7 2.5 0.5 3 1 20 3 2 0.3 0.5 3 4 0.3 0.5 2 9
Staff ID 19 19 19 19 18 18 23 25 23 24 24 24 24 24 24 24 28 28 28 28 28 28 28 28 28 28 28 28 28 21 21 18 18 21 23 23 24 24 22 22 22 22 22 22 24 27 27 28 29 29 29 31 31 31 30 31 31 30 30
Staff classification Nurse/NP
Work content
Work code
NA NA NA NA
Meal assistance Meal assistance Teeth brushing, face washing Teeth brushing, face washing Diaper change assistance Diaper change assistance Transfer from futon to wheelchair Transfer from futon to wheelchair Hair combing Meal preparation(getting meal) Meal preparation(affixing apron) Administering medication Meal assistance Meal assistance Meal preparation (pouring milk) Meal assistance Changing clothes Transfer from cushion chair Changing clothes Diaper changing Changing clothes (pants) Clean up Meal preparation (sitting up) Meal assistance (snack) Meal assistance (snack) Meal assistance (drink) Meal assistance (drink) Meal assistance (snack) Meal assistance (snack) Nail clipping Nail clipping Diaper change assistance Diaper change assistance Diaper changing Diaper change assistance Transfer to cushion chair Transfer to cushion chair Meal preparation (setting-up table) Meal assistance Meal assistance Administering medication Meal assistance Meal assistance Tooth brushing Tooth brushing Diaper changing Diaper changing Sleep preparation Medication preparation Administering medication Administering medication Diaper change Diaper change Taking temperature Taking vital signs Diaper changing Diaper changing Meal assistance Meal assistance
B11 B11 B3 B3 B8 B8 B17 B15 B3 B11 B11 C1 B11 B11 B11 B11 B6 B6 B6 B8 B6 B8 B11 B11 B11 B11 B11 B11 B11 B3 B3 B8 B8 B8 B8 B17 B17 B11 B11 B11 C1 B11 B11 B3 B3 B8 B8 B40 C8 C1 C1 B8 B8 B32 B32 B8 B8 B11 B11
Nurse Nurse KT NA KT NA NA NA NA NA NA NA Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse Nurse KT KT NA NA NA NA NA NA NA NA NA NA NA Nurse NP NP NP NA NA NA Nurse NA NA Nurse Nurse
KT, kindergarten teacher; NA, nurse’s aide; NP, nurse practitioner.
© 2015 Japan Pediatric Society
NA/KT
Time study of care for SMID patients 1157 due to CP. Among the six work codes, B (non-medical care) required the longest time. Care time of seven patients (ID 1, 2, 6, 13, 14, 15, and 18) was longer than mean + SD (25.3). All but one (ID 18) were bedridden, and all of these 7 patients had CP with a relatively high IQ or good understanding of outer world. For code C (medical care), three patients (ID 6, 9, and 18) needed longer care time than mean + SD (8.5). All of the 3 patients had CP and needed suction of sputa. Significant differences were found between the entirely immobile group (bedridden, n = 15) and semi-mobile group (able to walk with support, n = 13) in the areas of total care time (124.6 vs 83.4 min/day, respectively, P = 0.003) and code B work time (99.1 vs 69.0 min/day, respectively, P = 0.003). The number of tasks in work codes A–F was counted. Among these tasks, the most frequently seen code B tasks were B11 (meal assistance: practice, 1361 times), B8 (toilet support, 1053 times), B3 (patient hygiene: practice, 458 times), and B17 (patient transfer: practice, 414 times). The most frequent code C tasks were C16 (infection prevention, 369 times), C1 (medication, 125 times), and C9 (treatment: practice, 118 times). During the study 4076 tasks (56%) out of a total 7632 were performed by nurses. When the number of tasks was divided into two groups: nurses and other staff members, code B, D, E, and F were similar, but for code A and C tasks, the nurses outnumbered other staff members by more than two to one (Table 2). The care work for patient 16 is an example of average time of care (Table 3). Care began at 07:28 h in the morning with meal assistance provided by a nurse’s aide, and ended at 07:22 h the next morning with meal assistance provided by a nurse. Meal assistance, diaper changing and nail clipping were performed by nurses and nurse practitioners, as well as by kindergarten teachers, a child counselor and nurse’s aides. Several tasks from several work codes were often performed within a single minute: for example meal preparation (affixing apron) and administering medication at 11:39 h, or changing clothes and transferring patient from cushioned chair at 14:13 h. Staff members were also engaged in common work (information exchange between staff, meal preparation etc.) as well as work for patients in the adjoining ward. The total time of the common work in the SMID ward was 4542.1 min/day, and work in the adjoining ward, 493.2 min/day.
Discussion This is the first minute-by-minute time study over a period of 48 h, of staff members of an institution for SMID, as far as we know. From this study we were able to reconstruct care from the side of the patient. To confirm the validity of the data, we calculated work time of one staff member. The total time measured over the course of 48 h was 16 615.2 min (direct care, 6544.6 min; common work, 9084.2 min; and work for adjoining ward, 986.4 min), which calculates to 8.9 h per shift (31 staff members in total). The study also collected supporting evidence that bedridden patients need increased care time. In addition, patients who seemed to be aware of the outer world better than others needed longer nonmedical care (daily life care).One characteristic of such patients
was tracheal stenosis. Such patients, being bedridden and requiring sputum suction, are typical of SMID patients who have greater medical care needs. This study highlighted the importance of nurses in the care of patients with SMID. Nurses carried the burden of most code B, D, E, and F tasks, in addition to code C work. Patient care and attentive observation from a professional viewpoint seem to have contributed to a good prognosis for SMID patients in institutions. In addition to C work, nurses were engaged in code A work more frequently than other care workers. Medical information transfer to staff members as well as to nurses and families of the patients seems also to have contributed to securing the good health of the patients. The option of transitioning SMID patients from full-care institutional settings to alternative environments is becoming increasingly available. Such normalization, while possibly improving the patient’s quality of life, poses serious challenges to maintenance of an adequate level of patient care. A study of the deinstitutionalization of 51 adults with intellectual disabilities and complex health problems in England suggests the need for careful and considered planning. Once elevated quality of life leveled off 1 year after relocation, four of the 51 people died of pneumonia within 2 years of relocation.8 Considering the future lives of SMID patients at home in Japan, nurse-provided non-medical and medical care, as well as the frequent attention of doctors, should not be underestimated. In an institutional setting, the presence of nurses creates a stable environment and ensures patient health. The methods by which such care may be replicated for SMID patients at home is at present a question of great importance. In Japan, suctioning sputum and tubal feeding in the home are newly added functions that will be performed by certified care workers, and such tasks are also being added to the training programs of other workers. With the completion of the course and the attainment of requisite qualifications, these workers will be able to perform these previously restricted medical tasks. The new system is expected to empower the limited human resources involved in home medical care, but at present there are few workers engaged in the medical care of SMID patients in the home. It is the opinion of the authors that some supporting systems, such as remote monitoring system for home care and coordinators to connect the medical and welfare services, should be employed to assist such care workers. Doing so would partially relieve a significant burden both from already timeconstrained professionals as well as from mothers, to whom such medical tasks most often fall. Future studies might benefit from work codes designed especially for SMID patients, rather than for physically disabled adults. Conducting the study on weekdays, as opposed to weekends, could improve the quality of the data. Finally, with regard to the work done by non-medical professionals, non-medical tasks should be further analyzed from the viewpoint of patient quality of life.
Acknowledgments We thank Yoshifumi Ishitsu for data analysis, and David Ostman for comments. This work was supported by a Grant-in-Aid for © 2015 Japan Pediatric Society
1158 T Matsubasa et al. Scientific Research to Masao Kumode from the Ministry of Health, Labour and Welfare of Japan. The authors report no conflicts of interest.
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