Providing family education and ensuring the availability of local family physicians are vital to meeting a patient's desire to die at home. Home care nursing should be introduced in the early stage after diagnosis to provide support to patients for timely decision-making.
The purpose of this study was to elucidate the circumstances and symptoms of patients with amyotrophic lateral sclerosis (ALS) using noninvasive positive pressure ventilation (NPPV) in whom death was approaching, to understand how to provide palliative care to dying patients with ALS receiving NPPV management. The participants were 6 home visiting nurses who were head or subhead nurses of a home visiting nursing agency. Data were collected conducting individual semistructured interviews and then group interviews. The results were based on qualitative analysis of the circumstances of death and prognostication and showed 5 categories: difficulties with knowing about approaching death, several signs and symptoms of knowing about approaching death, importance of feeling prepared and provision of palliative care to die at home, death caused by accident, and fate determined by the caregiver's ability. Further research is needed to collect rich data about predicting approaching death to improve end-of-life care for NPPV-dependent ALS patients who do not receive sufficient benefits from NPPV.
Purpose: This study aimed to clarify the circumstances surrounding death for people with amyotrophic lateral sclerosis (ALS) in Japan and difficulties in providing home-care end-of-life nursing for these individuals. Method: A questionnaire was mailed to the directors of 709 home-care nursing agencies located in central Japan. Results: Of 232 questionnaires returned (response rate 32.8%), 49 reported treating someone with ALS. Overall, 31% of these patients died at home, whereas 63% were admitted to hospital from a few days to months preceding death. Respiratory insufficiency was identified as the cause of death in 73% of cases, 45% of the deaths were sudden, and 27% of the deaths involved CO2 narcosis. Analysis of the reported nursing difficulties resulted in five categories: lack of adaptation to the disease or disease progression by the patient and/or their family, involvement with family, how to select/deliver care, decision-making and communication, and poor collaboration with other practitioners. Conclusion: Family care and family education are important to supporting the end-of-life process for people with ALS. Use of advance directives and collaboration with other related practitioners are recommended to enhance communication linked to psychological care and informed consent.
BackgroundIn Japan, few community-based approaches have been adopted in health-care professional education, and the appropriate content for such approaches has not been clarified. In establishing community-based education for health-care professionals, clarification of its learning effects is required. A community-based educational program was started in 2009 in the health sciences course at Gunma University, and one of the main elements in this program is conducting classes outside school. The purpose of this study was to investigate using text-analysis methods how the off-campus program affects students.MethodsIn all, 116 self-assessment worksheets submitted by students after participating in the off-campus classes were decomposed into words. The extracted words were carefully selected from the perspective of contained meaning or content. With the selected terms, the relations to each word were analyzed by means of cluster analysis.ResultsCluster analysis was used to select and divide 32 extracted words into four clusters: cluster 1—“actually/direct,” “learn/watch/hear,” “how,” “experience/participation,” “local residents,” “atmosphere in community-based clinical care settings,” “favorable,” “communication/conversation,” and “study”; cluster 2—“work of staff member” and “role”; cluster 3—“interaction/communication,” “understanding,” “feel,” “significant/important/necessity,” and “think”; and cluster 4—“community,” “confusing,” “enjoyable,” “proactive,” “knowledge,” “academic knowledge,” and “class.”ConclusionsThe students who participated in the program achieved different types of learning through the off-campus classes. They also had a positive impression of the community-based experience and interaction with the local residents, which is considered a favorable outcome. Off-campus programs could be a useful educational approach for students in health sciences.
The high prevalence of 'bedridden elderly' in Japan is at least three times higher than that of any other industrialized country. To decrease likelihood of being bedridden, it is important to cultivate and maintain the willingness of older disabled patients for rehabilitation, and to preserve functioning in activities of daily living (ADL). The purpose of this study was to identify the factors facilitating and inhibiting the willingness of institutionalized disabled older adults for rehabilitation with respect to physical, goal-attainment, psychological and cultural aspects. The convenience sample consisted of 71 disabled older adults (45 in Japan and 26 in the USA). 46 subjects (64.8%) were identified as 'willing for rehabilitation', whereas 25 (35.2%) were 'unwilling for rehabilitation'. The data were gathered using structured interviews to subjects and administering questionnaires to the nurses. The data were compared between the 'willing' and the 'unwilling', and between those from Japan and from the USA by cross-tabular and correlational analyses. The major findings in this study were as follows: (1) Factors found to facilitate willingness of older persons for rehabilitation included: high independence level in ADL, generalized endurance/stamina, lack of pain, mutual goal agreement between old people and care staff, and no presence of regressive behavior. (2) Factors found to inhibit willingness of older persons for rehabilitation included: lower independence in ADL, presence of pain, generalized little stamina, depression, presence of regressive behavior, and dementia, and expectation of another person's help all the time. Healthcare workers need to be aware of patients who are subject to factors inhibiting willingness, and to promote factors facilitating willingness, in order to prevent the elderly with disabilities from becoming bedridden. In addition, the implications of this study are for a multidimensional functional assessment to be part of the rehabilitation intake in order to better understand each individual and motivate his/her optimum level of functional ability.
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