| Objective:This study based on motor neuron disease and primary family caregivers of home care needs as the basis,combining with the characteristics of motor neuron disease of disease progression and design research and development application in motor neuron disease in home care assistant communication system,help the motor neuron disease timely express their needs,establish a good two-way communication between patients and caregivers,improve the quality of the survival of patients,alleviate caregiver burden of care,improve their psychological health,improve the quality of life.Methods:This study includes three parts.The first part is the investigation of the burden of primary caregivers of patients with amyotrophic lateral sclerosis at home and the analysis of the influencing factors.A total of 124 pairs of ALS patients and their primary caregivers who met the inclusion criteria in the inpatient and outpatient follow-up in the neurology department of a level-A general hospital in Taiyuan City,Shanxi Province from January 2019 to May 2020 were selected as the subjects by convenience sampling method.Face to face questionnaire was used to comprehensively evaluate caregivers’ care burden by using self-designed general information questionnaire of patients and caregivers,revised ALS functional rating scale,caregiver burden scale,quality of life scale,self-rating anxiety scale and self-rating depression scale.SPSS 21.0 software was used to collate and analyze the data,frequency(constituent ratio)was used to describe the counting data,and chi-square test was used to test the differences between groups.Multiple linear regression was used to analyze the factors affecting caregivers’ self-perceived burden in each dimension and total score.Ordered Logistic regression was used to analyze the influencing factors of self-perceived burden rating.The second part is a qualitative study on the home care needs of patients with motor neurons.Eleven primary family caregivers of patients with motor neuron disease(MND)who were admitted to the Department of Neurology in a Grade III,Grade A general hospital in Taiyuan,Shanxi were selected as the research subjects by the method of objective sampling.Data were collected in the form of prospective research design,semi-structured form and face-to-face in-depth interview,and data were analyzed by Nancy phenomenology 7-step analysis method.The third part is the development and verification of eye movement assistant communication system for MND patients based on artificial intelligence.We developed an eye movement assisted communication system for patients with MND based on web cameras and artificial intelligence methods.First,web camera collects the video stream signals of the patient’s specific blinking actions(such as: blinking twice,three or four times in a row,etc.);secondly,a two-step method(Viola-Jones algorithm with traditional machine learning method)and one-step method(convolutional neural network)is used to identify the open/closed eye state of each frame of the video stream,respectively;finally,count the number of "0" contained in the open/closed eye binary time series,that is,the number of closed eyes.On this basis,determine the patient’s intention to express.For example: if there are two “0”s in a 1s sequence,corresponding to two consecutive blinks,indicating that there is a need for sputum suction;if there are three “0”sin a 1.5s sequence,corresponding to three consecutive blinks,indicating that there is a need for hobbies(for example: watching TV,listening Music,etc.);if there are four "0" s in a 2s sequence,corresponding to four consecutive blinks,indicating that there is a need for stool processing.Results:Results of the first part: all patients and their caregivers completed the questionnaire and regarded it as one valid questionnaire.A total of 124 questionnaires were sent out and 120 valid questionnaires were received,with an effective rate of 96.77%.The total score of caregivers’ burden of ALS patients was(63.63±16.36),which was moderate to severe burden.(1)There were 7 indicators of personal burden,including health status,understanding degree of the patient’s disease,anxiety grade,total score of anxiety standard,energy(caregivers),functional level grade and disease severity score,which were statistically significant(P<0.05).(2)the burden of responsibility in 11 indexes caregivers gender,health,having a care or a nanny,anxiety,classification,functional level classification,anxiety score standard(care),energy and emotional functions(care),mental health(care),mental health overall rating(care),disease severity score was statistically significant(P < 0.05);(3)the burden of total 11 indexes have health,without a care or a nanny,understanding of the disease in patients with horizontal classification,anxiety,anxiety,classification,function standard score,energy(care),emotional functions(care),mental health(care),and overall mental health(care),disease severity score was statistically significant(P < 0.05).(4)The total score of standard anxiety was the influencing factor of personal burden(R2=0.518),burden of responsibility(R2=0.605)and total score of burden(R2=0.755).(5)There were statistically significant differences in the understanding of disease,total score of anxiety criteria,energy(caregivers)and disease severity in burden grading(P<0.05).(6)The total score of anxiety standard and the understanding degree of patients’ disease were the influencing factors of ALS burden grading(P < 0.05).The higher the total score of anxiety standard,the greater the caring burden(OR=1.351,95%CI: 1.038,1.759);The burden of caregivers who did not know the patient’s disease was 0.305(0.107,0.593)times that of caregivers who knew the patient’s disease well.The second part of the results of qualitative research: from the interview with the caregivers of home care experience extracted four topics:(1)the patient is first to meet the basic physiological needs,which patients with the progress of the disease,gradually lose the language communication ability,the ability to care for daily life,but not by normal language communication,for help in time,and thus can lead to depression,depression of patients.At the same time,the heavy daily care leads to the huge burden of caregivers.(2)on the prognosis of the disease in patients with full of hope and pity,namely the caregivers of patients with the development of the prognosis of diseases,disease status,living condition is more understanding,manifests the tired,helpless,sadness and other emotions interweave,but more is for patients of pity,forward to a better communication with the patient,help to reduce the bad feelings between each other.(3)The support of grateful families,that is,the heavy burden of care will conflict with the role of caregivers,and will also be affected by family environment,economic income and other objective factors.Caregivers,especially spouses,feel guilty about their children’s fertility and still appreciate the support of family members.(4)the most hope to get help,that is,the vast majority of caregivers want staff to help,eager to find out more about the latest treatment plan and progress of the disease,to obtain more convenient,more powerful medical resources,expect to get more professional nursing way,willing to try any feel helpful treatments,the new technology can promote the communication between each other are interested in,but will be affected by many factors such as price,use effect.The third part of the auxiliary communication system development and verification results: In the two-step method,the face/eye detection success rate of the Viola-Jones algorithm is about 90%.When the patient doesn’t face the camera or wears a mask on the face,the Viola-Jones algorithm will miss the detection.BP artificial neural network,support vector machine and random forest method are used to establish the eye open/closed eye state recognition model.The recognition accuracy of the random forest model is higher,reaching about 96.20%,and the model is more robust and stable.In the one-step method,the convolutional neural network model directly uses the original image as input without the Viola-Jones algorithm,so there will be no missed detection problems.The accuracy of the open/closed eye state recognition model is 94.25%.The practical application feedback of the MND patient-assisted communication system can fully show that the design of the system can basically meet the basic care needs,and the satisfaction is good in the aspects of ease of learning and ease of use.It is helpful to reduce the care burden of caregivers and improve the quality of life.Conclusion:The caregivers of motor neuron disease patients had a moderate to severe burden in home care.The burden of daily care is mainly reflected in the need to continuously meet the basic physiological needs of patients,while the communication barriers between them increase the difficulties of nursing and the lack of emotional communication.Based on the care of the patient’s basic needs,fully according to the characteristics of the motor neuron disease progression and caregivers comprehension,execution,adherence to research and development design of the communication system,can effectively capture the MND patients blink action and identify their intentions,help patients and caregivers has established the good two-way communication,improve the physical and mental experience,lighten the burden of care,improve the quality of life. |
PDF Full Text Request