Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Fumiyo Tamura1, Sae Genkai2, Kimiko Hobo1, Takeshi Kikutani1,2, Ken Yaegaki3 1 Division of Rehabilitation for Speech and Swallowing Disorders, Tama Oral Rehabilitation Clinic 2 Division of Oral Rehabilitation, Graduate School of Life Dentistry at Tokyo 3 Department of Oral Health, The Nippon Dental University The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Background of dysphagia therapy for children Dysphagia therapy is provided in a variety of ways around the world. The speech therapist assumes the rehabilitation or treatment of dysphagia. In contrast, dysphagia has been inspiring many Japanese dentists to treat or rehabilitate the condition. The authors treat children with dysphagia at the university hospital or clinic, not in private practices. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Objective The aim of this study was to determine if the present dysphagia therapy of disabled children is enough to relieve caregiver’s childcare burden. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Caregiver Profiles Ages Childcare person 16 14 12 10 N 8 15 6 10 4 2 0 1 20' 30' 40' 1 1 50' 60' 28 26 24 22 20 18 16 N 14 12 10 8 6 4 2 0 28 Mother 1 2 Father Grand mother The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Children’s Profile Gender Main disease Trisomy 21 Other chromosome abnormality 4 Boys/Men 10 3 12 16 Girls/Wo men Cerebral Palsy 5 6 Developmen tal retardation Others The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Subjects They have received dysphagia therapy at least more than 3 months in our clinic, ranging from 16 to 473 months including treatment at other clinics. Prior to the survey, the purpose and the protocol were explained to the subjects to obtain their consent. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Procedure Administration of a questionnaire for feeding, and Nakajima’s Childcare Burden Scale (NCBS) were given to each mother after at least 3 months of dysphagia therapy. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Questionnaire items section I Basic information For each participant Numbers of brothers or sisters Age and Gender General condition Medication For caregivers Age Family configuration Who takes care of the child? Do you have any help when feeding your child? The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Questionnaire items section II Re: the support for feeding your child Do you have any counselor for your child’s mealtime? What support do you need for your child’s mealtime? Re: mealtime of your child Did your child have any trouble with bottle feeding and weaning? Who spoon-feeds your child routinely? In what type of chair does your child sit while eating? How long does it take your child to eat a meal? What type of diet does your child eat? Has your child taken a tube feeding? Has your child had a tracheostomy? Has your child received suctioning from oral, nasal or tracheostomy? What anxiety do you have during child’s mealtime? The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Questionnaire items section III Regarding dysphagia therapy How long have you and your child received dysphagia therapy? What professional was in charge of the treatment? Are you satisfied with dysphagia therapy? Was the eating problem improved after receiving dysphagia therapy? Does your burden of feeding decrease after receiving dysphagia therapy? How often do you wish to receive dysphagia therapy? Which gender do you prefer to treat your child? Tell us what other things we can do to help you. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Nakajima’s Childcare Burden Scale (NCBS, 1999) Items Category A; Items of social restriction Category B; Items of negative feelings for child Q1 I cannot adequately comfort my child. Q2 I feel the burden of childcare rather than my regular works like housekeeping. Q3 I have no privacy with my child. Q4 I feel that my child poses a problem for my social activity like having a hobby or learning. Q5 I am angered by my child. Q6 I am afraid I will not receive any appreciation for my work with my child. Q7 I don’t understand my child’s thinking. Q8 I sometimes lose control because of my child. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Procedure NCBS has 8 items and the highest score (greatest burden) would be 40. We divided the group into two parts: High burden group; score 21 and above, and Low burden group; score 20 and below. Moreover, we have divided the 8 items into two categories; category A includes Q1 to Q4 which measures the caregiver’s social restriction, and category B includes Q5 to Q8 which measures the caregiver’s negative feelings for the child. Total score of each category was used for the analysis. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Statistical analysis Correlations between the items were statistically analyzed by the chi-squared test , correlation coefficient, Mann Whitney U-test and one-way analysis of variance using Windows SPSS Ver. 18. Statistical significance was accepted at p < 0.05. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Results of NCBS Q1; comfortlessness Category A; Items of Q2; burden social restriction Q3; no privacy N=28 2 10 6 7 8 9 6 9 7 1 4 5 4 6 very little Q4; problem for social activity 4 Q5; anger 3 10 2 8 17 4 4 sometimes 3 1 occasionally frequence Category B; Items of Q6; unappreciation negative feelings for child Q7; child's response 11 6 9 Q8; behaviour control 9 20 0% 6 2 3 6 1 3 5 21 20% 40% 60% 80% 100% The Nippon Dental University, Tama Oral Rehabilitation Clinic always Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Correlation with age in months and NCBS score N=28 70 NCBS score 60 50 40 y = 0.0107x + 30.447 R² = 0.0042 30 20 10 0 0 100 200 300 Age in months 400 500 n.s. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Relationship between main diseases and NCBS N=28 100% 1 80% 2 5 2 2 60% 5 40% 20% 3 5 2 1 0% Trisomy 21 Other chromosome abnormality Cerebral palsy Developmental retardation Low group High group NCBS score The Nippon Dental University, Tama Oral Rehabilitation Clinic Others p=0.612 Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Relationship between family configuration and NCBS N=28 100% 1 80% 11 60% 6 40% 20% NCBS score High group Low group 10 0% nuclear family multiple generations living together p = 0.081 The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Relationship between tube feeding and NCBS N=28 100% 80% 5 4 3 60% NCBS score High group Low group 40% 9 6 20% 1 0% have tube use to have tube no tube p = 0.366 The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Relationship between with/without counselor and NCBS N=28 100% 5 80% 60% 7 NCBS score High group 40% Low group 14 20% 2 0% absence presence p < 0.05 The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Relationship between with/without counselor and NCBS Category A: social restriction Category B: negative feelings for child 20.0 20.0 Total score N=28 N=28 15.0 15.0 10.0 10.0 14.6 5.0 10.1 0.0 5.0 8.9 8.2 0.0 absence presence p < 0.05 absence The Nippon Dental University, Tama Oral Rehabilitation Clinic presence p = 0.176 Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Relationship between periods of dysphagia therapy and NCBS 100% 3 80% N=28 9 60% NCBS score High group 40% 20% Low group 10 5 0% more than 12 months within 12 months p < 0.05 The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Relationship between periods of dysphagia therapy and NCBS Category A: social restriction Category B: negative feelings for child 20.0 20.0 Total score N=28 N=28 15.0 15.0 10.0 10.0 13.3 5.0 9.5 0.0 5.0 9.7 6.8 0.0 12 months after within 12 months 12 months after within 12 months p=0.068 p = 0.057 The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children After dysphagia therapy N=28 Does your burden of feeding decrease? 15 Was the eating problem improved? 9 4 25 3 yes neither no Are you satisfied with the treatment? 26 0% 20% 40% 2 60% 80% 100% The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Positive comments from caregivers following dysphagia therapy I I become less anxious. After dysphagia therapy, I could understand the appropriate food texture for my child. Before receiving the therapy I thought the problem would never end, now I have hope that it will. I am more confident preparing food for my child. My child seems happy to be able to enjoy the taste of food. Before receiving dysphagia therapy, he took tube feeding only. But now he can eat pureed food and swallow liquid. Moreover, he doesn’t dribble saliva. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Positive comments from caregivers following dysphagia therapy II Her dietary intake has increased. Because of this reason, she has greatly improved. Slowly, I see that she begins to take more regular food. I know her oral function has improved. I was usually afraid about my feeding skills. Now I no longer worry about those things. Now I know what I have to do after receiving dysphagia therapy. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Negative comments from caregivers after dysphagia therapy I haven’t seen a positive effect of dysphagia therapy yet. My son eats minuscule amounts of food, so I still feel feeding him is a burden. I wish she can eat more solid foods. Hopefully, she will eat more regular foods similar to what her family eats. I still have to do many dysphagia training sessions everyday. So my burden doesn’t decrease even now. I have to take my child to several hospitals because she has multiple disorders. I get very tired to visit so many hospitals including dysphagia therapy. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children About dysphagia therapy Which gender do you wish your therapist should be, man or woman? N=28 either one, 9 woman, 19 The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children How often do you wish to receive dysphagia therapy? 4 times a year, 6 twice a month, 1 N=28 every month, 12 6 times a year, 7 The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Discussion We thought that receiving dysphagia therapy for disabled children would relieve the caregiver’s childcare burden. Previously, we have made a hypothesis that age, the children’s physical condition or medical care needed would increase to childcare burden of caregivers. However, contrary to our expectation, these factors had no relationship using the NCBS. The presence of a counselor and the period of dysphagia therapy affected the caregiver’s childcare burden. From these results, we should give extra consideration to caregiver burden when designing dysphagia therapy. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Conclusion Just being enrolled in dysphagia therapy alone does not reduce the burden associated with eating. Therefore, we might want to increase our focus in therapy toward helping the caregiver cope with the burden of feeding their child. The Nippon Dental University, Tama Oral Rehabilitation Clinic Dysphagia therapy alone is not able to relieve the caregiver’s burden caused by the dysphagia children Acknowledgement This study was supported in part by a Research Grant for the Ministry of Education, Culture, Sports, Science and Technology, Japan (Grant # 23593106). The Nippon Dental University, Tama Oral Rehabilitation Clinic
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