The Volta Review - Alexander Graham Bell Association

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made an appointment with the ENT specialist who had performed BERA on their older child because they wanted “to be sure” as quickly as possible that the younger child had hearing loss. For the third family, the mother believed that it was most appropriate to take her newborn with her to her older son’s next auditory-verbal therapy session at the (re)habilitation center. Delay Between UNHS and Initiation of Multidisciplinary (Re)habilitation Care Delay of early intervention services is an important issue, which, in this analysis, appeared to be connected to the parents’ experiences and perceptions. Although all families were referred to specialized care by the UNHS program’s nurse or doctor, for 3 families this did not immediately lead to further diagnosis and the initiation of care. One family reported that they had refused to let their child undergo further testing because the sedation required for BERA testing induced feelings of anxiety as they associated it with serious medical procedures. They concluded that “a possible hearing loss” was not important enough to take such measures on their newborn child. Because the ENT specialist had to conduct BERA without sedation, the procedure failed to yield reliable information. Subsequently, the parents were told by care professionals at the (re)habilitation center that nothing more could be done and to wait and see whether or not the child showed signs of hearing loss. The parents did not undertake any further action towards diagnosis/care until 2 1/2 years later when a speechlanguage pathologist connected to the child’s school suspected that the child may have a hearing loss. The speech-language pathologist referred the parents to an ENT specialist who advised the use of BERA once more. The parents reported that they were still uncomfortable about the fact that their child would be put under sedation, but on the other hand they had become worried about a possible hearing loss. They decided to move forward with the test, which showed a profound hearing loss. Shortly afterwards, they asked the (re)habilitation center to initiate further care. The parents’ reluctance to have their child subjected to sedation for the initial BERA test and the related professional response resulted in a 2 1/2 year delay to the start of the care trajectory. Another family that was referred to a (re)habilitation center decided to withdraw shortly after admission. This is the family in which the father put pressure on the mother to abandon care, as he felt that it implied acceptance of the diagnosis and the condition. Two years later, when their second child faced a similar test result, the mother was more determined that action should be taken towards care. She received much support from the UNHS nurse to make an appointment for both children, leading to the initiation of care. The father’s emotional response to the suggestion of possible hearing loss caused a 2 year delay to the start of the care trajectory. A third family followed referral to an ENT department, but BERA did not yield any indication of hearing loss. The parents were told by the ENT 312 Hardonk, et al.
specialist that no further action was therefore required and they reported that although it appeared strange to them, they followed this advice. With the passing of time, through interaction problems with their child, they became increasingly suspicious of a possible hearing loss. Consequently, they made an appointment at the same hospital for a new BERA test, which revealed a severe hearing loss. The ENT specialist then referred the parents to a (re)habilitation center and care was initiated immediately after a delay of more than 2 years. The parents repeatedly expressed their disbelief at the first BERA results and to them it remained difficult to understand why a test procedure, which is presented as “highly reliable,” can be a major cause for delay in the initiation of care due to false negative results. These experiences indicate that aspects of testing care professionals consider routine practice could be a cause for delay because parents are not familiar with hearing loss and their perception is not based uniquely on clinical facts, but also on social and cultural aspects. This also plays a role in case of false negative test results; parents have strong faith in highly technological equipment operated by skilled medical professionals, causing them to trust test results over their own observations that indicate a possible hearing loss. This could cause delay when no active follow-up is provided. Changes in the Use of Outpatient Multidisciplinary (Re)habilitation Services Nine families who were referred to specialized care by health care professionals made one or more decisions that resulted in the initiation of care use at a different (re)habilitation center. This provides insight into the way parents experience and evaluate care. Six families reported that they perceived the travelling time to the center as a heavy burden for the whole family and therefore they decided to move to a center closer to their home or easier to access. For another family, the center’s opening hours were incompatible with parents’ working hours, which they experienced as a major obstacle to care use. Advice from care professionals was also reported as a cause for a change to another (re)habilitation center. At the first (re)habilitation center, 1 family was advised by care professionals to consult an ENT specialist for further diagnosis. Apparently, the ENT specialist was not aware of the fact that the child was already receiving (re)habilitation care and after further diagnosis referred the parents to a different (re)habilitation center further away from their home. They followed his advice because they valued his competence. Assumptions of peers about the quality of therapy and support for both child and parents were another motivation for parents to change centers. One family reported such a change after 3 months of therapy. The availability of educational support at home was at the basis of 1 family’s decision to start using care at another (re)habilitation center. The parents (Re)habilitation for Children who are Deaf 313
Page 1 and 2: Volume 111, Number 3 Fall 2011 ISSN
Page 3 and 4: Editors’ Preface Joseph Smaldino,
Page 5 and 6: The Volta Review, Volume 111(3), Fa
Page 7 and 8: 2008; Eisenberg et al., 2006), alth
Page 9 and 10: their experiences that is valuable
Page 11 and 12: Stappaerts, 2000, 2001, 2003; Van K
Page 13 and 14: For this data collection, four grid
Page 15 and 16: UNHS = Universal Newborn Hearing Sc
Page 17: Dutch-French Brussels Region, and o
Page 21 and 22: according to the ENT specialist who
Page 23 and 24: decreased and support became focuse
Page 25 and 26: early care trajectory, resulting no
Page 27 and 28: Hardonk, et al. (2010c). Investigat
Page 29 and 30: screening (ALGO) in Flanders, Belgi
Page 31 and 32: The Volta Review, Volume 111(3), Fa
Page 33 and 34: for 2 or more hours per day had hig
Page 35 and 36: University approved the study and p
Page 37 and 38: Table 1. Student demographic data S
Page 39 and 40: process to occur was 1 year. The gr
Page 41 and 42: to put students at ease so that the
Page 43 and 44: the general education setting. Inte
Page 45 and 46: Discussion Quantitative data gather
Page 47 and 48: students at the LSL school with coc
Page 49 and 50: Allen, T. E., & Osborn T. L. (1984)
Page 51 and 52: Appendix A: Parent Interview Protoc
Page 53 and 54: Appendix B: Survey for Teachers Tra
Page 55 and 56: Transitioning Students 349
Page 57: Transitioning Students 351
Page 60 and 61: Guide practitioners into new lines
Page 62 and 63: Systematic reviews are lengthy proc
Page 64 and 65: esources may be of limited value fo
Page 66 and 67: the reviewers overlooked them. Data
Page 68 and 69:
igorously used to select studies fo
Page 70 and 71:
If the aggregate subjects or studie
Page 72 and 73:
Baum, A. C., & McMurray-Schwarz, P.
Page 74:
Petersen, D. B. (2011). A systemati
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