遺傳諮詢人員的介入對新生兒聽力篩檢陽性個案母親在知識、焦慮影響程度之探討

Abstract

近年來檢驗技術的日新月異，許多先天性異常及遺傳性疾病，已經可以透過各種篩檢的方法被檢查出來。但是在篩檢進行當中，必然會產生一定數量的偽陽性個案，給受檢者及其家屬帶來一定的衝擊與影響，這是相關工作者極為重視的議題。新生兒聽力篩檢是一項新的篩檢項目，在目前的實施狀況下也有相當數目的偽陽性個案產生；再加上雖然早期治療可減輕聽障的影響，卻不能改變聽障的事實，使得新生兒聽力篩檢之諮詢變得特別的重要。 本研究主要目的是在探討諮詢人員的介入，對於新生兒聽力篩檢陽性個案的母親，在知識與焦慮層面上之影響。本研究以林口某醫學中心接受聽力篩檢的新生兒個案之母親為研究對象，進行前瞻性研究，共舉辦81場479人次諮詢工作。經追蹤共得32位未通過篩檢之新生兒。我們以是否有參加諮詢課程為條件，將母親分為實驗組與對照組(未接受諮詢者)，其中實驗組12人、對照組20人。二組母親均在尚未得知報告前先接受前測，並在得知新生兒聽力篩檢陽性反應以後再接受後測。研究工具採用結構式問卷及深度訪談的方式，進行前瞻性、類實驗性的調查。 本研究發現諮詢介入前，兩組母親特質焦慮並無統計上顯著差異。兩組知識得分無顯著差異；在諮詢介入後兩組知識得分均增加，但實驗組得分增加較對照組多，具有統計上顯著差異。而且在知道篩檢結果後，雖然兩組情境焦慮均增加，然而對照組增加較明顯且達統計上意義。 而在質性研究方面，我們發現造成母親焦慮的因素包括害怕新生兒眞的是聽障兒、擔心檢測的過程危害到小孩、擔心受到家人的指責、擔心新生兒是否還有其他健康問題等，而且母親們可能會利用自我測試來消除不確定感、逛醫院重複檢測，或查詢相關資訊去否定這項事實。普遍性的母親希望得到的資訊有居家自我檢測方法、篩檢的流程、得知報告的方法、篩檢所需費用及確立診斷後的治療等。 就以上研究結果而言，新生兒聽力篩檢陽性的確會帶給母親明顯之焦慮，唯事前且完整之遺傳諮詢，可有效提升研究對象的新生兒聽力篩檢知識並進而減緩其焦慮程度。本研究結果對於日後設計及執行新生兒聽力篩檢之諮詢，將有很大的助益。

With the advent of new technologies, various screening tests have been developed to help detect congenital malformations and hereditary diseases at the earliest time possible. Nevertheless, the impact of false positive screening results imposed on the patients, is another concern. Newborn hearing screening is a newly developed test that is known to produce a significant number of false positive cases. Moreover, in spite that early intervention can secure the future development of speech, the truth of hearing impairment cannot be altered. Therefore counseling for hearing screening test will be very important. The aim of this study is to find out the effect of counseling on maternal anxiety upon positive screening result. A total of 81 genetic counseling sessions were performed on 479 mothers who participated automatically. Among them, 12 babies had a positive screening result. At the same period, 20 babies whose mothers didn’t attend the counseling courses had positive screening result (the control group). Structured questionnaires were done for these mothers both before the counseling courses (or before their babies left the nursery for the control group), and after the doctors informed the screening result at the follow up clinic one month later. The results shown that before counseling both groups showed no difference in either anxiety or knowledge. At the second tests, knowledge increased in both groups, but more in these who received counseling. Upon positive screening results, although both groups had increased anxiety levels, the increment was large and reached statistical significance in the control group. During the interview for several mothers afterwards, the most prominent anxiety-causing factors were fear of permanent hearing loss of the baby, injury caused by the hearing test, reprimand from other family members, and other associated health problems with the baby. The mothers have tried to repeat the test in other places, or searched related information to reduce their stress. All mothers wished to know how to evaluate their babies’ hearing at home, how the hearing test was carried out, and the therapy once the diagnosis being confirmed. In conclusion, positive newborn hearing test results causes significantly anxiety to the mothers. Carefully planned comprehensive pretest counseling effectively brings down the anxiety effect once a positive result was revealed. This study also offers precious materials for future design of counseling for newborn hearing screening test.