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Maternal Anxiety and Satisfaction with Newborn Hearing Screening: The English Example Rachel Crockett, Theresa. M. Marteau, Kai Uus & John Bamford Funding: Department of Health (England). Email: [email protected] Newborn Hearing Screening Programme Evaluation. • In January 2001 a pilot study exploring the effectiveness in practice of the Newborn Hearing Screening Programme (NHSP) began in England. • The Department of Health commissioned an evaluation of aspects of this implementation including maternal anxiety and satisfaction with the screen. Research Aims I. To describe and compare anxiety, worry and satisfaction in mothers of babies undergoing newborn hearing screening and receiving different results. II. To examine the possible protective effect of knowledge in preventing worry. The Screening Process Maternity Unit: Well Baby Nursery Hearing Tests conducted on the unit prior to discharge home after a baby’s birth. If screen not completed prior to discharge, babies followed up in clinic. First otoacoustic emissions test (OAE) Bilateral clear responses No further tests Bilateral clear responses No further tests No clear responses Second OAE No clear responses Automated auditory brain stem response test (AABR) No clear responses Baby referred for audiological assessment Bilateral clear responses No further tests Comparison Groups Group 1 - clear response in both ears on OAE test. Group 2 - clear response in both ears on AABR test. Group 3 - no clear response in one ear on AABR, unilateral referral. Group 4 - no clear response in either ear on AABR, bilateral referral. Flow Chart Showing Process of Data Collection. Screening Tests, consent to participate in study. Clear responses received for both ears on screening tests. Clear responses not received for one or both ears on screening tests. Maternal anxiety and satisfaction questionnaires sent 3 weeks after screen completion. Diagnostic tests Follow-up maternal anxiety and satisfaction questionnaires sent 6 months after screen completion. Outcome Measures 1. State Anxiety 2. Worry about baby’s hearing 3. Certainty about baby’s hearing 4. Attitudes to NHSP 5. Satisfaction with NHSP 6. Knowledge about NHSP 1. State Anxiety • measured using shortened form of the State Trait Anxiety Inventory (STAI) developed by Marteau and Bekker (1992) from the 40 item STAI (Spielberger 1983). • gives a score in the range 20-80 with higher scores indicating higher anxiety. • a normal score is 35, clinical cut off is 42. • reliability in this sample was .81.(n=346) 1. A number of statements which people have used to describe themselves are given below. Read each statement and then circle the most appropriate number to indicate how you feel right now, at this moment. There are no right or wrong answers. Do not spend too much time on any one statement but give the answer that seems to describe your present feelings best. Please answer each question. Not at all Somewhat Moderately Very much (a) I feel calm 1 2 3 4 (b) I feel tense 1 2 3 4 (c) I feel upset 1 2 3 4 (d) I am relaxed 1 2 3 4 (e) I feel content 1 2 3 4 (f) I am worried 1 2 3 4 2 & 3. Worry and Certainty about Baby’s Hearing • Two separate items: 1. How worried do you feel at the moment about your baby’s hearing? 2. How certain do you feel at the moment that your baby is normally-hearing? • Response to both items measured on 7-point scale. 4. Attitude to Screening 1. For me, having my baby screened by the newborn hearing screening test was: beneficial-harmful. 2. For me, having my baby screened by the newborn hearing screening test was: important-unimportant. 3. For me, having my baby screened by the newborn hearing screening test was: a bad thing-a good thing. • =0.84 (n=354) 5. Satisfaction with Screening 1. How well informed do you feel about the hearing screening test your baby had? 2. How good did you find the information you were given about the hearing screening test before your baby had it? 3. How satisfied do you feel with the information you have been given about the result of your baby’s hearing screening test? 4. In general, how satisfied were you with the hearing screening test? • = .83 (n=338) 6. Knowledge of Screening • Items relate to information mothers are given about the screen. • 8 items in multiple choice format • Understanding assessed: • results and their meanings • reasons for no clear responses • what happens at different stages of the screen • numbers of babies referred who will be found to have hearing loss. Knowledge Questions • What are the possible results of the newborn hearing screening tests? (You may tick more than one answer) Clear response recorded in both ears Clear response recorded in one ear only Clear response could not be recorded in either ear None of the above Not sure Other (please state) • What do you think it means when a baby records a clear response in both ears on the first screening test? The baby definitely does not have a hearing loss It is highly unlikely that the baby has a hearing loss The baby might have a hearing loss It is highly likely that the baby has a hearing loss The baby definitely has a hearing loss None of these Not sure • What do you think it means when a clear response could NOT be recorded in one or both ears on the first screening test? The baby definitely does not have a hearing loss It is highly unlikely that the baby has a hearing loss The baby might have a hearing loss It is highly likely that the baby has a hearing loss The baby definitely has a hearing loss None of these Not sure • If 1000 babies had the newborn hearing screening test, about how many do you think would NOT record a clear response in one or both ears on the first screening test? All of these Most of these A few of these None of these Not sure • Why do you think a baby might NOT record a clear response? (You may tick more than one answer) The baby was unsettled The baby had fluid in the ear The baby had a hearing loss Background noise when the test was carried out The equipment was faulty None of these Not sure • Of the above reasons, which one of these do you think might be the most likely reason? • When a baby has NOT recorded a clear response in one or both ears on the first screening test, what do you think happens next? The baby has another screening test The baby is diagnosed with a serious hearing loss The baby has an operation The baby has no further screening tests None of these Not sure • Imagine 10 babies who do NOT record a clear response in one or both ears on the first screening test go on to have further screening tests. How many do you think will be found to have a hearing loss after all these extra screening tests? All Almost all of them About half About a quarter Very few of them None of them Not sure Interim Results • Total sample size 357 (response rate 52%). Group 1: 102 mothers of babies receiving clear response at OAE stage (66% response rate). Group 2: 87 mothers of babies receiving clear response at AABR stage (58% response rate). Group 3: 107 mothers of babies referred for possible unilateral loss (45% response rate). Group 4: 61 mothers of babies referred for possible bilateral loss (41% response rate). Aim I : Maternal State Anxiety 80 70 60 Mean Anxiety 50 a a a a 40 30 20 Group 1 Group 2 Group 3 Group 4 Hearing Test Result Group Dissimilar letters indicate significant differences Mother’s Comment. “I was pleased to have this test done. My 6 year old had his hearing tested at age 6 months in 1997 and failed it-he was fine (and still is) when retested. This new test has given me peace of mind and I will not have the dreadful anxiety I had in 1997.” Group 1 Mother (OAE clear responses) Mother’s Comment I did find the first test carried out...after birth somewhat upsetting, not so much as he failed in one ear, as I was sure that his hearing was ok, but because of the equipment used which caused him some distress. Mothers are highly emotional at this time, especially in the first few days after birth, and I think for the sake of a couple of weeks it would be best to leave the test until, say 1 month after birth when Mum is more able to cope. Group 3 Mother (unilateral referral) Aim I:Worry about Baby’s Hearing 7 6 5 Mean 4 Worry 3 b a b a 2 1 Group 1 Group 2 Group 3 Group 4 Hearing Test Result Group Dissimilar letters indicate significant differences Mother’s Comment “I was very pleased with the test and it helped to prevent me from worrying about at least one less thing” Group 1 Mother (OAE clear responses) Mother’s Comment “Baby failed two tests after birth, I feel this has put undue torture onto the family about whether our baby is deaf or not. If fluid in the ears affects results, then the tests should not be given shortly after birth. At the end of the day, if the baby is deaf then it’s deaf, what difference does it make if you find out 2 days after birth. I feel the failed tests just make parents worry more, when there’s plenty of things to worry about already.” Group 3 Mother (unilateral referral) Aim I: Certainty about Baby’s Hearing 7 6 5 a a b 4 Mean Certainty 3 b 2 1 0 Group 1 Group 2 Group 3 Group 4 Hearing Test Result Group Dissimilar letters indicate significant differences Mother’s Comment “I am glad you do this test as it helps to give me peace of mind to know that my baby’s hearing is fine and I welcome any sort of test that can do this and doesn’t harm the baby. Well done and keep up the good work.” Group 2 Mother (AABR clear responses) Mother’s Comment “ Even though I was told that there is little chance that my baby has a hearing problem it still causes me and my husband some concern. Would it not be better to conduct the tests after all possible fluid in the ear canal has gone?” Group 3 Mother (unilateral referral) Aim I: Attitudes towards NHSP 7 6 a a 5 b b Group 3 Group 4 Mean Positivity of 4 Attitudes 3 2 1 Group 1 Group 2 Hearing Tests Result group Dissimilar letters indicate significant differences Mother’s Comment “I found the test very helpful. The lady doing the test was excellent, calm and informative. I feel lucky to have been involved as it could pick up any problems early and they could, if possible, be sorted out and this would perhaps prevent any language problems etc in the future. Thank-you.” Group 1 Mother (OAE clear responses) Mother’s Comment “Even though the test is beneficial, I feel doing it straight away in hospital is a bad idea as mums can feel very protective towards their baby and hearing bad news can be very upsetting, especially for 1st time mums. I wish I had left the test now and waited for a few weeks ( as if there was fluid in one ear, it would have cleared by then). I could have been left worrying unnecessarily and if a 1st time mum this could lead to depression. Also, it took nearly an hour to do and the tester kept prodding my baby and trying to stick on the pads. I found this distressing as my baby was only a day old.” Group 3 Mother (unilateral referral) Aim I: Satisfaction with NHSP 7 a,b a b,c c 6 5 Mean 4 satisfaction 3 2 1 Group 1 Group 2 Group 3 Group 4 Hearing Test Result Group Dissimilar letters indicate significant differences Mother’s Comment “The test was very quick and the tester was very reassuring and seemed extremely knowledgeable and happy to answer my questions. Best of all it did not disturb my baby at all.” Group 1 Mother (OAE clear responses) Mother’s Comment I think the newborn tests should not be carried out in hospital wards because they are too noisy, also maybe not the day after either as fluid in the ears after birth. Put both of these together, it wastes a lot of time and money. I think it would be better if all babies were given an appointment shortly after birth. Group 3 Mother (unilateral referral) Aim 1:Summary of Findings Outcome Differences Gp1 Gp2 Gp3 Gp4 1.State anxiety 0 0 0 0 2. Worry 0 0 3. Certainty 0 0 4. Attitude 0 0 5. Satisfaction 0 0 0 Aim II: Knowledge about NHSP 8 a a a a 7 6 Mean Knowledge 5 4 3 2 1 0 Group 1 Group 2 Group 3 Group 4 Hearing Test result Group Dissimilar letters indicate significant differences Mother’s Comment “Very informative and (well) explained when my baby was unable to give a clear result for the first test. A second test was carried out but only after it had been fully explained what the procedure would be.” Group 2 Mother(AABR clear responses) Mother’s Comment “Third info leaflet (failed 2 tests) provided little additional info. At this point I was interested in % of babies, who had failed 2 tests, having hearing loss and unable to find this out from leaflet or person doing test. You also need to differentiate between unilateral hearing loss and bilateral hearing loss and give some idea of implications of former (perhaps separate leaflets for each).” Group 3 Mother (unilateral referral) Aim II: Correlates of Knowledge about NHSP Group 3 Worry Certainty Knowledge Worry -.578** -.045 Certainty .096 Knowledge Group 4 Worry Certainty Knowledge Worry -.421** -.161 Certainty .324* Knowledge * correlation significant at 0.05 level, ** correlation significant at 0.01 level. Knowledge, Worry and Certainty. • Aim:to explore relationship of knowledge about NHSP and worry and certainty about baby’s hearing. • Levels of certainty and worry compared between those who got each knowledge item right and those who got each answer wrong. • Test conducted separately for mothers of babies referred unilaterally and those referred bilaterally. Knowledge and Certainty in Group 4 (bilateral referral). • 7/8 knowledge items-no association • 1 knowledge item did show an association: Which of these reasons do you think is the most likely for the baby not recording a clear response? The baby was unsettled The baby had fluid in the ear The baby may have a hearing loss Background noise when the test was carried out The equipment was faulty None of these Not sure Worry and knowledge of most likely reasons for no clear responses in Group 4. 7 6 5 Mean worry 4 3 2 1 Correct (n=49) Incorrect (n=5) Understanding of most likely reasons for no clear responses Certainty and understanding of most likely reasons for no clear responses in Group 4. 7 6 5 Mean 4 certainty 3 2 1 Correct (n=49) Incorrect (n=5) Understanding of most likely reasons for no clear responses The Possible Protective Effect of Knowledge • Numbers were small. • Correlational design so cannot infer causality. • But suggests if there is understanding that the most likely reason for no clear responses is not hearing loss, getting this test result causes less uncertainty and worry. Summary • Overall there are high levels of satisfaction with, and positive attitudes to, NHSP and levels of state anxiety in the normal range following the screening. • Receipt of results suggesting possible unilateral or bilateral hearing loss are associated with: • higher levels of worry and uncertainty. • less positive attitudes • lower levels of satisfaction Summary • Among mothers of babies receiving a bilateral referral there was an association between higher knowledge and greater certainty suggesting a protective effect of knowledge. • Further analyses will be conducted when data collection is complete in July 2004.