Understanding the Response of Parents to Newborn Hearing Screening

Transcription

1 Understanding the Response of Parents to Newborn Hearing Screening Robert C. Nutt, MD 1 Track: EHDI Program Enhancement; Family Perspectives and Support Collaborators Suzannah J. Iadarola, Ph.D., BCBA-D 1, Mark S. Orlando, PhD, MBA 2, Scott McIntosh, PhD, 3 Peter Veazie, PhD 3, James Dolan, MD, 3 Susan L. Hyman, MD 1 Affiliations 1 Division of Neurodevelopmental-Behavioral Pediatrics, University of Rochester Medical Center, Rochester, NY 2 Department of Otolaryngology, Division of Audiology, University of Rochester Medical Center, Rochester, NY 3 Department of Public Health Sciences, University of Rochester Medical Center, Rochester, NY

2 Disclosures No financial conflicts of interest AAP EHDI Leadership Team Monroe County LEICC Task Force on Hearing

3 Introduction Incidence: 2 to 3 of every 1,000 children in the United States are born deaf or hard-of-hearing Speech and language development is most intensive during the first three years of life Early identification of hearing status allows for integration of services aimed to facilitate development

4 Average Age at Diagnosis Before 1993: After 1999: 2 ½ to 3 years of age 2 3 months of age (White, 2008; Hoffman & Beauchine, 2007; Harrison et al., 2003) 4

5 Universal Newborn Hearing Screening and Child Development: A Change in Reference Birth to 1 month 2 to 3 months 2 to 3 years

6 Russ, et al. (2004) Arch Dis Child. 89: doi: /adc Matthijis, et al. (2012) Journal of Deaf Studies and Deaf Education 17:4.

7 Significance Understanding how parents respond to the results of newborn hearing screening and whether they knowingly or unknowingly modify their behavior towards their child will assist in identifying where to focus staff and financial resources and attention for parent support around the time the screening results are shared and while they are awaiting their follow up appointment for rescreening and/or confirmatory testing.

8 Qualitative Methods Grounded Theory, Framework Approach, Social-Ecological Model Recruitment purposive sampling of professionals and parents Key Informant Interviews & Focus Groups Professionals (n=12), Parents (n=11) Qualitative Analysis Independent coding of transcripts for themes Convergence Committee; triangulation Categorization of themes into theory-based model

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11 The Social-Ecological Model (SEM) Public Policy Community Organizational Interpersonal Individual

12 All infants born at URMC or HH with Inpatient Newborn Hearing Screen Result = Did Not Pass Awaiting FUA with Audiology Recruit via Brochure & Reporting Completed FUA with Audiology Recruit Via Database Query & Letter from Clinic Key-Informant Interviews EDHI coordinator (n=1) E.I. director (n=1) Audiologists (n=2) Hearing Screener (n=1) Nursery Pediatrician (n=1) General Pediatricians (n=4) Social Work OB floor (n=1) Teacher of the Deaf (n=1) Interviews n = 6 parents ReScreen/Dx: PASS CLEARED Focus Group A1 n = 4 parents ReScreen/Dx: DNP DIAGNOSIS Focus Group B1 n = 3 parents Focus Group A2 n = 4 parents Focus Group B2 n = 2 parents Parent Interview (n=1) DATA = TRANSCRIPTS OF RECORDING FROM EACH SESSION

13 Narratives from Parents & Professionals

14 Internalizing & Externalizing Emotional Experience Emotional Response of Parents Behavioral Response of Parents

15 I think I was just really anxious. Nervous and anxious because I was so sure that she was fine but at the same time, like in the back of my head it s like well maybe she s not and then what? But just being really anxious to just get it over with. [ Parent Focus Group ] Emotional Response

16 What will happen next? Waiting to see if she would hear. It interferes with the bonding process, I think. It feels like you don t know your child, your baby until you know if they can hear you or not. I hope that that, I think that that after going into the ABR, it felt like I knew her better. You know? [ Parent Focus Group ] Waiting & Anticipation

17 We tried to do more research to prepare ourselves I think and like, we didn t know anything about it so we didn t realize how common it really is for hearing loss in children. I think it was just the more we kind of researched and educated ourselves the better we felt like, okay if she ends up having hearing loss, she ll be fine Acknowledgement & Acceptance Desire for Information [ Parent Focus Group ]

18 It wasn t part of their dream, wasn t part of their plan. Every baby is conceived with a dream of how their future will look It s a death of a dream in a way [ Prof Interview (SLT/TOD) ] Emotional Response

19 Feeling that there might be an issue with hearing I ve been trying to look at him more in the eyes and trying to use hand gestures when necessary and showing him the bottle, having him look at my face when I m trying to smile and try to calm him down [ Parent Interview] Enhanced Interaction & Testing

20 I try to do more stuff to see if he can hear me. Like little, different noises with my mouth and see if he can pick it up or look in that direction or move his head in that direction. That s really it. I try to do that pretty often for my reassurance [ Parent Interview] Enhanced Interaction & Testing

21 I would interact the same way. [ Interview: hearing parent (baby DNP/passed)] Even if he was hearing, there would be no difference... I would have loved him. [ Inverview: deaf parent, deaf baby ] No Difference

22 First Impressions Provider Knowledge Communicating Results Desire for Information

23 In terms of bonding, I don t know if I would feel comfortable because I am not educated in pursuing that avenue. [ Prof 1 (Audiologist) ] Provider Knowledge

24 As a provider, I hadn t thought about it until I had a baby myself and they did the hearing screen and then they didn t even tell me the results they just said here are your results and handed me a paper that I had to read which I thought was really kind of scary because it was just like oh yeah this isn t that important but it s majorly important and I think it does sort of diminish the importance of the test in the parent s mind Communicating Results [ Prof focus group (Pediatrician) ]

25 We ve tried to teach our technicians that Your job is just to basically look like you have no idea, that your objective is to perform the test, and pass that information on to an audiologist for interpretation. [Prof Interview, Audiologist/NBHS Admin] Provider Knowledge Desire for Information

26 She explained that it s common in newborns that they will have fluid in their ears and that can make it difficult to get the screen. That reassured me, knowing that that is fairly common the explanation of why she couldn t get the result made sense and she s, she wasn t, she didn t make me feel alarmed at all and [the pediatrician] wasn t very concerned either. So, again that reassured me to not be too worried yes at that point. Reassurance Pediatrician s Role [ Parent Interview ]

27 Parent Experience between Discharge and Follow Up Waiting The Pediatrician s Role

28 We kind of just good willing a lot and just kind of waiting to see what the test brought. Trying not to go crazy in between because we just didn t know. So it was kind of like what s the point in driving yourself crazy? [ Parent Focus Group ] Waiting

29 Yes and [the pediatrician] wasn t very concerned either. So, again that reassured me to not be too worried yes at that point [ Parent Interview] Pediatrician s Role Reassurance

30 The Community Influence of Deaf Community and Parent Awareness of Deafness on Parents Response to Newborn Hearing Screening

31 Coming at it from my own personal experience I realized that she s going to be fine, she s going to turn out perfect so it s not the end of the world. [ Parent Focus Group, mother with CI] Community Awareness Reassurance

32 Being deaf and growing up in that life is difficult and I didn t want that for them [previous twins] but I actually wanted [CHILD] to be deaf because I wanted them to have the same experience [as siblings]. [ Parent Interview, mother of 5 th generation deaf child ] Community Awareness Provider Knowledge

33 Local, State, National Policies on NBHS Community Awareness Public Policy Waiting Communicating Results Community Organizational Interpersonal Pediatrician s Role Provider Knowledge Desire for Information Reassurance Waiting & Anticipation Emotional Response Individual Emotions Enhanced Interaction & Testing No Difference

34 Opportunities for Parent-Focused Improvements Enhancing Support between Screening & Follow Up Improve interactions between parents & professionals Improve information sharing at time of screening Promote healthy parent-child interactions through materials that inform parents of how to interact with their baby if he or she did not pass the hearing screen Reduce wait time Develop educational programs to enhance primary care providers knowledge about newborn hearing screening

35 Strengths Uses qualitative methods to collect rich narratives from both parents and professional stakeholders Limits recall bias through prospective recruitment Applies family-centered care to a universal screening program Limitations Qualitative is generally considered not generalizable Single health system Low participation of parents whose child DNP / Pass

36 Conclusions A qualitative investigation of the parent experience characterized the intimately personal experience of a parent in the context of an inherently complex screening program. Acting on these opportunities may ensure healthy parentchild interaction during this period and potentially have lasting positive effects on the child s developmental potential as well as the relationship between the parents and their child.

37 Acknowledgements Neurodevelopmental & Behavioral Pediatrics Susan L. Hyman, MD Stephen Sulkes, MD Suzannah J. Iadarola, PhD, BCBA-D Susan Hetherington, PhD Tristram Smith, PhD Melissa Pennise, MPH Division of General Academic Pediatrics Peter Szilagyi, MD Constance Baldwin, PhD Cynthia Rand, MD, MPH Stephen Cook, MD, MPH Department of Audiology Mark Orlando, PhD, MBA School of Public Health Science James G. Dolan, MD Scott McIntosh, PhD Peter J. Veazie, PhD Nancy Chin, PhD, MPH Ann Dozier, RN, PhD Financial Support T32 Dr. Nina Schor, MD, PhD, Chair, Department of Pediatrics Strong Children s Research Center Bradford Fellowship Haggerty-Friedman Psychosocial Fund EHDI Support (Travel): AAP, CDC, MCHB 37

38 Questions? Comments?

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40 Parent Emotions worry frightened scared anxious surprised helpless waiting wondering overwhelming disappointed uncomfortable concerned nerve-wracking reassured hope trust confidence eager to know answers Emotions

41 When you get your appointment if the appointment wasn t for a month and a half, then what are we supposed to do with that time of not knowing? [ Parent Focus Group ] Desire for Information Waiting

42 It s done by a technician who probably doesn t know why they re doing. There has been limited follow-up or little discussion with parents for a no-pass screening. So, I think often families leave the hospital feeling like, either two things. One, there s not really a problem because there s been little discussion or oh my goodness there s a huge problem. What am I going to do? Grieve. Those types of things because there hasn t been a discussion with a doctor or a nurse or someone who knows something about hearing loss. [ Prof Interview (SLT/TOD) ] Provider Knowledge Communicating Results

43 I don t necessarily want to initiate that conversation unless I know So, we talked in very vague terms, very generalized terms because the parents wanted to know but didn t really want to know and I didn t want to commit to anything. So it just ended up being let s see what happens at audiology and we ll talk again but it didn t feel particularly satisfying [ Prof focus group (Pediatrician) ] Provider Knowledge Pediatrician s Role

44 There is a percentage [of parents] that will say I just went to have my child in for their well child check with their pediatrician and their pediatrician said not to worry I feel as an audiologist that I m lower on the food chain than the pediatrician who s the know all for that child s health and the parents are going to listen to their pediatrician versus me and it s like oh man I hope you don t come back in three years as a late ID and now you re in. So that s an obstacle I think that s frustrating that some community physicians are not on board with the importance of the screening Pediatrician s Role [ Prof Interview, Audiologist ]

45 I think, just being in Rochester, the Deaf community here is so strong that there s a lot of awareness knowing that we have a Deaf community, Deaf schools, interpreters it s so much less stigmatized and it s so much more, like people just understand it more. [Prof Focus Group, Pediatrician ] Community Awareness

46 The nurses were not at all invested in my kid s hearing. I don t think they cared at all. I mean they were great people but they just didn t care about my son s hearing and my OB wasn t that interested in my son either. He was like good he s healthy. Great. He s breathing. He s not going under lights today. Everything is fine and mostly she was interested in me. So, the person who might have the most opportunity might be the lactation consultant, I think. [ Parent Interview ]