Providing Information to Families in Newborn Hearing Screening Follow-Up: Professional Challenges

Abstract

Universal newborn hearing screening is effective only when it leads to audiological and educational follow-up. The purpose of our study was to detect the essential factors that contribute to a high-quality follow-up to families with referred babies after hearing screening in Norway. In-depth interviews of six families were performed, as well as a web-based survey focusing on information needs. Informants were families of children born from 2003 to 2009 who did not pass hearing screening. Our findings stress the importance of comprehensive information given at an early stage, although this also may be overwhelming to many families. From the point of screening and throughout audiological, medical, developmental, and educational follow-up, parents react to the quality of information, affecting their trust in professionals. This is particularly evident when decisions need to be made based on ambiguous information. Dilemmas and challenges for professionals providing information to families are explored, and factors contributing to a high-quality follow-up are described.

Keywords

Universal newborn hearing screening - parents - information - decision making - early intervention

• References

• 1 Sininger YS, Martinez A, Eisenberg L, Christensen E, Grimes A, Hu J. Newborn hearing screening speeds diagnosis and access to intervention by 20–25 months. J Am AcadAudiol 2009; 20: 49-57
• 2 McCracken W, Young A, Tattersall H. Universal newborn hearing screening: parental reflections on very early audiological management. Ear Hear 2008; 29: 54-64
• 3 Russ SA, Hanna D, DesGeorges J, Forsman I. Improving follow-up to newborn hearing screening: a learning-collaborative experience. Pediatr 2010; 126: 59-69
• 4 Hintermair M. Parental resources, parental stress, and socioemotional development of deaf and hard of hearing children. J Deaf Stud Deaf Educ 2006; 11: 493-513
• 5 Pressman L, Pipp-Siegel S, Yoshinaga-Itano C, Deas A. Maternal sensitivity predicts language gain in preschool children who are deaf and hard of hearing. J Deaf Stud Deaf Educ 1999; 4: 294-304
• 6 Calderon R. Parental involvement in deaf children's education programs as a predictor of child's language, early reading, and social-emotional development. J Deaf Stud Deaf Educ 2000; 5: 140-155
• 7 Davis A, Bamford J, Wilson I, Ramkalawan T, Forshaw M, Wright S. A critical review of the role of neonatal hearing screening in the detection of congenital hearing impairment. Health Technol Assess 1997; 1: i-iv , 1–176
• 8 Korres S, Nikolopoulos TP, Peraki EE , et al. Outcomes and efficacy of newborn hearing screening: strengths and weaknesses (success or failure?). Laryngoscope 2008; 118: 1253-1256
• 9 Hardonk S, Desnerck G, Loots G , et al. Congenitally deaf children's care trajectories in the context of universal neonatal hearing screening: a qualitative study of the parental experiences. J Deaf Stud Deaf Educ 2011; 16: 305-324
• 10 Halloran DR, Wall TC, Evans HH, Hardin JM, Woolley AL. Hearing screening at well-child visits. Arch PediatrAdolesc Med 2005; 159: 949-955
• 11 Gaffney M, Green DR, Gaffney C. Newborn hearing screening and follow-up: are children receiving recommended services?. Public Health Rep 2010; 125: 199-207
• 12 Fitzpatrick E, Angus D, Durieux-Smith A, Graham ID, Coyle D. Parents' needs following identification of childhood hearing loss. Am J Audiol 2008; 17: 38-49
• 13 Han PKJ, Reeve BB, Moser RP, Klein WMP. Aversion to ambiguity regarding medical tests and treatments: measurement, prevalence, and relationship to sociodemographic factors. J Health Commun 2009; 14: 556-572
• 14 Portnoy DB, Han PKJ, Ferrer RA, Klein WMP, Clauser SB. Physicians' attitudes about communicating and managing scientific uncertainty differ by perceived ambiguity aversion of their patients. Health Expect 2011;
• 15 Orford J. Community Psychology: Challenges, Controversies and Emerging Consensus. Chichester, West Sussex, England: John Wiley & Sons; 2008: 482
• 16 Young A, Carr G, Hunt R, McCracken W, Skipp A, Tattersall H. Informed choice and deaf children: underpinning concepts and enduring challenges. J Deaf Stud Deaf Educ 2006; 11: 322-336
• 17 Hyde M, Punch R, Komesaroff L. Coming to a decision about cochlear implantation: parents making choices for their deaf children. J Deaf Stud Deaf Educ 2010; 15: 162-178
• 18 Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). SocSci Med 1997; 44: 681-692
• 19 Orford J. Community Psychology.Theory and Practice. New ed. Chichester, West Sussex, England: Wiley-Blackwell; 1992
• 20 Rodriguez-Osorio CA, Dominguez-Cherit G. Medical decision making: paternalism versus patient-centered (autonomous) care. CurrOpinCrit Care 2008; 14: 708-713