Abstract
Aims: To determine key themes from parents' comments on paths to diagnosis and intervention for their children with hearing loss, following introduction of at-risk neonatal hearing screening and modification of distraction test screening for infants not at-risk.
Methods: Parents of children born in 1993 in Victoria, Australia, who were eligible for screening via the Victorian Infant Hearing Screening Program and who were subsequently diagnosed with a permanent congenital hearing loss and fitted with hearing aids prior to the year 2000 were asked to complete a semi-structured questionnaire shortly after aid fitting. Two researchers independently analysed parent comments using the constant comparative method.
Results: Parents of 82 children (61%) replied to the questionnaire. Themes analysis revealed a generally positive response to neonatal ABR screening, with a mixed response to the distraction test; powerful emotions experienced by parents at diagnosis including denial and shock; frustration arising from delays in diagnosis, and communication difficulties with providers. Special difficulties testing children with other medical and developmental problems, confusion about tympanostomy tube insertion, and difficulty with wearing hearing aids were also reported. Some children had experienced problems in the school setting. Experience of post-diagnostic services was generally positive.
Conclusions: Parents need greater support both during the testing of screen failures and at the time of diagnosis. Providers need more training in how to communicate findings to parents, particularly at times when parents are experiencing strong emotions. Parents need more strategies to enable hearing aid wearing in very young children. Some children with additional medical, developmental, and behavioural problems need specialised approaches to testing.
Full Text
The Full Text of this article is available as a PDF (144.4 KB).
Selected References
These references are in PubMed. This may not be the complete list of references from this article.
- Curtis E., Waterston T. Community paediatrics and change. Arch Dis Child. 2002 Apr;86(4):227–229. doi: 10.1136/adc.86.4.227. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Dixon-Woods M., Fitzpatrick R. Qualitative research in systematic reviews. Has established a place for itself. BMJ. 2001 Oct 6;323(7316):765–766. doi: 10.1136/bmj.323.7316.765. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Fonseca S., Borgstein B., Dobson M., Hall D. The relationship between audit, research and policy: lessons from a community paediatric audiology service. Child Care Health Dev. 1997 Jan;23(1):63–76. doi: 10.1046/j.1365-2214.1997.842842.x. [DOI] [PubMed] [Google Scholar]
- Luterman D. Counseling families with a hearing-impaired child. Otolaryngol Clin North Am. 1999 Dec;32(6):1037–1050. doi: 10.1016/s0030-6665(05)70193-6. [DOI] [PubMed] [Google Scholar]
- Luterman D., Kurtzer-White E. Identifying hearing loss: parents' needs. Am J Audiol. 1999 Jun;8(1):13–18. doi: 10.1044/1059-0889(1999/006). [DOI] [PubMed] [Google Scholar]
- Malterud K. Qualitative research: standards, challenges, and guidelines. Lancet. 2001 Aug 11;358(9280):483–488. doi: 10.1016/S0140-6736(01)05627-6. [DOI] [PubMed] [Google Scholar]
- Malterud K. The art and science of clinical knowledge: evidence beyond measures and numbers. Lancet. 2001 Aug 4;358(9279):397–400. doi: 10.1016/S0140-6736(01)05548-9. [DOI] [PubMed] [Google Scholar]
- Mays N., Pope C. Qualitative research in health care. Assessing quality in qualitative research. BMJ. 2000 Jan 1;320(7226):50–52. doi: 10.1136/bmj.320.7226.50. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Robertson C., Aldridge S., Jarman F., Saunders K., Poulakis Z., Oberklaid F. Late diagnosis of congenital sensorineural hearing impairment: why are detection methods failing? Arch Dis Child. 1995 Jan;72(1):11–15. doi: 10.1136/adc.72.1.11. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Russ S. A., Rickards F., Poulakis Z., Barker M., Saunders K., Wake M. Six year effectiveness of a population based two tier infant hearing screening programme. Arch Dis Child. 2002 Apr;86(4):245–250. doi: 10.1136/adc.86.4.245. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Taylor I. G. Hearing-impaired babies and methods of communication. Ear Hear. 1985 Jan-Feb;6(1):25–28. doi: 10.1097/00003446-198501000-00007. [DOI] [PubMed] [Google Scholar]
- Watkin P. M., Baldwin M. Confirmation of deafness in infancy. Arch Dis Child. 1999 Nov;81(5):380–389. doi: 10.1136/adc.81.5.380. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Watkin P. M., Beckman A., Baldwin M. The views of parents of hearing impaired children on the need for neonatal hearing screening. Br J Audiol. 1995 Oct;29(5):259–262. doi: 10.3109/03005369509076740. [DOI] [PubMed] [Google Scholar]
- Watkin P. M. Outcomes of neonatal screening for hearing loss by otoacoustic emission. Arch Dis Child Fetal Neonatal Ed. 1996 Nov;75(3):F158–F168. doi: 10.1136/fn.75.3.f158. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Whittemore R., Chase S. K., Mandle C. L. Validity in qualitative research. Qual Health Res. 2001 Jul;11(4):522–537. doi: 10.1177/104973201129119299. [DOI] [PubMed] [Google Scholar]