Deaf children identified through newborn hearing screening: parents’ experiences of the diagnostic process

Abstract

As part of the Department of Health funded evaluation of the first phase of the National Health Service Newborn Hearing Screening Programme in England, 45 parents/caregivers whose children were correctly identified as deaf through the screening programme were interviewed about their experiences. The study took a qualitative descriptive approach and thus sought to privilege parents' unique epistemological position, valuing their accounts as expert knowledge and allowing them to set the criteria for what should be counted as meaningful within their accounts. The sample of 45 parents/caregivers was diverse in terms of ethnicity and socio-economic status. In addition, the children represented a diversity of degrees of deafness and additional needs. Data were analysed using QSR NUD*IST 4. The diagnostic period emerged as an important time for parents. This refers to the period of time that follows the referral from screen and starts with the first appointment at audiology for audiological assessment. The diagnostic process was found to be hugely variable for each family, both objectively, e.g. in terms of number of appointments they had to attend, and also attitudinally, e.g. some families perceived this period of time as a series of discrete events while others viewed it as part of a process that had started with the first screening event. Although it is reasonable to expect such factors to be the most influential in accounting for variations in parental satisfaction with the diagnostic process, it was in fact professional communication and manner that emerged as the most significant predictors of their experiences. The discussion concentrates on the question of whether early identification of deafness and the subsequent compressed time frame of events between birth and diagnosis create "new" experiences for parents or whether in fact the new circumstances surrounding diagnosis make no difference to the way in which professionals approach their encounters with parents.