The purpose of this qualitative research study was to gain an understanding of parental grief experiences within the context of an early hearing detection and intervention program and to examine parents’ perception of the professional support they received. Through focus group interviews, eight mothers and seven fathers, whose infants were diagnosed with a hearing loss at birth through a universal newborn hearing screening and who were confronted immediately with a health care system necessitating decisions about early intervention, were invited to share their emotional journey and their experiences of being supported. Parents shared emotions associated with grief and processing grief, their emotional and informational needs, and what influenced their decision making process. Differences between spouses were also examined. The findings are presented through three central themes. The first theme revealed that grief was a part of parents’ emotional journey. Specifically parents shared feelings of grief related to the loss of what they had anticipated, and mothers shared feelings of loss associated with their anticipated experience of motherhood. The grief experience was different for mothers and fathers. The second theme revealed that as parents processed their grief, they experienced a paradox of emotionally moving forward and staying in place. Parents shared feelings of happiness and joy when they spoke about their children yet they also shared experiences that reflected a continuance of grieving. The final theme indicated the ways in which parents discussed being emotionally supported and the differences in support needs between husbands and wives. The discussion of these themes addressed the paradoxes that existed and the notion that parents were uncomfortable living with these paradoxes. Implications for professionals who support parents throughout their EHDI program experience were also described, including the provision of information and how that information impacts parents’ need for emotional support. The implication that professionals must provide parents the space to feel their emotions related to grief was also explored.

The purpose of this qualitative research study was to gain an understanding of parental grief experiences within the context of an early hearing detection and intervention program and to examine parents’ perception of the professional support they received. Through focus group interviews, eight mothers and seven fathers, whose infants were diagnosed with a hearing loss at birth through a universal newborn hearing screening and who were confronted immediately with a health care system necessitating decisions about early intervention, were invited to share their emotional journey and their experiences of being supported. Parents shared emotions associated with grief and processing grief, their emotional and informational needs, and what influenced their decision making process. Differences between spouses were also examined. The findings are presented through three central themes. The first theme revealed that grief was a part of parents’ emotional journey. Specifically parents shared feelings of grief related to the loss of what they had anticipated, and mothers shared feelings of loss associated with their anticipated experience of motherhood. The grief experience was different for mothers and fathers. The second theme revealed that as parents processed their grief, they experienced a paradox of emotionally moving forward and staying in place. Parents shared feelings of happiness and joy when they spoke about their children yet they also shared experiences that reflected a continuance of grieving. The final theme indicated the ways in which parents discussed being emotionally supported and the differences in support needs between husbands and wives. The discussion of these themes addressed the paradoxes that existed and the notion that parents were uncomfortable living with these paradoxes. Implications for professionals who support parents throughout their EHDI program experience were also described, including the provision of information and how that information impacts parents’ need for emotional support. The implication that professionals must provide parents the space to feel their emotions related to grief was also explored.

Infant hearing screening (IHS) programs are not yet widespread in developing countries, such as South Africa. In order to ensure that the benefits of early hearing detection and intervention (EHDI) programs reach all infants, initial recommendations for the implementation of IHS programs in South Africa have been made by the Year 2002 Hearing Screening Position Statement by the Health Professions Council of South Africa. One of the platforms recommended for IHS in South Africa is the neonatal intensive care unit (NICU). South African NICU infants are at an increased risk for hearing loss, resultant of their high-risk birth histories, as well as the prevalence of context-specific environmental risk factors for hearing loss. There is currently a general scarcity of contextual data regarding the prevalence of risk indicators for hearing loss, and the prevalence of auditory impairment in the South African NICU population. The objective of this study was to describe an IHS program for NICU infants at a secondary hospital in Gauteng, South Africa. A quantitative descriptive research design was used to report on a cohort of 129 NICU infants followed up during a 29 month period. The objective of the study was achieved by describing the sample of infants in terms of the presence of specific risk indicators for hearing loss, the efficiency of the IHS program, and the incidence of auditory pathologies. Infants received their initial hearing screening as part of their medical and developmental follow-up visit at the hospital at three months of age. Routine rescreening visits were scheduled three monthly, whilst infants who failed the hearing screening were requested to return after three weeks for a follow-up. A data collection sheet was used to collect biographical information and risk indicators for hearing loss. Immittance measurements were recorded in the form of high-frequency and low-frequency tympanometry. Distortion product otoacoustic emissions (DPOAE) and automated auditory brainstem responses (AABR) were recorded, as well as diagnostic auditory brainstem responses (ABR) in cases where infants referred the screening protocol. Results revealed that environmental risk factors present in this sample included poor maternal education levels and prenatal HIV/AIDS exposure. At least 32% of mothers participating in this study did not complete high school. Prenatal HIV/AIDS exposure was present in at least 21% of the current sample of infants. The screening coverage rate fell short of the 95% benchmark set by the Joint Committee on Infant Hearing (JCIH, 2000). A 67% coverage rate was achieved with AABR screening, and an 88% coverage rate was achieved with DPOAE screening. 93% of infants had immittance screening performed on their initial visit to the IHS program. According to the Fisher’s two-sided exact test and the logistic regression procedure, high frequency tympanometry proved to be more effective than low frequency tympanometry, when assessing the middle ear functioning of infants younger than seven months when compared with DPOAE results. Normative pressure and admittance data was compiled for the use of high frequency tympanometry in NICU infants. Poor follow-up rates were recorded for both routine and non-routine visits, but are expected to improve over time. Furthermore, results indicated a high incidence of hearing impairment. Permanent congenital hearing loss was identified in 3% (n=4) of the sample. Half of these presented with sensorineural hearing loss, whilst the other half had auditory neuropathy. The incidence of auditory impairment is estimated to be 3.75% if the percentage of infants who did not return for follow-up is taken into account. A high incidence of middle ear pathology was recorded, with an incidence rate of 60.4%, including bilateral and unilateral middle ear pathology. The high prevalence of auditory impairment in South African NICU infants, and the lack of widespread IHS programs, indicates that many vulnerable infants are being the denied the benefits of early identification of and intervention for hearing loss. The implementation of widespread IHS programs in South Africa is therefore essential, in order to ensure that all South African infants receive the benefits of EHDI programs. / Dissertation (MCommunication Pathology)--University of Pretoria, 2007. / Speech-Language Pathology and Audiology / unrestricted