Academic journal article The Volta Review

From Screening to Care: A Qualitative Analysis of the Parental Experiences Related to Screening and (Re)habilitation Care for Children with Congenital Deafness in Flanders, Belgium

Academic journal article The Volta Review

From Screening to Care: A Qualitative Analysis of the Parental Experiences Related to Screening and (Re)habilitation Care for Children with Congenital Deafness in Flanders, Belgium

Article excerpt

The objective of this study is to analyze parental perspectives concerning the use of (re)habilitation services after Universal Newborn Hearing Screening (UNHS). A qualitative study design was used involving children with moderate-to-profound hearing loss who were born between 1999 and 2001 and who are registered in the UNHS program in Flanders, Belgium. Parents of these children were interviewed using a topic list and a chronological scheme to register meaningful events while using (re)habilitative services. Subsequently, thematic content analysis was applied to the transcripts of the interviews. Analysis found that differences exist in parental experiences and some parents who were referred directly from UNHS to an ear, nose, and throat department were left with feelings of uncertainty and anxiety, creating an obstacle in the care trajectory for their child. The parental perception of diagnosis/care was also a cause for delay. Parents considered educational support at home, after UNHS, important. Results indicate that implementation of a UNHS program is in itself insufficient to ensure early intervention, and that adequate support is needed during the early care trajectory to avoid delay and parental distress.

Introduction

When a child is diagnosed with a congenital hearing loss, parents are expected to take steps to obtain specialized care for their child, and professionals can support families in taking these steps. In the last decade of the 20th century, the context of early intervention care trajectories has changed drastically.

First, testing procedures, such as automated auditory brain stem response (AABR), offer a very reliable way of screening young children for hearing loss. As a consequence, parents can be informed about their child's hearing loss a few weeks after birth, allowing an early start to specialized care and the application of assistive technologies (if requested), such as hearing aids and cochlear implant (CIs) (Anderson et al., 2004). Second, in a number of regions in the world, government or privately run health care institutions have established universal newborn hearing screening (UNHS) programs based on reliable testing methods (Nelson, Bougatsos, & Nygren, 2008; Thompson et al., 2001), leading to widespread early detection of hearing loss in those regions.

These aspects of early hearing loss identification offer new opportunities for the functional development of children who are deaf or hard of hearing (Nelson et al., 2008). At the same time, parents-who are often unfamiliar with hearing loss-are suddenly faced with many care-related questions shortly after the birth of their child, specifically the context of early (re)habilitation. Parents need to take important steps at the beginning of the child's care trajectory, in which (re)habilitation care may be considered a key issue.

In reviewing past scientific research on children who are deaf or hard of hearing, much attention has been given to functional outcomes of therapy with a focus on providing evidence for the effectiveness of CIs (e.g., Beadle et al., 2005; Declau, Boudewyns, Van den Ende, Peeters, & Van de Heyning, 2008; Eisenberg et al., 2006), although some studies also point out the limitations of this technology (e.g., Geers, 2004; Marschark, Rhoten, & Fabich, 2007). Furthermore, research has provided evidence for successful implementation of UNHS programs (Kerschner, 2004; Nelson et al., 2008; Uilenburg, Kauffman-de Boer, van der Ploeg, Oudesluys-Murphy, & Verkerk, 2009), with attention given to issues of effectiveness in terms of early care intervention (e.g., Neumann et al., 2006) and financial considerations (Grill et al., 2006; Mezzano, Serra, & Calevo, 2009).

Parental perspectives with regard to care has received much less attention. Some researchers have studied parental decision-making with regard to CIs (e.g. Hardonk et al., 2010a; Incesulu, Vural, & Erkam, 2003; Kluwin & Stewart, 2000; Okubo, Takahashi, & Kai, 2008), and a coordinated research effort in the United Kingdom was aimed at parental experiences related to UNHS (Young & Andrews, 2001; Young & Tattersall, 2005, 2007). …

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