Congenitally deaf children's care trajectories in the context of universal neonatal hearing screening: a qualitative study of the parental experiences

The objective of this study is to examine the early care trajectories of congenitally deaf children from a parental perspective, starting with universal neonatal hearing screenings. The analysis using a three-dimensional care trajectory concept is aimed at developing a basic typology of postscreening care trajectories. Children with severe/profound hearing loss, registered in the Flanders' (Belgium) universal neonatal hearing screening program, born between 1999 and 2001. Thematic content analysis of qualitative data collected retrospectively from participant's parents. Two basic types of care trajectories emerged; based on differences in care-use in the phase of further diagnosis and related parental experiences. Subtypes resulted from events related to cochlear implantation. Five trajectory phases were identified: screening, further diagnosis, care and technology, cochlear implantation, and reduction of care and were characterized by specific parental experiences such as confusion, disbelief, disappointment, and uncertainty. Those experiences relate to care professionals' acts and communication and the child's functional evolution. Early care interventions could benefit from coordinated transition between phases, parent support throughout the care trajectory, and a broad approach to deafness in professionals' communication

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

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

Deaf parents and pediatric cochlear implantation: an exploration of the decision-making process

THE STUDY examined factors in deaf parents' decision between cochlear implantation (CI) and traditional hearing aids for their child. The subjects were 6 Flemish children ages 5-9 years with severe/profound congenital hearing loss, with at least 1 deaf parent. The researchers, who conducted thematic content analysis of qualitative data collected through parent interviews, found that with the exception of a family with 1 hearing parent, parents gave priority to Deaf identity sign language, and ethical issues in deciding between CI and hearing aids. Medical risks were also mentioned. The researchers conclude that the decision-making processes of the parents involved factors that have also been found among hearing parents, as well as aspects that have not been reported to play a role in hearing parents' decision making. A further conclusion is that deaf parents' perspective merits attention in professional practice and empirical research