Pediatric Cochlear Implantation: A Qualitative Study of Parental Decision-Making Processes in Flanders, Belgium

Abstract

Factors contributing to parents' decision when they choose between cochlear implantation (CI) and traditional hearing aids for their child were examined. The subjects were children with severe/profound hearing loss, born 1999-2001, registered in the universal neonatal hearing screening program in the Flanders region of Belgium. Qualitative data collected retrospectively from parents were subjected to thematic content analysis. In their responses to professional advice, parents were segmented into 3 groups: (a) those whose primary considerations were the importance of oral language development and the relative potential of CI and traditional hearing aids; (b) those for whom alternative factors (e.g., medical risks, ethical issues) were paramount, even in the face of professional advocacy of CI; (c) those who followed professional advice against CI. The researchers conclude that care professionals should be sensitive to the impact of their advice and other factors in parental decision making.

Exploring how parents of children with unilateral hearing loss make habilitation decisions: a qualitative study

“…For example , Lipstein, Brinkman, and Britto (2012) reviewed the literature the parent-child decision making processes across a range of medical treatments, showing parents wanted to include their child in the discussion. In relation to decision making for deaf children, not only those with unilateral hearing loss, parents reflect that they were led by professional advice, and were not given clear information about how their chosen intervention would impact on their lives (Fitzpatrick, Jacques, and Neuss 2011;Hardonk et al 2010;Hyde, Punch, and Komesaroff 2010;Li, Bain, and Steinberg 2004;Ramsden et al 2009).…”

Parental Decision-Making and Deaf Children: A Systematic Literature Review

“…Qualitative methods included face-to-face interviews (N = 15) and telephone interviews (N = 2). Analysis of the qualitative studies varied as different interpretive approaches were used, including modified grounded theory (Borum, 2012;Okubo, Takahashi, & Kai, 2008;Vieira, Bevilacqua, Ferreira, & Dupae, 2014), discourse analysis (Bruin & Nevøy, 2014), interpretative description (Fitzpatrick, Jacques, & Neuss, 2011), naturalistic inquiry (Jackson, Traub, & Turnbull, 2008), thematic analysis (Chang, 2017;Hardonk et al, 2010), and content analysis (Kluwin & Stewart, 2000). The mixed methods studies involved an initial questionnaire followed by interviews with a subset of respondents.…”

“…One study investigated decision-making following maternal suspicion of hearing loss in low-income families attending a facility in Southern India (Merugumala, Pothula, & Cooper, 2017). Four studies specified that the children had been diagnosed through newborn hearing screening (Bruin & Nevøy, 2014;Hardonk et al, 2010;Matthijs et al, 2017;Uus et al, 2015). Last, while most studies provided some details about the child/children concerned, 17 (46%) only reported on the participants' relationship to the child, and five (16%) on the relationship to the child and hearing status of the participant, despite the views and experiences of parents themselves being the foci of the studies.…”

“…One study, over a series of interviews, looked at the changing values of parents and the realities of implementing a decision (Matthijs et al, 2017). Finally, six studies compared parents who had implemented an option (e.g., CI) with those who chose not to implement the same option, and the reasons for their decision (Chang, 2017;Graham et al, 2015;Hardonk et al, 2010;Kluwin & Stewart, 2000;Okubo et al, 2008;Ramsden, Papaioannou, Gordon, James, & Papsin, 2009 ).…”

“…Provision of information Information provision was considered in 24 (65%) of the papers, including sources of information, type of information, and the adequacy of the information provided to make a decision. The principal sources of information for CI were reported to be ear, nose, and throat surgeons and audiologists (Alkhamra, 2015;Crowe, Fordham et al, 2014;Decker, Vallotton, & Johnson, 2012;Hardonk et al, 2010;Hyde et al, 2010;Johnston, Durieux-Smith, Fitzpatrick, O'Connor, Benzies, & Angus, 2008;Li et al, 2003;Most & Zaidman-Zait, 2003). The sources of information about communication modality and bilingualism were varied, with teachers of the Deaf, speech pathologists, and deaf adults reported as playing the more significant roles (Crowe, Fordham, et al, 2014;Decker et al, 2012;Eleweke & Rodda, 2000;Guiberson, 2013).…”