Negotiating reassurance: parents’ narratives on follow-up after cochlear implantation

Parental involvement in the care and intervention of children with hearing loss

“…Similar to the findings of previous research (Bruin & Ohna, 2015; Zaidman-Zait & Young, 2008), the parents in the current study, especially the mothers, felt responsible for their child’s outcomes and took on the role of ‘teacher’. They also described acting as the audiologist, case manager, speech pathologist, and philanthropist.…”

“…However, the operational meaning of parental involvement is unclear and research that explores the nature of this construct is limited. The present study complements the findings of previous research (Bruin & Ohna, 2015; Desjardin, 2005; McNeil & Chabassol, 1984; Zaidman-Zait & Young, 2008) and provides a deeper understanding of parental involvement by exploring the experiences of 17 adults who parent a child with hearing loss. Although the participants in this study offered diverse perspectives, five common domains of parental involvement were shared among them: (1) parents work behind the scenes; (2) parents act as ‘case managers’; (3) parents always have their child’s language development in mind; (4) parents’ role extends to advocacy for all children with hearing loss; and (5) parents serve a number of roles, but at the end of the day, they are parents.…”

“…Bruin and Ohna (2015) also undertook qualitative research to collect data on parents of children with cochlear implants. Ten mothers and four fathers of implanted children ranging in age from 3 to 11 years were interviewed about their experiences after the surgery.…”

“…Nevertheless, literature in this area is scarce. To date, the studies that were conducted predominantly used closed-ended questions to collect data (Desjardin, 2005; McNeil & Chabassol, 1984) or used open-ended questions but only included parents of children with cochlear implants (e.g., Bruin & Ohna, 2015; Zaidman-Zait & Young, 2008). Since the innovation of cochlear implantation, a vast amount of paediatric research has focussed on the impact of this intervention (Thoutenhoofd et al, 2005).…”

Satisfaction with Life among Mothers of Pediatric Cochlear Implant Candidates: The Impact of Implant Operation and Sociodemographic Factors

“…Mothers in our cohort identified occupational life, care of other children, and increased individual responsibilities as the most problematic areas of parenting a child with a hearing disability. This supports the statement that parents, especially mothers, felt responsible for their child's outcomes and take many roles and are at risk of experiencing negative emotions, such as guilt and unhappiness, in case of poor outcomes [2,31,32] . Consistent with the 80% unemployment rate in our cohort, having children with disabilities was reported to cause some parents to quit their job leading to significant financial problems for the families [11,33] .…”