Quality of life of parents and siblings of children with cochlear implants

Abstract

ObjectivesThis study examined the quality of life (QoL) of the parents and siblings of hearing-impaired children with cochlear implants (CIs).DesignThis is a cross-sectional, questionnaire-based study. The questionnaire consists of three sub-domains - interaction, emotional well-being and support for the hearing-impaired child and the overall QoL -- and two open-ended questions for participants to provide comments and suggestions to enhance their family's QoL. A total of 63 questionnaires were e-mailed or mailed to families who met the inclusion criteria.SettingThe study was conducted under the Center for Rehabilitation & Special Needs, Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur.ParticipantsA total of 79 parents and 23 siblings from 44 families of children with CI participated in this study.Main outcome measuresThe mean score for each of the sub-domain and the overall QoL for both subject groups were computed. The answers for the open-ended questions were listed and organized into themes.ResultsThere were significant correlations between the overall QoL score and each of the test domains for the parents' group (p < 0.01). For the siblings' group, only the interaction and support domains were significant. Interaction was the main sub-domain affecting the parents' QoL but for siblings, this could not be determined. A total of 60% of the pooled comments were classified as ‘concerns’. As for the suggestions, 38.7% requested some form of support, mainly financial (41.7%).ConclusionsFamilies with hearing impaired children with CI have numerous concerns that need to be addressed, even though, on average, they were satisfied with their overall QoL.

Quantitative and Qualitative Perspectives of Siblings of Children With Cochlear Implants

“…One sibling noted how problems in hearing could lead to arguments, whereas another sibling realized how HL could negatively influence the conversation process. This finding agrees with Umat et al (2019), who reported siblings assigned the most positive rating for interaction to the statement, "My sibling knows when I want his attention because he can hear me calling." Regardless of the exact issue faced by individual families, the sibling's assessment of their brother or sister with CIs seems clear: CI users demonstrate social communication deficits in real-world scenarios.…”

“…The previous studies included deaf or hard-of-hearing children who predominantly communicated orally, but the authors did not specify if the children used auditory technology such as hearing aids (HAs) and/or CIs. Umat et al (2019) completed the most comprehensive assessment of quality of life in the siblings with TH of children with HL who use a CI. Twenty-three siblings (12-17 years of age) from 44 families of children with CIs (3-11 years of age) completed a quality-of-life questionnaire.…”

“…Some siblings with TH of children with HL report they receive lower levels of attention from their parents and get the "leftovers" of their parents' energy (Atkins, 1987;Gregory et al, 1995). However, others report no difference in parental attention (Raghuraman, 2008;Umat et al, 2019).…”

“…A few of the studies explicitly identified the communication mode as oral communication (Antonopoulou et al, 2012;Hadjikakou et al, 2010) but did not clearly state if the children with HL used auditory technology and, if so, which type. Only three studies that explore the impact of pediatric HL on siblings with TH include children who use CIs (Bat-Chava & Martin, 2002;Ray, 2014;Umat et al, 2019). Ray (2014) included two adult siblings of brothers with CIs who, in semistructured interviews, reflected on growing up with a deaf sibling.…”

“…Ray (2014) included two adult siblings of brothers with CIs who, in semistructured interviews, reflected on growing up with a deaf sibling. Umat et al (2019) examined third-party disability by collecting data from parents and siblings on overall quality of life of children with CIs. However, the study merged item-level responses from parents and siblings, creating difficulties in differentiating effects of having a child with CIs on the sibling with TH.…”