Umat Cila, Abdul Wahat Nor Haniza, Che Ross Sakinah, Goh Bee See
Audiology Program, Center for Rehabilitation & Special Needs, Faculty of Health Sciences, Universiti Kebangsaan Malaysia (UKM), Jalan Raja Muda Abdul Aziz, 50300, Kuala Lumpur, Malaysia.
Department of Otorhinolaryngology-Head & Neck Surgery, Faculty of Medicine, Universiti Kebangsaan Malaysia Medical Centre, Jalan Yaacob Latif, Bandar Tun Razak, 56000, Kuala Lumpur, Malaysia.
J Otol. 2019 Mar;14(1):17-21. doi: 10.1016/j.joto.2018.11.004. Epub 2018 Nov 13.
This study examined the quality of life (QoL) of the parents and siblings of hearing-impaired children with cochlear implants (CIs).
This 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.
The study was conducted under the Center for Rehabilitation & Special Needs, Faculty of Health Sciences, Universiti Kebangsaan Malaysia, Kuala Lumpur.
A total of 79 parents and 23 siblings from 44 families of children with CI participated in this study.
The 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.
There 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%).
Families 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.
本研究调查了植入人工耳蜗（CI）的听力受损儿童的父母及兄弟姐妹的生活质量（QoL）。
这是一项基于问卷调查的横断面研究。问卷包括三个子领域——互动、情感幸福以及对听力受损儿童的支持和总体生活质量——还有两个开放式问题，供参与者提供意见和建议以提高其家庭的生活质量。总共向符合纳入标准的家庭发送了63份问卷，通过电子邮件或邮寄方式发放。
该研究在马来西亚吉隆坡马来西亚国民大学健康科学学院康复与特殊需求中心进行。
来自44个植入人工耳蜗儿童家庭的79名父母和23名兄弟姐妹参与了本研究。
计算两个受试组各子领域的平均得分以及总体生活质量得分。列出开放式问题的答案并归纳为主题。
父母组的总体生活质量得分与每个测试领域之间存在显著相关性（p<0.01）。对于兄弟姐妹组，只有互动和支持领域具有显著性。互动是影响父母生活质量的主要子领域，但对于兄弟姐妹来说，无法确定这一点。总共60%的汇总意见被归类为“担忧”。至于建议，38.7%要求某种形式的支持，主要是经济支持（41.7%）。
植入人工耳蜗的听力受损儿童家庭有许多需要解决的担忧，尽管总体而言，他们对自己家庭的生活质量感到满意。
