Division of Audiology, School of Health and Rehabilitative Sciences, The University of Queensland, Brisbane, Australia.
College of Nursing and Health Sciences, Flinders University, Adelaide, Australia.
Int J Audiol. 2020 Jan;59(1):54-60. doi: 10.1080/14992027.2019.1670364. Epub 2019 Sep 30.
The objective of the study was to discover the nature of parental lived experiences of the diagnostic process of Permanent Childhood Hearing Loss (PCHL) and to construct an emotional life-world of parent experience around PCHL. Through an Interpretive Phenomenological Analytical (IPA) framework and subsequent purposive sampling, parents were invited to semi-structured interviews. Ten parents of children who were identified with PCHL as one or the only permanent childhood disability diagnosed during early childhood were interviewed. Five themes emerged; (a) a received disability, (b) casualties, (c) acceptance in real-time, (d) the unique signature of family life, and (e) audiologists are essential and appreciated guides. The emotional landscape chronicled two concurrent, non-linear affective groupings: the spiral of disorientation, and protective states of righting. Parents require a level of emotional support that exceeds frameworks of counselling. We propose the Dual Process Model as an intermediary model of emotional literacy to address both grieving and coping during the passage from diagnosis to early management. We believe it provides an effortless articulation with the principles of Family-Centred Care philosophies (top down) and behaviours (bottom up) by providing a taxonomy of grieving, coping and parents' movement between the two orientations.
本研究旨在探究父母对儿童永久性听力损失（PCHL）诊断过程的亲身体验本质，并围绕 PCHL 构建父母体验的情感生活世界。通过解释现象学分析（IPA）框架和随后的目的性抽样，邀请父母进行半结构化访谈。共访谈了 10 位孩子被诊断为 PCHL 的父母，PCHL 是儿童早期唯一被诊断出的永久性残疾。研究结果呈现出五个主题：（a）被接受的残疾；（b）意外；（c）实时接受；（d）家庭生活的独特特征；（e）听力学家是不可或缺且值得赞赏的指导者。情感景观记录了两种同时发生的非线性情感分组：迷失方向的螺旋和正确的保护状态。父母需要超出咨询框架的情感支持。我们提出双过程模型作为情感素养的中间模型，以解决从诊断到早期管理过程中的悲伤和应对问题。我们认为，通过提供悲伤、应对和父母在这两种取向之间的移动的分类法，它与以家庭为中心的关怀理念（自上而下）和行为（自下而上）的原则毫不费力地契合。
