Parental experiences of the diagnosis of permanent childhood hearing loss: a phenomenological study.

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.