”We, as parents, need to be acknowledged in the process”. Parents’ perceptions of the process of diagnosis and habilitation of their child with congenital hearing impairment: an interview study

Abstract: Objective: 1-2 ‰ of newborns in Sweden are identified with a permanent, habilitation- required hearing impairment at neonatal hearing screening. Traditionally, focus is on the child when diagnosed; the parents’ needs and concerns are not always recognised. The current study aims to elucidate parents’ narratives of their experiences of the process of diagnosis and habilitation of their child with congenital hearing impairment. Method: A qualitative study using in-depth, semi-structured interviews is performed. Eight parents of children with congenital hearing impairment are interviewed. Interviews are analysed using a hermeneutic phenomenological approach to thematic content analysis. Results: The analysis results in two main themes: Mixed emotions and Positive encounters despite shortcomings. The first main theme has three sub-themes: (1) Grief, (2) Guilt, and (3) Gratitude. The second main theme has six sub-themes: (1) Lack of clarity for following up, (2) Early social and emotional support, (3) Staff knowledge and competence, (4) Lack of community awareness, (5) Staff continuity, and (6) Parents’ need for acknowledgement. Conclusion: The research findings indicate that parents require more informational and emotional support at initial detection. In addition, the parents want to be more involved and acknowledged throughout the process of detection, diagnosis, and habilitation. Parents’ emphasised requests for involvement indicate the importance of providing family-centred care in clinical practice.