Grief in the context of early hearing detection and intervention programs: parents' perception of grief processing and support

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Kelly, Sarah
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The purpose of this qualitative research study was to gain an understanding of parental grief experiences within the context of an early hearing detection and intervention program and to examine parents’ perception of the professional support they received. Through focus group interviews, eight mothers and seven fathers, whose infants were diagnosed with a hearing loss at birth through a universal newborn hearing screening and who were confronted immediately with a health care system necessitating decisions about early intervention, were invited to share their emotional journey and their experiences of being supported. Parents shared emotions associated with grief and processing grief, their emotional and informational needs, and what influenced their decision making process. Differences between spouses were also examined. The findings are presented through three central themes. The first theme revealed that grief was a part of parents’ emotional journey. Specifically parents shared feelings of grief related to the loss of what they had anticipated, and mothers shared feelings of loss associated with their anticipated experience of motherhood. The grief experience was different for mothers and fathers. The second theme revealed that as parents processed their grief, they experienced a paradox of emotionally moving forward and staying in place. Parents shared feelings of happiness and joy when they spoke about their children yet they also shared experiences that reflected a continuance of grieving. The final theme indicated the ways in which parents discussed being emotionally supported and the differences in support needs between husbands and wives. The discussion of these themes addressed the paradoxes that existed and the notion that parents were uncomfortable living with these paradoxes. Implications for professionals who support parents throughout their EHDI program experience were also described, including the provision of information and how that information impacts parents’ need for emotional support. The implication that professionals must provide parents the space to feel their emotions related to grief was also explored.
grief, EHDI