Abstract
Background and aims: Parents who realise that their newborn child is severely disabled often experience severe physical and emotional stress. Parental well-being is essential for the care-taking of the child. It is yet not known why some cope well and others do not. The aim of this study was to explore how parents coped with parenting a disabled child, maintained their energy and personal resources, and how health professionals could support this processes.
Methods: We conducted a qualitative, longitudinal interview study with 16 parents during the first two years after their child was diagnosed with a severely disabling condition. A grounded theory analysis was conducted and findings were interpreted in a theoretical framework of Lazarus and Folkman's studies on coping and Fredrickson's broaden-and-build theory of positive emotions, as well as theories of positive illusions and benefit finding during severe adversity.
Results: We found that parents continually created and sustained their personal resources through positive reappraisals of their circumstances. Nine general coping strategies were identified as; emotional bonding, identifying supportive social relations, creating mental respite, meaning-making, benefit finding, evaluating existential beliefs, taking action, normalization and maintaining hope. A theory of resource-creation is proposed as an addition to the current understanding of coping and the role of positive emotions.
Conclusions: We found that parental coping was directed at creating new resources in the family as well as solve practical problems and reduce emotional strain. Implications for information and counselling are provided.
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Graungaard, A., Andersen, J. & Skov, L. 40 Parental Coping and Resources When the Child is Severely Disabled - How to Inform and Support the Parents?. Pediatr Res 68 (Suppl 1), 23 (2010). https://doi.org/10.1203/00006450-201011001-00040
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DOI: https://doi.org/10.1203/00006450-201011001-00040