Chronic grief: Experiences of working parents of children with chronic illness

Abstract

Parents of children with chronic illness experience multiple stressors associated with their numerous roles. For parents who are working full time and caring for a child with chronic illness, the stressors related to managing work and caring responsibilities are magnified. Although the impact of caring for a child with chronic illness has been widely investigated, the literature reveals a paucity of research on the experiences of parents who are also in full time employment. This paper shares qualitative findings of a study involving interviews of twelve parents who were working full time while caring for a child with chronic illness. Data was collected through in-depth semi structured interviews and thematic analysis was then used to develop and categorise themes. Two intertwined themes are reported: (1) grief and (2) dealing with professionals. In this study, parents revealed the chronic grief they experienced in relation to their child’s condition, which often recurred at various stages of the child’s illness. The child’s initial diagnosis was found to be the most stressful part of the grieving process, with most feeling their voices as parents were not being heard or valued by health professionals at this time. This affected parents’ confidence in the health care system and triggered the re-emergence of grief, aggravating an already stressful situation. The findings illustrate that the grief experienced by these parents can be exacerbated by their dealings with health professionals. Implications for various health professionals are drawn from the findings in order to highlight avenues where guidance and support can be provided to these parents.