Living with dying children: the suffering of parents

Although the relief of suffering and emotional support are fundamental to children's palliative care, their empirical study has been limited. The research questions for this study address three areas: the lived experience of parents of dying children; how other people's responses shape the parents' lived experience; and the place of emotion and suffering in the parents' lived experience. Implementing a qualitative strategy, a collective case study was undertaken in a children's hospice in England, with fieldwork completed between March 2008 and September 2009. Data was collected with nine parents using a range of tools including a focus group, participant observation, documentary observation and individual interviews. Within-case and cross-case modified grounded theory analysis facilitated clarification of emerging themes whilst preserving individual parent voices. The findings show that parents of dying children had existential issues put at stake through the emotional experience of parenting a dying child; these included their identity, place in society, time, and relationships. Such losses could constitute suffering, but in addition they limited the parents' interaction with society so that over time both the 'quantity' and 'quality' of intersubjectivity reduced. The parents perceived that other people tended not to legitimate their lived experience. Emotion was an important influence in this process. The parents of dying children managed their emotions, particularly those of a negative nature, in everyday life and when using hospice services. As a result they expressed somewhat inauthentic accounts of their felt experience, reframed according to perceived feeling rules. This also reduced intersubjectivity and supported the delegitimation of the parental experience. In conclusion, delegitimation of the parental experience stems from feeling rules which are derived from day to day interactions and contemporary social policy. Suffering may be prevented if individual experience is legitimated through improved intersubjectivity. A key factor for this is effective communication through which observers engage with the felt emotion of the suffering individual.