Traditionally, bereavement support for families extends to parents and siblings of children who died from a life-limiting condition. Few studies have focused on the needs of bereaved grandparents, who play an increasing role in the families of children with life-limiting conditions.
Aim To explore how grandparents experience the death of a grandchild who died from a life-limiting condition.
Methods A purposive sampling technique was used to recruit participants who: (i) identified themselves as fulfilling a grandparenting role; (ii) were bereaved for between six and 24 months; (iii) had a grandchild that died from a life-limiting condition. Grandparents who were the principal carers of the deceased grandchild were excluded.
Semi-structured, individual, face-to-face interviews were conducted in participants own homes. Field notes were taken during and immediately following the interviews.
Findings Seven individuals participated in this study. Findings indicated a number of contextual factors that affect the experience of bereaved grandparents, including intergenerational bonds, identity and perceived changes in role following the death of their grandchild. Bearing witness to the suffering of their child and an inability to ‘make things better‘ were recurrent themes. The essence of grandparents’ experiences was interpreted as focusing on fulfilling a parenting role to their child.
Conclusions and implications The research identified that primary motivation of grandparental support stems from their role as a parent, and not as a grandparent.
The breadth of pain experienced by grandparents is complicated by the multigenerational positions they occupy within the family. The transition from before to after death exacerbated the experience of pain. The findings from this study suggest the development of practice to better understand and support grandparents of children with a life-limiting condition during life, in addition to bereavement support.
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