How do grandparents experience the death of a grandchild following a life limiting condition?

Introduction: Traditionally, bereavement support for families extends to parents and siblings of children who have died following a life limiting condition (LLC). Few research studies have focused on the needs of bereaved grandparents, who are playing an increased role on the care of children with LLCs and their families. This study aimed to explore how grandparents experience the death of a grandchild from a LLC. Methods: A purposive sample of seven participants, who identified themselves as fulfilling a grandparenting role, participated in a semi-structured, in depth face-to-face interview. Transcribed data was analysed using interpretive phenomenological analysis. Ethical approval: Ethical approval was sought and granted by Lancaster University in October 2013. NHS NRES approval was not required as the participants were not the primary carers of NHS patients. Results: Emerging themes 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 (the deceased child's parent) and an inability to 'make things better' was a recurrent stressor. The essence of grandparents' experiences was interpreted as being driven by and focused on fulfilling a parenting role. Conclusion and implications: The study identified that the primary motivation of grandparental support stems from their role as a parent, and not as a grandparent. The findings from this study should assist the development of practice to better understand, and therefore support, grandparents of children with a LSC, in addition to bereavement support