How Grandparents Experience the Death of a Grandchild Who had a Life Limiting Condition.

Traditionally, family-centred, children's hospice care extends to parents and siblings of children with life limiting conditions. Few studies have focused on the needs of grandparents, who play an increasing role in the families of children with life limiting conditions. Aim: To explore the experience of grandparents during the life, and following the death of a grandchild with 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 and audiorecorded in participants' own homes. Field notes were taken during and immediately following the interviews. Interviews were transcribed and interpretative phenomenological analysis used to analyse the resultant data. Findings: Seven individuals participated in this study. Findings indicated a number of contextual factors that affected 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 the 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. Key words: Bereavement, children, family centred care, grandparent, hospice, palliative care.

Name dc:type.qualificationname

Ph.D.

Level dc:type.qualificationlevel

doctoral

Grantor dc:publisher.institution

Lancaster University

Year dc:date.issued

2016

Author dc:creator

• Tatterton, Michael Jefferson