Research and commentary

When a child dies, grandparents have unique support needs, study finds

The emotional pain felt by grandparents is often overlooked 

The emotional pain felt by grandparents is often overlooked 

Grandparent
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Study finds grandparents who experience the death of a grandchild are in a unique position and have needs that can go unmet. Christine English looks at the evidence and implications for children's nurses.

Tatterton MJ, Walshe C (2019) How grandparents experience the death of a grandchild with a life-limiting condition.  Journal of Family Nursing.  25, 1, 109-127.

Aim

To explore how the context of family affects the experience of grandparents and how grandparents conceptualise the illness and subsequent death of a grandchild. 

Methods

Seven grandparents took part in the study, recruited through children’s hospices in the north of England. An interpretive phenomenological approach was used, and data collected through semi-structured interviews, which were audio recorded and transcribed.

Findings

Four themes were identified that focused on emotional pain experiences: conflicting roles of parent and grandparent, transition from before to after their grandchild’s death and sources of motivation, drive, and resilience. Grandparents were reluctant to burden family or peers with their distress and often their needs remained unmet as they tried to support their family.

Conclusion

The deterioration and death of a grandchild led these grandparents to suffer a series of losses and experience movement between their identity as parent and grandparent. Their losses and the impact of the bereavement on the whole family, combined with their feelings of survivor guilt, experience of bearing witness and disenfranchisement created an experience of grief unique to grandparents. 

Grandparents have unique support needs

This study offers a rare insight into the death of a child with a life-limiting or life-threatening condition from a grandparent’s perspective. While an important topic for exploration and greater understanding, it is an under-researched area. The sensitive nature of the enquiry, potential difficulties in locating and accessing participants and ethical concerns have perhaps deterred previous research.

Participants talked frankly to researchers about their experiences despite their sadness. Their willingness to share their views and reflections helped researchers uncover potential ways to improve the care and support of grandparents facing such experiences.

Family-centred care continues to be the cornerstone of children and young people’s nursing in the UK, but the findings of this study highlight that the whole family’s needs may not always be considered and met by healthcare professionals. 

Perhaps understandably, care and attention is often focused on the child and the parents, leaving others in the family to struggle silently with their own experiences. Grandparents did not wish to add to the distress of families and peers by expressing their own emotional pain. The unique position of grandparents in a family and the special relationships they have with grandchildren is recognisable in this study and acts as a reminder of the complexity of family structures and the important roles grandparents play in family life. 

Lessons from this study that can be used to improve practice include the recognition of grandparents as parents and grandparents. The researchers suggest that effective support for grandparents in this situation needs to centre on negotiation of their roles and an acknowledgement of them as a resource to the family. Care may be improved if healthcare professionals are willing to acknowledge the impact of grandparents’ involvement and work with them to support them to maintain their vital roles as parent and grandparent.

References


Compiled by Christine English, principal lecturer, Northumbria University on behalf of the RCN’s Research in Child Health community

 

 

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