"I don't want this to be in my biography": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease

Title

"I don't want this to be in my biography": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease

Creator

Flury M; Orellana-Rios C; Bergstrasser E; Becker G

Publisher

Palliative Medicine

Date

2018

Subject

human; child; male; terminal care; clinical article; diagnosis; comfort; palliative therapy; conference abstract; friend; Switzerland; oncology; semi structured interview; qualitative research; grandchild; grandparent; literature; cause of death; memory; son

Description

Background/aim: Pediatric Palliative Care (PPC) in hospitals mainly focuses on the parents and siblings of children suffering from a life limiting disease. However, most grandparents are also highly involved in the caring of the child and require additional attention. As little is known about the experiences of grandparents losing a grandchild, this study aimed to address this research gap by investigating the experiences of grandparents throughout the end of life care and after the death of a grandchild. Neurological and oncological diseases are the most common causes of death in children older than one year. Methods: A qualitative approach using semi-structured interviews was chosen. Fifteen grandparents of ten deceased children were interviewed. Four grandchildren died due to an oncology disease and six to a neurological one. Participants were recruited among the families attended by the PPC team of a children's hospital in northern Switzerland. Grandparents were interviewed at least one year after the death of the grandchild. The data was analyzed employing reconstructive interview analysis. Results: Regardless of the diagnosis and death circumstances of the child, participants described major impact that the child's death had on them and their entire family. Grandparents felt obliged to support the family and constantly be a supportive pillar for the parents. They beared a double psychological burden as they care and mourn twice; for their dying grandchild and for their daughter or son. Grandparents also struggled with communication difficulties concerning disease and death when in contact with other family members, friends and acquaintances. They tried to make sense and processed their loss by remembering the deceased child and finding comfort in the fact that the child and the family did not have to suffer longer painful symptoms. All participants reported being grateful for the time they were able to spend with their grandchild. Conclusion: These findings emphasize the importance of understanding and identifying the suffering of the grandparents. PPC teams can achieve this by actively making contact with them, taking their concerns seriously and demonstrating appreciation for their role in supporting the family.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

August 2018 List

Pages

111-111

Issue

1

Volume

32

Collection

Citation

Flury M; Orellana-Rios C; Bergstrasser E; Becker G, “"I don't want this to be in my biography": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease,” Pediatric Palliative Care Library, accessed November 21, 2018, https://pedpalascnetlibrary.omeka.net/items/show/15539.

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