The zebra in the room: an exploration of anticipatory grief in families of children with mitochondrial disease and the role of social work

Meehan, Tammy

The zebra in the room: an exploration of anticipatory grief in families of children with mitochondrial disease and the role of social work

Files

TammyMeehanCARLreport2017.pdf(2.97 MB)

Published Version

Date

2017

Authors

Meehan, Tammy

Publisher

Community-Academic Research Links, University College Cork

Abstract

This study researched the concept of anticipatory grief and used primary research to explore its affects in families of children with Mitochondrial Disease. From there it looked at what the role of social work might be in this context. In doing so, this paper considered the recommendations of the National Rare Disease Plan 2014-2018, as well as literature from foremost academics in the area of grief such as Doka, Rando and Cadell. Combining this theory with the findings of a survey completed by twenty three members of Mito Families Ireland, informed by a discussion forum, the research found that the lived experiences of these participants largely correlate to the current literature. Based on this, a number of recommendations have been made which hope to inform both policy and social work practice going forward.

Keywords

Anticipatory grief , Children with mitochondrial disease , Role of social work

Citation

Meehan, T. (2017) The zebra in the room: an exploration of anticipatory grief in families of children with mitochondrial disease and the role of social work. Cork: Community-Academic Research Links, University College Cork.