Fighting Imaginary Dragons and Battles with Arrow Snakes and Octopuses

An exploration of the experiences of children’s palliative care for forced migrant families and those who care for them.

Introduction

This exhibition comes from PhD research conducted at the University of Birmingham by Marie Clancy. Marie is a senior lecturer at the University of Exeter in the Academy of Nursing and a nursing poet.

The aim of this research was to understand and seek to improve the experiences of refugee and asylum seeking (forced migrant) families as they received palliative care for their child/children.

Little research has been conducted in this area already but you can read more about this within our systematic review of the literature.

Thirteen original poems are detailed alongside artwork inspired or created by youth advisor Jess Downing.

The poems were written collaboratively with advisory group members for the research – Young Person’s Advisory Group (YPAG), Parent Champions from a Children’s Hospice, and the Guardians (Guiding Unity and Advocating for Race, Diversity and Inclusion) hospital group. Some have also been crafted by Marie.

All the poems here have been created, as per the method in this article, by taking the research interviews conducted with family members or health care professionals (with their consent), to tell more about their experiences of children’s palliative care from a forced migration perspective.

The use of poems was a vehicle was to provide a bigger picture or more context, rather than just citing individual quotes, which allowed a fuller story to be told about each of the participants.

Where possible the author of the poem has performed their work.

All names used in this exhibition are pseudonyms to protect the identity of the real research participants.

Please note the poems here contain themes which may be difficult for some readers, as they contain details of migration trauma and the end of life care of children.

Family Tessa

The experiences of each member of family Tessa are described visually in the word clouds below.

The poem below was written for family Tessa by Hospice Parent Champion Tony. It details the differences they experienced in their care and the different perspectives of a western nurse and a refugee family.

Patience, Patients

Holly

Sit alongside, sit beside

Poem about Health Care Professional Holly written by Marie Clancy.

Family Khatri

I am here, I am lost

The poem below was written by a Hospice parent champion. It is performed by Joel.

Marian

Learning to and fro

A poem about Marian, written and performed by Esther and Beth, members of YPAG, (Young Person’s Advisory Group), a youth engagement group at Birmingham Women’s and Children’s Hospital.

Sobia

Perseverence

This poem was written for Sobia by Gursharan, a member of the Guardians (Guiding Unity and Advocating for Race, Diversity and Inclusion) hospital group.

Clara

The poem below is written by a member of the Young Person's Advisory Group (YPAG).

Just Trying to Make a Difference

Family Ahmed

The experiences of the parents of family Ahmed are described visually in the word clouds below.

The poem in the video below entitled New Lives, New Hope, written by a parent champion at the hospice, reflects the Ahmed family’s desire to improve the quality of life and care their daughters received and their gratitude for a chance to do this in the UK.

New Lives, New Hope

The two following poems have also been written for family Ahmed, by a hospice parent champion.

We Arrived

(A Refuge for the Refugee)

The leaver

Flo

Exhausted but fighting on

A poem about Health Care Professional Flo, written by Marie Clancy

Others involved in supporting the refugee families

Rebecca

Rida

Below is a poem written and performed by Mark, a member of the Guardians (Guiding Unity and Advocating for Race, Diversity and Inclusion) hospital group.

A Muslim Chaplaincy

What might help families in the future; summarised perspectives

The two images below were created by Jess Downing, aged 13, to help others to visualise what families and health care professionals detailed in their interviews might help improve the care of forced migrant families in the future.

Concluding Poems

by Marie Clancy

A kenning poem including perspectives of nurse, refugee, and the structural assailant

Written by Marie Clancy and performed by siblings at Acorns Children's Hospice reading the roles of Nurse, Structural Assailant and Refugee.

Fighting imaginary Dragons and battles with Arrow Snakes and Octopuses

Written by Marie Clancy

This final poem summarises all the perspectives in this research and is a call to arms for improvements to care for future families

For more information about this project or creating poetry from research materials please contact Marie Clancy.

Acknowledgements

Marie would like to thank all of the advisory groups involved in this study and the individual members who contributed to this artistic work. She would also like to thank her PhD supervisors Professor Julie Taylor, Professor Caroline Bradbury-Jones, Professor Jenny Phillimore at the University Birmingham.