Stories about what matters

The Thinking Ahead study explored with patients and families from diverse ethnic backgrounds their experiences and decisions concerning the future and planning for deterioration and dying.  The stories on this page are fictional but they are based on the experiences and thoughts of the participants.

Thinking Ahead stories

The eight stories on this page are fictional but they are based on the experiences and thoughts of people in the last year of life and family members after bereavement. Each story has specific themes and viewpoints that are intended to promote awareness and learning about the key findings of the research.

The short version of the story is integrated in an e learning module Engaging effectively about advance care planning with people from ethnically diverse backgrounds (you will need to register with eLfH). 

We have also developed a guide to help support the learning from these stories. This may be especially useful for facilitators using the stories in group learning.

The Thinking Ahead stories were written and produced by Andy Barrett for Excavate.

We would welcome any feedback on the stories, the impact they have on you and your practice and how we can further improve these resources. Contact us on research@loros.co.uk

Carers duty and burdens; Language & communication; DNACPR

Balwinder

Balwinder and her sister Gurpreet care for their mother who is currently in hospital. 

They are preparing for the Sikh New Year, Vaisakhi

Trust and misunderstanding; Rights; DNACPR; cancer remedies

Dave

Dave is an African Caribbean man who goes to a cancer support group.

His wife believes in dietary approaches to cure his cancer.

Discussions at a time of readiness; Aligning care to priorities; rituals

Emilija

Emilija is an Lithuanian catholic who is in a hospice and very near the end of her life. She is planning a special traditional celebration of Easter with her daughter Camilla and friends.

Autonomy and decision-making; complexities of family; Knowing the person; Communication; DNACPR

Hafsa

Hafsa is an elderly Indian Muslim woman who has had a stroke. Her daughter has moved into her house to provide her care.

Being known; Don’t make assumptions about heritage and actions/preferences; hospice

Lanfen

Lanfen is a Chinese musician who is at a Hospice Day Centre where she has unexpectedly made friends with Jim.

Complex life circumstances of migrants; Faith & Duty; Knowing the systems

Sharmarke

Sharmake, a Somali Muslim, is taking a bus to visit his father in hospital. He was angry on his last visit and staff asked him to leave.

Pressures of community and family expectations; acceptance

Krushan

Krushan, a middle aged British Asian Hindu, is largely bedbound and cared for at home by his wife Dhanashree. He is awaiting a visit from his older brother Abhijeet.

Ambivalence to planning ahead; Faith; Sustaining hope; Community pressure

Tawanda

Tawanda, a Zimbabwean man with a strong Christian faith and great love of football is dying from cancer. He lives with his wife Chibuzo.

The Stories are read by

Sokari Erekosima - Sharmarke

Jim Findley - Dave

Gurpreet Grewal-Santini - Hafsa

Violet Hais - Emilija

Mufaro Makubika - Tawanda

Irfhan Ali Mururajani - Krushan

Dipti Patel - Balwinder

Ling Peng - Lanfen

This study/project is funded by the National Institute for Health Research (NIHR) [HS&DR 17/05/30]. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.

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