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Cancer care can benefit from sharing the stories of those affected

Sharing their lived experience gives people affected by cancer a chance to reflect and can ultimately help deliver more holistic care 

Sharing their lived experience gives people affected by cancer a chance to reflect and can ultimately help deliver more holistic care

Cancer can affect every aspect of life. There are obvious implications for physical health, but it affects emotional and psychological well-being too, as well as relationships, finances and employment.

In parallel with this, there are growing numbers of people for whom cancer is a chronic illness, managed by ongoing medication, therapies and support. These individuals have a very different story to tell about their cancer experiences.

Quality of life has improved for those affected by cancer in the long term

An Institute of Cancer Research survey found that less than one third of the public think chronic disease can be

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Sharing their lived experience gives people affected by cancer a chance to reflect and can ultimately help deliver more holistic care 

Picture shows an older woman, who is wearing a scarf to hide her hair loss from chemotherapy, using a tablet to message friends and family. Talking about their lived experience gives people affected by cancer a chance to work through their feelings.
Picture: iStock

Cancer can affect every aspect of life. There are obvious implications for physical health, but it affects emotional and psychological well-being too, as well as relationships, finances and employment.

In parallel with this, there are growing numbers of people for whom cancer is a chronic illness, managed by ongoing medication, therapies and support. These individuals have a very different story to tell about their cancer experiences.

Quality of life has improved for those affected by cancer in the long term

An Institute of Cancer Research survey found that less than one third of the public think chronic disease can be managed in the long term, despite survival times for those diagnosed with incurable disease increasing exponentially.

Cancer is contradictory, elusive and intangible. In the media the old narratives such as ‘kill or cure’ or ‘the big C’ continue to colour the conversation, distracting from the progress made in improving the quality of life for those affected in the long term.

In view of this the need to tell cancer stories has never been more acute. How are we to provide what we describe as personalised care if we don’t hear the nuances of lived experience as told by people affected by cancer? We must give individuals the opportunity to talk publicly and honestly about the impact of a cancer diagnosis on themselves and on their family and friends.

Armed with this vital information, professionals can equip themselves with the knowledge needed to deliver care in a truly holistic manner.

How people affected by cancer can share their experiences

Picture shows a cover of the Bridges newsletter for cancer survivors. Talking about their lived experience gives people affected by cancer a chance to work through their feelings.

There are a number of ways in which we can continue to listen to cancer narratives. The many user involvement groups supporting transformative work across the country are an excellent way to share experiences, although they rarely intersect with the majority of front-line operational staff.

Some organisations have taken a full-blooded approach to publishing patient stories. Memorial Sloan Kettering Cancer Center in New York City publishes a quarterly newsletter for survivors called Bridges, in which patients and their families share stories of challenges, hope and inspiration that promote recovery. The newsletter is freely available to staff, patients and visitors across the enormous hospital site.

But the arrival of social media has had the biggest effect on how people affected by cancer share their experiences. Facebook, Twitter and, to a lesser extent, Instagram have led to a rapid increase in online peer support. People affected by cancer now have unprecedented opportunities to reach out and speak to others in a similar situation. But how can we explore the nuance of a cancer experience in only 280 characters or less?

Results of the 100 Voices project being hung in The Christie hospital restaurant in October 2019. Talking about their lived experience gives people affected by cancer a chance to work through their feelings.
One-word responses from the 100 Voices project being hung in The Christie Hospital, Manchester

This was the question posed by the 100 Voices project undertaken in 2019 at The Christie NHS Foundation Trust. In this project, people affected by cancer were asked to describe their cancer experience using only one word. The project used narrative therapy techniques to help participants arrive at a word that they felt best represented how they felt about their diagnosis, treatment and living with and beyond cancer at that moment.

100 Voices project reflects 100 different experiences of cancer

Narrative therapy allows clients to communicate events or pivotal moments in their lives by using stories. Individuals can work through difficult episodes as they verbalise and put words to the pictures and events in their lives.

The 100 Voices project aimed to reflect 100 different experiences of cancer – and there were many commonalities as well as differences between the words chosen.

The completed work was redesigned into a permanent art installation that now hangs in the main restaurant at The Christie in Withington, Manchester. It offers patients, relatives, visitors and staff the opportunity to reflect on the importance of sharing lived experiences in an innovative way.


Ben Heyworth is Macmillan survivorship network manager at The Christie Hospital, ManchesterBen Heyworth is Macmillan survivorship network manager at The Christie Hospital, Manchester

 

 


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