You feel very tired in the head after receiving cancer treatment. I began to wonder if the brain would ever come back again.
Ellen Torkelsen works full time today. The brain works as before. But in 2020, she was one of 37,000 Norwegians diagnosed with cancer. A difficult treatment came with her. radiation. Chemotherapy. And then – it was declared valid in 2021.
Even if you do not have cancer, you are still affected after treatment. There are courses on diet and exercise. She says I was also worried about the brain.
Plus, she’s always been a reading horse. So when she was offered to join a reading group at Vardesenteret in Stavanger, the choice was easy. The Ward Center is a meeting place in association with the Cancer Society.
It was developed in England
Shared reading is a method that has gained ground in Norway in recent years. And before you ask – no, there is currently no good Norwegian word for common reading.
Some call them reading groups. Others use the somewhat unliterary term “brain spa”. In any case, you can imagine a kind of reading circle with up to ten participants. But unlike traditional reading circles, these groups are led by a method-learning reading leader.
And it’s really quite simple: the reading leader reads a fictional text aloud and then leads the conversation around the text afterwards. Participants do not know in advance what text they will read.
Shared Reading was developed in England and is used there in the health sector, prisons and addiction treatment. In addition, they use the method in libraries and schools.
But this is not a curative method.
In Co-Reading the focus is not on text analysis either, but on the experience itself. Reading guides also refer to it
their websites: “We read to become wiser towards ourselves – and others.”
Researcher: – Art and culture are good for health
– I was curious as to how Common Reading works for cancer patients. We know that having or being diagnosed with cancer can have devastating consequences on patients’ lives. even after the end of treatment.
Researcher Tini Rees-Andersen at the Reading Center at the University of Stavanger says so. She researches ‘shared reading’ and set up reading groups in Stavanger as part of her Ph.D.
She says the World Health Organization notes that art and cultural experiences can have an impact on the quality of life of both healthy and ill people.
However, there is little focus on the mental health of people who are or are undergoing treatment for cancer.
– We can talk about what is difficult for others to understand
Sword Sorbo was among those who joined.
– I was curious and thought it was very exciting to be able to participate in the research. Now I just want to tell the whole world about it. Everyone should have this opportunity! Says.
She says she came home from the meetings with more energy and a sense of being part of a community with others in the same situation.
Being a cancer patient is a separate experience, and it is not always easy to talk about it with relatives or friends. In this group, literature has provided the opportunity to talk about things that are difficult for others to recognize or understand.
The physical and digital groups worked fine
In order to gain insight into how participants experience “shared reading,” Riis Andersen created both physical and digital reading groups.
The study involved 12 cancer patients between the ages of 23 and 69, all of them women, although both Ress Andersen and the participants wished they had some men with them.
The twelve women were in various stages of cancer treatment. Some have been declared free of cancer. Others were treated.
Participation consisted of being part of reading groups and sharing ideas afterwards in writing, audio recordings, and in questionnaires. After the reading groups period ended, the researcher conducted a group interview with the participants. It is the audio recordings and interviews that Andersen used as the basis for his studies.
Participants met once a week for six months. Elin Torkelsen loved the reading group’s method so much that she signed up for both the physical and digital version.
– It was great to be in good surroundings in Vardesenteret and to meet physically. But the digital group also worked well. She says the earnings were the same.
Researcher Reese Andersen also participated as a participant and observer in the groups.
– I noticed that the participants gave space and listened to each other. If one participant had a lot on their mind, the others would listen and allow the person to speak without interrupting.
It seemed as if the shared experience they had as cancer patients affected the mood and tone of the group, she says.
– Participants say they can come to the reading groups as they were. There was a respectful tone among the participants. This means that it is safe to share different points of view and ideas, both on texts and on experiences you want to share from your own life.
Room to share as you wish and can
Eileen Turkelsen thinks the absence of the need to perform was important.
– Some did not have the energy to participate in the discussion. Some wanted a script in which the narrative would be linear. In other words, it wasn’t hard to understand the procedure because it was hard to keep up when it got too difficult.
Sometimes the reading leader had to repeat the text, she says, because the participants struggled to focus.
– It was also nice if the texts were very short and read aloud. In regular reading circles, you read yourself, preferably thick novels. Here you can also just listen, as you say.
Through literature came stories.
– Suddenly someone replied to a text, so there was room to talk about it. It was crucial that everyone be in the same position. Everyone had their stories, both as patients and in their lives on the outside. We knew that the stories received were classified.
Open literature talks
There is an idea behind the research project that sharing literary experiences can be good for health. But even if participants can share from their own lives, shared reading groups are not therapeutic in the traditional sense.
Participant Saif Sorbo believes that the fact that the talks revolve around literature makes them more open and exploratory compared to regular discussion groups.
– We interpreted the texts we read differently and were in touch with completely existential themes. Literature was the opening and creating many avenues for conversations about very important things. It’s something very different from groups where you have to ‘talk about having breast cancer’ with more controlled topics related to technicalities, emotions, processes, etc.
Participant Turkelsen says that although it wasn’t therapeutic as such, the texts created new, healthy ideas.
Many of the texts were about topics that could relate to our upbringing, and nature was often the subject. There were many oak trees. I was inspired by the idea that nature slowly takes its course over time. You look at what is there, and somehow let it go, as you say.
– We also read many humorous texts. We discovered that many of the lyrics were about lonely ladies sitting at home when the man went to work. We have identified ourselves in it. You feel at home after the treatment, too. He can be lonely. Which is exactly why it’s great to go to these groups, too. Knowing you’re useful, Turkelsen says.
associated with the theory of self-determination
In the study, researcher Andersen argues that there are some things that come to light that enable one to understand why cancer patients benefit so much from being part of reading groups.
The experiences of being useful and being part of a community, and being able to participate in something they enjoyed in a way that was stimulating, are important factors.
I linked this to what is called the theory of self-determination. It is a theory from psychology. In short, this means that we all need to be independent, feel competent and have good relationships with others.
– For cancer patients, everyday life is often characterized by the opposite. Andersen believes that participating in Shared Reading groups can be an important contribution to giving them these important experiences again.
She says these findings may not be unique to cancer patients. At the same time, the shared experience as patients was important for the participants in these groups.
– They appreciated having a room where they could be who they were, where they got a break from life on the outside and involved in a safe setting.
Torkelsen later participated in open reading groups.
– It’s also very nice, but it was a very special thing to gather in a group of people who shared some experiences.
treat the illness
For Ellen Turkelsen, her head is gradually starting to work as before.
– It’s like a different trim. There is a lot of talk about the need for physical training gradually, but the same applies to the head. You start small. Now I feel as before.
She became so interested in the literature she came across that she went home and googled authors and read other literature by them.
Seif inspired Sorbo to write his own poems. She believes it has helped her own treatment of the disease.
– I hope many municipalities will open their eyes and offer this. Not just for cancer patients. I am sure that people who suffer from other diseases or suffer from other things can take great pleasure in participating in reading groups, as you say.
Tenny Reese Andersen: Restoring autonomy, competence, and relationship: experiences from two co-reading groups of people with cancer. Frontiers in Psychology2022. Doi.org/10.3389/fpsyg.2022.1017166.
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