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From shock and uncertainty to a fight for survival

2018-09-27

A new study from Malmö University provides a deeper understanding of how breast cancer affects women and their families. 

Annette Holst Hansson explains how women with breast cancer are caught between hope and despair in her thesis titled On a journey for survival: Everyday life during radiation therapy from the perspectives of women with breast cancer and their families.

Many try to keep up the façade while inwardly wrestling with negative emotions. They need support from both their families and the health care system.

"There’s a lot of research on breast cancer among women but little knowledge about their experiences and the sort of support they receive,” says Holst Hansson. “This was the starting point for my research.”

The thesis consists of four sub-studies. In the first, 20 women were interviewed about how they experience and manage breathing adapted radiation therapy (BART). BART aims to minimise the risk of heart disease as a side effect in women receiving radiation therapy on the left side of their body.

“The results show that the women felt that breathing became a coping strategy throughout the treatment process. Certainly, they felt a pressure to perform, but most experienced it as a positive way to participate in their own survival,” says Holst Hansson.

The shock of diagnosis

In the second sub-study, Holst Hansson explored how women from former Yugoslavia and women from Iraq experienced their daily lives during radiation treatment.

Overall, women experienced diagnosis as a shock. They perceived it as a death sentence and at the same time something they had to overcome as they started down a narrow path to survival.

"The Iraqi women in particular wanted to keep their chin up and didn’t want to tell their children or family in their home country how they were affected by it," says Holst Hansson. “This made them feel very isolated.”

“The Yugoslav women were more careful not to tell employers and coworkers. Both groups experienced nurses as a great support, but more support is needed to facilitate communication with their immediate circles.”

The third study investigated families’ lived experience when a family member is diagnosed with breast cancer. A total of 19 people from six different families were interviewed. 

“All expressed that life as they knew it was in ruins as a result of the diagnosis. They felt they were fumbling in the dark to regain security. Families seek help from friends and relatives, but this sometimes leads to a feeling of losing control. They often also struggled with guilt surrounding their difficulties in communicating fears and emotions.”

Family-focused care 

Nine families where the woman was diagnosed with breast cancer and receiving radiotherapy were included in the fourth sub-study. Each family participated in three short family health conversations lasting between 15 and 25 minutes. The conversations focused on identifying the family’s strengths and resources.

“Many found these conversations valuable but felt they were offered too late in the treatment trajectory,” says Holst Hansson.

“The conversations allowed them to be heard and verbalise their thoughts and feelings. However, these tools need to be offered to families soon after the diagnosis. There is a lot of room for improvement and development of supportive interventions for women with breast cancer and their families.”

Text: Helena Smitt

Last updated by Maya Acharya