World Cancer Day: Listening to and hearing the patient's voice

"Care is not just about treating diseases, it’s also about meeting a person," says Karin Ahlberg, professor and leader of several research projects focused on cancer. "When we listen to patients' stories and build care around their unique needs, we can make a real difference!"

Care is not just about treating diseases, it’s also about meeting a person

Cancer affects many aspects of life

How does a cancer diagnosis affect life physically, psychologically, existentially, and socially? These are questions researchers are trying to answer through their projects at the Institute of Health and Care Sciences.

Karin Ahlberg leads research investigating long-term side effects in patients with brain tumors and how proton therapy can improve the quality of life for patients with anal and colorectal cancer. Her group is also analyzing biological markers to understand the link between inflammation and symptoms like extreme fatigue.

Sofie Jakobsson focuses on patients with locally advanced lung cancer, where treatment often combines radiation therapy, chemotherapy, and immunotherapy. By identifying when patient-centered support is needed the most, the research aims to contribute to guidelines that enhance patients' health during treatment. "We need to understand how the disease affects patients on multiple levels and identify measures that can support them through treatment," says Sofie Jakobsson.

Anneli Ozanne works on developing a support intervention for families where one member has been diagnosed with a malignant brain tumor. Through a patient-centered approach, the project aims to provide tailored support throughout the entire disease process, from surgery to palliative care. "Previous research shows that patients and their relatives often lack sufficient support throughout the disease process," says Anneli Ozanne. "We want to change that."

From questions to understanding

"Every individual has completely unique experiences of how their health is affected by cancer," says Sofie Jakobsson.
"By letting patients tell their own stories about their symptoms and needs, rather than just answering preset questions, we can gain a deeper understanding of the physical, social, and emotional challenges they face. This knowledge also makes it easier to promote self-care and identify the actions needed to relieve symptoms."

Karin Ahlberg emphasizes that research also focuses on providing patients with tools to manage their situation. "Even though we can’t always eliminate side effects, we can help patients understand and manage them better. It’s about empowering the person, not just physically, but also mentally and socially."

Safety, collaboration, and the right support at the right time

So what does patient-centered care mean in practice? "It’s about giving patients influence over their treatment and creating a sense of control, even in a difficult situation like cancer," says Karin Ahlberg. "This means they get a dedicated healthcare contact who follows them throughout their entire care journey. We also make sure to offer psychological support to help patients manage anxiety, depression, and existential questions that inevitably arise. At the same time, it is essential to provide support to manage physical symptoms like pain, fatigue, and nausea so that the patient’s well-being can improve on multiple levels. When we plan in consultation with the patient and their relatives, we create care that is both individualized and strengthened by the patient’s own knowledge of their needs. That’s what we aim for," continues Karin Ahlberg.

When we plan in consultation with the patient and their relatives, we create care that is both individualized and strengthened by the patient’s own knowledge of their needs. That’s what we aim for.

"The contact nurse can serve as a reassuring point and is responsible for accessibility, care coordination, and psychosocial support," explains Sofie Jakobsson.
"It’s a crucial function for patients to feel involved in their care and receive the right support throughout the disease process."

For relevant and meaningful care

Cancer treatment is often a demanding process, both physically and mentally. Patients may need to undergo multiple treatments, such as surgery, chemotherapy, radiation therapy, and immunotherapy, which affect the body, mental health, social life, and work capacity.

"A wide range of care interventions is required to support and facilitate patients and their relatives through both treatment and rehabilitation," says Sofie Jakobsson. "Therefore, continuous education and research in oncology nursing are needed to strengthen how co-created care between patients and healthcare professionals can promote health, participation, and confidence in one's own abilities."

"By working closely with patients and their relatives and truly taking in their experiences, we can develop care that is relevant and meaningful," says Anneli Ozanne.

Your story matters!

"Patient-centered care is about combining medical expertise with human understanding," concludes Ahlberg.
"Your story matters! That’s how we can build care that not only fights the disease but also strengthens the person living with it."