Centre for Cancer Biomarkers CCBIO

Unveiling the journey of ovarian cancer patients

Karen Rosnes Gissum defended June 28, 2024 her PhD thesis "Unveiling the Complexities: Patients’ and Healthcare Providers’ Perspectives on Understanding and Managing Ovarian Cancer" at the University of Bergen. This is a unique CCBIO doctorate work focusing on the patient and healthcare worker perspective and not the actual research. Nevertheless, objective measures like biomarkers were seen as sources of reassurance, control, and hope for the patients facing the severity of this disease.

Group photo.
Karen together with the evaluation committee Simen A. Steindal , Tone Merete Norekvål and Karina Dahl Steffensen.

Main content

Ovarian cancer presents a profound challenge to the medical field on account of its seriousness and complexity. Despite advances in the field, particularly in precision oncology, the prognosis of ovarian cancer remains poor. Patients living with ovarian cancer endure a multifaceted journey, including debilitating side effects, which pose a challenge to our healthcare system.

Understanding the patient and the healthcare worker

Given the gravity of the disease, patients require more than just clinical expertise from their healthcare providers; they need compassionate communication and holistic care. To deliver effective care, healthcare professionals must be well-versed not only in the medical complexities but also in the broader aspects of the disease and its impact on patients’ lives. Despite extensive documentation on ovarian cancer as a disease, information on the illness and patient and healthcare worker perspectives of living with ovarian cancer are still lacking. This project aimed to investigate how patients and healthcare professionals understand and act upon the illness and disease trajectory of ovarian cancer. 

Interviews and group discussions

By employing phenomenology as methodology and adopting a qualitative design, a total of five focus group discussions with one group of patients with ovarian cancer (n=4), nine individual interviews with gynecologists in oncological settings (n=9), and five focus group discussions, each with a different group of nurses working with gynecological oncological patients (n=26) were conducted. 

Limited understanding of the patient's illness experience

Patients with ovarian cancer undergo a profound upheaval as they transition from health to unhealth and grapple with loss of identity and estrangement from their bodies. Expressing the complexities of their experiences proves challenging, prompting patients to withdraw even as they seek supportive relationships with healthcare providers. Both gynecologists and nurses perceive ovarian cancer as a brutal and devastating condition. While nurses strive for holistic care, gynecologists primarily focus on disease treatment and the potential offered by medical technology. Despite advancements in technology that have the potential to understand the disease and improve the prognoses of patients, healthcare professionals’ understanding of patients’ illness experience is still limited. Furthermore, healthcare professionals often maintain a certain distance from the profound tragedy of the disease as they grapple with the emotional weight, and time constraints imposed by the system, inadvertently obstructing their comprehension of patients’ illness experiences. 

A need for holistic care and a patient-centered approach

This project delves into the complex dynamics of understanding and managing ovarian cancer from the perspectives of patients and healthcare providers. Through phenomenological inquiry, Karen has unveiled the journey of these patients as they grapple with profound physical and emotional challenges. Her findings emphasize the significance of holistic support in delivering care that better addresses the individual needs of ovarian cancer patients. Overall, this project underscores the need for healthcare professionals to embrace a more patient-centered approach, and that healthcare professionals need to be aware of and acknowledge the experiences and needs of ovarian cancer patients related to patient care and disease progression beyond the medical-technological treatment of the disease. 

Congratulations to Karen on a great doctorate work!