The patient's lived experience of patient-centered care and participation in treatment decisions is one of the most important and expanding areas in contemporary psycho-oncology, because cancer is not just a physical disease, but a multi-layered experience that affects a person's perception of the body, identity, independence, future, family relationships, and meaning of life. In such a situation, the quality of care cannot be answered solely on the basis of biological indicators. The tumor or the success of medical treatment should be evaluated, but also the question of how the patient experiences the care process, how much he feels seen and heard, and whether he has a real place in the decisions that directly affect his or her life. Patient-centered care is based on the principle that the patient is not a passive person in front of the health system, but rather a human being with values, preferences, emotional needs, personal beliefs, and life goals, and the treatment plan should be formed according to these characteristics. From a psycho-oncology perspective, this approach is particularly important because the experience of cancer is often associated with feelings of threat, uncertainty, lack of control, anxiety, depression, fear of death, and worry about the future, and the quality of the patient's interaction with the treatment team can play a decisive role in how he or she adjusts to this experience.
Therefore, in the study of patients' lived experience of patient-centered care, the goal is not simply to measure the level of satisfaction or to calculate the frequency of participation, but also to reveal the meaning that the patient receives from "participation", "respect", "heard", "choice", "trust", and "decision-making". Two patients from the same treatment process may have completely different experiences because the experience of care is influenced by personal history, personality, culture, family relationships, level of health literacy, disease beliefs, and the level of social support. From this perspective, the phenomenological approach can provide deeper access to the patient's mental world and reveal hidden dimensions of the cancer treatment experience that are not easily identifiable in quantitative tools.
In patient-centered care, participation in treatment decision-making is an important indicator of respect for patient autonomy. True participation is formed when the patient receives adequate and understandable information about their condition and treatment options, is able to ask questions about potential benefits and risks, express their preferences and concerns, and ultimately play a role in a decision that affects their body and life. However, patients' lived experience shows that participation does not necessarily mean independent decision-making without assistance. Many patients facing cancer may prefer to share part of the decision-making responsibility with their doctor or family due to fear, anxiety, disease severity, or complexity of medical information. Therefore, patient participation should be understood as a flexible process tailored to individual preferences, rather than as a fixed pattern that applies equally to all patients.
One of the important themes in the patient experience is the feeling of being heard. The patient experiences truly patient-centered care when the therapist considers emotional concerns, family problems, fears, and priorities in addition to physical symptoms. Active listening, empathetic communication, and taking the time to talk can create a sense of psychological security. In contrast, hasty communication, excessive use of specialized terminology, interruption of the patient's speech, or mere focus on the results of the tests may create the feeling that the person has been reduced to a "medical record." This experience can increase the psychological distance between the patient and the treatment team and provide the basis for mistrust or distress.
Trust is another central element of the patient-centered care lived experience. A patient with cancer is forced to make decisions whose consequences they cannot fully predict at many stages of treatment. In such a situation, trust in the expertise, honesty, and benevolence of the treatment team is of great importance. When the patient feels that the information is presented in a transparent manner and that the physician considers their interests and values, it becomes easier to participate in decision-making. In contrast, ambiguity in information, a sense of secrecy, or an experience of neglect can undermine trust and lead the patient to become overly dependent or withdraw from decision-making.
From a psycho-oncological perspective, a sense of control is one of the most important concepts that links the experience of participation to a patient's mental health. Cancer may drastically reduce a person's sense of control over the body and the future. Participation in treatment decisions can rebuild some of this lost control. Even small choices, such as the right time to receive information, determine how much family attends meetings, or express a preference for how to receive psychological support, can reinforce a patient's sense of agency. This agency may lead to increased self-efficacy, better adaptation, and a decrease in feelings of helplessness.
Research evidence in the field of cancer care suggests that a patient-centered experience is associated with outcomes such as greater satisfaction with care, better care communication, higher trust, and more effective participation. However, qualitative studies are particularly valuable because they show how these concepts are experienced in real life. One patient may experience "participation" in the opportunity to ask questions, another patient in being able to choose between treatment options, and another patient in the experience where the physician has asked about their personal goals and concerns before making a decision. Therefore, participation should be considered beyond formal and administrative indicators.
In the lived experience of patients, the family also plays an important role. In many cultures, treatment decisions in cancer are not purely individual in nature, and family members are involved in receiving information, emotional support, and even choosing treatment options. This presence can be an important source of support, but if the patient's preferences are ignored, it may lead to limited autonomy. Therefore, patient-centered care must strike a balance between family support and the patient's right to choose, allowing the patient to determine the extent of family involvement.
One of the important applications of qualitative findings in this field is to design psycho-oncological interventions based on patients' real experience. The results of in-depth interviews can show at which points in the treatment process patients experience the most feelings of helplessness, fear, or distrust. Based on these findings, patient education programs, decision-making counseling, distress reduction interventions, and communication training can be designed for treatment team members.
Despite the importance of this approach, the implementation of patient-centered care in clinical settings is fraught with challenges. Physician time constraints, large patient volumes, complexity of treatment decisions, disparity in health literacy levels, economic pressures, and shortage of psycho-oncology specialist personnel can all hinder the realization of true participation. In addition, not all patients have the same desire or ability to participate, and some may leave decision-making to the physician or family at critical stages of the disease. Therefore, imposing participation can be contrary to the core patient-centered care philosophy.
Limitations of qualitative studies include the relatively limited sample size, the cultural and social context of the findings, the impact of the researcher-participant relationship, and the difficulty of directly generalizing the results to all patients with cancer. The experience of a patient with breast cancer may differ from that of a patient with leukemia or advanced cancer, and even patients with one type of cancer may have different experiences based on age, gender, stage of disease, and family status. Therefore, in interpreting qualitative findings, special attention should be paid to the context and characteristics of the participants.
It is suggested that future researches use phenomenological methods, grounded theory, and thematic analysis to investigate the experience of patients at different stages of the cancer pathway and pay attention to the differences in the experience of participation at the time of diagnosis, initiation of treatment, maintenance period, recurrence, and palliative care. Also, the combination of qualitative and quantitative methods can provide a deep understanding of the patient's experience and at the same time measure outcomes such as quality of life, psychological distress, satisfaction with treatment, and decision-making conflict. Training of cancer treatment professionals in the field of empathetic communication, active listening, shared decision-making, and cultural sensitivity should also be considered as one of the priorities of the cancer care system. Patients' lived experience shows that patient-centered care is more than just a way of organizing health care, it is a human-therapeutic relationship in which the patient feels that his or her identity, voice, choice, and dignity are preserved in the treatment process. Participation in decision-making is of real value when the patient is not only aware of the treatment options, but also feels that his or her personal preferences and goals are important to the treatment team. From a psycho-oncology perspective, being heard, trusted, controlled, and being able to participate can strengthen part of the patient's psychological capacity to cope with the uncertainty and threat posed by cancer. Therefore, the study of patients' lived experience can reveal the gap between what the health system perceives as "patient-centered care" and what the patient actually experiences, and pave the way for a more humane, participatory, and psychological care design. In this framework, the patient with cancer is not a passive recipient of treatment, but a human being with experience, meaning, preference, and authority, and the true quality of care is realized when these dimensions are considered alongside medical interventions.