Background: Participation is an important aspect in person-centred care and is based on respect for the individual and individual conditions. Patients report that healthcare is not always holistic and often provides insufficient opportunities for them to participate in their own care.
Each year, approximately 70,000 individuals are diagnosed with cancer in Sweden. Although there have been advancements in treatment and survival rates, patients often report a lack of holistic perspective and continuity, as well as limited opportunities to participate in care decisions. Additionally, there has been a shift towards more treatments being administered at outpatient clinics or in patients’ homes, reducing opportunities for information exchange between patients and healthcare providers regarding diagnosis and treatment.
One of the goals of the Swedish National Cancer Plan is to allocate a contact nurse to every cancer patient. The contact nurse is intended to be the main care contact for patients, ensuring their opportunities to participate in their own care, providing high-quality information, assessing needs, and offering support.
Aim: The overall aim of this thesis was to explore patients’ experiences in cancer care, to enhance understanding of their participation and identify key factors that influence their involvement in their own care.
Method: Studies I and II were population-based cross-sectional studies that included patients diagnosed with gynaecological, haematological, head-neck, or upper gastrointestinal cancer in the Stockholm and Gotland regions in Sweden during 2014 (n=869), 2016 (n=1003), and 2018 (n=682). Study I compared patientreported data on participation, perceived information, and access to supportive care resources between 2014 and 2016, before and after introduction of the co-ordinating contact nurse role. Data were collected using EORTC QLQ-C30 and QLQ-INFO25 as well as a study specific questionnaire. In Study II, investigated associations between patients’ activation levels, experiences of perceived participation, the helpfulness of received information, and sociodemographic factors. Data were collected using PAM-13©, EORTC QLQ-C30 and QLQ-INFO25 and a study specific questionnaire. Study III conducted cross-sectional assessment to evaluate the agreement between patient and contact nurse pairs (n=63) on perceived participation during the pre-treatment information session for cancer, using the dyadic Option scale. Factors impacting the agreement were investigated with PAM-13®, HADscale, and study-specific questions. Study IV employed semistructured interviews with patients (n=14), planned for curative cancer treatment to explore their experiences of participation during encounters with the contact nurse. The interviews were analysed, using a qualitative inductive approach according to Elo and Kyngäs.
Results: Study I found higher patient-reported values for perceived health-related patient information, availability to supportive care resources, e.g. increased access to contact nurse and individual written care plans, as well as an increase in opportunities for participation after the introduction of the coordinating contact nurse role. In study II patients’ activation level (self-reported knowledge, skills and confidence) were found associated with their opportunities for participation and perceived health-related information. Study III found low levels of agreements between patient-contact nurse pairs. Factors impacting the level of agreement were mainly related to the patients reported depression symptoms. Just over half of the patientcontact nurse pairs description, in the open-ended question, captured similar issues discussed during the encounter. In study IV, the analysis revealed an overarching theme: Dealing with an entirely new situation, referring to how the illness affected the patients’ entire lives. Experiences of participation were linked to understanding of the situation.
Overall conclusion: Patients’ experiences of participation vary and are influenced by their activation level (self-reported knowledge, skills, and confidence) and their perception of health-related information. While many patients reported satisfaction with their interactions with their contact nurse prior to initiating cancer treatment, discrepancies were noted in perceived participation and understanding between the parties. Establishing trustful relationships and ensuring clear communication, tailoring information to the patient’s needs, and identifying and supporting patients’ understanding of their situation are crucial for enhancing patient participation and achieving personcentred care.