Let me be part of the plan - Experiences of information and information needs after colorectal cancer surgery

Abstract: The overall aim of this thesis is to study the experiences of patients and next of kin with regard to information and information needs after being discharged after colorectal cancer surgery. The aim was also to study factors related to this. Different methods were combined in this explorative study in order to obtain diverse types of data. Patients who had undergone surgery for colorectal cancer at three hospitals in southern Sweden were included consecutively. The sample consisted of one main sample of 100 patients participating in the questionnaire studies (Papers I and II), and 16 patients from this sample and their next of kin also participated in interviews (Papers III and IV). Data were collected during the first seven weeks after discharge from hospital in order to cover the first period after discharge, the first weeks of recovery at home and to include the prognostic information at the post-discharge visit at the surgical department. In Papers I and II patients responded to the questionnaires EORTC QLQ-C30, QLQ-CR38, QLQ-INFO25, ECOG-PS and SOC-13 within the first 2 weeks at home and again 5 to 7 weeks after discharge. Data concerning health status (ASA), occupation (ISCO-88) and tumour stage were obtained from the computerized records. In Papers III and IV, patients and their next of kin were interviewed separately two times. The main focus was on their experiences of information at discharge and their information needs during the first seven weeks at home. All transcribed texts were analysed using qualitative content analysis. The results from Papers I and III demonstrated that patients wanted to receive more information about different areas, but they also went on to describe how they received information and what consequences this had during the first period at home. The main finding was that they wanted to participate more in the information process; to receive more information, to be part of the planning and having time to ask questions. Understanding the cancer disease and managing the worries it created was an area that patients kept coming back to, and information was vital managing both. The lack of important information caused both anxiety and insecurity, while receiving information could bring about some calm and peace. In Paper I and II, gender, preoperative health status and cohabitation explained some of the variations in the information questionnaire QLQ-INFO25, indicating that women, those who lived alone and patients with worse health status experienced less received information. Those patients are more vulnerable with regard to information after colorectal cancer surgery and need more information and support in this area. In Paper IV the next of kin reflected about the complexity and the responsibility of their own new role. This included managing their own feelings and worries for the present and the future, sharing all parts of the patient’s life and supporting both the patient and the rest of the family in different ways. In order to be able to fulfil the new role of support person, it was vital to participate in the patient’s life and to have access to the same information as the patient. The next of kin needed to be included in the patient’s cancer trajectory, receive verbal information with them and have the opportunity to ask their own questions. They wanted to know in advance the time of the discharge conversation and to be there with the patient. They emphasized the importance of being treated well and listened to during these meetings with the healthcare professionals. The expressed need to participate more in the information was articulated by both patients and next of kin. They wanted to be invited to do so and to be acknowledged as individuals. The need to have a relationship with the healthcare professionals who provided information was closely linked to how patients and next of kin valued and experienced the information. The importance of creating a foundation for mutual communication by listening, giving responses and showing interest in the individual patient was clearly present. Participating in the information meetings would not only satisfy their own needs but also assist the patient’s recall. Patients in our study needed a better planned discharge from hospital, but some were more vulnerable in this situation. Women, those with worse health status before surgery and those who lived alone expressed an increased need for information.