Individualized blended care for patients with colorectal cancer: the patient’s view on informational support

Abstract

Purpose The number of colorectal cancer patient survivors is increasing. Information and support during and after treatment are requested by patients, but questions remain on what to provide. The aim of this study was to understand what informational needs colorectal cancer patients and survivors have, with a focus on the potential support given by patient peers and the use of blended care. Methods A qualitative study using focus groups was conducted with patients diagnosed at the same hospital at least one year prior to the initiation of the study. The focus group interviews were transcribed verbatim and analyzed using deductive content analysis. Results The need for informational support varied over time and depended on individual patient characteristics. Timing was crucial and patients requested options of blended care and informational support after treatment cessation. The patients felt alone after treatment and requested assistance in communication with their next-of-kin. They also identified the value of peer support, especially to contextualize knowledge provided by healthcare. Conclusion This study showed a need for focus on individualized informational support. Blended care through integrating communication with peers online could be one way to support patients, both to enable shared decision-making as well as to provide person-centered care.

Online Communities as a Driver for Patient Empowerment: Systematic Review

“…However, it is important to keep in mind that people who have satisfied their informational and support needs may choose to leave the community or do not want to continue their empowerment progression by becoming producers or patient mentors in the online community. The reason might be that they believe to have completed their diagnostic journey, thus do not want to be reminded of their previous situation [ 83 ]. Another aspect to consider before using this type of framework is the nonlinearity of potential empowerment progression, that can happen if, for example, a new diagnosis or something else happens that affect management of condition and trajectory.…”

Invisible Work Meets Visible Work: Infrastructuring from the Perspective of Patients and Healthcare Professionals

“…Even though this increased power to the patient, and the changes in the role of the patient, and growing responsibility on the patient-side might solve the challenges healthcare is facing in relation to scarce resources, both globally and nationally, this change is not without contradictions. Due to the hierarchical nature of the patient to healthcare provider relationship, we have researched each of the stakeholder groups separately in prior studies, with focus on patients, nurses, and physicians respectively [1,14,40].…”

Preoperative Group Consultation Prior to Surgery for Colorectal Cancer—an Explorative Study of a New Patient Education Method

“…1 Flow chart of patients. The overall response rate was 88% lacking [19]. In contrast, the information given at the group consultation is based on science and proven experience from healthcare professionals.…”

“…In a time of abundant information available from many sources, the validated information provided by healthcare personnel is important for patients recently diagnosed with colorectal cancer [20]. The patient browses different information sources, not always finding reliable or accurate descriptions of the disease and the treatment options.…”

“…The data from the questionnaires were supplemented by data retrieved from medical records. The study-specific questionnaire consisted of questions previously used [11,12] and newly generated questions, developed according to an established method [13,14]. The new questions were developed by in-depth interviews with patients with colon or rectal cancer before they had gone through surgery.…”