Postoperative information needs and communication barriers of esophageal cancer patients

• Published in: Patient education and counseling Vol. 88; no. 1; pp. 138 - 146
• Main Authors: Henselmans, Inge, Jacobs, Marc, van Berge Henegouwen, Mark I, de Haes, Hanneke C.J.M, Sprangers, Mirjam A.G, Smets, Ellen M.A
• Format: Journal Article
• Language: English
• Published: Oxford Elsevier Ireland Ltd 01.07.2012; Elsevier
• Subjects: Adult; Aged; Biological and medical sciences; Cancer; Communication Barriers; Esophageal cancer; Esophageal Neoplasms - psychology; Esophageal Neoplasms - surgery; Facilitators; Female; Follow-Up Studies; Health Knowledge, Attitudes, Practice; Health Services Needs and Demand; Health Status; Humans; Information needs; Internal Medicine; Interventions; Interviews as Topic; Male; Medical sciences; Middle Aged; Miscellaneous; Nursing; Patient Participation; Physician-Patient Relations; Postoperative Period; Prognosis; Public health. Hygiene; Public health. Hygiene-occupational medicine; Qualitative Research; Quality of Life - psychology; Self Care; Surveys and Questionnaires; Netherlands; Information needs; Esophageal cancer; Physician–patient relations; Patient participation; Communication barriers; Belief; Postoperative; Testimony; Participation; Esophageal disease; Patient; Method; Malignant tumor; Information; Health staff patient relation; Interview; Need; Cancerology; Cause; Know how; Cancer; Communication
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2011.12.004

Abstract Objective Given the poor prognosis of esophageal cancer and the impact of surgery on health-related quality of life (HRQL), addressing patients’ postoperative information needs is important. This study aimed to examine (1) the content and type of patients’ information needs and (2) patient perceived facilitators and barriers to patient participation. Methods Interviews were conducted with 20 purposefully selected esophageal cancer patients. Open and structured questions were alternated. The transcribed interviews were analysed inductively and deductively, using MAXqda. Results Patients’ post-operative information needs concerned HRQL, medical care and prognosis, covering several sub-domains. Different types of needs were identified, e.g., requests for information about cause, course and self-management. Barriers to patient participation mostly reflected beliefs and skills, and could be categorized into agenda and communication barriers. Facilitators of patient participation reflected physician, patient and interaction characteristics, companion support and pre-visit preparation. Many patients saw merit in pre-visit preparation interventions; few endorsed skill-building interventions. Conclusion This study listed the postoperative information needs of esophageal cancer patients. Moreover, it gained insight into patient-perceived barriers and facilitators of patient participation. Practice implications The findings demonstrate what information physicians should have available and informs interventions to support patients in meeting their information needs.