PhD project

"The final question can not be answered by anyone anyway ..."

Cancer Patients' Use of and Experiences With an Interactive Health Communication Application (IHCA) During Treatment and Rehabilitation for Cancer

Project period

2008 - 2013

Funding

The Norwegian Cancer Siciety

Abstract

This thesis investigated what issues patients with cancer raise, and the experiences they have, when they are given access to a technological health intervention in their own home. The broader context of the thesis is the increased development and application of technological systems into patient homes and lives in today’s health care.

The patients who participated in the study had access to WebChoice, an Interactive Health Communication Application (IHCA), designed specifically for patients with breast and prostate cancer. WebChoice assisted patients’ with symptoms management, information and opportunities for exchanging experiences with other patients in an online forum. WebChoice included also and Online Patient Nurse Communication Service (OPNC) that allowed patients to send secure messages to oncology nurses with questions and concerns.

The aims of this thesis were to (1) explore the use and content of patient online messages sent to oncology nurses;  (2) investigate emotional cues and concerns (C&C) expressed in these messages;  (3) explore how nurses responded to patient C&Cs in their messages; and (4) investigate how patients with cancer experience using WebChoice in their homes.

569 messages from 60 patients and 5 oncology nurses were analyzed through the use of qualitative content analyses and TheVerona Coding Definitions of Emotional Sequences. Qualitative interviews were conducted with 10 low, medium and high frequency users of WebChoice.

Patients’ expressed many serious and unanswered questions and emotional distress in their communication with oncology nurses. Oncology nurses responded to a great extent to patients’ expressions of emotion in these messages, offering both empathy and informational advice. High frequency users of the system defined WebChoice as a “friend” in their life, while low users were more likely to describe it as a “stranger.” Access to WebChoice encouraged the high frequency users especially to assume an active patient role, searching intensively for any information that might improve their situation with cancer. For some patients, access to WebChoice created an almost “compulsive” need to search for answers to existential questions that were essentially insoluble. The study showed that the patients’ interaction with WebChoice generated a variety of emotions, including “calmness,” “normalization of symptoms,” “being part of a community” and “feeling supported,” as well as feeling “upset” and “vulnerable.” For some users, interaction with WebChoice stimulated an increased focus on illness.

Online Patient Nurse Communication (OPNC) can be a valuable supplement to traditional health care. However, health care providers who use IHCAs in their interaction with patients need to be aware that health care technology can play an active and ambivalent role—supportive as intended, but also a potential source of increased insecurity and that is able to create a heightened, undesired awareness of being ill.  These insights are important for health care policy makers and administrators to keep in mind when offering IHCA to be used in the homes and lives of patients.