Left Hanging in the Air

Living With Cancer as Expressed Through E-mail Communications

Gro Hjelmeland Grimsbø, MS, RN; Arnstein Finset, PhD; Cornelia M. Ruland, PhD, RN

Disclosures

Cancer Nurs. 2011;34(2):107-116. 

In This Article

Abstract and Introduction

Abstract

Background: Cancer patients experience many physical, psychosocial, and existential problems and worries during their illness. To support patients in managing their illness, we implemented an online patient-nurse communication (OPNC) service, where breast and prostate cancer patients could ask questions and receive advice from oncology nurses.
Objective: The aim of this study was to explore the use and content of patients' e-mail messages sent to oncology nurses and thus gain a "snapshot" of patients' experiences of living with cancer as expressed through these messages.
Methods: Using qualitative content analysis, 276 messages from 60 breast and prostate cancer patients were analyzed. Messages were coded into categories and major themes. Both manifest and latent content was coded.
Results: Four main themes emerged from patients' messages: (1) living with symptoms and side effects, (2) living with a fear of relapse, (3) concerns for everyday life, and (4) unmet information needs from health care providers.
Conclusions: Patients used the OPNC service actively to pose questions and raise concerns related to symptom experiences, fear of relapses, and uncertainty in everyday life. However, patients also expressed experiences of being "left in a void" after being discharged from hospital and living with serious unmet informational needs.
Implications for Practice: The study demonstrated that online communication can provide patients with a space for otherwise unmet questions and worries and that they will seek support from nurses online when given the opportunity. Therefore, OPNC can be an important means and supplement to traditional health care in the effort to support patients to better manage their illness.

Introduction

An increasing number of cancer patients survive their illness, and many live with cancer as a chronic disease.[1] Worldwide, 24.6 million people live with cancer, and each year, 10.9 million are newly diagnosed.[2]

For the individual patient, having cancer implies challenging life situations all the way from diagnosis through treatment and rehabilitation. A confirmed cancer diagnosis may result in considerable psychological distress, existential concerns, and a strong awareness of one's own mortality.[3,4] For many patients, treatment decisions cause uncertainty and anxiety, especially when several treatment options are available.[3,5–8] Treatment most often involves distressing adverse effects and an impaired quality of life.[9,10] After treatment, when medical monitoring and support from health care providers are terminated, patients can experience loneliness and uncertainty.[11–13] Several studies have reported that cancer patients often live with a constant fear of a relapse or recurrence,[14–16] depression,[17] and doubts about their long-term future. These studies indicate that patients may have considerable need for support even years after they have completed treatment.[10] The ordinary follow-up support and care after cancer treatment are delivered in many different ways. In general, it involves regular medical examinations to check for recurrence or metastasis, addressing treatment-related problems, and checking for physical and psychosocial effects that may develop months or years after treatment ends.[18]

One way to support cancer patients in addition to regular medical follow-ups is to allow them to communicate online with health care providers. Studies have documented that approximately 16% to 69% of cancer patients use the Internet for health information[19] and that e-mail communication is the most common reason why patients use the Internet.[20] Studies have shown that patients are highly interested in the possibilities for the exchange of electronic messages with their health care providers[20,21] but that there has been some reluctance from physicians and concerns about workload and time demands, confidentiality, data security, and inappropriate use of e-mail, by patients.[22] So far, research on patient-provider electronic communication has focused primarily on patient-physician communication, where the perspectives of both physician and patient have been studied.[23] A recent review that explored, among other subjects, the content of e-mail messages from patients to physicians reported that most inquiries and topics in patients' e-mails addressed nonacute issues, medical information, medical condition or updates, and subspecialty evaluation.[22] To date, there is little research reported in the literature on patients' use of online communication with nurses.[23–26] This indicates that either nurses have so far only played a limited role in providing support through online communication or this area has not been much researched.

To provide patients with support in their homes aside from face-to-face visits, our research group developed and tested WebChoice, an Internet support system for breast and prostate cancer patients that allowed patients to communicate online with oncology nurses. Patients undergoing treatment or rehabilitation could ask questions to oncology nurses, discuss concerns, and ask advice where and when they needed it, and the nurses responded within 24 hours (weekdays). The electronic messages from the cancer patients provided our research group with rich material about how patients communicated online with nurses, the experiences of their illness that they wished to share with them, and the type of questions and concerns for which they sought support.

As far as we know, no earlier studies have explored in-depth online communications between patients and oncology nurses through an online patient-nurse communication (OPNC) service. Therefore, there is little previous knowledge about how cancer patients use this communication service and what they choose to express when given the opportunity for e-mail communication with oncology nurses. Because nurses have a primary focus on the consequences and management of illness and its impact on daily life, they therefore have a different role than physicians, who primarily have a medical orientation toward the disease and its treatment. Thus, cancer patients may raise different questions and concerns and communicate about their illness differently in personal communications with nurses than they would with physicians.

Against this backdrop, our study seeks to explore what cancer patients choose to express to oncology nurses about their illness situation when given the opportunity for e-mail communication. This study then sheds light upon a "snapshot" of the study participants' experiences of living with cancer as they have expressed it through this technological context of writing. This further answers the questions of how the cancer patients in our study used this patient-nurse communication tool in health care and whether this service might be useful in the care and support of cancer patients in the future.

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