RESUMO
BACKGROUND: Searching the internet for cancer-related information helps patients with cancer satisfy their unmet information needs and empowers them to play a more active role in the management of their disease. However, to benefit from the search, patients need a sufficient level of skill to search, select, appraise, and apply web-based health information. OBJECTIVE: We aim to study the operational, navigational, information, and evaluation skills and problems of patients with cancer performing cancer-related search tasks using the internet. METHODS: A total of 21 patients with cancer were recruited during their stay at the rehabilitation clinic for oncological rehabilitation. Participants performed eight cancer-related search tasks using the internet. The participants were asked to think aloud while performing the tasks, and the screen activities were recorded. The types and frequencies of performance problems were identified and coded into categories following an inductive coding process. In addition, the performance and strategic characteristics of task execution were summarized descriptively. RESULTS: All participants experienced problems or difficulties in executing the tasks, and a substantial percentage of tasks (57/142, 40.1%) could not be completed successfully. The participants' performance problems were coded into four categories, namely operating the computer and web browser, navigating and orientating, using search strategies, and evaluating the relevance and reliability of web-based information. The most frequent problems occurred in the third and fourth categories. A total of 90% (19/21) of participants used nontask-related search terms or nonspecific search terms. A total of 95% (20/21) of participants did not control for the source or topicality of the information found. In addition, none of the participants verified the information on 1 website with that on another website for each task. CONCLUSIONS: A substantial group of patients with cancer did not have the necessary skills to benefit from cancer-related internet searches. Future interventions are needed to support patients in the development of sufficient internet-searching skills, focusing particularly on information and evaluation skills.
Assuntos
Letramento em Saúde , Neoplasias , Telemedicina , Humanos , Internet , Reprodutibilidade dos TestesRESUMO
BACKGROUND: Given the increasing number of cancer survivors and their rising survival rates, rehabilitation plays an increasingly important role. Social support among patients is an essential element of inpatient and day care rehabilitation. The internet can empower patients with cancer to become more active health care consumers and facilitate information and supportive care needs. By contrast, therapists suspect that high internet use during rehabilitation may severely limit social interactions between patients, thus interfering with the patients' rehabilitation program and jeopardizing treatment success. OBJECTIVE: We hypothesized that the extent of internet use would be negatively related to social support among patients with cancer during their clinical stay as well as fewer improvements in patient-reported treatment outcomes from the first to the last day of their clinical stay. METHODS: Patients with cancer participated during their inpatient rehabilitation. Cross-sectional data, such as the extent of participants' internet use and perceived social support among patients, were collected during the last week of their clinic stay. The treatment outcomes, that is, participants' levels of distress, fatigue, and pain, were collected on the first and last day of the clinic stay. We used multiple linear regression analysis to study the association between the extent of internet use and social support among patients with cancer. We used linear mixed model analyses to study the association between the extent of internet use by patients with cancer and the change in patient-reported treatment outcomes. RESULTS: Of the 323 participants, 279 (86.4%) participants reported that they used the internet. The extent of the internet use (t315=0.78; P=.43) was not significantly associated with the perceived social support among the participants during their clinical stay. In addition, the extent of participants' internet use during their clinical stay was not associated with changes in participants' levels of distress (F1,299=0.12; P=.73), fatigue (F1,299=0.19; P=.67), and pain (F1,303=0.92; P=.34) from the first to the last day of their clinical stay. CONCLUSIONS: The extent of internet use does not seem to be negatively associated with the perceived social support among patients with cancer or with the change in patients' levels of distress, fatigue, or pain from the first to the last day of their clinical stay.
RESUMO
BACKGROUND AND AIMS: Family caregivers play an important role in assisting their family members with cancer, but their influence on the treatment decision-making process has not yet been adequately investigated. This exploratory study approached this topic via reconstructive methodology, focusing on assessing patient-caregiver relationships. METHODS: We conducted semi-structured interviews with 37 mostly elderly cancer patients (median age: 74 years) about the context of their diagnosis, treatment decision, and family support. Additionally, we interviewed 34 caregivers of cancer patients. Of these, 25 were related to patients interviewed. We analyzed the interviews via a multi-step coding method informed by Grounded Theory methodology toward characterizing patient-caregiver relationships, the treatment decision-making process, and the caregivers' role therein. RESULTS: In the majority of cases (86%), patients were being supported by caregivers. We categorized patient-caregiver relationships in regards to the caregivers' involvement in the therapy decision-making process. We found patient-caregiver interaction patterns that indicate the potential of caregivers to decidedly influence the therapy decision-making process. Yet, only in 38% of cases, a caregiver attended relevant patient-physician-consultations. CONCLUSION: Depending on the nature of the patient-caregiver relationship, the traditional concept of shared decision-making, which assumes a dyadic relationship, needs to be extended toward a more dynamic concept in which caregivers should be involved more frequently. This could enable physicians to better understand a patient's reasons for or against a therapy proposal and ensure that the patient's wishes are communicated and considered. On the other hand, strong caregiver-involvement bears risks of over-stepping elderly patients' wishes, thus violating patient autonomy.