This integrative literature review included 12 empirical studies, with a total of 397 patients. The qualitative studies comprised 187 patients and the quantitative studies 225 patients. Two studies used mixed methods, and the 15 participating patients were counted once even though they were part of two data collections. The patients' ages ranged from 18 years to 91 years, and studies were from Australia, Brazil, Italy, Canada, the Netherlands, Portugal, Switzerland, Germany and the United States, see Appendix 1 for details on the included studies. The study inclusion/exclusion process is outlined according to the PRISMA structure as described by Moher (31), see Figure 2.
The results are presented in the main theme: E-health applications – promoting communication on patients’ and families’ terms, and through three sub- themes: (1) usability and feasibility of eHealth applications; (2) symptom control and individualized care promoted through eHealth applications; (3) use of eHealth applications increased sense of security and patient safety.
E-health applications - promoting communication on patients’ and families’ terms
Throughout the literature review, findings were that eHealth applications generated multiple arenas for communication on patients’ and families’ own terms, and in their own time. In all the included studies, patients' experiences were predominantly positive for eHealth applications and communication (32-43). Eleven studies described patients' practical experiences of using various technological tools to communicate digitally with their caregivers (32, 33, 35-43). In the twelfth study, patients described wanting technical communication aids both to receive and to provide information digitally, and thus facilitate communication with healthcare professionals (34).
Usability and feasibility of eHealth applications
Through technology, new opportunities and arenas for meetings were made possible, as an addition to the more common traditional face to face care meetings or conferences. Several studies described that patients perceived various technical communication aids as user-friendly and feasible (32, 33, 35-43). An example of user flexibility, was an app that could be used in the way individual patients or families wanted, either on a mobile phone, a computer or a tablet (33, 35, 39-41). Communicating via video link also worked well and was found convenient (33, 35-39, 42). Patients experienced benefits of videoconferencing as compared to telephone consultations, since the added visual dimension provided information about body language and emotions (35, 36, 40). The majority of participants in two studies were very satisfied with video meetings, and even preferred them before physical meetings (38, 40). Another advantage of videoconferencing, compared to telephone consultation, was that how patients were feeling quickly became apparent, which was found convenient by patients since they did not need to explain themselves (42). The added visual information was desired and considered useful (34). However, contradictory findings were found in two studies; one where patients favored the personal encounter and found that a deeper personal connection could not be achieved through eHealth technology (33), and in another study, some patients and families felt that they were satisfied with telephone calls and information by letter, since they found new technology difficult (34).
One important factor for adopting ehealth applications was the attitude and enthusiasm of the healthcare professionals (HCPs) (40, 41). If the HCPs were not excited and motivated to use the new technology, neither was it used by patients or families. None of the studies indicated the use of eHealth technology was restricted by high age, and a mix of ages used eHealth technology in the included studies (32-43). Older people were able to manage the technology well, but sometimes needed additional support at the start (32, 33, 40). In case of technical problems, these were solved through support from HCPs or through help from family members (35, 36, 41).
Symptom control and individualized care promoted through eHealth
Various eHealth applications enabled patients to participate in and govern their own care, for example by self-reporting symptoms and needs (32-37, 39-41, 43). The possibility of sending text messages to HCPs, for example to give notice that medication needed refilling, was perceived by patients as a well-functioning alternative for communication. Information from validated instruments describing physical, mental, social and existential symptoms, as well as quality of life, was sent to HCPs using eHealth technology, and was subsequently used for making care and treatment decisions (32-37, 39, 40, 43). Participants experienced a high degree of satisfaction when videoconferencing was conducted to address concerns raised by previously submitted information (38, 42). Patients found that communication was improved through eHealth applications, since instant feedback and help were provided as a result of the submitted, self-reported symptoms (32-34, 36, 40). This enabled individualized care according to patients’ and families’ needs. Patients wanted to register and monitor symptoms over time since it was found valuable method to be able to manage their symptoms themselves (34, 41), and patients were highly motivated to be involved in their own care (32, 38, 43). Studies also showed that automatic reminders to take their medication could be of benefit to the patient (32-34, 39). Improved symptom control empowered patients to remain in their homes until the end of life (36). However, in one study, some patients experienced increased symptoms, but the nocebo effect could not be rejected (37).
Care was perceived as more accessible and patients described increased access to care (32, 33, 36, 38-43). Communication and consultation with HCPs through eHealth applications aligned with patients’ daily lives, since it enabled patients to determine the time of contact themselves (32, 39, 42). Another finding was that using digital consultations could condense health care meetings and make them more efficient (33, 36, 38, 40, 42). eHealth application could be tailored to patients’ needs, thus enabling individualized care (33, 35, 38, 39, 41-43).
Through eHealth technology, patients were able to maintain their social relationships and contacts in everyday life, since they were able to be cared for at home (35, 36, 38, 42). With the help of eHealth, patients could continue to participate in social activities like before the illness (35, 38). Despite long distances, it was possible for patients to receive care through eHealth applications, in a convenient manner, without spending time nor funds for travelling (36, 38). During treatments that resulted in a low immune response, eHealth was a good way to meet, participate and interact with peers to feel support (38). Being able to participate in both private and social contexts, as well as in caring and supportive situations, despite troublesome symptoms and severe illness, was perceived as positive and provided a sense of connection to life and living (32, 35, 36, 38, 41).
Use of eHealth applications increased patient safety and sense of security
Several studies described how patients felt that information, guidance and advice could be transmitted safely through various eHealth applications (32-34, 36, 37, 39-41, 43). An application enabled the healthcare staff to see the text in their language even though the patient wrote it in another language (33). Patients stated that they received a guarantee that the information was forwarded to the intended recipient, and further that they experienced a faster response (33, 42). Patients also expressed that they did not want to interfere, and therefore found eHealth applications less intrusive since HCPs monitor them at their own convenience (34). Thus, patients did not hesitate to contact HCPs through the application. Patients admitted to palliative care also described how difficult it was to remember and understand all the information provided about diagnosis, treatment and potential symptoms and how easy it was to forget the information (34). Patients described how they relied on the family members and therefore wished to share information with health care professionals, friends and family through the eHealth application (34, 35, 38). E-health consultation provided a sense of security, relief and accessibility; for example, reminders to take medication (32-34, 39), facilitating renewal of prescriptions (33), increased access to care and prolonged care meetings (33, 36, 39), feeling better involved in own care (36), quicker response time to queries (33, 41), and that information, advice, and guidance could be safely delivered due to eHealth applications (33, 43).
Patients described how the eHealth applications provided increased opportunities and circumstances to feel secure (33, 35, 36, 38-43). In a study where patients had not tried the technology, patients anticipated that use of eHealth applications could mean feeling safe at home, since call for help and a follow-up visit was facilitated through the technology (34). Increased access to care resulted in increased confidence in the care, which led to reduced emergency hospital admissions (36, 42). Patients using different eHealth applications experienced security and increased well-being, as well as peace of mind and feeling at ease (33, 35, 36, 39, 41-43). A negative finding was that the integrity of the patient could be jeopardized since other persons unannounced could enter a room during an ongoing meeting (40, 42). This resulted in patients experiencing a sense of intrusion.