by Jamie Tarlit, RN BSN BSc Bio
Jason Tseng, RN BSN BSc Biomed
Katie Neal, BA Arch
Peter Galbraith, RN BSN BSc Kin
Citation: Tarlit, J., Tseng, J., Neal, K., & Galbraith P. (2024). Experiences of clients with chronic disease using e-Health services to manage their disease: A systematic review. Canadian Journal of Nursing Informatics, 19(4). https://cjni.net/journal/?p=14019
Increasing numbers of Canadian adults are living with one or more chronic conditions. However, individual and structural barriers prevent clients from receiving quality care and treatment. eHealth services, which include virtual patient health portals and mobile apps, provide an alternative way for clients to access the healthcare system and communicate with their care providers. Nonetheless, some limitations still prevent clients from fully utilizing eHealth services to their full potential. This paper aims to explore the user experiences of clients using eHealth services to manage their chronic conditions.
A systematic review was conducted on relevant peer-reviewed academic journal articles from 2013 to 2021 found in CINAHL, OVID, Medline, and PubMed databases. Studies were included if they used a qualitative design to explore the use of eHealth for adults aged 18 and over, with chronic disease(s). From studies selected, data were extracted into two matrices and analysis was performed using a thematic synthesis approach by two reviewers.The common experiences presented are intuitiveness, convenience, empowerment in self-care, encouragement from a health-care provider, replacement of in person care, positive health outcomes, use of technology, cost of technology, internet access, patient-centered care, digital reminders, data privacy and lack of follow-up. Based on the diversity of experiences study participants described, the main conclusion of this review is that personalization of eHealth services is vital for accessibility and relevance to everyone. This would involve advances in eHealth technologies, as well as the involvement of primary health care providers.
The prevalence of people living with one or more chronic diseases in Canada has been rapidly increasing over the past few years. A report published by the Public Health Agency of Canada suggested that about 44% of adults are currently diagnosed with at least one of ten common chronic conditions (Public Health Agency of Canada, 2019). This figure is especially concerning if factors such as the projected ageing of the Canadian population, increasing demand on the health care system to support the ageing population, and the increased susceptibility of this population to infectious illnesses due to having a compromised immune system, are considered. One of the approaches to reduce the burden of chronic conditions on the healthcare system is to engage patients in health promotion activities, such as stress reduction, and regular exercise (Schmidt, 2016). At the same time, for individuals with chronic conditions, health monitoring and addressing risk behaviours can help to minimize complications to ensure quality of life (Oh et al., 2005). However, as reported by Montague et al. (2019), only 66 percent of adults with chronic illnesses reported having received appropriate treatment and management for their health issues. Patients that did not receive appropriate care attributed it to prolonged wait times, issues with care affordability, and confusion and unclarity over support provided by the healthcare professionals (Montague et al., 2019). In addition, clients that live in rural areas or have mobility issues also reported having a lack of proper access to the healthcare system, which contributes to the poor management of their chronic conditions (Ahern et al., 2006).
With the invention of the internet and wireless technology, eHealth services have been adopted by many healthcare practitioners in the hopes of providing a better and more accessible healthcare system. Although eHealth has been used by care providers for many years, there is still a lack of definition to clearly describe what eHealth is (Oh, 2005; Boogerd, 2015). There is a general consensus that eHealth is an umbrella term used to describe services that combine healthcare and technology to provide efficient client care (Oh et al., 2005; Ahern et al., 2006; Boogerd et al., 2015). For the purpose of this current review, this paper will use the definition of eHealth as interpreted by Health Canada which described the service as ‘the application of information and communications technologies in the health sector’ (Health Canada, 2010, para. 1) and will include both patient health portals (e.g., Health Gateway) and mobile health apps.
It is hoped that by utilizing eHealth services, both clients and healthcare providers can use features such as a virtual visit function to enhance client care by increasing time efficiency and reducing associated costs. It also provides clients that are traditionally underserved with a platform on which they can easily communicate with their care providers. Clients are also able to access educational information through the eHealth services that would help them develop strategies and techniques to manage their chronic conditions, which will help to improve their overall health. Users of eHealth services can have the option to share their progress instantly with their care providers, which will enable the care team to develop care plans that are tailored to the client’s needs and conditions. This will help to further enhance client experience and their overall well-being. However, despite the many benefits of eHealth, there are some barriers that prevent the wider use of eHealth. Issues such as health literacy, knowledge of technology, access to technology, and data privacy can affect user experience and must be resolved first before eHealth services gain more traction.
It is important to understand factors that determine whether or not clients use eHealth to manage their chronic conditions. Thus, this paper will review current journal articles that discuss the use of eHealth services among clients with chronic conditions to understand what factors promote the use of eHealth services and what factors contribute to the disuse of the service among clients. It is the aim of this study to explore the experiences of using eHealth services to manage health, from the perspective of clients with chronic conditions.
The population, context, and outcome (PCO) framework for qualitative methodology, as described by Butler et al., (2016), was used to aid the designing of the key question to this study: “How do adults with chronic diseases experience eHealth services for management of their disease?” The PCO framework, as outlined in Table 1, sets the basis for our inclusion criteria. The main focus of this review included adults, anyone over the age of 18, with at least one chronic disease and who are not cognitively impaired. The study types included were of any qualitative type, including but not limited to, phenomenology and grounded theory.
Table 1
PCO framework
A full summary of the inclusion and exclusion criteria can be found in Table 2. The keywords used as search parameters were also generated from the PCO framework: keywords were adults, chronic diseases, e-Health, experiences, and qualitative. Only articles published between 2013 to 2021 were selected to ensure current practice and relevant information.
Table 2
Inclusion and Exclusion Criteria
As part of the search process, CINAHL, OVID, Medline, and PubMed databases were selected to ensure scientific quality of the studies. The search was undertaken by all four reviewers, each assigned to one of the databases. On completing a search in each database, the Boolean operator “AND” was used between all keywords; in addition, chronic illness was used interchangeably with chronic disease using the Boolean operator “OR.” All keywords were selected under the search field “ALL TEXT.”
Upon completing the initial search, a plethora of results was generated which needed to be further screened for eligibility. The first step in screening was the selection to limit articles from 2013-2021 and to only include academic journals. Next, a general screening by title was completed to remove irrelevant articles. Even with the keywords used, irrelevant articles such as pediatric cases, non-chronic diseases, and unrelated topics were generated. In conjunction, the methodology and study type used was also screened via title. However, methodology and study type used had to additionally be screened during the screening of abstracts as some articles did not include this information directly in their title. Lastly, a full text screening was completed for a concise and robust review to determine the most accurate eligibility. Articles were only selected through the results generated by the search strategy; reviewers did not examine reference lists, nor did they hand search key journals in the area of interest to further identify relevant articles. The multiple steps to the screening process are summarized in Figure 1.
Figure 1
PRISMA Flowchart for Study Screening and Selection
Data extraction was completed independently by each reviewer for articles found in their assigned database. Data were extracted into a matrix for thorough recording and to maintain accessibility for future reference.This matrix included data such as title, author(s), publication date, database, design, purpose of study, country, population and sample size, and form of eHealth used. Next, a second matrix was created based on main themes, summary of findings, and strengths & limitations for each article. Where some studies also presented the experiences of other individuals (i.e. health care providers), data were only extracted from where it was attributed to the client’s experience. Data analysis was performed using a thematic synthesis approach. Using the second matrix, one reviewer identified and grouped all related themes into separate categories. Following, these categories were examined and compared with each other to identify common themes between the studies that provided new insight to the key study question. Analysis was carried out by one reviewer and cross-checked by the other three reviewers to increase trustworthiness of the findings and decrease personal bias.
A total of twenty academic journal articles were included in this review as seen in Table 3. Studies were primarily carried out through semi-structured interviews or focus group interviews; and the eHealth services used within the twenty studies included webpages, mobile health apps, virtual patient portals, DVDs, and SMS programs. Of the twenty studies, eight were conducted in the USA; two in each of the following: Norway, Sweden, Netherlands, and Australia; one in each of the following: Taiwan, Belgium, and the Netherlands; and one unspecified. All studies were from the perspective of an adult with a chronic disease. Generally, there was a mix of both males and females included in each study, with adults ranging from 18-91 years old, but predominantly between 50-80 years old.
Table 3
Study Characteristics
The most common experience expressed in 10 of the studies reviewed is that eHealth needs to be intuitive. Clients expressed that it is very important for the information to be laid out intuitively with design features that are easy to use (Anderson et al., 2016; Cajita et al., 2019; Gabrielian et al., 2013; Gee et al., 2015; Huygens et al., 2016; Nelligan et al., 2020; Palermo et al., 2021; Portz et al., 2019; Ledel Solem et al., 2019; Son & Nahm, 2019). Clients that underwent eHealth interventions or programs noted that the programs were very easy to use (Currie et al., 2015; Gabrielian et al., 2013; Nelligan et al., 2020; Palermo et al., 2021; Silvestrini et al., 2021). Clients that had previous experience with technology: a laptop, tablet or mobile phone had more confidence in learning how to use an eHealth application (Cajita et al., 2019).
The second most common theme in the articles reviewed was convenience and efficiency, which was noted in nine articles. eHealth can be conveniently completed from home, often on a patient’s own time and removes the travel burden (Anderson et al., 2016; Currie et al., 2015; Doumen et al., 2021; Gee et al., 2015; Lopez-Olivo et al., 2020; Nelligan et al., 2020; Portz et al., 2019; Silvestrini et al., 2021; Son & Nahm, 2019). Although some clients also saw this as a detriment because they preferred to travel to the clinic as it kept them active (Currie et al., 2015; Portz et al., 2019). Some clients further saw this as a detriment if the schedule was asynchronous as they may ignore the eHealth intervention because they had more important scheduled activities (Lie et al., 2017). Some clients also wanted more convenience, indicating that certain aspects had to be completed within a timeframe and they wanted that timeframe to be longer (Palermo et al., 2021).
Empowerment in management of self-care was a common experience discussed in eight of the articles. Clients indicated that eHealth allowed them to feel empowered and engaged in their care (Chang et al., 2017; Doumen et al., 2021; Gabrielian et al., 2013; Gee et al., 2015; Huygens et al., 2016; Silvestrini et al., 2021; Ledel Solem et al., 2019; Zulman et al., 2015). In contrast, it was noted clients were most likely to reduce or stop using the eHealth service when they were familiar with how to self-manage and do not require constant interaction with the application (Anderson et al., 2016).
The next most common experience, which was represented in seven of the articles reviewed was encouragement from a health care provider. Many clients expressed the need for eHealth interventions to be developed by health care providers to be relevant and credible and not developed by commercial enterprises (Cajita et al., 2019; Chang et al., 2017; Doumen et al., 2021; Lopez-Olivo et al., 2020; Nelligan et al., 2020; Palermo et al., 2021; Ledel Solem et al., 2019).
Replacing in person care was one of the concerns associated with eHealth discussed in six of the included articles. Many clients expressed concern that eHealth would replace the current system, and they might lose access to their physician or home visits (Currie et al., 2015; Huygens et al., 2016; Lie et al., 2017; Nymberg et al., 2019; Roberts et al., 2015; Silvestrini et al., 2021). Silvestrini (2021) pointed out that it was a minority of clients that preferred in-person care instead of eHealth. Many clients expressed the need for eHealth to be utilized as a complement to in-person care (Chang et al., 2017; Currie et al., 2015; Gabrielian et al., 2013; Huygens et al., 2016; Lie et al., 2017; Nelligan et al., 2020; Nymberg et al., 2019; Roberts et al., 2015; Silvestrini et al., 2021; Ledel Solem et al., 2019). There was also a sense that there was a lackof need for the technology. Many clients pointed out that they felt the current healthcare system was working fine and they did not need an eHealth intervention to help them with their care (Cajita et al., 2019; Huygens et al., 2016; Marklund et al., 2021; Nymberg et al., 2019).
eHealth interventions have been associated with positive health outcomes. This was expressed in six of the articles reviewed. Many clients that experienced eHealth interventions noted that it led to positive health outcomes (Chang et al., 2017; Currie et al., 2015; Marklund et al., 2021; Nelligan et al., 2020; Palermo et al., 2021; Portz et al., 2019).
Another common experience noted in five of the studies was difficulty using technology. Many clients indicated they had difficulty learning, and lacked the knowledge for utilizing the technology, laptop, tablet, or mobile phone required for the eHealth app (Cajita et al., 2019; Lie et al., 2017; Marklund et al., 2021; Nymberg et al., 2019; Portz et al., 2019). Clients also indicated there is a deficit in IT competence in health care systems (Nymberg et al., 2019). Decreased sensory perception, especially with hearing or sight can make the use of technology for eHealth more difficult (Cajita et al., 2019; Roberts et al., 2015). Clients noted that formal training in eHealth technology would be valued (Gee et al., 2015).
Cost of technology was noted in four of the studies. Clients expressed that the cost of the eHealth app or the technology to use it could be a barrier (Cajita et al., 2019; Huygens et al., 2016; Nelligan et al., 2020). In contrast, financial reasons have also been a major incentive to undergo eHealth interventions (Chang et al., 2017).
Difficulty in internet access was expressed in four of the articles reviewed. There can often be an urban-rural digital divide where there is more difficulty accessing the internet in more rural locations. Many clients expressed that they had slow internet access, which hindered eHealth app use (Currie et al., 2015; Doumen et al., 2021; Lie et al., 2017; Roberts et al., 2015).
A patient-centered model of health care was mentioned in four studies. eHealth should allow integration and facilitate communication between multiple health care providers and information on multiple conditions (Currie et al., 2015; Gee et al., 2015; Portz et al., 2019; Zulman et al., 2015). In contrast some clients were concerned that the information they were sharing privately with their doctor could in turn be shared with other doctors and nursing staff and the client would not know (Gee et al., 2015).
Digital reminders were another theme experienced in four studies. Clients with some experience with digital tools wanted and enjoyed digital reminders for their care (Anderson et al., 2016 Nymberg et al., 2019; Nelligan et al., 2020; Marklund et al., 2021). Clients with less digital experience did not like the idea of digital reminders for their care (Nymberg et al., 2019). Some clients found the digital reminders to be annoying (Anderson et al., 2016; Marklund et al., 2021). Certain digital reminders could trigger shame or guilt (Nelligan et al., 2020). Clients did not want an eHealth app to motivate them to make lifestyle changes (Huygens et al., 2016).
Data privacy was expressed in three of the articles reviewed where clients highly valued data security and data privacy (Anderson et al., 2016; Huygens et al., 2016). Clients did not express a reluctance to share personal data within an eHealth app that was developed by a health care provider (Doumen et al., 2021).
The lack of eHealth intervention follow-up was noted in two of the articles reviewed.Clients could not or had difficulty accessing parts of the eHealth intervention after they had completed it (Currie et al., 2015; Silvestrini et al., 2021). This could be attributed to a lack of IT support for the program. It was noted in both articles that clients should have been able to access the information again (Currie et al., 2015; Silvestrini et al., 2021).
The synthesis of these studies has demonstrated that eHealth can improve the health care experiences of people with chronic diseases in many circumstances. Study participants noted improved health outcomes after using an eHealth service, as well as improvements in accessibility, efficiency, empowerment, and patient-centred care compared to the health care experiences they had outside of eHealth. However, there are many barriers to the access, use, and relevance of eHealth services that will need to be addressed for eHealth services to become beneficial on a larger scale.
The main finding of this review is that eHealth services must be tailored to the individual to be as accessible and relevant to each individual as possible. This personalization can be partially achieved through advancements in the technologies themselves but also needs to be part of the patient-centred care each client receives from their primary health care provider.
There are many opportunities for improvement of the user experience design of eHealth interventions, as evidenced by the many participants who expressed that they struggled accessing and/or using the technologies. Improvements could include more options for personalization so that individuals can select their preferences regarding digital reminders and informatics, as well as adjust the settings to suit their accessibility needs. Developers should also complete thorough user experience testing to ensure the interface and navigation are intuitive to most of the target population and include training options that are easy to utilize or skip depending on the user’s preferences.
Each client’s primary health care provider also has an important role to play in the promotion and use of eHealth interventions. Many study participants mentioned that they tried an eHealth intervention largely due to their physician’s recommendation, so physicians have a responsibility to ensure that the programs they recommend are credible. Physicians should also ensure that the patient understands who will have access to the information they share through the eHealth service, and what kind of information should be included. In addition to ensuring credibility and data privacy, the health care providers should work with their patients to determine whether or not they would benefit from additional services in conjunction with the eHealth intervention, such as home visits, phone calls, peer support, or regular in-person appointments, as many study participants identified that they benefit from these services and the eHealth services cannot completely replace them. However, the patient’s preferences and abilities will affect which combination of services will be the most beneficial to them.
An additional barrier to use that study participants identified was the program cost. This will vary according to the intervention and available subsidies, but this research indicates that government and/or insurance coverage of credible eHealth interventions would increase their accessibility.
The breadth of this study has allowed for an improved understanding of the variety of eHealth services available and the diverse experiences people have had with them. By looking at all chronic diseases, ages, and types of eHealth intervention together, we had access to a large amount of data and were able to gain a thorough understanding of the general barriers and facilitators that are experienced. However, by generalizing the results in this way, we were not able to investigate how variables such as the specific chronic disease, age group, or mode of eHealth affect an individual’s experience.
This study may also be inhibited by the limited experience of the student researchers in conducting qualitative systematic reviews, and the time limitations of an undergraduate semester. We looked at many examples of qualitative systematic reviews done by other researchers and accessed the resources provided by our instructor to ensure that our methods and methodology were consistent with the current expectations in nursing research, and we carried them out to the best of our ability within the three months of our qualitative research course.
The qualitative data collected for this review shows that eHealth interventions have multiple benefits but currently have many barriers and facilitators to access. Based on this synthesis, experiences with eHealth interventions are diverse, and further research into how specific variables such as the type of chronic disease, specific symptoms, and the mode of eHealth used are linked to different experiences would be valuable. Demographic differences may also be significant, so future research could consider an in-depth analysis of how experiences are affected by specific demographic variables or should strive to collect data from participants with a wide range of demographic variability.
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