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Digital health services are increasing rapidly worldwide. Strategies to involve patients in self-monitoring of type 2 diabetes (T2D) on a daily basis is of crucial importance, and there is a need to optimize the delivery of care such as self-management support. Digitalized solutions have the potential to modify and personalize the way in which people use primary health services, both by increasing access to information and providing other forms of support at a distance. It is a challenge to integrate core values of person-centered care into digitalized health care services.
The objective of this study was to describe perceptions of using electronic health (eHealth) services and related technologies for self-management support among people with T2D treated in Swedish primary health care.
This is a qualitative study based on interviews analyzed using qualitative content analysis conducted among people diagnosed with T2D.
Findings suggest that the participants had mixed feelings regarding the use of digital health services for self-management support. They experienced potentials such as increased involvement, empowerment, and security, as well as concerns such as ambivalence and uncertainty.
Digital health services for self-management are easily accessible and have the potential to reach a wide population. However, targeted training to increase digital skills is required, and personalized devices must be adapted and become more person-centered to improve patients’ involvement in their own care.
Information and communication technology (ICT) for health promotion, disease prevention, and disease management used in health care (electronic health, eHealth) is suggested to have a great potential to improve access, quality, safety and efficiency of care, and further prevention, diagnostics, treatment, and self-management among people with chronic illnesses such as type 2 diabetes (T2D) [
People with T2D and their perceptions of using digital health services and related technology is the objective of this study. Digital health services or eHealth are terms that are used interchangeably in this paper. In these terms, we include using the internet for medical and health information and self-management support via, for example, diabetes websites, using patient portals, blogs, chat rooms, and forums. Furthermore, telehealth, telemedicine, telemonitoring, mobile Health (mHealth), apps, electronic health records, and other uses of digitization could be involved. These technologies are important since they are supposed to provide, improve, and support self-management and the delivery of care at a distance.
Even if developments and implementations of ICT in health care proceed quickly, opinions about the efficiency of eHealth vary among both patients and health care professionals [
Self-management is a basic and integrated part of the treatment in T2D. Since it is a progressive disease, it must be complemented with oral antidiabetic agents or insulin injections over time, which could add to the burden of the disease [
The various technologies used in digital health services such as the internet, mobile apps, and other kinds of interactive digital tools and devices in health care have a potential to facilitate self-management, which in turn may prevent or postpone disease complications in a chronic disease [
Implementation of ICT is recommended in Swedish health care. The government’s vision is clear—Sweden is to be the best in the world in eHealth by 2025, and this has to be realized by using the potential of digitization and eHealth to help people achieve good and equal health and well-being, as well as develop and strengthen their own resources for increased independence and participation in society [
Preferences for use of eHealth devices for health information are higher among younger people, while persons 70 years and older, are reported to prefer nondigital modalities for health information even if they are internet users [
This study is part of a larger randomized intervention project aimed at designing and implementing person-centered interactive self-management support (iSMS) in primary health care in northern Sweden. The overall project has a cocreation design, and participants’ perceptions are therefore of great value for designing a forthcoming intervention that is registered at ClinicalTrials.gov (NCT03165084).
The participants were treated in primary health care in a county in northern Sweden. Inclusion criteria in this study were Swedish-speaking individuals diagnosed with T2D. In total, 11 people (3 women, 8 men) aged from 50 to 78 years (median 65 years) were interviewed.
The purpose was to reach a purposeful sample with an even gender distribution, but it was difficult to recruit women in the study. The duration of T2D among the participants varied from 4 months up to about 10 years. Of these 11 participants, 7 participants lived together with a partner, while 4 were single. Each participant owned a smartphone. Initially, the aim of the study was presented by the first author at an information meeting held at the Local Diabetes Association, where 4 participants declared their interest in participating. A snowball selection was then used to include the remaining 7 participants into the study, that is, enrolled participants suggested names of other people who could be contacted for interviews.
The first author conducted interviews with the participants individually, either in their homes (n=8) or at the university (n=3) during 2016. All participants were contacted in person or by telephone in advance. They received information about the study, and date and place for the interview were decided. At the interview session, each interviewee was informed again and had the opportunity to ask questions or withdraw participation. The interviews performed by the first author lasted between 40 and 80 (median=60) min and were digitally recorded. During the interview, a semistructured interview guide was used, as well as an ambition to get answers that were narrative in nature. The opening question was, “If I say information technology and eHealth, what do you think of?” Examples of other questions were as follows:
“Can you please tell me about your experiences of using digital health services in contacts with care?”
“Have you ever used any digital technology device in your diabetes self-management? Please, tell me about those experiences.”
Probing questions and prompts were used to deepen the topics and to get answers on issues not already mentioned.
The interview data were transcribed verbatim by the first author and analyzed using qualitative content analysis as described by Graneheim and Lundman [
The identified meaning units were then condensed, that is, made shorter without losing the core meaning, and interpreted and labeled with codes. The codes were sorted, based on similarities and dissimilarities, into 12 subcategories within the 2 domains. The subcategories were then abstracted to 5 categories as follows:
Potentials
Involvement
Independence
Responsibility
Empowerment
Knowledge
Participation
Engagement
Freedom
Security
Confidentiality
Privacy
Concerns
Ambivalence
Insufficient support
Lack of digital skills
Uncertainty
Distrust of information
Unreliability
Following the steps of the analysis should not be seen as a linear process, rather a process of going back and forth between the steps and between original data and analyzed data. All authors also discussed the interpretations within every step of the analysis until consensus was achieved [
The Regional Ethical Review Board at Umeå University approved the study (Dnr 2014-179-31M) and was conducted according to the ethical principles described in the Helsinki Declaration [
A total of 5 categories within the domains
Within the domain
The importance of being involved in decisions about medication and in discussions about self-management and goals—for example, blood sugar levels—were highlighted. Some had negative perceptions from previous health care contacts when health care professionals made decisions “over their heads.” The subcategories related to this category are
I use and have paid for an app on my smartphone, so I can monitor my weight, daily steps and of course my blood sugar. I love it.
The importance of taking responsibility for oneself was highlighted. Those who had used various digital health services previously expressed that it helped them to take more action in their self-management. However, this was something they kept secret and did not always tell their diabetes nurse, since she might apprehend it as being critical of her advice. They also forced the importance of being seen as capable and responsible by the diabetes nurse, something that included that they accepted the consequences of even unhealthy choices. These participants had often got the advice from their diabetes nurses not to trust information on the internet and felt that using apps was in a gray zone, almost forbidden. Nevertheless, the participants described how it had helped them:
It [the app] helped me to take responsibility for a healthier behaviour; I believe I became more confident in myself since I started to use it. Much more than when I got my diabetes diagnosis.
A number of areas related to eHealth were found important for the management of the participants’ own health. They viewed applications and digital tools as powerful aids for understanding and becoming more aware, which enabled them to take control of their disease. Tracking their symptoms and treatments using diabetes apps and participation in online forum discussions provided them comfort. They learned of peers from online support groups by sharing what symptoms helped them take steps to adjust living with T2D, what types of treatment they used, and how this worked to strengthen them. As well-informed patients, they could more easily discuss and request different treatments with health care providers. The subcategories related to this category are
Increased knowledge was highlighted as an important goal for managing T2D. The participants expressed that they preferred better collaboration between themselves and health care professionals. They saw themselves as knowledgeable, capable, and responsible for their own health and self-management. Now, knowledge enabled them to make informed choices, which could lead to better control, something the use of apps could facilitate. Gaining knowledge at one’s own pace was seen as a benefit.
I can get the knowledge I want about type 2 diabetes [on the internet], and make up my own goals, step by step at my own pace [using an app]...without having to discuss everything with the diabetes nurse.
Digital health services were perceived as providing opportunities for increased participation, since they could discuss their condition with people other than health care professionals. Some gave examples of their adult children’s increased participation when they lived far away. Using a mobile app that supported management of diabetes, the adult children could be updated online and follow the illness process at a distance. They could also easily get in touch with people with diabetes who they could contact through various Web-based portals for patients:
I especially enjoy being able to reason with others with the same problems on different patient forums. It is a kind of social networking, though I do not leave home often...
Digital health services and devices made the participants more engaged through an increased awareness about the disease and needs for improved self-management. It was described that they traditionally met a doctor and a nurse semiannually. Between those visits, the disease-related information was easy to “forget,” and thereby they did not focus on changing habits. Due to an increased use of digital devices, they viewed personal visits at the health care center as unnecessary:
I feel more engaged now [using an app for self-monitoring]...I don´t always have to visit the primary health centre if I have problems, some things can be solved through eService on the primary healthcare centres website...
Using digital health services was expressed as increasing the participants’ freedom. They gave examples of the freedom that was related to 24-hour service online. They did not have to wait until the next morning or a Monday, when the diabetes nurse was available if they had problems or had questions during the weekend:
Anytime during all hours I have the freedom to reflect and get feedback [from patient forums] on my thoughts. I do not have to wait until the next day when the primary healthcare centre opens as I did before.
Digital health service was experienced as offering security. Safeguard components as passwords, encryption systems such as an e-ID (BankID or Mobile BankID), and similar technical safeguards for authorization or access controls strengthened the view of technology as something positive that protected the participants. The subcategories related to the category
The participants expressed worries and concerns about the following: that people from their community could witness them visiting the primary health care center and this could endanger their confidentiality. It could have personal consequences if information about them, known by neighbors, could get leaked to health care professionals, for example, about their families and social circumstances not known by a health care professional. In the next step, this information could get leaked to employers or maybe insurance companies. Sometimes they withheld information from health care professionals because of confidentiality concerns and also could avoid personal visits to the health care center. Web-based health care services were described as more secure, with personal log-ins, which was seen as trustworthy, and were at times perceived as better than the traditional face-to-face visits:
I trust that all information about me is kept confidential, even if it is online...but I do not know if I can trust that only authorised persons at the healthcare centre have access to my medical records...I mean, my neighbour works there as a secretary...
It was highlighted that when digitized health is discussed in the media or in popular scientific literature, the ethics, security, and privacy risks are often questioned. Despite this, the participants were not worried. Instead, they expressed that lack of privacy was a barrier to visiting health care centers in small communities. Participants mentioned breaches of their privacy and had experienced that fellow patients took mobile photos in the waiting room and put them on Facebook. Using Web-based health services, they did not have to “advertise” their problems to other patients in the waiting room, and thereby, they did not feel as vulnerable and exposed:
When I sit in the waiting room, I could find it problematic to meet neighbours and others. I don’t want to expose myself as an ill person to them...I think I would prefer online meetings with my nurse.
Within the domain
The participants expressed ambivalence concerning using digital health services and digital devices such as apps or iSMS. Mostly, it concerned feelings of lacking confidence and not being able to manage the technology. Furthermore, they had too little training, wanted support, and therefore avoided digital devices if they could. The subcategories related to the category
Being afraid of the new technologies as well as having limited or insufficient technological support increased the risk of not getting the medical advice participants needed. They therefore preferred face-to-face meetings with health care professionals. They did not have any family members or friends who could support them, and therefore, they were afraid of having technical problems.
What if something goes wrong?
Participants expressed an ambivalence and reluctance toward using digital technology. The reason was expressed as having a lack of digital competence and skills. They also mentioned poor technological design as a barrier to navigate websites and apps. Participants stated that they had difficulties using their smartphones due to physical problems such as sight loss or tremor.
It´s too difficult to use for me, I can´t even type [on the smartphone].
Digital systems in general were questioned by participants. They felt uncertain whether they could trust information they came across on the internet, and they were afraid of problems with eHealth services due to unreliable internet connections. The subcategories related to the category
Participants saw no value in using technology to manage their health. Furthermore, they did not always trust the quality and authenticity of the information on websites they found and whether these websites provided accurate and detailed information about diabetes management. It was considered unsafe to rely entirely on the Web-based information that was available since the content could be medically incorrect and potentially endanger their health.
I mean, how can I be 100% sure that the information online is correct? It could be fatal.
Participants highlighted the unreliable and unstable connections, both on wired or wireless broadband with an internet turning on and off rapidly and slow when working. They also said that the lack of internet access through wired or wireless broadband technologies in their homes made it impossible to rely on and use the computer or smartphone for eHealth purposes. Participants expressed that even the primary health care service could not guarantee reliable computer systems:
What if there’s a system failure due to a crash or virus, and there will be loss of data? Or an unstable connection? Can the system be really secure?
This study has provided insight about the perceptions that people with T2D may have about using ICT and digital health services for self-management support, and the findings show that the participants are mainly positive, but they have mixed feelings regarding use of eHealth services and digital devices irrespective of whether it concerned a Web or mobile app. On one hand, they experienced potentials such as increased involvement, empowerment, and security; on the other hand, they expressed concerns such as ambivalence and uncertainty. One explanation for the variation in perceptions of using digital health services or eHealth services for self-management support could be the participants’ differing capabilities such as education and computer training and experience. From literature we know that age, gender, as well as SOS situations influence people’s perceptions [
Several studies report that eHealth is promising with regard to self-management support and that people with chronic conditions desire tools that effectively reduce the limitations of life caused by disease [
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Our results could guide such development. The result also indicates that future digital health solutions preferably should have high demands on functionality, personalization, and an easy-to-use design to be user-friendly. Self-monitoring and measurements should also be smooth to integrate with the health care records and communication channels. Furthermore, a “universal” digital solution does not exist. One size rarely suits everyone. To improve user customization, people with T2D from various socioeconomic backgrounds, gender, and ages need to be involved in the development of future digital tools.
The findings in this qualitative study cast some light on the experiences of using various digital health services in self-management support among people with T2D treated in Swedish primary health care. We view our results as transferable to other groups of patients with similar lifestyle-related chronic conditions in societies similar to Sweden. However, according to Graneheim and Lundman [
We recruited 11 people with T2D for individual interviews, using a combination of purposive and subsequent sampling [
The majority of the participants were men, and the age range was 50 to 74 years. It is possible that the outcome of this study would have been different if more women had been included and if the age range had been different, including, for example, very old patients. Nevertheless, the participants in this study are representative of people with T2D and provided rich data.
There are no rules for how large the selection of participants should be in qualitative research methodology, but the selection is generally determined by the need for information data. In this case, it was considered that it had come to the stage where further data collection would not provide more knowledge and that the collected data was sufficient for the study. The saturation point was judged as reached. The term saturation derives from grounded theory, but it is also used in other qualitative approaches [
The interviews were conducted by the first author alone. However, all authors listened to and discussed the interviews and then were involved in interpretations at every step of the analytical process, something we believe has strengthened the trustworthiness of the study and resulted in a consolidation of the findings.
The results from this study indicate that persons with T2D have diverse perceptions on using digital health technologies and eHealth services for self-management support. They are interested in digital health technologies and services for self-management support, however, ambivalence was also expressed. Our findings indicate that targeted training and support is needed to overcome barriers and that utilized devices for good reason should be personalized or carefully adapted to the specific situations at hand.
The use of digital health technologies for person-centered self-management support is challenging but can—if implemented appropriately—lead to increasing patient responsibility for their own health and strengthen patients’ empowerment and self-management capabilities. Although digital health technologies of today allow for innovative approaches, there are also ethical aspects to consider when new digital health tools or solutions and eHealth services are introduced in health care. Some people may neither wish to nor be able to use digital technology for various reasons on their own, whereas others see it as an important complement to or even substitute for the traditional health care visits.
electronic health
information and communication technology
interactive self-management support
person-centered care
socioeconomic status
type 2 diabetes
The authors would like to thank the Swedish Diabetes Association, and the Department of Nursing and the Faculty of Medicine, Umeå University, for providing funding for this study. The authors would especially like to thank the participants for allowing them to make home visits for interviewing and for their contribution to the study. The authors would also like to thank Håkan Larsson and Christina Harrefors, who gave important input to the study in the design and planning phase.
UÖ recruited participants and performed data collection and transcription. UÖ and ÅH contributed to the main analysis and interpretation of data. UÖ drafted the first version of the manuscript. UÖ, CJO, LJ, UI, and ÅH contributed in editing the manuscript, and all authors contributed and approved the final version of the manuscript.
None declared.