The Use of Digital Technologies in the Promotion of Health Literacy and Empowerment of Informal Caregivers: Scoping Review

Introduction

Background

Population aging is a social challenge worldwide. As life expectancy increases, the incidence of chronic and incapacitating diseases also increases [1]. The high levels of dependence and the complex management of health status raise awareness of the increasingly relevant role of informal caregivers (ICs) in terms of care and health promotion of their relatives [2]. The ICs, defined as someone who provides nonremunerated care to a person with a long-term illness, disability or other health need, or long-term care, outside a professional or formal framework, are considered essential both to the care of people in the community and to the economy of European Union countries [3]. ICs are more and more important to patients as well as to health care professionals [4]. They play a central role in the planning, training, and provision of services to people with care needs [2,3]. In practical terms, ICs collaborate in providing health care at home to people who show an impairment in self-care, activities of daily living, and instrumental activities of daily living. The needs change over time, as does the level of dependency of the person cared for [5].

In most situations, ICs are not prepared to play this role. This transition in caregivers’ lives brings out feelings of insecurity due to the unknown and the lack of knowledge and skills to ensure that the person cared for is given proper care [5]. This way, ICs’ existing and acquired knowledge is extremely important and becomes necessary for the implementation of interventions destined to promote the development of skills and the involvement of relatives in patient trajectories to improve patient outcomes [2-4].

A vital point in health policies is the investment in the health literacy (HL) of ICs. HL is central to empowering people, their families, and communities, promoting greater control over decisions and actions affecting their health [6]. HL is defined as the ability to access, understand, evaluate, and apply information about health care, disease prevention, and health promotion to maintain and promote quality of life during the life course [7].

Through HL development, conditions are created for individuals to gain knowledge and skills, make informed decisions, and feel motivated to adopt a behavior that improves their health status and well-being [8].

Considering that HL is a health determinant, mediator, and moderator, it is important to ensure that citizens access reliable, useful, and updated health information to help them make the best decisions about their personal health, their family’s health, and the community’s health [9-11]. Proper access to information allows to promote and increase citizen empowerment so that they participate in their health care, leading to shared responsibility and informed decision-making [12].

As an agent, the health care professional plays a central role in effective communication and in conveying reliable information to the population. User-relative–health care professional communication significantly affects health outcomes and user satisfaction concerning health services [13]. Digital technologies have created an opportunity for health professionals and health organizations to directly communicate with many people in real time. This digital revolution in communication allows to customize information, help people set health targets, and interact in real time [1].

Information and Communication Technologies (ICTs) is the set of technologies and equipment that, in an integrated manner, allow working and communicating information, including computers and the respective applications, the internet, and telecommunications [14]. They are part of the citizens’ routine, with an increasing use of educational platforms. The internet is considered a privileged means of interaction with the population that needs health care [1].

ICTs improve the quality of life of older adults and their caregivers and their access to quality care, contributing to improving the social lives of caregivers and decreasing their isolation via social activities and intergenerational relationships [15]. These aspects contribute to balanced physical, mental, and emotional health and to a decrease in depressive symptoms and sadness. Digital technologies are considered a key component and facilitator of sustainable health systems and universal health coverage [16]. Digital technology is a strategy that can promote accessibility to health care for all citizens. Digital means can be used to increase access to reliable, useful information and to strategies that meet the needs of the highest possible number of ICs, whether in real time or not [1]. However, accessing and handling these technologies requires digital literacy, which is one of the barriers identified by studies in certain groups considered vulnerable, such as older adults. Digital HL is the ability of citizens to use digital platforms to manage their health, validate web-accessible health information, and communicate with health professionals [17].

Objectives

In Portuguese literature, there are only a few scientific studies conducted by nurses that refer to the use of digital technologies as a resource to empower dependent people and family caregivers [1]. The need to know if dependent people and their ICs have access to digital technologies and use them when they have health needs gave rise to the following research question: “Which digital technologies are used for promoting Health Literacy and empowering the Informal Caregiver?” For the mapping, we used the following guiding questions: “Do the Informal Caregivers have access to digital technology?” and “Do the Informal Caregivers use digital technologies to improve their health literacy and empowerment concerning the care of the person cared for?” To answer these questions, this review aims to map the scientific evidence regarding the use of digital technologies to promote HL and empower ICs.

Methods

Overview

This is a scoping review conducted according to the methodology recommended by the Joanna Briggs Institute (JBI) [18]. Scoping reviews are used to identify knowledge gaps, enhance knowledge described in the literature, clarify concepts, or investigate research conduct [19].

The theme was searched in the JBI Database of Systematic Reviews, CINAHL, MEDLINE, Scopus, and PubMed, and no systematic review was found for this same theme. The inclusion criteria were based on the Population, Concept, and Context logic: the Population included all informal or family caregivers aged ≥18 years who provide care to dependent persons and who have access to the internet and digital devices (computer, smartphone, and tablet).

The search was conducted from April 4 to 18, 2022, and included primary qualitative and quantitative studies and mixed method studies in English, Portuguese, French, and Spanish, during 5-year period between January 2017 and December 2021, to obtain the most recent studies published on this theme. Key terms and inclusion criteria were used as a strategy to identify papers that were relevant to the search.

Study Selection, Data Extraction, and Analysis

According to the JBI’s recommendations, the search strategy was performed in 2 steps [18]. There was an initial search of the electronic platform EBSCO, in particular, MEDLINE and CINAHL, with the natural keywords informal caregiver; family caregiver; health literacy; empower; digital technology; and community, following the search for the indexing term MH “Empowerment.” Subsequently, we carried out an analysis of the words used in the title, the abstract, and the terms indexed as well as the keywords presented in the description of each searched article. We then carried out a second survey in which the indexing terms and keywords were searched in MEDLINE (PubMed), CINAHL (via EBSCO), MEDLINE (via EBSCO), and Scopus (Textbox 1).

A total of 2 independent reviewers (SS and LVH) analyzed the relevance of papers using the information included in the title and abstract, considering that the study population must be defined and the goal must be associated with digital tools.

It was necessary to retrieve the papers after reading the abstract. Full papers were obtained for all studies with the inclusion criteria. A table was filled with the defined criteria, considering the goals and the results of the study that would answer the research question. After reading the full text, 2 papers showed a divergent opinion. This situation was discussed and resolved without the need to speak to a third reviewer.

The screening process identified 442 studies. Of the 442 studies, 77 (17.4%) were duplicated and so were excluded. Of the remaining 365 studies, 320 (87.7%) were excluded for their titles and 25 (6.8%) for their abstracts, based on the inclusion criteria that had determined their eligibility. In the second step, there were 20 papers for full-text review. Of the 20 papers, 11 (55%) were eliminated because of the following reasons: 4 (20%) because their goals did not relate to the technological needs of ICs but to the person cared for; 4 (20%) because they were about another type of nontechnological experience; and 3 (15%) because they were about behavioral therapies and coping strategies. Figure 1 [20] shows the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flowchart for the identification and selection of the studies.

A data collection instrument was made to extract information from the selected studies, including the following items: author, country, year of publication, study goal, study type and methodology used, population, sample, types of interventions, main results, and conclusions. The results were analyzed based on their content and organized according to the research question and goals.

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Ethical Considerations

This study is part of a main project that was approved by the Ethics Committee for Health of the Regional Health Administration of Lisbon and Tagus Valley (reference 058/CES/INV/2022).

Results

Studies Characteristics

In total, 9 studies were included in this review after the search. According to the JBI’s guidelines, after the selection, the studies were organized based on their research question and goals (Tables 1 and 2).

Main Findings

Table 2 shows the main findings and conclusions of the studies described in the papers.

Regarding the year of publication, the studies were published in year 2017 (1/9, 11%); year 2019 (1/9, 11%); year 2020 (4/9, 44%); and year 2021 (3/9, 33%). They were conducted in the following countries: Canada (4/9, 44%), the United States (2/9, 22%), Scotland (1/9, 11%), Singapore (1/9, 11%), and Spain (1/9, 11%). Of the 9 studies, 3 (33%) followed a qualitative approach, 4 (44%) followed a mixed approach, 1 (11%) was observational, and 1 (11%) was a quasi-experiment.

The results of the studies enabled us to address the guiding questions. On the question “Does the Informal Caregiver have access to digital technology?” the studies show that ICs have access to and use digital technology [23,25]. They describe which types of technological resources are used more frequently by them: smartphones with mobile apps or internet access. The internet is the source of choice for accessing health information and learning about self-management techniques, with the importance of reliable websites being emphasized [22,25,26]. Smartphones are used to make calls, send SMS text messages and emails, and access the internet [25]. Apps are used to manage the appointments and medical information of the person cared for and to access specific information that allows ICs to share and discuss to commit to the caregiving relationship [25]. The esthetic dimension, ease of configuration, and nice interface are app features that are valued by ICs [25,26].

Privacy and security issues seem to be a factor that limits the use of technologies because users feel insecure due to the risk of sharing personal information [19,27]. Struggling to identify relevant and reliable information is also a factor that causes apprehension when it comes to internet use [26]. The degree of trust when accessing digital information seems to be related to the HL level of users [29]. Users with low HL levels who did not use the technology that was being analyzed had little experience using computers, no training, and no internet access at home. Those who used the portal showed increased interest in learning and practicing with the new technologies [29]. This fact reinforces the need for specific training on the use of digital technologies to gain trust [29].

Regarding the question “Does the Informal Caregiver use digital technology to improve their HL and their training in caring for the person cared for?” the studies show that the use of digital technology can benefit the population as well as caregivers [21,25-27,29].

ICTs lower information access barriers and provide relevant information that is enabled when there is a need to gain new knowledge [21,26]. ICTs are perceived as giving ICs the opportunity to guide themselves and interact with other caregivers, which allows them to get to know their peers and feel less lonely [24,28].

Caregivers say that by using digital technologies, they can obtain basic information about the disease, such as symptoms and treatment options, and about existing resources and equipment, which makes them feel less lonely in this role [21-23]. With the support of digital tools, caregivers felt recognized and heard and could express their uncertainties, stories, and suggestions, which increased their commitment to care provision [22]. Technology also maintains their caring ability and allows them to develop coping strategies [24].

The use of technology is also referred to as an intermediary for an improved quality of life [21,28]. This perception of the improvement of the quality of life is boosted when the technology that is used includes multiple resources, such as the fact that there is a public forum for community discussion with other ICs in the same region without having to leave home, a market to purchase and sell materials and equipment that is needed for providing care, and an alert system or information trackers [26,27]. The integration of the multiple resources that are needed by caregivers daily in an app that is easy to use allows them to save time and provide help to browse without problems [27].

Another aspect referred to by the studies concerns suggestions or factors that can improve the experience of ICs when using digital technologies. One study described that new technologies that are only focused on the task can lose their value as they lose the capacity to provide information that is relevant to caregivers’ needs [21]. It is important that ICs collaborate in the development of technologies because their deep knowledge of the needs and existing gaps contribute to technological innovation, which allows them to overcome the existing technological barriers and learn facilitator mechanisms [23].

The expectations of ICs as to digital technologies also seemed to be an important aspect to consider because they can increase the technology used. ICs hope that technologies can provide emotional and psychological support, informative support from the family, training and education, and health care follow-up [23,26]. In a more practical way, ICs suggested that there should be resources that help them with their mental health, namely, relaxation techniques and motivational quotes and guides that would help them remember to take care of themselves [27].

Discussion

Informal Caregivers’ Role in the Health Care System

According to the studies that were analyzed, demographic changes are leading to an increasing need for long-term care, which results in people informally caring for their relatives. Being an informal or family caregiver brings uncertainties, isolation, and overload [21,27]. Studies have shown that the involvement of the caregiver in the care plan is essential. The active involvement of ICs as a member of the interprofessional care team results in an improved experience, increased caregiver capacity, and the appreciation of the caregiver role [22,24].

These results are in accordance with the literature where ICs are considered “one of the elements of the sustainability of social and health systems” [30]. This emphasizes how important it is for health care professionals to work with ICs to find the strategies that are most adequate for effective empowerment [30]. The empowerment of ICs should be “a priority in health care organizations and the nurse assumes a major, dynamic, empowering role when it comes to the most adequate response to meet those needs” [31].

The World Health Organization (WHO) has defined a long-term strategy for the expansion and use of digital health, emphasizing the positive impact that it can have on health care access and provision as well as on the health and well-being of the population and caregivers [23]. According to the literature, health technology is “one of the strategies used by the health care professional to empower citizens to use it in a secure way” [32].

The Use of Digital Technologies Supporting Caregivers

The studies revealed that low HL was a barrier to accessing digital information and the correct use of technological tools. Lack of training makes browsing difficult and results in user insecurity [26,29]. The initial findings of a European survey on population HL carried out by the WHO Action Network on Measuring Population and Organizational Health Literacy indicate that 22% to 58% of the population find it challenging to access and interpret digital health information [33]. By contrast, the European data report shows that, in 2019, in European countries such as Finland, the Netherlands, the United Kingdom, and Germany, 75% of the active population had basic digital skills [34].

Promoting HL improves safety in caregiving and decreases the risk associated with this activity [32].

Using digital technology in the health field can benefit the caregivers and the general population [21,25-27,29].

Questions about privacy and security when using these digital tools are an important factor for users. Although there is an increasing concern about what is the best way to develop emerging web-based technologies (eg, ethical data use), the results show that a hybrid model with a web-based and in-person approach can work well for caregivers in rural areas [23]. The model that includes digital technology and an in-person approach is pointed out as a more reliable model for the ICs.

These results are in line with the American study that described that ICs use the internet (77.5%) to access health information for themselves (73%), for others (67.5%), and to communicate with the physician [35].

The results highlight that ICs intend to use digital tools to establish communication relationships with people cared for, their family members, the peers, and health care professionals [21,23,24,27,28].

Principal Findings

The text highlights privacy concerns limiting technology use, underscoring the impact of low HL on users’ digital engagement. ICs benefit from digital tools by experiencing empowerment, recognition, and an improved quality of life. The integration of multiple resources in one technological tool supports caregiving, saving time and facilitating daily tasks. The collaboration of ICs in technology development is crucial for innovation and overcoming barriers, emphasizing the need for user-driven solutions.

Limitations

As for the analysis of the included studies, it was not possible to use a tool to evaluate study quality. In the papers that were analyzed, it was not possible to identify references about improvement opportunities arising from the research process. The fact that the samples in the presented studies are small does not allow us to extrapolate data to the population.

The included papers were published in English, French, Spanish, and Portuguese, and the inclusion of articles in other languages could have brought more relevant information to this review. However, searching in 4 databases allowed us to expand the search comprehensiveness.

Comparison With Previous Work

In Portugal, there are few scientific studies carried out by nurses that refer to the use of digital technologies as a resource to train people with dependence and ICs.

Conclusions

Evidence found in studies revealed that ICTs such as digital platforms, portals, and web-based community groups were preferentially used by informal caregivers via mobile apps and that computers were used more by the people cared for. Studies showed that ICs had access to and used digital technology not only to meet the needs of the person cared for but also to meet their own needs. Studies have shown that digital technology is an accessible tool for empowering ICs. However, there were concerns regarding privacy, security, and the use of these tools, which should be considered by health care professionals and researchers. It is also important to highlight the necessity of providing digital training for both ICs and the individuals under their care.

ICs play a key role in the provision of quality care to the dependent people to whom they commit. It is crucial to understand how digital tools can be effectively and beneficially used to empower ICs.

The participation of ICs is essential when it comes to developing digital tools (platforms, mobile apps, and portals) because they can contribute to developing tools that meet users’ needs (ICs and the people cared for). The use of digital technologies can guarantee access to knowledge, thereby empowering caregivers when it comes to making a decision and sharing care provision with health care professionals. It is important to emphasize the significance of digital empowerment in enhancing the digital health literacy of both ICs and those they care for. Digital technology allows accessible, targeted, and effective communication. Health care professionals and researchers should guarantee information reliability, security, and clarity and optimize existing resources.