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Support interventions for caregivers can reduce their stress, possibly improving the quality of patients’ care while reducing care costs. Technological solutions have been designed to cover their needs, but there are some challenges in making them truly functional for end users. Co-design approaches present important opportunities for engaging diverse populations to help ensure that technological solutions are inclusive and accessible.
This study aimed to identify co-created technological solutions, as well as the process followed for their co-creation, in the field of health for caregivers.
The literature review was conducted in the Medline, Web of Science, Scopus, Science Direct, Scielo, and IEEE Xplore databases. The inclusion criteria were studies written in English or Spanish and with a publication date until May 2021. The content had to specify that the caregivers actively participated in the co-creation process, which covered until the development phase of the technological solution (prototype). The level of evidence and the methodological quality were analyzed when possible, using the Scottish Intercollegiate Guidelines Network criteria and the Mixed Methods Appraisal Tool, version 2018, respectively.
In total, 410 papers were identified, and 11 met the eligibility criteria. The most predominant articles were mixed methods studies and qualitative studies. The technology used in the analyzed articles were mobile or web applications (9 studies) and specific devices such as sensors, cameras, or alarm systems (2 studies) to support the health and social aspects of caregivers and improve their education in care. The most common patient profile was older people (7 studies); 6 studies used co-creation in the requirements phase, 6 studies detailed the design phase. In 9 studies, the prototype was iteratively refined in the development phase, and the validation phase was performed in 5 of the reviewed studies.
This systematic review suggests that existing co-created technological solutions in the field of health for caregivers are mostly mobile or web applications to support caregivers’ social health and well-being and improve their health knowledge when delivering care to patients, especially older people. As for the co-creation process, caregivers are particularly involved during development and in the design. The scarce literature found indicates that further research with higher methodological quality is needed.
The steady increase in the number of people with acute and chronic diseases and increasing life expectancy place new demands on the health systems [
Informal caregivers usually are family members, neighbors, close acquaintances, or other significant individuals who provide unpaid daily assistance to a family member or dependent older adult who cannot care for themselves [
Lack of support is a significant problem [
Technological health solutions, especially in the form of assistive technologies, create significant opportunities to optimize both health and social care delivery. In this paper, we consider technological health solutions for caregivers as those that can transform and complement current care such as web or mobile applications, artificial intelligence, or virtual or augmented reality that can be used for medication management, community support, cognitive stimulation, or emotional support; nevertheless, we do not consider static repositories of information (such as static web pages or blogs) as a technological solution. Many studies support the idea that technological solutions can support conventional health care provision methods, thereby reducing demand for local services [
Lately, there has been a shift in the development of new products, first from a supplier-centered design (ie, service providers design a product) to user-centered design (ie, based on the user’s needs) and now to co-design, also called co-creation. In co-creation, designers, service providers or suppliers, and consumers work together to identify the problems and design solutions [
The concerns of caregivers have been reported from many points of view, from sociological issues, national regulation, and stakeholders’ views, to caring activities to avoid the negative effect of losing control due to informal care and the so-called caregiver burden [
This systematic review aimed to identify co-created technological solutions, as well as the process followed for their co-creation, in the field of health for caregivers.
This systematic review was carried out following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guideline [
The literature review was conducted in the Medline, Web of Science, Scopus, Science Direct, Scielo, and IEEE Xplore databases. The main search terms used to carry out this work were co-creation AND technology AND health AND caregiver. The full search string is available in
The inclusion criteria were studies written in English or Spanish and with publication dates until May 2021. No starting year was established for the search in order to cover all existing evidence published by journals over all time. The included studies had to specify that the caregivers actively participated in the co-creation process, which covered until the development phase of the technological solution (prototype). The publications that were exclusively aimed at the people being cared for were excluded; only publications aimed at the population of caregivers were included. All publications that did not appear in peer-reviewed journals were excluded, except those extracted from the IEEE Xplore database, due to the relevance and impact of contributions to conferences in the field of technological engineering.
Initially, the search was carried out in the different databases by 2 researchers from the group (CBA and MRM). Subsequently, an independent blinded review process in which the different researchers of the team participated was carried out. The screening phase began with an independent blinded review of the previously identified studies by 2 other investigators. First, 2 researchers (SGC and EMM) evaluated the titles and the abstracts of the studies to assess their eligibility. Second, the remaining article’s full texts were assessed by the other 2 researchers (ARA and JAMB). In the 3 phases, the disagreements in selecting the studies between the 2 researchers were resolved in consensus by consulting the full text again. When the disagreements persisted, a third reviewer of the team assessed the eligibility of the research. Finally, in those studies in which the design could be evaluated, the level of evidence and methodological quality were independently analyzed using the Scottish Intercollegiate Guidelines Network (SIGN) criteria [
Independently and in pairs, using a template, the researchers extracted the following descriptive information from the articles included in the systematic review: authors and location, design, level of evidence, methodological quality, patient profile, type of technology designed, and objective of the designed technology. In addition, detailed information was extracted related to the co-creation process (name of the phase, description of the phase, agents involved, and result variables), divided into 4 phases: (1) requirements, (2) design, (3) development, and (4) validation. These phases were extracted from the studies included in the systematic review as common points between the different frameworks used in them [
Based on these categories to extract the information, 2 tables of results were created to subsequently analyze the content with the aim of answering the research questions initially raised and, therefore, the objectives of this systematic review.
The search produced 410 papers. We removed duplicates, leaving 279 papers. Titles and abstracts were screened to ensure alignment with the inclusion criteria, and 218 were eliminated from the study, thus leaving 61 eligible papers for further scrutiny. We read the entire text of 61 papers to assess eligibility in line with the inclusion and exclusion criteria. We eliminated 50 of the publications mainly because the studies were not consistent with our inclusion criteria; the reasons included not developing the technology (reason 1), not including caregivers as their target group (reason 2), not having a participatory design (reason 3), being part of another study already included (reason 4), or not having enough information to determine compliance with the inclusion criteria (reason 5).
PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) flowchart displaying the different stages of the screening process. Reason 1: not developing the technology; Reason 2: not including caregivers as their target group; Reason 3: not having a participatory design; Reason 4: part of another study already included; Reason 5: not having enough information to determine compliance with the inclusion criteria.
Authors and location, design, level of evidence, patient profile, type of technology designed, and objective of the designed technology are detailed in
Descriptive data.
Author(s), year (location) | Design | Level of evidencea | Patient profile (age) | Type of technology designed | Purpose of the designed technology |
Backman et al, 2020 (Canada) [ |
Mixed methods study | —b | Older adults leaving hospital (67-97 years) | Mobile/web application | To manage the personalized needs of geriatric rehabilitation patients during their transition from the hospital to home |
Egan et al, 2021 (United Kingdom) [ |
Mixed methods study | — | Caregivers (NRc) | Mobile/web application | To educate and support caregivers in the undertaking of regular physical activity at home during and beyond COVID-19 restrictions |
de la Harpe and van Zyl, 2011 (South Africa) [ |
Mixed methods study | — | Population from under-resourced communities (NR) | Mobile/web application | To participate as simultaneous producers and consumers of information, relating to their own experiences, and to contribute to a joint repository of information and educational material in their own "idiom" |
Guerrero et al, 2019 (Sweden) [ |
Case study | 3 | Older adults (57-67 years) | Specific devices | To assist with medication management |
Harding et al, 2021 (India, Uganda, Zimbabwe) [ |
Mixed methods study | 2 | Palliative patients (NR) | Mobile/web application | To improve access to palliative care |
Latulippe et al, 2020 (Canada) [ |
Qualitative study | — | Functionally dependent older persons (NR) | Mobile/web application | To facilitate the process of help-seeking for caregivers of functionally dependent older persons |
Lemetyinen et al, 2018 (United Kingdom) [ |
Randomized controlled trial | 1+ | African Caribbean persons diagnosed with schizophrenia or other nonaffective psychosis (NR) | Mobile/web application | To improve knowledge about and attitudes toward schizophrenia in African Caribbean families |
Meiland et al, 2014 (Netherlands and Germany) [ |
Qualitative study | — | People with mild cognitive impairment and dementia (NR) | Specific devices | To support community-dwelling people with mild cognitive impairment and dementia in daily functioning, monitor (deviations from) patterns in daily behavior, and automatically detect emergency situations |
O'Connor, 2020 (United Kingdom) [ |
Qualitative study | — | People with dementia (NR) | Mobile/web application | To stimulate memory and communication by sharing memories together |
Rathnayake et al, 2020 (Australia) [ |
Mixed methods study | — | People with dementia (NR) | Mobile/web application | To address functional disability care needs |
Sin et al, 2019 (United Kingdom) [ |
Qualitative study | — | People with psychosis (NR) | Mobile/web application | To provide carers with psychoeducation and emotional support using health care professional contribution and peer support |
aScottish Intercollegiate Guidelines Network (SIGN) criteria: 1+ well-conducted meta-analyses, systematic reviews, or randomized controlled trials (RCTs) with a low risk of bias; 1- meta-analyses, systematic reviews, or RCTs with a high risk of bias; 2- case control or cohort studies with a high risk of confounding or bias and a significant risk that the relationship is not causal; 3 nonanalytic studies (eg, case reports, case series).
bNot able to be assessed.
cNR: not reported.
Regarding the designs of the included articles, 5 mixed methods studies [
The technology used in the analyzed articles can be classified into mobile or web applications [
The aims can be classified into education and information in health [
The main strategy for education and information is through content and resources (text, videos, storyboards) from the company’s or external sources’ solutions. Some of them use e-learning environments to introduce interactive resources such as quizzes [
Most patient profiles in the articles were that of an elderly population, either being directly targeted [
The co-creation process involved a wide variety of agents. Caregivers, as a target group, were involved in all the studies (see
Involvement of informal caregivers in the co-creation phases.
Author(s), year (location) | Phase 1: requirements | Phase 2: design | Phase 3: development | Phase 4: validation |
Backman et al, 2020 (Canada) [ |
—a | Xb | X | X |
Egan et al, 2021(United Kingdom) [ |
— | X | X | X |
de la Harpe and van Zyl, 2011 (South Africa) [ |
— | X | — | — |
Guerrero et al, 2019 (Sweden) [ |
X | — | — | X |
Harding et al, 2021 (India, Uganda, Zimbabwe) [ |
— | X | X | X |
Latulippe et al, 2020 (Canada) [ |
X | X | X | X |
Lemetyinen et al, 2018 (United Kingdom) [ |
X | — | — | — |
Meiland et al, 2014 (Netherlands and Germany) [ |
X | — | X | — |
O'Connor, 2020 (United Kingdom) [ |
— | — | X | X |
Rathnayake et al, 2020 (Australia) [ |
X | — | X | — |
Sin et al, 2019 (United Kingdom) [ |
— | — | — | X |
aNot included.
bIncluded.
With co-creation, users have an active role from the beginning of the creation process [
The first phase of the co-creation process involves the requirements. Of the articles, 5 did not use co-creation in this phase [
When we analyzed the participation of the agents by phase, 5 of the 11 selected articles incorporated caregivers
[
The design phase of the co-creation process, the second of the 4 phases, was described in 6 of the 11 studies included in this systematic review. All stood out for the application of technology design methods, such as a modern agile and iterative co-design [
When we analyzed the agents involved in this phase, the studies most frequently involved caregivers (6 studies) [
The development phase consists of the creation of a functional prototype. Unlike the proof of concept in the design phase, creation of the functional prototype is not only to answer technical and design questions. It must be functional and usable to test the fundamental hypotheses of the proposal. It consists of gradual and iterative development, alternating phases of creation, and testing for subsequent refinements. End users and co-creation participants generally participate in the testing phases, and the prototype is refined based on their feedback. In some cases, they may also participate in content development, design, and feature selection phases. They also usually participate by conducting a usability test, and the final prototype is refined based on their feedback.
In 1 study [
Analyzing agents involved in the 11 articles, caregivers were the most predominantly consulted, in 8 articles [
The validation phase was performed in 5 of the 11 studies included in this systematic review [
A qualitative test of the prototype with a small sample of participants (2 or 3 patients and 2 caregivers) was included in 2 studies [
The other 3 studies performed a pilot test with a significant sample size [
Regarding agents involved in this phase, caregivers were involved, with the difference compared with the other agents, in 6 of the 11 articles [
The objective of this systematic review was to identify co-created technological solutions, as well as the process or methodology followed for their co-creation, in the field of health for caregivers. The interventions in the included studies highlighted that, despite the rapid increase in interest in technological support for caregivers, very few studies included caregivers in the co-design process. In other reviews for specific populations such as older adults [
Regarding the type of technological solution designed and developed in the studies included in the review, in 9 of 11 articles, the proposal was a mobile or web application [
In turn, mobile or web applications have proven to be one of the most feasible technological solutions in digital health interventions with different population profiles [
On the other hand, the more significant presence of the design and development of mobile or web applications in this systematic review, compared with other types of technological solutions such as virtual reality, augmented reality, or robotics, could be due to the presence of this technology in people’s daily lives and, therefore, their knowledge, experience, and familiarity with it to actively participate in the process of co-creation [
Previous literature provides evidence that technology offers a cost-effective and practical method for delivering interventions to caregivers [
As some studies identified, almost one-half of the caregivers providing substantial help with health care assisted an older adult with dementia [
This review also analyzed the co-creation process of solutions in which at least a functional prototype had been developed. Most of the existing published literature on this topic, including the recent [
The lack of standardized methodologies and diversity of frameworks used in the co-creation process of technology solutions make it difficult to analyze and classify the studies. The same occurred for other related, excluded studies, which used multimethod designs [
To conduct this review, we analyzed the studies through the 4 common phases of a development process: obtention of the requirements, design of the proposal, development of the prototype or product, and validation [
In a co-creation process in which caregivers are the target population, it would be expected that they would be involved in all 4 phases of the process. However, of the 11 studies analyzed, in only 2 cases [
Regarding the analysis of the effectiveness of the use of co-created technological solutions by caregivers, with this systematic review, we could not determine the long-term outcomes of the identified projects. Most of the articles were published less than 2 years before the search for this study was carried out, so this could be the main reason why experimental studies were not found to analyze the impact of the use of the proposed technological solution. In addition, 2 of the included studies were published in 2011 [
After analyzing the 11 studies, the future of technology solutions for caregivers need to focus on (1) identifying the common needs of caregivers, regardless of for whom they care, to be able to create specific solutions with them; (2) providing more detailed information on the creation process, because if caregivers were involved, this can add value for its use; (3) involve caregivers more actively at all stages of the creative process, as this can substantially increase the usefulness of the created technologies; and (4) use validated tools regularly and to increase the scientific evidence on the impact of the technological solutions created.
The main strengths of this review are based on the multiple steps performed to achieve methodological rigor. The review was guided by PRISMA, and the database searches, screening, data extraction, methodological assessment, and level of evidence evaluations were conducted in duplicate, with strong agreement between reviewers. In addition, the search was conducted in 2 languages, English and Spanish, which allowed for a broader review of the literature. Finally, as far as we know, this is the first review focused on co-created technological solutions for caregivers in health care.
Regarding the limitations, although appropriate keywords were used, there may be a certain word from a specific area that has not been checked. Consultation with a librarian could have helped. Another limitation of the systematic review is that a meta-analysis could not be performed since heterogeneous studies with poor methodological quality and limited results emerged. Future research using validated tools is needed to evaluate the technological solutions for a more in-depth analysis.
In summary, the current systematic review suggests that, despite the increasing need to provide technological support for informal caregivers, very few studies included them in the co-creation process. The existing co-created technological solutions in the health field for caregivers are mostly mobile or web applications aimed at supporting caregivers' social health and well-being and improve their health knowledge when delivering care to patients, most commonly older people. As for the co-creation process, caregivers are more likely to be involved at the time of development and in the design. Future research should include the following criteria: detailed reporting on the co-creation process, involving caregivers more actively in all phases of the process, and using validated tools to evaluate the impact of the technological solutions created. Scientific evidence could help informal caregivers in their caregiving tasks.
Search terms.
Methodological quality assessment of the included articles.
Detailed phases of the co-creation process in the included articles.
ecological momentary intervention
Preferred Reporting Items for Systematic Reviews and Meta-Analysis
randomized controlled trial
Scottish Intercollegiate Guidelines Network
This study received support from the Erasmus+ programme of the European Union (project reference: 612532-EPP-1-2019-1-ES-EPPKA2-KA).
None declared.