Aging of the population leads to a reorganization of health and social services (HSS) for older persons because of the greater pressure on the HSS network. Keeping older persons in their homes as long as possible is economically and socially desirable [1]. Moreover, this wish is shared by the older persons themselves [2]. Nonetheless, this depends, in part, on caregivers [3]. A caregiver, in this study, refers to anyone who provides care and services to a functionally impaired older person on a voluntary and weekly basis [3]. Although it is gratifying for a number of caregivers, contributing to looking after older persons at home is a task that can prove demanding on a day-to-day basis. Caregivers feel poorly equipped to assume this role, which is described by some as a moral responsibility [4]. Moreover, success in home care for older persons depends on the capacity to respond to the needs of those suffering a loss of independence [5,6]. There are many risks for the older person when the support is inadequate or when the burden is too great [7]. Reinhard et al [7] report such potential risks as (1) abuse, (2) medication errors, (3) negligence, and (4) conflicts with the caregiver.

Electronic health (eHealth) can support caregivers in keeping the older person they are caring for at home [8]. Indeed, a number of arguments support the idea of turning to eHealth to help caregivers of functionally impaired older persons in their role. These include acceptability [9], the current use of the internet [10], fewer problems related to moves and respite [8], reduced costs [11], its availability at all times and in all locations [12], the possibilities of using a variety of pedagogical modalities [13], and the efficacy of this type of intervention [14].

Telemedicine, tele-assistance, assistive technologies, communication-linked technologies, tracking systems, Web-based services, and mobile apps [15] are among the various types of eHealth tools for caregivers. Few of these tools were developed with a co-design approach. In addition, very few eHealth tools developed for caregivers have specifically focused on the process of seeking help. It is often only when the initial signs of exhaustion appear that caregivers first undertake the process of help-seeking behavior, but it is difficult for them to know which is the most appropriate formal service in their situation, without assistance from HSS professionals [7].

With the objective of developing an eHealth tool, which supports the process of caregivers’ help-seeking behavior, a review of the literature was conducted to identify different theoretical models that could support this process.

We found a number of works bearing on modeling of the process of help-seeking [16-25]. Nevertheless, there is no consensus on the greater relevance of any 1 model [25]. Levkoff’s help-seeking behavior model for dementia seems to correspond to the process of help-seeking behavior for the caregiver until the latter contacts a care provider [22]. Indeed, this model is specific to the help-seeking behavior for dementia and includes 4 components: the illness and the experience of symptoms, evaluation of symptoms, the decision to look for formal services, and contact with care providers. Recognizing the symptoms (either by the one being helped or by the caregiver) begins the process of help-seeking behavior. Subsequently, the caregiver must interpret the symptoms (using cognitive and sensory capacities), evaluating the degree of severity and the potential duration. The decision to seek help and to contact a care provider depends on a number of factors. To better understand the limitations of these last 2 steps, we identified in a previous study [26] 5 categories of factors influencing the search for assistance: informational factors, factors linked to the service, experiential factors, personal factors, and relational factors. Each stage of Levkoff’s help-seeking behavior model for dementia and the comprehension of factors limiting the recourse to formal services offer a potential transition where interventions could facilitate the process of assistance.

Consistent with this perspective, the purpose of this paper is to describe the protocol of a project that aims to assist caregivers to target early in their help-seeking process their needs and those of the older person they support and guide them effectively to the formal service most appropriate to their situation. The 3 objectives of the project are (1) identifying the needs of the caregivers in terms of tools to accompany their process of help-seeking behavior, (2) developing a tool for caregivers that corresponds to the needs they have expressed, and (3) evaluating the usability of the tool.

To attain these objectives, this study is based on a participatory design, more specifically, a co-design approach. Co-design is defined as the creation of useful knowledge and actions, in this case, an eHealth tool, which involves groups experiencing the issue, even in the research process; they assume simultaneously the role of creators, decision makers, and users [27]. Thus, caregivers, acting as designers, can intervene directly in their future eHealth tool and draw upon their knowledge to develop technologies that respect their needs and their ways of doing things [28]. This project has 3 phases (Figure 1). The objective of phase 1 is to identify the needs of caregivers of functionally impaired older persons. On the basis of the results from this phase, the objective of phase 2 will be to co-design an eHealth tool to support the help-seeking process of caregivers. Finally, phase 3 will be a usability study aimed to verify the results obtained with the co-design process.

The study takes place in 11 regions of Québec (Côte-Nord, Mauricie, Centre-du-Québec, Capitale-Nationale, Chaudière-Appalaches, Montérégie, Bas St-Laurent, Gaspésie, Outaouais, Montréal, and Laval). The meeting places vary, depending on the availability of locations (eg, municipal or community premises or those connected to the HSS network).

The number of participants and the selection criteria for each group of participants are as follows.

To have access to a diversity of perspectives, it is hoped that the participants will present a variety of characteristics, in terms of their profession (social worker, occupational therapist, physiotherapist, doctor, nurse, etc), their organization (administrative agency, association, organization, and other), and their sociodemographic attributes. A purposive sampling strategy will be used via advertising in local community centers, family medicine groups (FMGs), and community organizations. For the HSSP, direct contact will be made with the management of older persons services. The latter will target potential participants as a function of selection criteria, and the HSSP will establish contact with the research team. A network sampling approach will also be used as recruitment through advertising alone will be insufficient to reach all the types of participants targeted. Thus, community organizations (through a direct approach) and HSSP willing to recruit caregivers to participate in the study will be solicited. When caregivers express interest in participating in the study, HSSP and community workers will be asked to transmit their coordinates so that research agents could establish contact with them.

All stages (recruitment, data collection, and analysis) will be done by 1 or more members of the research team. The research team is made up of the study director; a researcher in gerontology (DG); 2 doctoral students (KL and MT), one of who has experience in user experience and the other in participatory studies; and finally, a research professional with expertise in qualitative research (MC).

This project was approved by the Comité d'éthique de la recherche des Centres de santé et de services sociaux de la Vieille-Capitale (the Research Ethics Committee of the Health and Social Service Centres of the Old Capital). As this is a multicenter project, it also needed and received the approval of each research ethics committee of HSS network centers for the regions targeted through a formal agreement. There is no compensation offered for phase 1 of the project, as this stage does not involve any traveling. A monetary compensation of Can $20 for each participant is, however, planned for phases 2 and 3. There are no physical or moral risks to the study participants. However, it is possible that this could be inconvenient due to a required reorganization of the usual routine or supervision. Throughout the research, the raw data will be rendered anonymous before being analyzed. Only 2 research professionals will have access to the list containing the names and codes, which will be stored separately from the research material, data, and information and consent forms. All the research material, including the information and consent forms and the recordings, will be kept in a locked filing cabinet in a locked room. The digital data will be stored in encrypted files, access to which will be protected by the use of a password to which only the principal researcher and research assistants will have access. Finally, all the material and data will be kept for 5 years and then destroyed.

Peer review of the protocol required by the ethics committee is presented in Multimedia Appendix 3.

Keeping older persons at home largely depends on the help provided by caregivers. However, they need support to identify the needs of the older person they are assisting, their own needs, and the formal services available to meet them [26]. The goal of this multicenter project is to develop an eHealth instrument, which will facilitate this process of looking for help. Nonetheless, this project, following the process chosen by the research team, entails certain challenges.

One of the first challenges encountered was obtaining ethical approval. On the one hand, the multicenter nature of the project required obtaining a letter of support from each of the 11 organizations of the HSS network selected by the project. The presentation of the project and the different intermediaries and particularities for each organization were such that 11 months were necessary to complete the ethical process.

Another challenge was that of the recruitment of caregivers, this is, of course, a challenge common to other projects involving those kinds of persons [8]. Although more than 30 FMGs were contacted to request the participation of caregivers, this did not result in the recruitment of any participants. In addition to the fact that we do not have the confirmation that the FMGs actually posted the study project, we hypothesize that the caregivers do not recognize themselves as a caregiver or legitimate to bear this identity [26] and, therefore, do not feel concerned by the project unless the approach is straightforward. To date, the optimal method of recruitment has been through contact with community workers and HSSP. Nevertheless, on the one hand, this reduces the potential number of caregivers, and on the other hand, it leads to a bias in the selection process, due to the fact that these caregivers already have access to a formal service. Therefore, this is a limitation of the project, which needs to be taken into account during the analysis of the results.

Moreover, the methodology selected to develop an eHealth tool, which genuinely responds to the needs of caregivers, is based on a co-design approach. To our knowledge, few studies have employed this methodology to develop an eHealth tool for caregivers. Co-design includes future users, in this case, caregivers, in the development of the tool, as co-designers. Therefore, this implies a sharing of power with people untrained in either research or design. This is a challenge not faced by other studies led only by research teams. The sharing of discourse and decision-making power is clearly a major challenge not only for researchers but also for future users [44]. As mentioned by Meiland [45,46], 1 of the risks of this method is that the users cannot express their own needs or ideas and instead may simply rally around the dominant figures in the group. To lessen this risk, 2 doctoral students will examine this aspect of co-design. The thesis of 1 of the doctoral students associated with this project bears on potentially unspoken elements in co-design sessions, and she will validate the data with individual interviews following the co-design sessions, if some elements of content were not raised. These potentially unspoken issues will be discussed in the working sessions with the advisory committee, to be able to take them into account, while obviously continuing to respect confidentiality. The second student’s thesis will bear, among other matters, on the hoped-for genuinely democratic process, which co-design approach can entail. Moreover, the role of the advisory committee is to ensure that the content emerging from the co-design sessions is effectively incorporated into the development of the tool and that it is not simply the preferences and expertise of researchers that prevail.

Another challenge of this project will be to ensure consistency among the different co-design sessions. Usually, the participants are the same from one session to another, which ensures fluidity between sessions and stimulates the acquisition of design skills. This will not be the case in this study. For this reason, previous group decisions should be presented at each new session to ensure participants’ understanding and consistency of decision making. In addition, the role of the advisory committee is to ensure consistency. Moreover, the choice of analyzing the data between each session is designed to also maintain this common thread.

Finally, 1 of the common challenges for all co-design projects is the design of a tool by those who do not necessarily possess any expertise in design or even basic computer skills. Among other things, 1 of the pitfalls encountered in this sense is the difficulty of envisaging new technologies or discussing abstract concepts, such as potential functionality, for example [35]. Among the solutions used to counter these problems is the use of prototypes (light and medium fidelity) to help participants visualize what is discussed [44].

eHealth can support caregivers of older persons in their process of seeking help. This study aims to develop this type of tool through a co-design methodology. Although there are some challenges associated with this type of methodology, it still remains relevant, because it really involves future users in the development of a tool that, in our opinion, increases the chances that it will meet their needs.