Mental Health and Digital Practices of Family Caregivers in France Since the COVID-19 Pandemic

Abstract

The COVID-19 pandemic and the related confinement it caused have led to significant social distancing. Family caregivers, an “invisible” population, seem to have been particularly affected by this context. In this sense, in this article, we question the psychopathological impact of this pandemic on caregivers, but also their use of digital tools and e-health as a lever. To do this, we applied a methodology involving both quantitative and qualitative data collection and analysis. We created and distributed an online survey and conducted interviews with the main caregivers of a person suffering from a physical, mental, and/or cognitive disorder, or an elderly person losing their independence. Our observations show that the psychological frailty of this population is important, with a fairly high prevalence of signs of anxiety (58.4%) and depression (50.7%), especially compared with the general population. In our sample, the use of digital tools did not seem to be in the context of e-health, but more in a social context of communication with others. This raises the following two important questions: Is it possible to predict and prevent the psychological frailty of caregivers? Can digital tools and networks of caregivers’ groups provide leverage and respite?

1. Introduction

Family caregivers’ practices generally have a significant impact on the family. Treudley [1] speaks of a “burden on the family”. In France, various studies and surveys highlight the impact of caregiving practices on family caregivers. For example, the Pixel study [2], carried out on a large number of caregivers (n = 1410), revealed that 71% of caregivers felt a heavy burden due to their caring role, 84% felt anxious about the future, and 55% felt depressed or even exhausted. Furthermore, the survey conducted by Besnard et al. [3] emphasized that 47% of caregivers of an elderly relative and 64% of caregivers of a spouse say that they have suffered at least one negative consequence on their health. However, these results concern the physical health of the participants. These factors indicate the interest and importance of questioning and assessing more precisely the state of mental health of caregivers and its consequences over and above the already recognized physical frailty.

Given the heavy physical and mental burdens already faced by caregivers, it is essential to examine how these challenges have been exacerbated by the COVID-19 pandemic.

The COVID-19 pandemic has had a real impact on human relationships and interactions [4]. The impact has been particularly difficult for isolated people such as caregivers. In France, a caregiver is defined a “spouse, partner or cohabitant, a relative or an ally, defined as family caregivers, or a person residing with the person or having a close and stable relationship with the person, who helps the person, on a regular and frequent basis, in a non-professional capacity, to carry out all or part of the acts or activities of daily life” [5].

The specific context of the COVID-19 pandemic has led to several difficulties among caregivers in France, both regarding the psychopathological state of the caregivers and in their caregiving practices. This pandemic has intensified the need for assistance [6], resulting, for example, in changes and difficulties in accessing home care services, thus forcing caregivers to learn and carry out care themselves for the individuals [7]. The feelings of loneliness and isolation already present among caregivers [8] have been further exacerbated [6]. Psychopathologically, caregivers are a particularly impacted population, experiencing significant psychological difficulties [9], which have been further heightened by increased worry and a global impact on their mental, economic, physical, and social well-being [10].

As access to services and more essential medical facilities became restricted, if not impossible, with the pandemic, many caregivers found themselves having to look for alternative solutions, such as e-health services like telepsychology [11], in a context when digital literacy access is all too often a factor of social discrimination [12]. When caring for people of varied deficits, whether related to cognitive or physical impairments, e-health—which refers to the broader use of technologies in a healthcare context [13]—became, on many occasions, the only option.

In France, teleconsultation has reached two important milestones. In 2010, the French Ministry of Social Affairs and Health launched a strategic plan for telemedicine, led by the Direction Générale de l’Offre de Soins (DGOS). The initial results indicate a predominant development of telemedicine in hospitals, and limited deployment in the ambulatory and medico-social sectors, mainly due to the absence of a payment system for telemedicine services [14]. The second key date is 2018, when telemedicine financing was incorporated into common law through Article 54 of the 2018 Social Security Financing Act, enabling reimbursement for teleconsultation and tele-expertise services. During the COVID-19 period, the Direction de la Recherche, des Etudes, de l’Évaluation et des Statistiques (DREES) reported, in 2022 [15], that GPs had performed 13.5 million teleconsultations in 2020 compared to 80,000 in 2019, indicating a significant shift in practice. This trend has continued post-COVID-19, with 9.4 million teleconsultations in 2021, representing 3.7% of their business compared to 5.7% in 2020. In psychology, Doctolib (an online appointment booking service for patients, mainly dedicated to the services of healthcare professionals practicing conventional or non-conventional medicine within a regulated framework) noted in 2021 that psychologists were among the top users of teleconsultation, with an average of 12 teleconsultations per month.

Teleconsultation practices have evolved since 2018, with the publication and regular updating by the HAS of the following good practice guides: “Qualité et sécurité des actes de téléconsultation et de télé-expertise” [14]; “Référentiel de bonnes pratiques et de méthode d’évaluation des entreprises de téléconsultation” [16]; “Lieux et conditions environnementales de la téléconsultation ou de la téléassistance” [17]. Despite these developments, it should be noted that the use of teleconsultation seems to have become less marginal since 2019, mainly in the field of medicine.

It is widely recognized that, until the pandemic, the practice of e-health had been developing at a very slow rate [18]. As early as 2020, medical professionals highlighted that COVID-19 was at the helm, not of an evolution, but rather of a revolution from analog medical practices to e-health. Against this backdrop, digital tools and e-health represent an important and interesting lever for caregivers [19], but we have very little data on the use of these tools among French caregivers.

This study is part of a research program called “COVID-Aidants”. It is a research program funded by the Caisse Nationale de Soutien à l’Autonomie (CNSA) and led by Dr. Lise Haddouk at the Centre Borelli (UMR9010). It was conducted between 2021 and 2023 in collaboration with the following associations: Association Française des Aidants (AFA), Association des aidants et malades à corps de Lewy (A2MCL), Fédération Nationale des Associations de Patients en Psychiatrie (FNAPSY), Union Nationale des Familles et Amis de Malades et Handicapés psychiques (UNAFAM), Union Nationale des Associations de Familles de Traumatisés Crâniens (UNAFTC), and with the support of healthcare, social, and medico-social establishments and services of the Groupe SOS.

To date, in France, there is a significant lack of data on the mental and physical health of family caregivers, including the tools they use and have available to cope with the social isolation caused by health restrictions. That is why our main objective was to evaluate, in a multidimensional way (qualitatively and quantitatively), the frailty and robustness of caregivers and their practices of digital tools, including e-health services, since the COVID-19 pandemic.

With this in mind, we aimed to investigate the evolution in individual caring practices for significant others since the onset of the COVID-19 pandemic. We sought to find out if digital tools had a significant positive impact on those practices and had been perceived as a source of support. These results could provide some interesting insights for thought on the problems encountered by family caregivers and the possible levers for prevention.

In this context, we posed the following two research questions:

What are the psychopathological consequences of the COVID-19 pandemic for family caregivers?

What coping strategies, particularly digital ones, are available to these people?

In relation to these two research questions, we put forward the following hypotheses:

H1. 

We assume that family caregivers suffered from psychological issues during the COVID-19 pandemic (particularly anxiety and depression).

H2. 

We assume the increased use of e-health among the digital practices of family caregivers.

2. Materials and Methods

2.1. Population

2.1.1. Ethics

To be able to start collecting quantitative and qualitative data in compliance with the legal framework provided by the Article 6, (1) a of the General Data Protection Regulation (GDPR) of 27 April 2016, applicable as of 25 May 2018, we worked on drafting several of the following documents:

• A document setting out the General Terms of Use (GTU) for the questionnaire distribution platform;
• A registration form for processing the data collected as part of the research program;
• An information letter for participants in the survey covering the various parts of the protocol;
• A consent form for participants in the survey for the different parts of the protocol.

At the same time, we set up storage of the data collected on an approved host for health data (HDS) to guarantee a secure circuit for the data and the anonymization of the results.

In addition, the data were extracted, processed, cross-referenced, and analyzed by ENS Paris-Saclay, and the sole and limited members of the project team, under strict conditions, guaranteeing the respect of the confidentiality and security of the data, within the sole framework of the purpose defined in the present document. No other use, communication, or processing of the data was made outside this purpose.

The users could access the data concerning him/her or request their deletion. They also had the right to object, to rectify, and to limit the processing of their data.

From an ethical point of view, all of the participants had to validate the General Terms of Use of the online platform, which we drafted in compliance with the GDPR. All of the participants also had to validate an online informed consent form before being able to access the questionnaire.

2.1.2. Inclusion Criteria

Our study focused on adult family caregivers living in rural or urban France.

Our aim was to recruit a sample made up of the following 3 subgroups:

• Family caregivers of an adult with a physical disability;
• Family caregivers of an adult with a psychological disability;
• Family caregivers of an elderly person with a loss of autonomy.

We worked exclusively with participants who were family caregivers. After numerous discussions, we felt it would be too difficult to involve family caregivers with their loved one due to ethical issues and the need to provide listening spaces for each person.

Excluded were non-family caregivers (friends, neighbors, volunteers, etc.) and family caregivers of a minor relative, family caregivers who are minors, under guardianship, or in psychiatric care.

2.2. Data Collection

To carry out our investigation, we chose a cross-sectional research methodology, which includes qualitative (semi-directive interviews) and quantitative (questionnaire) data collection tools.

This methodological approach aimed to approach our problem from different angles, through the participants’ standardized answers to questionnaires, but also through the collection of the caregivers’ discourse during semi-directive research interviews conducted by psychologists.

Participants were recruited through two calls for participation (one for the questionnaire and the other for the interviews). They were distributed via several channels, namely, program partner associations, external associations, and online caregiver groups on social networks.

2.2.1. Questionnaire

A pre-questionnaire was developed to include the participants, consisting of 13 questions covering the inclusion criteria, followed by a questionnaire consisting of 54 questions posted on the website “covidaidant.com”. The questionnaire was developed and created in collaboration with the partner associations of caregivers.

The final version was divided into the following sections with several series of questions:

• A “pre-questionnaire” assessing the eligibility of the respondents;
• A section to assess the socio-economic situation;
• A section to assess the participants’ caring practices;
• A section to assess the health, physical, and psychological status of the participants;
• A section to assess the use of digital tools.

We incorporated validated scales directly into the questionnaire, enabling us to obtain relevant and interesting data on physical and psychopathological health.

The Fragire grid [20] is a measure of frailty that is part of the approach to frailty developed by Fried [21,22]. This is a questionnaire consisting of 18 questions. In our survey, only the first question was addressed to the participant: “How would you describe your own state of health on a scale of 0 to 10? (0 = as bad as possible–10 = as good as possible)”.

Depression was measured using the Lickert PHQ-9 scale [23,24], which was translated and validated in French. This is a screening tool for depression in adults. It consists of 9 items asking about the frequency of discomfort perceived over the last two weeks (never to almost every day). The threshold criteria were as follows: minimal depression (score from 1 to 4), mild depression (score from 5 to 9), moderate depression (score from 10 to 14), moderately severe depression (score from 15 to 19), and severe depression (score from 20 to 27). Anxiety was measured using the GAD-7 Likert scale [25], which was translated and validated in French. It is a screening tool for generalized anxiety disorder according to the DSM [26]. It consists of 7 items asking about the frequency of discomfort perceived over the last two weeks. The threshold criteria were as follows: the absence of anxiety (score between 0 and 4), mild anxiety (score between 5 and 9), moderate anxiety (score between 10 and 14), and severe anxiety (score between 15 and 21).

2.2.2. Semi-Directive Interviews

In conjunction with our associative partners, we put out a call for participation to recruit family caregivers of legal age to take part in semi-directive interviews, living in rural and urban areas and caring for a physically or mentally disabled person, or a senior citizen.

We worked on the methodology for gathering qualitative data by creating a standardized semi-structured interview guide. This was designed to meet the objectives of our study.

The interview guide evolved in line with the health situation in France since the start of the program. It was divided into the following 4 thematic blocks, related to the different themes of the questionnaire:

• Block 1: Socio-economic status: anamnesis of caring practices, life events, family/household situation, etc.
• Block 2: Caring practices: situating caring practices (daily life, financial support, and moral support), looking in greater depth at the question of caring practices and how they have changed since the pandemic (and during the pandemic).
• Block 3: State of health, well-being, and psychological frailty: the state of physical and psychological health as perceived by the participant, the impact of the health situation on the perceived difficulty of caring practices and on the physical and psychological state of health of the caregiver, and the consequences of caring practices on the caregiver.
• Block 4: Use of information and communication technologies: technological equipment, time of use, and the activities carried out using these tools.

2.3. Data Analysis

2.3.1. Questionnaire

In this article, we applied a descriptive data analysis through graphic visualization. We observed the response percentages of our participants in order to observe the psychopathological state of the caregivers. We also looked at the use of digital tools in the caregivers’ practice during and since the COVID-19 pandemic.

2.3.2. Semi-Directive Interviews

The interviews were transcribed using NVivo software (NVivo 12, Release 1.7) and reviewed by the psychologist who conducted the interviews so to ensure their conformity. The method of data analysis used was categorical content analysis. This was carried out by creating a thematic analysis grid of the discourse, which includes the thematic blocks of the interview guide as well as the concepts employed in our hypotheses.

The thematic analysis grid was filled in “by hand” by the research team members who conducted the interviews, as well as by another member of the research team (an external evaluator and three psychologists).

Simultaneously, the analysis grid parameters were integrated into NVivo to facilitate a detailed examination of the lexical patterns and to conduct a comprehensive verbatim analysis using the following two complementary approaches:

• Bottom-up approach: This approach involves a lexical analysis starting directly from the discourse, allowing for the identification of recurring terms, patterns, and concepts as they naturally emerge from the data. This inductive process helps to uncover unanticipated themes and insights grounded in the participants’ language.
• Top-down approach: This approach utilizes a thematic analysis guided by predefined themes, enabling a more structured exploration of the data based on the key concepts identified prior to the analysis. By focusing on specific themes, this deductive method helps to validate or expand upon the hypotheses underlying the study.

These dual approaches in NVivo provide a robust framework for capturing both emergent and pre-identified themes, ensuring a thorough understanding of the discourse from both lexical and thematic perspectives.

3. Results

3.1. Corpus

We collected and analyzed data from the 65 questionnaires that were filled out. The characteristics of the participants who responded to the questionnaires are described in the

Table 1. Characteristics of the participants (questionnaire).

	Caregivers (n = 65)	Significant Others
Age distributions	33 to 80 years old	14 to 98 years old
Median age	60 years old	74 years old
Gender	83% women	52% women

below.

It is noted that our sample includes 17% of participants living alone with their caregiving relative.

In the sample of data from the questionnaire, the caregiving practices of the respondents were distributed as follows in the

Table 2. Types of caring practices (n = 65).

Types	Percentage
Financial support	49% (n = 32)
Help with daily living (medical care, domestic tasks, etc.)
Every day	62% (n = 40)
Several times a week	20% (n = 13)
Moral support (psychological support, emotional support, etc.)
Several times a day	43% (n = 28)
Once a day	32% (n = 21)

with the frequency of these practices in italics.

In addition, 11 interviews were conducted, one of which could not be used. The remaining interviews were analyzed. The characteristics of the interview participants are described in the following

Table 3. Characteristics of the participants (interview).

	Caregivers (n = 10)	Significant Others
Age distributions	34 to 88 years old	56 to 95 years old
Median age	68.5 years old	80.5 years old
Gender	100% women	40% women

.

Of these, four lived in rural areas and six lived in urban areas. Seven of them were caregivers of a person with mental and/or cognitive problems and three were caregivers of an elderly person with a loss of autonomy.

3.2. Psychopathological Consequences During the Pandemic

These results (

Table 4. Observation concerning the health status (n = 65).

Types	Percentage
Health status (FRAGIRE Grid)
“as bad as possible”	23% (n = 14)
“as good as possible”	5% (n = 3)

) show that 23% of the participants in our sample rated their health as “as bad as possible”, compared with 10% in the literature.

The questionnaire data indicate a fragile psychological health state. Indeed, about one in two caregivers in our sample was in a state of depression (50.7% above the threshold) and/or anxiety (58.4% above the threshold). Indeed, the data highlight a very high prevalence of anxiety disorders (Figure 1) within this population. Although less pronounced, the prevalence of depression (Figure 2) is also important.

Moreover, the results show that moral support is a practice that was augmented during confinements due to the COVID-19 pandemic, with 55% doing so several times a day during confinements and 43% after the confinements. A total of 32% of the respondents to the questionnaire stated that they could not turn to anyone for help. Thus, more than a third of the participants experienced a lack of support and a certain level of isolation, which are likely vulnerability factors.

We also observed these phenomena during the interviews. Indeed, on a psychological level, the participants described feelings of loneliness, anxiety about contamination, and guilt.

The NVivo discourse analysis provided additional depth to our understanding of caregivers’ psychological health and highlighted several elements that complement the quantitative data. The thematic analysis (top-down) revealed that, on average, 40.4% of the participants’ discourse contained psychopathological elements, such as references to anxiety, stress, and sadness. This aligns with the quantitative findings, which indicated a high prevalence of anxiety and depression among the caregivers. Moreover, the bottom-up analysis identified that the most frequently mentioned term among 10 participants was “time” (n = 6/10), indicating a shared sentiment of time scarcity. Participants expressed frustration over the lack of time to properly care for both their loved ones and themselves. This theme underscores the quantitative finding in the questionnaire that 32% of caregivers reported having no support network, as a lack of time often compounded feelings of isolation and vulnerability.

We also observed a high level of physical exhaustion expressed in the discourse of most participants, sometimes accompanied by muscle pains. Sleep and eating problems were also reported. This latter point resonates with the observation obtained within the questionnaire sample regarding caregivers’ perception of their health (23% as bad as possible vs. 5% as good as possible).

3.3. Use of e-Health and Digital Adaptation Strategies

As shown in Figure 3 our data show that 80% of participants did not use digital tools for remote interventions by health and social care professionals. It should be noted that 17% of our participants used these tools partially, while 3% used these services entirely remotely.

Our results (Figure 4) show that, during the periods of confinement, 44.2% of the caregivers who responded to the questionnaire used digital media to communicate with people they already knew (14.3%), with new people (14.3%), or with associative networks (15.6%, n = 10). Since the end of the containment measures, 39.6% of caregivers who took part in our survey say they still use digital media to communicate with people they already know (12.9%), with new people (11.4%), or with associative networks (14.39%).

As shown in Figure 5 our data show that 53% (n = 34) of caregivers used digital tools with/for their significant other and in order to carry out helping practices, such as psychological support or assistance with the tasks of daily living.

In summary, the data described indicate a low utilization of digital tools for e-health purposes (80% did not use these tools for this purpose, nor for e-health with the care recipient (10%)). Within our sample, about one in two caregivers (53%) used digital tools as an aid. It is noteworthy to observe a major use of digital tools for communication purposes.

During the interviews, the use of digital tools was described by most participants, but to a lesser extent for caregivers living with their care recipients.

The following two types of uses were very marked:

• Medical follow-up: family caregivers used tools such as Doctolib for medical follow-up (making appointments for face-to-face interviews), and, for some, this also allowed them to take time for their own health with a video consultation, even after confinement.
• Social bonding: The use of digital communication tools was also very popular for creating social bonds. All of the participants reported having carried out video conferences with close friends and family to maintain a social link. Some of them also mentioned using online groups to discuss the problems they had encountered.

4. Discussion

During this research program, we investigated the psychopathological consequences of the COVID-19 pandemic for family caregivers.

Our assessment of participants’ anxiety and depression dimensions indicated a high level of psychological frailty among them. Discourse analysis revealed a predominant psychological exhaustion, consistent with the findings from the questionnaire, showing high scores of depression and anxiety.

We may question the prevalence of these psychological vulnerabilities among caregivers compared to the general population. In France, the Fondation Fondamental [27] conducted a mental health survey that included the GAD-7 scale. Data from this survey showed that 31% of the population had a score equal to or higher than seven on this scale. Within our sample, 58.4% of caregivers had a score equal to or higher than five, indicating a particularly significant state of psychological frailty in this population. Other scientific studies support our findings, such as a survey conducted in Italy to assess the well-being and familial distress of caregivers during the lockdown, which highlighted significantly higher individual and familial distress among caregivers compared to controls [28].

The confinement marked a period significant isolation for everyone, but also highlighted pre-existing isolation among caregivers [8]. This period of social isolation also led to changes in certain practices, such as increased moral support (55% during confinement vs. 43% since confinement), which may have led to increased psychological costs and a heightened risk of psychological frailty. This psychological frailty may have been exacerbated or linked to the physical frailty. Indeed, statistical data indicate a fragile physical health status within our sample, which is consistent with the physical exhaustion described in interviews and supported by the literature, describing an increase in physical and psychological burden among caregivers due to this pandemic [29].

These various links underscore the importance and interest in adopting a multimodal approach to assess frailty. This notion and its relationships are particularly relevant in terms of prevention and providing respite support. These different elements tend to validate our H1 hypothesis regarding the psychopathological impact of this pandemic period on caregivers.

On the other hand, the COVID-19 pandemic has led to social distancing between people, encouraging the use of digital tools to stay in touch with loved ones [30]. In terms of telehealth, some studies indicate an improvement in resilience and well-being among the caregivers of individuals with neurocognitive disorders [31]. Considering the pandemic’s context and these results, we hypothesized in H2 that family caregivers would adopt the increased use of e-health among their digital practices.

While the interview data highlighted the practice of teleconsultation with physicians, the questionnaire responses did not support this. Our observation shows that only 17% of the participants partially used digital tools for health purposes. It would be interesting to be able to question the non-adoption of digital tools during this period, and even afterwards. Is it due to a lack of access to tools? A lack of knowledge about how to use them? A fear of digital tools? These elements could provide answers of interest and guide future studies in setting up training or support strategies.

There is currently still limited published data in the scientific literature about the use of digital tools by caregivers, especially in France, in the post-COVID-19 era. However, our survey highlights the following interesting point: the use of digital tools for social purposes, particularly in seeking relationships with peers via social media. This observation can be related to the isolation described by caregivers, with 32% of them in our survey stating they had no one to turn to.

The use of these online groups appears to be widespread, particularly in the search for information, but also for moral support, social links, and to share and vent, as shown by the study of messages posted by caregivers to understand their experiences during this period [32,33]. In addition, Cherak et al. [34] studied the use of social media by the caregivers of patients in intensive care units and highlighted its positive aspects. The use of social networks can thus lead to a form of identification with peers, resulting in the creation of digital relationships that become privileged relationships [35].

This type of use of social media in cyberspace evokes the fact that they are invested as an intermediary, transitional space [36], enabling the caregiver to find a privileged form of comfort, listening, and support. The online group can, in some cases, become a third-party space in which caregivers can express their feelings anonymously or otherwise. These phenomena deserve to be highlighted and explored in the future, especially as a lack of awareness of the online resources available to support caregivers is a major challenge [37].

Our data did not allow us to validate our second hypothesis, but they provided interesting insights. Particularly, they highlight the potential of social media for access, sharing, support, and information for caregivers. So, while we may be surprised at the low use of e-health services by caregivers during the COVID-19 period according to our observations, the other digital uses they described seem interesting to note. The social vocation of these uses, and the search for information sharing between peers, may support the notion of a transitional digital space, which could also serve as a gateway to e-health facilities.

4.1. Limits

It is important to consider these data in the light of certain limitations, particularly in terms of the recruitment and sample size.

The family caregivers who took part in the interviews and answered the questionnaires were mostly from the associations’ internal networks, so they were fairly committed and used the technical support to receive information from the associations. This represents a bias that needs to be taken into account, particularly with regard to the results on the use of digital tools, where it is possible that this population is more likely to have access to and use these tools than more isolated caregivers.

Consequently, we may not have in our sample more isolated caregivers who are less familiar with digital tools and who may have had a different experience of this period. It would be interesting in future studies to focus on this isolated population, who have had to adopt different strategies during this difficult period, and for whom the state of mental and physical health could possibly be different.

Finally, the sample size of both the questionnaire and the interviews testifies to the difficulty in recruiting caregivers, probably because they have difficulty in finding and devoting time outside of their caregiving activities, as shown by the bottom-up lexical analysis of the interview discourse.

Our aim in this article was to carry out a descriptive statistical analysis of the data collected in order to identify multidimensional indicators of frailty among family caregivers.

Despite the small sample size in our study, which limits the value of the statistical analysis, we note that there is very little published data in France on the mental health of family caregivers, particularly during the COVID-19 pandemic. For example, there is no assessment of the mental health of family caregivers in the survey published by MACIF in 2020 (n = 2306).

We therefore proposed a descriptive analysis of our data in order to contribute to an inventory of caregivers’ care practices, their psychopathology, and their use of digital tools. These observations make it possible to establish an initial observation based on a limited sample and period. These observations may also be useful for considering larger-scale data collection and identifying multidimensional indicators of frailty.

4.2. Practical Recommendations

Our study raised several questions and we came up with several recommendations for caregivers.

4.2.1. Psychological Difficulties (Prevention and Follow-Up)

The data collected via the questionnaire established a high occurrence of anxiety and depressive psychological disorders among the participants. Several elements can be linked to this finding. On the one hand, the observation of the data highlights the expression of a feeling of lack of time among participants, particularly during the semi-directive interviews. On the other hand, digital tools seem to be used to create social links or for leisure activities, but more rarely for telehealth practices (e.g., teleconsultation). This underlines the need to develop telehealth interfaces that are more “relational” or even playful. In this way, these new uses of digital tools could complement the range of care and services available to meet the specific needs of caregivers. Access to digital psychological support tools, such as teleconsultations, self-treatment software, and applications and/or mental health education, seems to need to be strengthened. In this context, it could be interesting to offer different modes of contact with professionals (written, telephone, and videoconferencing). So, to what extent could better access to teleconsultation contribute to optimized care for the person being cared for and the caregiver?

4.2.2. Creation of a Database

Our mixed methodology (qualitative and quantitative) aimed to observe multidimensional indicators of vulnerability and risk of (pre)frailty at the physical, psychological, and socio-economic levels among caregivers. The online questionnaire enabled us to observe these different dimensions. A larger number of completed questionnaires would enable us to refine the indicative value of the data collected. It would also enable us to build up a database from the participant profiles, give it consistency, and then enable comparisons and gradually organize statistical learning. At the same time, it would be interesting to work on caregiver “typologies” (cf. BPCE national survey, 2021). This could be linked to the implementation of personalized services according to the different profiles. These approaches, aimed at supporting caregivers, will also enable us to better support the people they help.

4.2.3. Access to Information for Caregivers

Among our data, many participants expressed difficulties in accessing information on their potential rights to assistance. It therefore seems that digital tools could be optimized to better inform caregivers. This can also be achieved through training. In this respect, training for caregivers is often more accessible at a distance, while enabling the transmission of knowledge and the establishment of a good group dynamic. For example, “training courses” to learn about the rights and assistance available to caregivers and their loved ones would be interesting. These observations are innovative and may draw attention to the more “relational”, ergonomic, and even playful aspects that still need to be developed in e-health interfaces. This could involve the creation of exchange interfaces with access to specialized content, available training courses, where caregivers could have the opportunity (if they so wish) to exchange with other caregivers, or even mental and/or physical health professionals.

5. Conclusions

This study enabled us to observe changes in individual caregiving practices since the start of the COVID-19 pandemic. In this context, we were able to build up an interesting database on the impact of the pandemic and the use of digital tools among French caregivers, a phenomenon that has been relatively little studied until now. The data collected during our study also highlighted the isolation and sense of invisibility of this population.

This highlights the significant psychological and physical frailty of an invisible population which, despite the end of the pandemic, remains isolated. Indeed, as shown by our questionnaire results, but also by the caregivers’ experiences during the interview, the psychopathological state of caregivers is quite fragile, with anxiety–depressive symptoms and a very low estimation of physical health. This raises the question of how we might intervene to reduce this burden and perception.

With regard to the use of digital tools by family caregivers, the data we collected indicate that online social networks are the preferred means of communication. This opens up new avenues for reflection on the potential uses of social media that could be developed in the services offered to caregivers. Certain uses could facilitate the access to care and/or support, either individually or through peer groups.

In this sense, future studies could be relevant. In particular, the possibility of having a larger sample to observe and study in a multidimensional way the psychopathological and physical impact of caregivers in relation to social isolation, financial insecurity, or access to digital tools. This would allow us to integrate an assessment of caregivers’ physical frailty during interviews, the interest and concrete long-term use of digital tools on caregivers’ experience, or the interest in accessing virtual healthcare systems without the need to travel, adapted to their daily lives.