Bringing older informal caregivers and recipients to the digital age: Experiences of using digital services

1.Introduction/background

According to estimates, 1.2 million Finns sometimes care for their close ones and approximately 350 000 of them are their primary caretaker [1]. Informal caregivers are an economically significant resource, as their work significantly lessens the costs of social services and affect the costs of healthcare services [2].

Over the past three decades, there have been many studies of informal caregivers. Topics include their backgrounds, their needs for support, and intervention programs that have aimed to meet their needs [3]. Most informal caregivers are the retired spouses of the recipient. Earlier studies show that their burden is greater than that of other informal caregivers, which also means a greater risk of health problems [2, 4]. Informal caregivers describe their care relationship as a complex and emotional relationship of responsibility, which causes them several kinds of harm, such as physical exhaustion, feelings of hopelessness, lack of recognition and economic loss [5, 6]. However, they also report experiencing positive effects, of which the most important are feelings of closeness to the recipient, improved self-respect and feeling appreciated for their work [6, 7, 8]. Even though there is a great deal of knowledge of informal caregivers’ experiences of the care relationship, information about the effects of various intervention programs in improving their situations is still missing [9].

Schulz et al. [10] describe the recent development of technology as a digital revolution, which is shifting the balance from mechanical devices to digital technology. This will allow for the development and use of computers, smart phones, the Internet, robots and countless recognition and aid software to ease the lives of informal caregivers. The development of new technology is a challenge to informal caregivers, who will have to use more challenging technological devices [11] and perform more complex care procedures [8, 11]. This study focuses particularly on supporting older informal caregivers through technological means.

There have been many studies of technologies supporting the elderly’s living at home. Assistive technology was most often used for mobility, washing up, intimate hygiene and rising from bed [12]. Homes have been modified to allow for the independent performing of the above [13, 14]. It is possible to make the home safe and accessible with the aid of technology. Safe home appliances, burglar alarms and emergency call devices are among the technological solutions that lead to better living at home according to the elderly [15, 16]. The neighborhood is important in keeping the home supportive and safe [17, 18]. Elderly people who maintained contact with their neighbors and community experienced their home and neighborhood as more positive than others and were able to live at home longer [17].

Chen and Schulz [19] conducted a literature review of ICT interventions that aimed to decrease the social isolation of elderly people. ICT was found to improve the amount of social support they received along with their connections with others, but its effect on experiences of loneliness remained unclear. Connections to the outside world, receiving social support, participating in interesting activities and improving self-esteem were important factors in lessening the elderly’s social isolation and feelings of being an outsider. Informal caregivers’ personal life is particularly in danger of becoming nothing more than caring for the recipient, especially when they need full-time care [19, 20].

Studies show that elderly people also used IC technology in maintaining family relationships and as sources of information on health bulletins as well as various activities [21, 16, 1].

Highly educated people who lived with a spouse were most likely to use ICT. They also had a positive attitude towards technology, whereas non-users experienced it as threatening and stressful [22].

Even though the elderly are seen as a growing customer group, only a few service producers have created solutions from their point of view [15]. A thorough knowledge of the context in which the technologies are used in the design and research phases is instrumental in gaining the acceptance of the market and the users [23]. The “Bringing older informal caregivers and recipients to the digital age project” reported in this study had informal caregivers and recipients develop digital welfare services together with various experts.

The overall goal of the project was to produce a support model for older informal caregivers’ welfare services. The project assessed the suitability of two digital services, a communication and leisure application and a game application, for improving the target audience’s quality of life after a seven-month pilot period. This article describes the pilot group’s quality of life and their experiences of the services.

2.Purpose and aim

The purpose of this study was to describe one city and one rural municipality’s older informal caregivers’ quality of life, digital capabilities, interest and experiences in digital services as a part of everyday life and the recipients’ experience of the memory game.

This study answers the following questions:

3.Description of the intervention

The intervention contained the following services delivered through tablet computers, which were provided by the project: 1) live broadcasts twice per week (eg. meditation, chair yoga, chair exercises, balance exercises) 2) informational videos on YouTube and 3) zoom virtual meetings. The subjects chose a live broadcast activity that appealed to them and initially committed to it for two months. After this, they were given a chance to choose a new activity. Many however chose to continue the same one for the entire pilot stage. The Informational videos were produced by the researchers, based on topics requested by the informal caregivers. Their lengths varied between ten to fifteen minutes and discussed topics such as memory illnesses, the proper diet for a Marevan patient and the use of medicine. The researchers produced thirty videos, which the subjects could watch at their leisure through a link saved on the tablet’s front page. The virtual Zoom meetings were organized weekly. The subjects spoke about topics chosen by themselves with other group members. There were two groups, one for the rural and one for the urban subjects. Even though these programs were intended for the informal caregivers, the recipients were welcome to participate in all but the Zoom meetings. Many of the couples did participate in the programs together.

The project also tested the memory game Memoera, which is a Finnish game device developed for people with memory illnesses. It has been designed to be easy to use and to activate multiple brain functions and senses simultaneously through quizzes and games (https://memoera.fi/). Each test subject received a device for the seven-month duration of the pilot stage. Even though the game was intended for the recipients, the informal caregivers were encouraged to play the game with them.

4.Research data and methods

5.Results

5.1Informal caregivers’ quality of life by 15D instrument

The informal caregivers’ ages ranged from 61 to 88. Fifteen of them were female and five men. They all cared for their spouse at home. Nearly all of the care recipients had a memory illness.

Figure 1.

The quality of life of the caregivers in the city and rural region 1st and 2nd measurements: Normal or Mild difficulties (N= 19).

Figure 1 shows the results of the caregivers’ questionnaires as frequencies so that the first measurement shows the initial results and the second measurement shows the results after the intervention. The results show that mobility, eating, speech, mental functions, distress, vision and hearing have remained at the same level. Breathing, sexual activity, vitality, depression and usual activities have worsened mildly, while discomfort, symptoms, and sleep have improved mildly. The results show that changes during the period of approximately one year, positive and negative, remained mild.

5.3Informal caregivers’ expectations for the digital project

All informal caregivers knew how to use a computer and 14 (N= 19) reported being able to use it very well. Seven respondents could use a touch screen tablet very well. Half of the caregivers had participated in a video call on a computer and five had done so on a phone.

All informal caregivers used the computer daily for obtaining information and online banking. All had cell phones, most of which were smartphones. Some were already using tablets, but most were interested in learning to use one as part of the project. Their expectations for the pilot project included a change of pace, getting to know new people and keeping with new technologies. Curiosity was also a significant motivation. Wishes for live programs on the tablets included exercise programs such as chair gymnastics, yoga and balance exercises. They wished for specialist lectures on memory illnesses, musculoskeletal diseases and pain treatment. They were also interested in entertainment programs involving group singing and quizzes.

Figure 2.

Informal caregivers’ (n= 19) experiences of the service.

Figure 3.

Informal caregivers’ (n= 19) experience of the YouTube videos.

5.4Informal caregivers’ experiences of digital services after the intervention

5.4.1Communication and entertainment service

Out of all informal caregivers, 89% (n= 19) thought using the tablet was easy. Nonetheless, more than half reported needing help in using the service (Fig. 2). Almost all found making and receiving video calls on the tablet easy. Despite this, many preferred to communicate with their friends and family by using their smartphone or personal computer, to which they were accustomed. Most respondents considered the picture quality good.

5.4.2Video recordings

The project created thirty informational videos that are viewable on a hidden YouTube playlist. Slightly more than half of the informal caregivers (56%) viewed videos during the pilot stage, but statistics on YouTube show that they have continued watching the videos (n= 292 by 30 November 2018) after the end of the phase. More than half of the respondents thought that the videos were of a good length and had a slow enough pace. Approximately half of the viewers thought the picture was clear and that watching them worked well. The volume level was considered loud enough by 44% and 39% thought the links worked well (Fig. 3).

Some of the open responses hoped for a slower-paced and calmer style of presentation. Some videos were difficult to understand because of inconsistent audio levels or unclear articulation.

Figure 4.

Informal caregivers’ (n= 19) experiences of the Zoom service.

Figure 5.

Recipients’ (n= 19) experiences of Memoera.

5.4.3Live broadcasts

The informal caregivers were generally satisfied with the contents of the live broadcasts. Many considered the exercise broadcasts their favorites and found the broadcasts well designed and executed. They also tried less familiar contents related to meditation and mental management, but did not find them as useful as the exercise programs. They were very happy with the lectures and question and answer programs held by experts. However, the caregivers found the schedules of the live broadcasts limiting and felt that they had to organize their time around them. They suggested that the broadcasts should be recorded and made viewable at a convenient time (Fig. 2).

Technical difficulties made viewing the broadcasts less pleasant, particularly for the rural group. Unstable Internet connections sometimes interrupted the broadcast, which caused confusion and irritation. Sometimes promised programs were not broadcast. Overall, the caregivers were happy with the digital services and 86% would recommend the service to others once the technical problems were solved.

5.4.4The Zoom service

Zoom virtual meetings were attended by 72% of the informal caregivers. One fifth thought the Zoom service worked well and half had trouble signing in to the service. One of the problems was a lack of instructions in Finnish. The rural group in particular had trouble reaching the intended topic, as problems with the technology became topics of discussion. The urban group considered the meetings successful and enjoyed meeting and befriending peers (Fig. 4).

One of the caregivers expressed the matter in the following way:

“or example, these Zoom conversations, they gave you that kind of peer support that you saw others were doing even worse and thought that your life still has ways to go before the bottom”

5.4.5The recipients’ assessment of the memory game device

The Memoera memory game device was played by 87% (n= 19) of the recipients. The technical qualities of the device were seen as good, but the difficulty of the games divided opinions. Some considered them too easy while others found them just difficult enough. However, the games themselves worked well and were easy to use with their bright screens and clear instructions. The level of the player’s memory illness was a determining factor in both their enthusiasm for the game and their experience of the game’s easiness. Some recipients had to be reminded of the device or needed someone to play the games with them. Many found playing the games with their great-grandchildren a pleasant way to spend time. Many played the games daily, some less often and some not at all (Fig. 5).

All of the games shared one feature: the faster it was played, the faster the difficulty level rose. Those who found the games too easy might not have played fast enough, which might be why they were not enough of a challenge.

6.Discussion

Family and neighbors, volunteers and social and healthcare professionals are the main groups who assist informal caregivers in their work. Ways informal caregivers could benefit from technological services include having access to current information, maintaining relationships and receiving psychosocial support. Isolation and loneliness are major risks to informal caregivers’ wellbeing and quality of life. As many are retirees themselves, they have a great risk of losing contact with the outside world as they focus on caring for the recipient. Their own aging can predispose them to physical and mental problems. They often have trouble sleeping, as they are responsible for the recipient even at night [4].

This study assessed the quality of life of informal caregivers via both the quantifying 15D instrument and interviews. The measurements, which were made before and after the intervention, show small changes which could not be tested statistically due to the small sample size. Usual activity, sexual activity and mobility were the weakest categories both before and after the intervention. Informal caregivers found life most meaningful through caring for the recipient. This study shows that recipients’ worsening condition decreased informal caregivers’ desire to live, while participating in various activities increased their sense of freedom and increased their welfare.

Informal caregivers had important relationships outside their home, as the neighborhood was important to their welfare. Many had spent decades in the same area and knew their neighbors as reliable figures who made them feel safe, as in the study by MacKenzie et al. [17]. Some couples had had to relocate to a more functional home in a new neighborhood, where they had however found a safety net with their new neighbors. Few of the caregivers considered themselves lonely or outsiders. This was partly because of their active, even busy lives outside the home. Technology cannot replace genuine human relationships as stated in the study by Jännes et al. [15], but individual technological solutions can support and maintain social life. As technology enables rapid contact with one’s friends and family, it can improve one’s sense of safety and quality of life in e.g. situations where informal caregivers cannot participate in activities outside their home as much as they would want. Some of the informal caregivers in this study felt too tied to their home and wished for more freedom and personal time.

Losing earlier friendships was a factor that caused sorrow. The caregivers could not understand why their spouse’s illness had made friends abandon them. This can be understood as friends not knowing how to behave around the recipient or what to talk about, particularly if they know nothing about the recipient’s illness. Discussing the topic openly with friends could increase understanding and prevent abandonment. Their number of friends had also decreased over the years as their friends had died. One of the goals of this project was to help the caregivers form new friendships with peers in the same situation, for which the intervention offers a good platform. According to the systematic literary review conducted by Dam’s research group [16], support given by informal caregivers’ age-mates, social networks, support groups, either in person via remote access, is important. Their literature review suggest that diverse forms of support are the most efficient way of achieving social support and welfare goals. According to earlier studies [20, 21] informal caregivers found respite in online communities and received emotional support through them. This study’s findings on the necessity of peer support reinforce earlier findings.

According to Torp et al. [25], informal caregivers benefited from increasing technological information and messaging services, as using the services gave them more social connections, support and information about chronic illnesses and their treatments. Participants in the study were particularly appreciate of peer support. The intervention also increased their communication with friends and family. Information and communication technology can thus be said to have potential in increasing the welfare of informal caregivers of aging spouses.

All the informal caregivers in this study could already use a computer and a cell phone regardless of their educational background. It appears that the digital project attracted caregivers who were already familiar with IC technology. They knew how to search for information on the Internet and how to apply it to their needs. Contrary to this, Farshchian and Dahl’s study [23] found that post-secondary education or living with a partner correlated with more active use of information and communication technology among those aged 65–70. The majority of the respondents in their study [2] used information and communication technology to maintain social connections and to obtain health-related information, as was also found in this study. Differences in results between studies performed in different countries can be affected by cultural factors and different levels of development. Finnish elderly people use information technology actively, as the governmental statistics institution Statistics Finland has found that 75% of those aged 65–74 use the Internet regularly and 43% use it several times per day. Out of this age group, 33% use the Internet via smartphone. People older than this use information technology less, but even of those aged 75–89, 37% use the Internet regularly. No difference in the amount of Internet use between men and women has been found [26].

In this study many also made video calls with their friends and family and considered it an important way of participating in their lives. The results support those of Chen and Schulz [19], who found that digital services enable forming connections to the outside world, receiving social support, participating in interesting hobbies and increasing self-confidence. One of the sources of stress faced by the caregivers were the new duties they had to bear due to their spouse’s illness. It was difficult for them to assume responsibility for the family finances and their online management along with all their other tasks. Receiving outside support in their stressful situation is extremely important to their welfare. As they constantly live with the recipient’s illness, the informal caregiver needs personal time outside home to feel refreshed and empowered.

Out of the informal caregivers participating in the project, 83% would recommend the project’s digital services to others despite the technical difficulties. This service was recommended particularly to informal caregivers and lonely elderly people, who either cannot leave their home or live in sparsely populated areas with few services and neighbors and friends. The devices and the programs did not always function well, leading to situations like missed or interrupted live broadcasts. This was vexing, as many had canceled other activities for the live broadcasts. The caregivers generally found the schedule of the live broadcasts inflexible and suggested that they be made available to watch afterwards. While this would be more convenient, it would also defeat the purpose of interactive live broadcasts. The people working on the project could not help with all of the problems faced by the informal caregivers, as they were part-time employees. Continuing the service after this project would require enough clients to enable the hiring of a project coordinator. They could also provide rapid assistance with technical difficulties. The services in this project were bought from an established Finnish company, which is why the service was assumed to work without difficulties. Some of the broadcast interruptions were due to slower broadband connections in rural areas, some due to difficulties with the company.

Even though all the informal caregivers regularly use a computer, they still reported needing more technical support with the devices than they received from the researchers. The result supports Carretero et al.’s [4] finding that informal caregivers need a great deal of technological knowledge and support in using services. This project relied excessively on their capability and did not sufficiently consider their need for support. The Zoom service in particular never worked properly in the rural area, despite much effort. Many wanted the virtual peer support, as it is a good way of maintaining social relationships. The results support earlier studies, which have found that informal caregivers require both emotional and technical support [4, 10].

The informal caregivers were happy about the chance to use a tablet. The project gave them an opportunity to learn how to use it, along with other new things. The couples appreciated the chance to participate in the project and thought it was important to advance the cause of informal caregivers through projects such as this one. They were also glad for the chance to become acquainted with other informal caregivers.

Nearly half of the informal caregivers made a video call to another informal caregiver through the tablet. Nearly all thought that making and receiving video calls was easy. The researchers also wrote text messages that were visible on the tablet screen, but the caregivers could not themselves send or receive text messages. One topic of feedback was the lack of a notification for a missed video call, which the caregivers thought could cause misunderstandings. The device did not ring long enough, which sometimes made the caregivers miss calls. They were directed to always keep the device plugged to the charger, which caused vexation, as the cord of the charger was too short. Figure 6 shows a summary of the intervention’s results.

Figure 6.

Summary of the seven-month intervention’s results.

Figure 7.

Platform for digital services.

The YouTube videos focused on topics requested by the informal caregivers and aimed to provide information based on latest research in a brief and accessible form. Information provided through health technology has been found to help informal caregivers to understand the illnesses of the people they are caring for and to manage the stress of providing care [21]. The videos are still viewable on the hidden playlist, whose URL was provided to all the subjects of the projects. Some caregivers did not watch the videos at all, while some found them a useful source of information. The quality and technical execution of the videos must be higher in the future.

7.Limitations

In this study the informal caregivers completed the validated 15D quality of life instrument, which has been tested internationally for over twenty years. Its reliability and validity have been assessed as good. Due to the small size of the respondents, it was not considered expedient to create the profile offered by the instrument. However, the questionnaire served as a good introduction to the semi-structured interviews, which delved deeper into the caregivers’ everyday lives. The themes of the interview were chosen in cooperation with the project’s experts and were taken directly from The World Health Organization’s quality of life assessment (WHOQOL – BREF). The topics of the interviews were kept loose so that the caregivers’ own experiences could emerge freely. The interviews became discussions and the caregivers forgot they were participating in a study [24].

Content analysis was performed by both researchers, as both had experience in the study of informal caregivers. This was done to ensure that the researcher’s own prior understanding did not affect the interpretation of the results [24]. The goal has been to describe the analysis closely enough that the reader can follow the decisions made by the researchers.

The researchers interviewed 19 informal caregivers, which is a small number. These results were intended as a basis for planning the digital intervention in the project’s pilot stage and are not meant to be generalized.

8.Ethical considerations

The research project and the associated choice of topic is based on the demanding and changing role of informal caregivers as the recipient’s helper. The results can be used directly in advancing the welfare of informal caregivers. The permission for the study was granted by the ethical boards of the participating city and municipality.

The subjects participated in the study willingly and were told orally and in writing about the purpose of the study and what would be done with the information they provided. The covering letter given to them emphasized the voluntary nature of their participation, the confidentiality of the interviews and the anonymity of the analysis. The interviewer’s name and contact information were included in the letter and the caregivers were encouraged to contact them if they needed more information. The protocol of the Declaration of Helsinki of the World Medical Association [27] was followed throughout the research process.

9.Further research

In further development of the service, it is paramount to move the entire service to a single platform with large shortcuts to each segment. These shortcuts would enable the user to easily use the programs and contact people. There should be shortcuts to the service coordinator, members of the peer group, some friends and family members and if necessary, their nurse or doctor. All these people would require a phone and video connection and the option of sending and receiving messages. Saved information videos and live broadcasts would have their own shortcuts. The audio design should have sufficiently loud and long tones for phone calls, text messages and live broadcasts. The home page should be made easier to understand by using clearer colors. Figure 7 shows a possible model of organizing the service.