Keywords

1 Introduction

Currently, about 47 million people living with dementia worldwide and the number is projected to increase to 75 million by 2030 and 131.5 million by 2050 [1]. Nearly 25% of them reside in China [2]. With the largest number of people living with dementia in the world, China has an undeveloped dementia service system [3]. As dementia is a progressive illness [4], it causes overwhelming burden to caregivers who are expected to assume increased responsibility and more years of care than other caregivers as patients with dementia deteriorate [5]. Caregivers of dementia patients often experience high levels of stress and burden resulting from the challenges associated with caregiving. Their health and well-being are often at significant risk. Studies show dementia caregivers including ethnic minority groups exhibit far more depression and anxiety as well as physical health problems than caregivers of the same age/gender of people with no dementia [6,7,8].

The majority of dementia care is received at home where family caregivers play a central role but tend to lack professional knowledge and have limited care-related training to perform the caregiving duties to meet the needs of dementia patients [9]. Chinese dementia caregivers tend to keep problems within the family and, often, do not seek external information and support because of social stigma associated with mental diseases and cognitive [10]. Chinese cultural values, such as “filial piety,” obligate adult children to provide direct care alone and consider seeking external help as an abnegation of obligation [11, 12]. But the ‘one child policy’ in China multiplied the burden of adults in caring for older people, with a ‘4-2’1’ family structure (e.g. 4 grandparents, 2 parents, and 1 child) [1]. For Chinese living abroad, the lack of culturally competent information or services also contributes to service under-utilization by ethnic minority [13,14,15].

The first stage of dementia caregiver intervention research was devoted to the design and evaluation of in-person interventions that sought to provide education, support and improve competence for dementia caregiving [16,17,18]. Despite the effectiveness of many of these interventions, including some targeting ethnic Chinese, in reducing caregiver burden and depression and increasing self-efficacy [19], in-person interventions were found to be limited in their ability to reach wide audiences in a cost-effective manner [20,21,22].

To overcome limitations inherent in in-person interventions, the past decade has witnessed a new development, which is the reliance on information and communication technology (ICT) to deliver interventions to dementia caregivers remotely [23, 24]. ICT-based caregiver interventions have demonstrated their ability to successfully provide education, support, and training to caregivers across long distances [25,26,27,28]. In addition to the evidence of efficacy shown in clinical trials for general populations, ICT-based caregiver intervention programs also have the potential for widespread acceptance among Chinese users given the rapid growth of ICT access among them. In China, according to the survey of Pew Research in 2015, there were about 65% of the populations using the internet, which was 10% higher than 2013 [29]. China is the world’s largest smartphone market and 58% of Chinese own a smartphone in 2015, which increased more than 20% compared with 2013 [29]. The similar trend can be found among Chinese Americans. Seventy-five percent of Chinese-American adults own a smartphone, 45% have tablets, and over 62% of older Chinese Americans having internet access [30]. Moreover, 75% of Chinese Americans prefer using Chinese rather than English at home. Given there are nearly three million Americans who speak Chinese (second only to Spanish as the most spoken non-English language in the U.S.), an online training intervention program also has tremendous potential to reach and benefit Chinese American families, who are caring for loved ones with dementia.

Despite the advantages of ICT-based dementia caregiver interventions, given their potential to reach broad audiences [31], current interventions are confounded by the barriers to effectively engaging the target audience and keeping them engaged [32]. Self-directed learning (SDL), an approach developed from adult education research in which the learner takes initiative and exercises personal control over the planning and management of the learning process, provides a promising means of reducing the gaps identified above [33]. Compared with “teacher-directed” learning or “trainer-directed” training, SDL programs have been found to achieve a higher level of engagement from learners, especially adult learners than non SDL programs [34]. While the concept of self-directed, user-directed, or consumer-directed training for caregivers has been utilized in caregiver training programs [25, 31, 35], few researchers have tested the efficacy of self-directed training for dementia caregivers.

Based on research of both SDL educational programs and online dementia caregiver interventions [24, 36] as well as the common challenge of a lack of engagement in online interventions in general [32], a prototype of a web-based SDL system for Chinese family caregivers of elders with dementia was developed using a comprehensive engagement design. The formative evaluation for usability testing was performed on effectiveness, ease of use, and satisfaction of this prototype. The ultimate goal is to help caregivers to improve their caregiving self-efficacy and reduce their perceived burden and stress.

2 Methodology

2.1 Study Design

A single-arm prospective observation study is being conducted for the usability assessment. A mixed method design was used to collect both quantitative and qualitative data through several established usability assessment tools, such as surveys, interviews, and focus groups. We will refine the website through an iterative approach, aiming for continual caregiver satisfaction and engagement.

2.2 Study Participants

We recruited 12 end users based in China, who are caregivers for dementia patients in the community. The sample size is in accordance with the existing literature [37,38,39], where Kushnirk [38] and Vizri [39] have shown that 70% of severe usability problems can be discovered within the first five users, and up to 85% by the eighth user, then less problems tend be identified and they are also less significant. Patients are eligible to participate in this study if they are family or paid caregivers (e.g. nurses) working at the home setting. They were asked to operate and test the SDL training website by following a step-by-step guidance and report their feedback on the content validity and usability of the training videos and the website.

2.3 Procedures

Before the usability testing started, the study participants signed the informed consent and filled out the Demographic and Background Questionnaire [40], Computer Questionnaire [40], and Computer Proficiency Questionnaire [41].

After receiving brief information about the online intervention program, firstly, participants were given the website to explore for five minutes, which might take longer, if they are not familiar with the computer. They were then asked questions about initial impression of the site including ‘perceived/noticed functions’ (e.g., “here is the place to type my name”) and ‘ease of use’ (e.g., “Can the viewer easily navigate through the course?”, “Are headings and labels visually appealing and easy to read?”).

Secondly, the study participants were guided to one of the six selected task scenarios, including: login-in and navigation; taking needs and competence assessment; taking a training lesson; using progress tracker; using recommendation system; receiving and reacting to behavioral economics-based messages. In each task scenario, they were asked to think aloud as they proceed, and the researcher took notes on ‘effectiveness’ (e.g., user navigation patterns in relation to task completion), ‘ease of use’ (e.g., observed barriers and effort towards completion of tasks), and then discussed with the user about their experience with the program including their ‘satisfaction’ (positive attitude toward the program), and ‘user suggestion’ (which part they would like to improve).

Thirdly, a focus group discussion was conducted and the study participants were asked to fill out the System Usability Scale (SUS) [42] survey and Website Use Opinions Questionnaire [43].

2.4 Data Analysis

The usability testing data were collected and analyzed with the mixed method. Quantitative analysis was performed on the survey data, including SUS and the Website Use Opinions Questionnaire. The inter-rater agreement of raw system usability scores was assessed by the Intraclass Correlation Coefficient (ICC) with 95% confidence intervals. Cronbach alpha test was performed on the data to evaluate the internal consistency of the responses between the two measures for satisfaction. Thematic analysis was conducted to analyze qualitative data from the focus group discussion.

3 Results

3.1 Descriptive Statistics

Table 1 shows that the study participants we recruited are mostly female (91.7%), which is in accordance with the existing literature on the characteristics of caregivers [44]. They all obtained Associate Degree from Junior College (three years after high school) and are working as full-time caregivers.

Table 1. Demographic characteristics of study participants
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3.2 Quantitative Analysis

3.2.1 Computer Questionnaire

The results in computer questionnaire show that the majority of participants favor the use of computer. Figure 1 summarizes those major positive responses. The results show that the majority of participants already have basic computer knowledge and skills. These participants can operate the computers confidently.

Fig. 1.
figure 1

Summary of computer questionnaire

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  1. 1.

    According to my previous experience, I would like to learn some new software knowledge.

  2. 2.

    Learning about computers is a worthwhile and necessary subject.

  3. 3.

    The trainings on the operation of computers are beneficial to me.

  4. 4.

    I know that if I worked hard to learn about computers, I could do well.

3.2.2 Computer Proficiency Questionnaire

The overall situation in the computer proficiency evaluation is very good. The results show that the study participants have sufficient computer skills such as basic computer operation knowledge, printing, communication via emails, and surfing online, etc. Cronbach’s alpha coefficient is 0.8195, suggesting the internal consistency is good (0.9 > α ≥ 0.8) [45].

3.2.3 SUS Questionnaire

The overall scores in the questionnaire regarding the usability frequency (1 Question), complexity (6Q), the consistency with previous version (1Q), comfortability (3Q) is 67.5. According to the standard international SUS sore, this result is between “OK” and “Good”. The ICC has been obtained as 0.52933, which is assessed as Fair (0.40 < ICC < 0.59) inter-rater agreement according to Cicchetti’s standard [46]. A 95% confidence interval for ICC for the data in the computer proficiency questionnaires is (0.310, 0.765). Cronbach’s alpha value is 0.9991, suggesting the internal consistency of the responses is excellent (α ≥ 0.9) [45].

3.2.4 Website Use Opinions Questionnaire

Figure 2 summarizes major positive responses in the Website Use Opinions Questionnaire survey. According to the feedback from the study participants, the training website is helpful to improve caregivers’ skills and effectiveness in providing care.

Fig. 2.
figure 2

Summary of website use opinion questionnaire

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3.3 Qualitative Analysis

The focus group discussion was conducted among the study participants. The discussion can be grouped into four topics: website impression, website operation, website satisfaction, and website expectation. The related questions to each topic are listed below in Table 2.

Table 2. Focus group guide
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There are five main themes emerged in the data analysis of focus group discussions: friendly interface, useful contents, task completion evaluation, benefits and concerns of the website, and preferred and disliked features or contents. The summary and representative quotes of each theme are listed in Table 3.

Table 3. Participant quotations and related themes
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4 Conclusion

The web-based self-directed format makes the use of the learning system more flexible and accessible. Based on the usability testing on the web-based SDL system, the majority of the study participants were satisfied with the current website in its interface design, contents, and easy operations. Some minor modifications were suggested on the color and font of the website, as well as the adding more case analyses. The study participants could navigate the website and complete the tasks effectively. They thought this web-based SDL system could benefit dementia caregivers especially in knowledge enrichment and caregiving skill enhancement.

The training courses can help improve the quality of care provided by caregivers and reduce their perceived burden in caregiving. We will conduct a randomized controlled trial next to examine the effect of this web-based SDL system.