Abstract
Caregiving is a growing occupation. The Caregiving in the U.S. 2015 survey indicated that more than 34 million Americans provided unpaid care to an older adult over the course of a year (National Alliance for Caregiving [NAC] & AARP Public Policy Institute, 2015). Although caregiving is not specific to one age group and may be paid or unpaid, the study described in this article focused on those who provide unpaid care for an adult family member. These caregivers are more likely to report health problems, stress, limited time to meet their own needs, health risk behaviors, and symptoms of depression than the general population (Burton, Zdaniuk, Schulz, Jackson, & Hirsch, 2003; NAC, 2009; NAC & AARP Public Policy Institute, 2015).
Evidence suggests that education-based wellness programs can mitigate risks to caregiver health (e.g., Bank, Argüelles, Rubert, Eisdorfer, & Czaja, 2006; Boise, Congleton, & Shannon, 2005). However, those at greatest risk may also face the greatest obstacles to attend such programming. Caregivers report lack of time, inconvenient meeting schedules, lack of respite care, lack of transportation, and physical limitations as barriers to attending face-to-face programming (Bank et al., 2006). Telehealth may offer a solution to some of these barriers.
Telehealth is a growing method of service delivery defined as “the application of evaluative, consultative, preventative, and therapeutic services delivered through telecommunication and information technologies” (American Occupational Therapy Association, 2013, p. S69). Telehealth may reduce travel burden (O’Connell et al., 2014) and improve health outcomes while decreasing health care costs (Kidholm, Dinesen, Dyrvig, Rasmussen, & Yderstraede, 2014). However, it is unknown what types of services are best suited for telehealth delivery methods (Cason, 2014).
Telehealth methods are advancing. It is now possible to deliver a synchronous intervention in a format similar to a face-to-face experience, especially for intervention types that do not require a hands-on component (VSee, 2015). Previous caregiver wellness programs have not used a synchronous delivery format to translate a face-to-face program to a telehealth format. Past programs have used telephones, videophones, the Internet, or custom devices to deliver programs designed specifically for telehealth delivery (Powell, Chiu, & Eysenbach, 2008; Topo, 2009). Education has often been provided in an asynchronous format that removes social aspects of communication, yet recent research has highlighted the need to address social in addition to educational needs of caregivers (Badr, Carmack, & Diefenbach, 2015). The participant experience of current synchronous telehealth methods and of a caregiver wellness program transferred from a face-to-face to a telehealth delivery method has not been examined.
This pilot study, a first step to address this research gap, explored the participant experience of a telehealth-delivered Powerful Tools for Caregivers (PTC) program, a 6-wk education-based wellness program shown to improve self-care and self-efficacy, increase resource use, reduce stress, reduce caregiver burden, and improve caregivers' well-being (Boise et al., 2005; Savundranayagam & Brintnall-Peterson, 2010). This study involved the first telehealth delivery of the traditionally face-to-face program and used a synchronous telehealth delivery method of videoconferencing with the free version of VSee (Sunnyvale, CA) software that is compliant with the Health Insurance Portability and Accountability Act of 1996 (Pub. L. 104–191) and that requires less bandwidth than other similar applications (VSee, 2015).
The program was delivered in six 90-min sessions following the same scripted format as the face-to-face PTC program, with a minor change of small group discussion rather than partner discussion breakouts. Participants received one in-person training session on VSee software use before the program began and were provided a hard-copy VSee user guide, a custom-created document to help participants use the software required to participate in the telehealth PTC program, and a folder containing printed handouts for the PTC class series. Details on how the face-to-face program was translated to telehealth have been described elsewhere (Serwe, 2016). In this study we attempted to answer the question “What is the participant experience of an education-based wellness program delivered using telehealth?”
Method
The Texas Woman’s University and Concordia University Wisconsin institutional review boards approved this research, and all participants provided written informed consent before participation. This article describes the qualitative portion of a mixed-method pilot study of a translation of the PTC program from face-to-face to telehealth delivery using synchronous videoconferencing. We used a phenomenological approach to explore the participant experience of telehealth (Patton, 2015). Participants engaged in a focus group the week after they completed the telehealth-delivered PTC program. They had the option to meet in person or in the format they had used for the telehealth PTC class; all participants chose to meet using the telehealth format in which they could see and hear each other through synchronous videoconferencing.
Participants
Participants comprised a convenience sample obtained through a targeted recruitment process for the telehealth PTC program. The area Aging and Disability Resource Center caregiver specialist recruited participants through posted fliers and word of mouth. All participants were active caregivers, reported a barrier to attending a face-to-face program, and could use a laptop and VSee software after one training session. Exclusion criteria included inability to speak English and residence outside of southeastern Wisconsin. The inclusion criterion for the focus group was participation in the PTC program delivered using telehealth. Table 1 displays participant demographics (names have been changed to preserve anonymity).
Participant Demographics
Note. PTC = Powerful Tools for Caregivers (6 classes total in program).
Data Collection
A researcher not previously involved with the participants conducted the focus group using Morgan’s (1997) approach to engage participants in conversation and thereby gain an understanding of their experience. The researcher had experience with both focus groups and VSee software. She facilitated the discussion using five preplanned prompts. The focus group discussion was audio recorded and transcribed for analysis.
Data Analysis
Three researchers analyzed the focus group transcript using open coding and thematic analysis (Corbin & Strauss, 2008). Two of the researchers (author Hersch and another researcher) had not previously been involved with the participants; the third researcher, the principal investigator (PI; author Serwe), was one of the two class leaders who delivered the telehealth PTC program. Hersch and an additional assisting coder used direct transcript coding methods; the PI used NVivo 11 for Windows (QSR International, Doncaster, Victoria, Australia).
The researchers coded the data independently, then met synchronously in a conference call to triangulate results, discussing and consolidating codes and themes (Patton, 2015). The PI coded the data on the basis of the consolidated codes and themes and circulated codes to the other two coders for one additional asynchronous review. The final codes and themes represent a consensus of the three coders. The final coding was conducted using NVivo 11, and visual representations of the data were generated. Because caregivers typically report lack of time (NAC, 2009; NAC & AARP Public Policy Institute, 2015), to reduce participant burden data analysis did not include member checking of transcribed data.
Results
Two major themes emerged from the focus group. The first theme, “I feel like I am now prepared,” related to the PTC program experience and lessons learned. The second theme, “It was just a good interaction,” related to the telehealth experience. Themes and subthemes are presented in the sections that follow, with participant quotes illustrating discussion content.
Theme 1: “I Feel Like I Am Now Prepared”
The caregivers discussed the PTC experience and lessons learned. Three subthemes emerged: (1) strategies for caregiver self-maintenance, (2) the understanding that caregiving is a normal process, and (3) the value of a group experience.
Strategies for Caregiver Self-Maintenance.
The first subtheme related to strategies for caregiver self-maintenance and directly reflected skills learned in the PTC course: use of action plans, deep breathing for relaxation, positive self-talk, resources, and taking time out for oneself. Jane described use of an action plan and taking time out for herself:
You . . . set goals and everything at work and . . . maybe your total personal life, but . . . for your caregiving, . . . to carve out time for yourself, I hadn’t been doing that. So that was really helpful just to say, “OK, let me write it down,” . . . and then it’s almost like we’ve made a commitment to . . . our other members of the team. . . . When you come back, you want to be able to say, “Yeah,” you know, “I’ve met my goal.”
Participants also discussed gaining self-confidence in their caregiving skills. As Mary described it, “I’m just in the very beginning of caregiving, . . . and I feel like I am now prepared for the next several years.”
Understanding That Caregiving Is a Normal Process.
The second subtheme related to the understanding that caregiving is a normal, stage-progression process and that the role of carer continues indefinitely. Female participants discussed how the role of mother and grandmother involved putting others first and continued. The full group discussed how caregiving would continue over time and how the tendency to put one’s own needs last could become a dangerous habit. Participants discussed the importance of validation of feelings and experiences and revealed the value of patience. Emma described the importance of validation of feelings and experiences as follows: “It was kind of nice seeing . . . the different stages you go through, the guilt, and the depression, and the anger. . . . It’s good to know it’s normal and you’re no different and it’s a huge job.”
Value of a Group Experience.
The third subtheme was the value of a group experience. Participants described and referred frequently to the value of sharing experiences. Joe expressed this feeling clearly: “It felt so good seeing the other people in the group and feeling like you were part of everybody’s life in a way. . . . It was very, very helpful.”
Theme 2: “It Was Just a Good Interaction”
The second major theme was related to the participants’ experiences with telehealth as the delivery method and consisted of three subthemes: (1) benefits of telehealth, (2) challenges of telehealth, and (3) process of learning the technology.
Benefits of Telehealth.
The benefits of telehealth that participants discussed included increased ability to participate and connect with a group, lack of need for respite care, and increased time available for self because no travel was needed to attend the group. The benefit of increased ability to participate and connect with a group in a format that worked well was summarized in Jane’s description of this subtheme:
The stress level is way down because . . . you took an hour and a half. You didn’t take two and a half or, you know, three hours depending on your travel time and trying . . . to find someone to watch . . . your . . . care giveree [recipient].
Challenges of Telehealth.
Participants discussed audio feedback as a challenge of the telehealth format and the need to mute to reduce this feedback. Jane described this challenge:
The one bad thing is . . . feedback that happens . . . every time you don’t mute. . . . I think it is a little more difficult because we are always talking over one another, you know. And we’re muting, and we think we’re talking sometimes. So that makes it a little difficult to have an easy conversation between all of us. But I think we made it work, so I think the advantages, at least in my mind, outweigh the disadvantages.
Process of Learning the Technology.
The final subtheme related to the process of learning the technology. Participants were initially apprehensive about using the technology, then were surprised at the benefit, and finally demonstrated skill and beliefs related to basic mastery of the technology. Emma described this process as follows:
I was really apprehensive about the online kind of thing. It’s not something that I’ve ever done . . . but I just see the advantages of just carving out an hour and a half as opposed to the travel time, you know, and then someone to be here with my husband if I were gone. So that really worked out nicely; I’m surprised.
The participants demonstrated basic mastery of the technology throughout the focus group, even providing education to the focus group moderator on how best to use the VSee application. They reminded the group moderator to mute her microphone when she was not talking and educated her on how to mute. The participants also commented on their mastery of the program. Jane stated, “I didn’t think anything was difficult. Again, I think we all struggled a little bit with the technology as we were learning it, but that’s to be expected.”
There was a consensus on themes among the participants throughout the focus group, with the exception of opinion related to the comparison of face-to-face and telehealth experiences. Joe felt that telehealth was almost the same as face-to-face participation, stating, “I just felt very part of the group . . . I think in the sense that it was nearly next to being face-to-face with people.” Emma disagreed, stating that it was not as good, but acknowledging that telehealth made it possible for her to participate:
I think I would have enjoyed being with everyone, and I really almost always learn better by actually doing and seeing—you know, sharing, that sort of thing. And we’ve done some of that here, but I like the face-to-face [interaction]. I guess that would be my first choice, but again, I might not have been able to, you know, participate.
Discussion
The first theme, “I feel like I am now prepared,” reflected content learned in the PTC course. Participants talked about gaining self-confidence in their caregiving skills. Quasi-experimental studies of the face-to-face program have found an increase in caregiver self-confidence related to an increase in self-efficacy after participation (Boise et al., 2005; Savundranayagam & Brintnall-Peterson, 2010). Participants in the focus group also discussed strategies for caregiver self-maintenance, including use of action plans, deep breathing, positive self-talk, resources such as the Caregiver Helpbook (PTC, 2013), and taking time out for oneself; these are strategies taught in the PTC course. Quasi-experimental studies of the face-to-face program have also found that caregivers use action plans, engage in positive self-talk, use relaxation techniques such as deep breathing, use resources, and increase self-care behaviors such as taking time out for self after PTC participation (Boise et al., 2005). Participant reflections on the course content in the discussion group demonstrated that the telehealth delivery method was an effective means of educating them.
The second theme related to the telehealth experience, “It was just a good interaction,” indicated that participants found the delivery method beneficial; in addition, the delivery method was effective for building relationships. Participants differed in their opinions of the similarity of the telehealth experience to a face-to-face experience; however, all participants recognized that the telehealth format made it possible for them to participate. This finding is consistent with past research indicating that although people differ in their preference for telehealth versus face-to-face interactions, overall perceptions of telehealth are typically positive (Steel, Cox, & Garry, 2011). The overall positive themes related to telehealth participation suggest that although this format is perhaps not the same as face-to-face methods, it provided a positive experience and enabled participation.
Limitations and Future Directions
In this study we used a researcher not previously involved with the participants to facilitate the focus group and three coders to increase the trustworthiness of the data. However, the PI had prior experience with the participants as a coleader of the telehealth PTC program; as a result, she had established rapport with participants. Furthermore, the PTC leaders had previous experience with caregiving, and the goal was for them to be participant facilitators, not instructors. This emic perspective may have influenced the PI’s coding.
The small number (N = 4) and lack of diversity among participants limit generalizability of the findings. This research provides rich, descriptive information from the perspectives of caregivers who participated in the PTC program delivered via telehealth. Future research should examine the telehealth-delivered program for additional caregiver groups until a saturation of themes is found; such research should also examine the experience of participants from a variety of backgrounds.
Implications for Occupational Therapy Practice
The results of this study have the following implications for occupational therapy practice:
Telehealth in a synchronous delivery format can facilitate learning and shared experience and enable people to participate who may not otherwise have the opportunity.
Caregivers in this study had a positive telehealth experience in a program transferred from the face-to-face environment to an online synchronous delivery method. Occupational therapy practitioners can identify opportunities to deliver traditionally face-to-face services via telehealth. Future research should examine the effectiveness of such practices.
Telehealth provides options for people who have limited access to face-to-face programming. Clients who prefer face-to-face interactions may benefit from telehealth-delivered programs when face-to-face program attendance is not possible.
Conclusion
This study elucidated the experience of caregivers in a telehealth-delivered wellness program. The participants reflected on content learned in the PTC program, indicating that the method was effective for learning. They referred frequently to the value of a shared experience, indicating that the telehealth delivery method was effective for building relationships. In addition, participants’ experience related to the telehealth delivery method was positive overall. The participant experiences captured in this study suggest that translating the PTC program to a telehealth format is feasible.
Footnotes
Acknowledgments
This article evolved from the dissertation work of Katrina M. Serwe in the Texas Woman’s University PhD in Occupational Therapy program. We are grateful to Powerful Tools for Caregivers (PTC) for permission to use the PTC program; Valeree Lecey, who co-led the PTC program; Wendy Goldbach, who facilitated the focus group; Ranelle Nissen, who coded qualitative focus group data; and our 4 participants, for sharing their time and insights. We are also grateful for funding support from a Concordia University Wisconsin intramural research grant.