Abstract
The population of individuals living with dementia and their caregivers and the need to provide caregiver training will increase in the next several decades. In-person caregiver educational programs are delimited by logistical and resource boundaries that could be overcome with online programs. The purpose of this qualitative descriptive study was to explore the acceptability and ways to improve the content and delivery of an online 7-week psychoeducational pilot program—Tele-Savvy. Thirty-six caregivers who completed the pilot were interviewed about their experience with Tele-Savvy and their suggestions for its improvement. Conventional content analysis allowed for the identification of three themes: barriers and facilitators to establishing rapport with participants and instructors, content enrichment and diversification, and structural refinement. These lessons learned directly from the caregivers provide evidence to guide the refinement of analogous online interventions and highlight the need for their wider availability.
Introduction
The number of persons living with Alzheimer’s disease in the United States is expected to increase from the current 5.4 million to 13.8 million by 2050. In 2015, over 15 million Americans served as unpaid caregivers for persons living with dementia (Alzheimer’s Association, 2016). Unpaid caregivers will remain the largest source of long-term care in the United States, reaching approximately 40 million caregivers by 2050 (U.S. Department of Health and Human Services, 2003). For persons living with dementia, community, compared with institutional residence, is associated with fewer depressive symptoms and better functioning in the activities of daily living, social connectedness, cognitive performance, and quality of life (Nikmat, Al-Mashoor, & Hashim, 2015; Nikmat, Hawthorne, & Al-Mashoor, 2015). Caregiving is linked not only to emotional rewards, relationship gains, and personal and spiritual growth (Lloyd, Patterson, & Muers, 2016; Roth, Fredman, & Haley, 2015) but also to negative outcomes for caregivers’ physical health (Fonareva & Oken, 2014) and psychological well-being (Sörensen & Conwell, 2011).
For caregivers, educational programs enhance knowledge, confidence, ability to manage caregiving situation, and tolerance of care recipients’ memory problems (Hepburn, Lewis, Sherman, & Tornatore, 2003; Hepburn, Lewis, Tornatore, Sherman, & Bremer, 2007; Kally et al., 2014); improve caregiving mastery (Judge, Yarry, Looman, & Bass, 2013); enhance self-efficacy (Gitlin, Corcoran, Winter, Boyce, & Hauck, 2001); increase use of adaptive coping (Gallagher-Thompson, Gray, Dupart, Jimenez, & Thompson, 2008); increase leisure activities’ frequency (Losada et al., 2015); improve quality of life (Belle et al., 2006; Gaugler, Reese, & Mittelman, 2015) and health-related quality of life (Knapp et al., 2013); improve sleep (Akkerman & Ostwald, 2004); reduce stress (Aboulafia-Brakha, Sucheki, Gouveia-Paulino, Nitrini, & Ptak, 2014; Gallagher-Thompson et al., 2008; Llanque et al., 2015); decrease depressive symptoms (Belle et al., 2006; Gaugler et al., 2015; Mittelman, Roth, Coon, & Haley, 2004); lower burden (Gitlin, Hauck, Dennis, & Winter, 2005; Hepburn et al., 2003); decrease emotional health strain, dyadic relationship strain, and role captivity (Judge et al., 2013); reduce distress associated with care recipients’ behavioral and psychological symptoms of dementia (Gitlin et al., 2001); ameliorate anxiety (Akkerman & Ostwald, 2004; Losada et al., 2015); and reduce dysfunctional thoughts (Losada et al., 2015). For persons living with dementia, these programs are associated with delayed institutionalization (Mittelman, Ferris, Shulman, Steinberg, & Levin, 1996); reduction in the frequency of neuropsychiatric symptoms of dementia (Aboulafia-Brakha et al., 2014; Hébert et al., 2003); and less decline in instrumental activities of daily living and in self-care (Gitlin et al., 2001).
The reach of in-person programs is limited. Distance, transportation, and the need for a substitute caregiver may prevent participation (Marziali & Donahue, 2006; Morgan et al., 2015). That caregivers for persons living with dementia spend more hours on caregiving tasks and are more involved in assisting their persons compared with caregivers for persons not affected by dementia adds further difficulties (Ory, Hoffman, Yee, Tennstedt, & Schulz, 1999). These challenges face rural caregivers for whom commuting may be an obstacle (O’Connell et al., 2014) and caregivers who work outside of home or have additional scheduling restrictions (Alzheimer’s Association, 2016). Online education availability may be critical for caregivers who are working outside of home, for instance, children or spouses of persons with early-onset dementias who are likely to be younger (O’Connell et al., 2014).
As the Internet becomes a more common and available platform for caregivers’ education and support, the proven and effective methods and techniques of in-person programs will need to be transformed to maintain their effectiveness and accommodate to the particularities of the online medium. In addition, younger caregivers are most interested in receiving support via computer (Colantonio, Cohen, & Pon, 2001). Online programming may not replace in-person communication (Gagnon, Duplante, Fortin, & Landry, 2006), but the videoconferencing format allowing participants to synchronously see and hear each other and speak approximates in-person communication and is accepted by caregivers (O’Connell et al., 2014). These factors and the low cost of online interventions (Boots, de Vugt, van Knippenberg, Kempen, & Verhey, 2014) are likely to make them feasible.
While Americans over the age of 65 years are the least likely to be connected to Internet (58% of adults over the age of 65 years used Internet in 2015 (Statista, 2015), the percentage of Internet users of this age has been growing: 14% of users in 2000 increased to 64% in 2016. This is the most rapid growth rate in becoming an Internet user among all strata over the age of 18 years (Pew Research Center, 2017). Moreover, bracketing all Americans into one age group (over 65 years) obscures this stratum’s heterogeneity. Individuals are likely to differ substantially in their need to search for online health information, including dementia-related materials. Among adult users, 72% search the web for health information (Pew Research Center, 2013), and among caregivers of persons living with dementia, approximately 59% search the web for health information (Kim, 2015). Thus, benefits associated with online interventions justify the development of online programs that serve older adults despite this group’s suboptimal Internet connectivity.
This article draws on the experiences of informal caregivers of persons living with dementia. Caregivers completed a fully online psychoeducational program, Tele-Savvy (Griffiths, Whitney, Kovaleva, & Hepburn, 2016). . This article reports on the “lessons learned” through a qualitative formative evaluation of caregivers’ experiences with Tele-Savvy and acceptability of Tele-Savvy for caregivers. The basic question of the evaluation was, “What was your experience of Tele-Savvy and how might it be improved?” The article details the ways in which caregivers interacted with Tele-Savvy, elucidates their perspectives on the online delivery, and identifies ways in which caregivers suggested the program could be improved. The study was approved by the Institutional Review Board at Emory University.
Method
Intervention
Tele-Savvy, an online adaptation of the evidence-based in-person psychoeducational Savvy Caregiver Program (Hepburn et al., 2003; Hepburn et al., 2007) aims to increase caregivers’ knowledge, skills, and caregiving self-efficacy and improve their outlook on caregiving (Griffiths et al., 2016). . Tele-Savvy is based on social cognitive (Bandura, 1977) and stress and coping theories (Lazarus & Folkman, 1984). Tele-Savvy reformatted the in-person Savvy Caregiver Program’s curriculum into a 7-week program delivered synchronously and asynchronously to groups of four to eight caregivers. The synchronous portion included weekly scheduled videoconferences (60-80 min) that served as an online classroom in which instructors led lectures and discussions and provided a venue for caregivers’ interactions and sharing of their experiences.
The majority of Tele-Savvy is asynchronous. Daily, caregivers access online 6- to 15-min prerecorded videos, each focused on one main learning objective. The lessons’ didactic messages are delivered through expert presentations that are usually augmented by vignettes enacted by amateur actors playing a “caregiving family” in various dementia-stage-specific caregiving situations and using caregiving strategies in familiar settings. Caregivers can watch the lessons whenever and as often as they wish.
A 200+ page Tele-Savvy Caregiver Manual served as a reference, and “non-mandatory homework” was assigned, which, following principles of social cognitive theory (Bandura, 1986), was meant to enhance caregivers’ self-efficacy by asking them to apply what they were learning and to experience success in doing so. Tele-Savvy’s schematic is provided in Figure 1. The use of online information available to caregivers outside of Tele-Savvy has not been a dedicated portion of Tele-Savvy; however, the manual contained a list of resources, including online resources (e.g., Alzheimer’s Association and Alzheimer’s Disease Education Referral Center’s websites).
Diagram of the Tele-Savvy course structure.
Sample
Caregivers were recruited through a variety of means, including ClinicalTrials.gov, TrialMatch, online and hard copy advertisements, referrals from health care professionals, and word of mouth. English-speaking unpaid family caregivers of persons living with dementia (excluding dementia due to stroke or Parkinson’s disease), over the age of 18 years, who had access to a computer or another mobile device and had internet access, were eligible. Caregivers’ physical abilities (e.g., visual acuity, physical ability to use a device) were not stipulated in inclusion criteria under assumption that those with limited physical abilities to participate in an online program would not consider such enrollment. Research assistants established eligibility of potential participants via telephone, obtained consent, and trained participants to join videoconferences and view lesson videos. Written illustrated instructions on joining videoconferences and viewing videos were provided.
Recruitment lasted approximately 8 months (November 2014-June 2015). Tele-Savvy commenced in December 2014; the last group concluded in July 2015. Recruitment proceeded on a rolling basis; as soon as a group of up to eight caregivers formed for whom participation in a videoconference at a designated time was convenient, this group commenced. Groups were not organized according to any caregivers’ characteristics (e.g., age, relationship to the care recipient, etc.). Monthly recruitment rate was not estimated, but since the recruitment period nearly coincided with the study period when groups were run, no lag in program initiation was experienced (recruitment rate was adequate to start new groups without delays).
Forty-two caregivers were recruited; 36 completed Tele-Savvy (Table 1). Six caregivers discontinued participation because of time conflicts with work responsibilities or the care recipient’s death. Of those who discontinued, five participated in at least one videoconference; none discontinued for technical reasons. Completers lived in 13 states: Georgia, Florida, South Carolina, Mississippi, Virginia, Maine, Delaware, Pennsylvania, New Jersey, Minnesota, California, Oregon, and Arizona.
Sociodemographic and Caregiver Characteristics of the Sample by Completion Status (N = 42).
Note. CG = caregiver; PLWD = person living with dementia.
One participant was Afro-Caribbean.
Procedure
Evaluative information came predominantly from semi-structured interviews administered by research assistants via telephone and/or videoconference. These 45- to 90-min interviews sought caregivers’ assessments of specific Tele-Savvy components (videoconferences, daily videos, and the caregiver manual and workbook); of the program’s strengths and weaknesses; and of the influence of Tele-Savvy on their caregiving, their own well-being, and their care recipients’ well-being. These interviews occurred during a period that ranged from immediately after the last videoconference to approximately 1 month afterward. Interviews were not audiotaped. The research assistants maintained transcript notes and typed verbatim records of comments. Additional evaluative information was drawn from an online survey in which participants ranked and could comment on their experience with Tele-Savvy and from unprompted email and chat communications between caregivers and the research team. Sample interview and survey questions are provided in Table 2.
Examples of the Online Survey and Telephone/Teleconference Interview Questions.
Analysis
Conventional content analysis (Elo & Kyngäs, 2008; Hsieh & Shannon, 2005) was used to analyze the data. Qualitative description was the chosen design because its purpose, description of phenomena using everyday terms of those who participate in these events, fits the purpose of this study. Qualitative descriptive design fits studies where researchers pose questions that may be formulated as “What are the concerns of people about an event? What are people’s responses (e.g., thoughts, feelings, attitudes) toward an event?” (Sandelowski, 2000, p. 337). Answers to these questions are relevant for practitioners (Sandelowski, 2000), and these questions are analogous to this study’s research question. After all interviews were completed, a de-identified interview transcript for each person was organized with all other qualitative data pertinent to that person, including their online evaluation comments and miscellaneous communications. Initially, each author read the entire packet and then made a reflexive statement to summarize her/his initial reactions to the data. Reflexive statements from the researchers acknowledged their involvement in data analysis and unpacked preexisting knowledge or opinions that may have influenced interpretation (Barry, Britten, Barber, Bradley, & Stevenson, 1999; Malterud, 2001). The authors used the process of constant comparison (Miles & Huberman, 1994) to identify themes and subthemes (Ryan & Bernard, 2003). Constant comparison presumes repeated review of all data to “discover patterns and to determine the presence, variation, or absence of patterns” (Sandelowski, Holditch Davis, & Harris, 1989, p. 82). Researchers were guided by a question “How is one expression different from or similar to the other?” (Ryan & Bernard, 2003, p. 91) to proceed with constant comparison of data units between each other. A theme was formulated when a concept could provide a distinct answer to a question “What is this expression an example of?” Similar answers to this question were grouped under one theme. Reoccurring ideas provided grounds for theme identification (Ryan & Bernard, 2003). Whole packets of combined qualitative data pertaining to each participant were compared with each other to answer the questions “How is this text different from the preceding text?” and “What kinds of things are mentioned in both?” (Ryan & Bernard, 2003, p. 91). Relationships between identified themes were established, and the final list of themes and subthemes was reorganized and reduced to three main themes that answered the research question (Ryan & Bernard, 2003). Validity measures included a member check (Sandelowski, 1993) with two participants and a negative case analysis (Patton, 1999).
Results
Thirty-six caregivers completed postprogram interviews. All but one provided positive endorsements overall:
For me it was a lifesaver . . . seeing all those people from all around the country . . . they are not really handling it any better than I . . . I don’t feel so alone in spirit. (Caucasian wife, age 69)
Comments from a rural caregiver (Caucasian wife, age 76), “I live forty of miles from everywhere; it was wonderful,” and an urban caregiver (African American wife, age 73), “It was good to be able to do it online rather than trying to get in the car, considering the traffic situation here,” confirmed that the online format promoted access for those with travel challenges. Three principal “lessons learned” themes were identified: (a) barriers and facilitators to establishing rapport with participants and instructors; (b) content enrichment and diversification; and (c) structural refinement.
Barriers and Facilitators to Establishing Rapport With Participants and Instructors
Connectedness
Prior to the launch of Tele-Savvy, expert commentators raised a concern that online participants may not establish rapport in a way afforded with in-person interactions in the parent Savvy Caregiver Program (Griffiths et al., 2016). . But despite the facts that Tele-Savvy was fully online and that caregivers never met each other in-person, nearly all participants endorsed the sense of connectedness to each other and to instructors. We did not define what feeling connected meant to participants, but it appeared that participants understood it as the sense of rapport and satisfactory communication where topics that are pertinent to their situations are discussed and caregivers are being listened to. When asked whether they felt connected to others, none mentioned that this was a virtual connection. Several mentioned learning from others: “It was great being able to sit in the comfort of my home and interact with everyone. I felt a connection with every person and believe that I learned something from each participant” (Caucasian daughter, age 66).
Others discovered distance education as something new for themselves that they enjoyed: “At first I was . . . this is not gonna work; I’m 60 years old. It really worked, I loved going to school online, I thought I was in a real class—I’m talking a real classroom” (Caucasian wife, age 60). Still, a few younger caregivers and those who were employed outside of home (Caucasian son, age 53; African American niece, age 47) indicated a preference for a classroom experience. A Caucasian daughter (age 55) whose experience and feedback represented a negative case indicated, “It would have been better to absorb the content in a group setting, person to person . . . very difficult to have a personal connection with a computer screen.”
All caregivers stated that they felt listened to and could get answers for their questions:
One of the very helpful parts of the chats was to have positive feedback from the teachers. I don’t think caregivers get very many “good job on that” . . . comments. It is easy to know when we mess up . . . hard to know that we did it well. (Caucasian wife, age 57)
Several caregivers expressed willingness to remain in contact with others after Tele-Savvy conclusion. Facilitators asked for participants’ permission to have their contact information shared and, when such permission was granted, provided it to other caregivers.
Participants identified three barriers to connectedness.
Distracted participants
An African American niece (age 47) commented: “It is a lot harder to connect with people, a lot easier not to stay focused on the topic, you can get distracted, play games on your phone.” This caregiver was in a group with others who were relatively younger (ages 53, 55, 61). A Caucasian daughter (age 49) noted, “People that did not appear to be paying attention and you could see them doing other things. That was a little distracting for me.”
Different caregiving situations
Some participants ascribed not feeling connected to diversity of caregiving situations, including care recipients’ different dementia stages. A Caucasian husband (age 71) advised that future programs be more precisely targeted to dementia stages: “Much of the material was very basic for me, I would like more information on later stages because that’s where it really gets tough.” A Caucasian daughter-in-law (age 49) cited her age and caregiving relationship as a reason for not feeling very connected to others: “[I] may be younger, more dealing with mother-in-law and children; other people [were] older, a little disconnection in that way.”
Technical difficulties
Problems during videoconferences (e.g., poor Internet connection, slow sound and video transmission, and insufficient instructions on joining videoconferences) affected connectedness: “When things went well [with technology], I definitely felt connected” (Caucasian wife, age 57). While most endorsed the convenience of the online format, many recommended technical improvements, including better instructions for joining and participating in videoconferences and viewing videos. Although instructions were provided, many caregivers recommended more practice and detailed written and illustrated instructions for video viewing (written instructions were not initially provided for video viewing). Some caregivers noted that others struggled to follow some directions (e.g., not muting their microphone when others were speaking to prevent interference with background noise) and needed to be better aligned relative to their webcam and sit in a position with good lighting.
Content Enrichment and Diversification
Stage-specific information
Many caregivers expressed the wish to receive information on stage-specific caregiving: “If there were more strategies for early stages and handling awkward situations in early stages” (Caucasian wife, age 75); “I was the only early stager. . . I am not experiencing what other people are experiencing. Put in more [information for] early stages” (Caucasian wife, age 60).
Caregivers with care recipients in very late dementia stages were particularly in need of strategies because they found very few ways to engage their persons. Many techniques and information covered in the course was already familiar to them: “It’s much better for those starting off . . . content gives a good picture of the first half of the journey. It does not relate at all to someone caring for a late stage dementia” (Caucasian husband, age 72).
On the contrary, a Caucasian daughter (age 55) who represented a negative case found the content irrelevant: “Too much! For me and my situation, it’s too hard. Make sure their situation is the right situation—the content wasn’t applicable to me yet.” But a member check participant whose husband had a very advanced stage dementia indicated that she found the overall information helpful.
Caregiving strategies
The dementia family vignettes were generally well received: “To me the videos are key to the whole class” (member check participant). “Seeing the behavior depicted by the actors was a great way to better understand and grasp the different stages and how to adjust level of involvement” (Caucasian daughter, age 66). Still, several caregivers expressed the wish that the vignettes would portray more complex situations:
The Jim and Becky [names of the fictional family] episodes were easy to identify with in most situations; however, Jim was an exceptionally agreeable individual and my husband still has an opinion of his own, which isn’t always the same as mine. I would have liked to see more tips on how to deal with resistance. (Caucasian wife, age 67)
Participants likewise wanted more videos with additional ways to promote contented involvement—one of the key concepts taught in Tele-Savvy that emphasizes person’s maximum engagement in activities that he or she enjoys. Caregivers likewise expressed willingness to view videos focusing on the provision of assistance with activities of daily living throughout dementia stages.
One African American niece (age 47) and one Caucasian daughter (age 61) noted lack of diversity in videos: only Caucasian actors and only a few non-Caucasian health care professionals appeared in them. The Caucasian daughter (age 61) suggested the vignettes did not portray the “messiness of life”—times when a care recipient may not follow caregiver’s guidance, multiple family members involved in caregiving, and families with limited resources:
I would have liked to see a daughter or son single caregiver with just a parent, try to make it more identifiable and inclusive . . . One [caregiver] with many people meddling in the caretaking, I wish it had been not just Caucasian race, it’s not real life, nice suburban setting, my life doesn’t look like that with my mother.
Structural Refinement
Nearly all interviews and evaluative comments included messages asking for “more.” Generally, participants wished that Tele-Savvy would continue for longer than 7 weeks and provide more in-depth coverage of various topics: “Wonderful class, we need more . . . You have this group and they bond over 6-7 weeks, there is so much more to learn out there” (Caucasian wife, age 60). Many stated that they had become used to having an online group: “It was something to look forward to, to help you get through the week” (Caucasian wife, age 60). Some were willing to have a longer program because they wanted to continue getting instructors’ feedback: “Make it longer, make it longer, make it longer. I cannot say it quite enough . . . Just a few things these professors [said], how they would listen, it was just a gift” (Caucasian daughter-in-law, age 49). Despite apparent novelty of videoconferences (no one indicated their experience with videoconferencing), they were valued: “I just feel like [we had an] amazing time—we could have gone for 3 hours” (Caucasian daughter-in-law, age 49).
Many caregivers said they wanted to get more out of each videoconference, suggesting longer videoconferences, potentially with a designated time for every caregiver and extra time for those who were willing to remain on the call: “[The] group got closer towards the end; people shared some powerful things; we did not have the time to process those powerful things” (Caucasian daughter, age 61). This caregiver also indicated willingness to learn not only evidence-based information but also coping strategies that others employed: “More interaction and discussion among the participants to balance out the information that is clinically-based, integrate both perspectives to just get different views on how other people cope.”
One African American husband (age 66) noted that lacking individualized consultation with instructors was the weakest part of Tele-Savvy: “A one-on-one session should be offered to give caregivers an opportunity to develop a personal caregiver’s plan.”
Caregivers could not access the videos after Tele-Savvy conclusion; however, many stated that they would be willing to rewatch videos, share them with family members, and rewatch them when their care recipient is in a later dementia stage: “Your care recipient is not going through everything when it is discussed” (Caucasian husband, age 72). Participants also asked for extra manuals to share with their family members and hard copies of PowerPoint slides presented during videoconferences.
Participants suggested that the manual be laid out more clearly (e.g., include a table of contents and a glossary) and be more precisely coordinated with the videos, videoconference “lectures,” and “homework” assignments. For many who attempted to complete all assignments, the lack of clear coordination was frustrating: “It skipped around all over the manual . . . it was a little confusing, the last thing you need is to be confused” (Caucasian wife, age 69).
Negative Case Analysis
The reason why one participant (Caucasian daughter, age 55) constituted a negative case was because while others had both positive and negative feedback, this participant found the content irrelevant and did not perceive gaining anything from videoconferences: “I don’t think I ever was clear on what the purpose of the weekly calls was because I never really walked away from the calls with much practical advice on what to do next.” She did not find videoconferences engaging or facilitating for each caregiver to have equal amounts of time to speak. She commented that similar online programs may not fit older caregivers:
I would recommend it to people who are tech savvy, but I wouldn’t recommend it to someone like my mother or older adults who do not know how to use technology and like the traditional way of interfacing with people.
This opinion was shared by a Caucasian son (age 53) and an African American husband (age 66) who expressed apprehension about suitability of the online program for older caregivers. No other participants belonging to this age demographic expressed concerns regarding appropriateness of the technology.
Discussion
This study aimed to explore caregivers’ experiences with Tele-Savvy, a synchronous/asynchronous online psychoeducational program that replicated, virtually, an evidence-based in-person program, the Savvy Caregiver (Hepburn et al., 2003; Hepburn et al., 2007). This study adds to the growing body of literature on online interventions for caregivers of persons living with dementia (Austrom et al., 2015; Beauchamp, Irvine, Seeley, & Johnson, 2005; Blom, Zarit, Groot Zwaaftink, Cuijpers, & Pot, 2015; Chiu et al., 2009; Cristancho-Lacroix et al., 2015; Dowling et al., 2014; Gaugler, Reese, & Tanler, 2016; Hayden, Glynn, Hahn, Randall, & Randolph, 2012; Kajiyama et al., 2013; Kwok et al., 2014; Lai et al., 2013; Marziali, Damianakis, & Donahue, 2006; Marziali & Donahue, 2006; O’Connell et al., 2014); rural caregivers of older adults (Van Ast & Larson, 2007); caregivers of persons living with functional or cognitive impairment (Ducharme, Dubé, Lévesque, Saulnier, & Giroux, 2011); stroke survivors and their caregivers (Taylor, Stone, & Huijbregts, 2012); and caregivers of persons living with traumatic brain injury (Sander, Clark, Atchison, & Rueda, 2009). Lessons learned in Tele-Savvy are summarized below and compared with findings in analogous interventions.
Tele-Savvy demonstrated that distance training is acceptable and feasible for caregivers. Mirroring similar programs, Tele-Savvy participants, not all of whom lived in rural areas, appreciated the convenience of distance participation (Austrom et al., 2015; Beauchamp et al., 2005; Dowling et al., 2014; Ducharme et al., 2011; Hayden et al., 2012; Lai et al., 2013; Taylor et al., 2012). Tele-Savvy participants did not have to travel to join videoconferences (O’Connell et al., 2014; Sander et al., 2009); nor was equipment installation (Marziali & Donahue, 2006) or in-person assistance required (Hayden et al., 2012; Taylor et al., 2012). While a few caregivers expressed reservations about Tele-Savvy’s fit for older caregivers who may be less familiar with technology, the facts that the majority did not voice such apprehension and that no one discontinued due to technical difficulties supports Tele-Savvy’s appropriateness to caregivers of wide age range. Similar to another study (Dowling et al., 2014), most Tele-Savvy participants indicated preference for an online intervention.
Tele-Savvy reinforces the principles that, in distance programming for caregivers, form should follow function and one size does not fit all, supporting the importance of tailored interventions (Gaugler et al., 2015). Tele-Savvy is a circumscribed curriculum-guided psychoeducational program with educational objectives; it constitutes a “course” in the newly acquired caregiving role. Another study (Kajiyama et al., 2013) also included video clips with actors demonstrating use of caregiving strategies and opportunities to apply principles taught, in line with the recommendation to actively engage caregivers in interventions (Parker, Mills, & Abbey, 2008).
Other successful online programs with other objectives have used different formats. Thus, an expert-led videoconferenced support group for spousal caregivers of persons with atypical and early-onset dementias held monthly videoconferences with a flexible agenda guided by participants’ immediate needs (O’Connell et al., 2014). Caring for Others, a website with a videoconferencing feature for caregivers of persons living with neurodegenerative disease aims to educate caregivers, develop their problem-solving skills, and provide psychosocial support (Marziali & Donahue, 2006). Structured according to care recipients’ illness (Alzheimer’s disease, Parkinson’s disease, or stroke-related dementia), the program is therapist-led in its first 10 sessions and caregiver-led over its last 12 sessions (Marziali & Donahue, 2006). Several other programs also use a website as the “anchor” of intervention activities (Chiu et al., 2009; Cristancho-Lacroix et al., 2015; Hayden et al., 2012). Care to Plan, an online platform for caregivers of persons living with dementia, serves as a precise guide to provide caregivers with the most applicable resources from a wide variety of programs (Gaugler et al., 2015).
Despite differences in objectives, delivery modes, and strategies, online programs have demonstrated benefit for caregivers. Tele-Savvy participants experienced significant decreases in caregiver burden and depressive symptoms; the caregiver-reported number of behavioral and psychological symptoms of dementia decreased significantly; and caregiver competence increased significantly (Griffiths et al., 2016). . Other programs’ participants experienced significant reduction of stress (Beauchamp et al., 2005; Kajiyama et al., 2013; Marziali & Donahue, 2006); anxiety, depressive symptoms (Beauchamp et al., 2005; Blom et al., 2015), and caregiver burden (Chiu et al., 2009); decreased frequency of care recipients’ behavioral and psychological symptoms of dementia and reduced distress associated with these symptoms (Kwok et al., 2014). Caregivers also attained improvement in physical health (Austrom et al., 2015), self-efficacy, ability to plan for future needs of care recipients, knowledge of services, use of problem solving and reframing coping (Ducharme et al., 2011), help-seeking intention, and perceptions of positive aspects of caregiving (Beauchamp et al., 2005). In Tele-Savvy and elsewhere (Cristancho-Lacroix et al., 2015; Lai et al., 2013), participants reported gain of knowledge and skills, including handling emotional and behavioral problems (Sander et al., 2009).
Tele-Savvy participants’ affirmation of connectedness adds to similar findings elsewhere. In communication technology, “connectedness” means immediacy with which connection is occurring and is a prerequisite for “a successful and effective collaboration experience” (Grant & Meadows, 2010, p. 331). Connectedness is synonymous with “group cohesion” (Taylor et al., 2012, p. 3)—a term used in the context of peer support, involvement, information sharing, motivating one another, and comparing one’s experience to that of group members (Yalom, 1995). In the literature on videoconferenced interventions for caregivers, connectedness is not defined precisely from subjects’ viewpoints, but connectedness implies how close or distant participants felt to other participants and/or facilitators and their satisfaction with the depth and breadth of topics discussed, including sharing practical information and empathic understanding of difficulties in caregiving (Cristancho-Lacroix et al., 2015; Marziali et al., 2006; Marziali & Donahue, 2006; O’Connell et al., 2014; Taylor et al., 2012; Van Ast & Larson, 2007). Connectedness is discussed in multiple studies, likely reflecting a concern that medium change may undermine participants’ ability to relate to and learn from others. Connecting is associated with emotional processing, acquiring essential information, and witnessing other caregivers’ loss and grief following the death of their person (O’Connell et al., 2014; Taylor et al., 2012). Findings in Tele-Savvy echo those in analogous studies that reported that participants form relationships and provide emotional support and practical guidance to one another (Ducharme et al., 2011; Marziali et al., 2006; Marziali & Donahue, 2006; Sander et al., 2009; Taylor et al., 2012) and express interest in extra-group communication (O’Connell et al., 2014).
The findings of high-quality relationships, however, are not universal. For several Tele-Savvy participants a sense of connection did not occur, which mirrors experience of some participants elsewhere (O’Connell et al., 2014) where “subtleties of communication” were lost in videoconferencing (Taylor et al., 2012, p. 2). For some Tele-Savvy participants, the group’s heterogeneity dampened connectedness, mirroring findings in a study where caregivers had difficulty relating to others because their care recipient was not as ill as those of other caregivers (Marziali et al., 2006). These results contrast with more positive reports of connectedness from a videoconferenced support group composed only of spousal caregivers of persons living with atypical and early-onset dementias (O’Connell et al., 2014), a selection criterion established to maximize universality, an essential factor in group psychotherapy (Yalom, 2005). Similar to one Tele-Savvy participant’s comment about lacking individualized time for consultation with experts, other studies reported participants’ willingness to receive personalized support (Cristancho-Lacroix et al., 2015) or the fact that videoconferencing prevented opportunity for private communication (Taylor et al., 2012).
Multiple suggestions were made for improving Tele-Savvy’s structural elements, echoing reports of similar technical concerns in other studies (O’Connell et al., 2014). More detailed instructions for participants to access and use the online platform can be readily provided, including instructions on “cyber-courtesy.”
Future Development
Produced, as they were, through pilot funding, the videos do not reflect the great heterogeneity of the dementia caregiving experience or of the clinical specialists who work with them. They do not reflect the range of caregiving challenges or portray times when well thought through strategies simply do not work. Greater diversity in representing caregiving situations and in providing expert advice can be incorporated into a next generation of Tele-Savvy. The next version will include vignettes and discussions of situations where events do not unfold according to the best-case scenario (e.g., care recipient agrees with the caregiver). Scenes where care recipients’ behavior may not change will be portrayed.
It would be feasible to extend videoconferences up to 2 hr each. Caregivers’ input on videoconferences’ length may be sought in the beginning of the program as was done in another study (O’Connell et al., 2014). Alternatively, caregivers may leave videoconferences after the set 75 min and the remaining caregivers may continue the discussion in a less structured manner, similar to the description in another study (O’Connell et al., 2014). Likewise, it is possible to extend Tele-Savvy duration by adding one or several weekly sessions, especially if caregivers may express a wish to cover any topics that may not have been covered in the 7-week course. As reported elsewhere (Marziali & Donahue, 2006), participants’ feedback may be solicited on whether anyone may want to assume a facilitator role to continue weekly sessions after Tele-Savvy conclusion.
Currently, Tele-Savvy is being tested in a randomized multisite trial with an expected enrollment of over 200 caregivers. In accordance with Tele-Savvy participants’ recommendations, we have revised the daily video lessons to incorporate a greater complexity of caregiving situations. The videos now reflect a wider diversity of caregiving families’ backgrounds and are presented by a multidisciplinary faculty. The program provides more detailed instructions for participants to access and use the online platform; instructions on “cyber-courtesy” are provided. Material of the video lessons, videoconference lectures, homework assignments, and the caregiver manual is better aligned.
Limitations
This study had several limitations. The sample was likely skewed. It included only individuals with internet connectivity, most of whom were already internet users, and excluded caregivers with poor or no internet access or who were not computer and internet users. Similarly, caregivers with visual acuity or fine motor skills impairment or similar health concerns would not have been able to participate, which limits the reach of Tele-Savvy. It is also possible that social desirability has entered into caregivers’ evaluative comments, preventing their expression of negative opinions when they were interviewed, as some admitted that they were grateful to participate in a free program. Lacking comparison condition prevents a conclusion about the program’ relative effects. Given the fraught nature of caregiving, perhaps any sustained contact would have been similarly appreciated.
Conclusion
The overall lesson learned is that programs like Tele-Savvy do address real caregiver needs and can, in their next generation, be made even more effective. The study demonstrated benefits for caregivers who participated in Tele-Savvy. The online delivery is convenient; it provides virtual simulation of the experience of the parent in-person Savvy Caregiver Program; and, in the main, it promotes the kind of connectedness between participants seen in the in-person format. Tele-Savvy constitutes one element in what should be a continuum of programs for caregivers. Participants’ calls for more content and information, for stage-based programs, and for one-on-one contact with facilitators or for ongoing contact among participants provide ideas for the development of other programs that can draw on and complement Tele-Savvy. Advanced programs, similar to a follow-on course for the Savvy Caregiver graduates (Samia, Hepburn, & Nichols, 2012), could be developed.
Footnotes
Acknowledgements
The authors would like to thank all caregivers who participated in this project for their time, commitment, and helpful recommendations for program improvement. Authors are thankful to caregivers who participated in a member check and reviewed the results. The authors are indebted to all individuals who worked on the development of the Tele-Savvy course, including actors and health care professionals. The authors are indebted to Ms. Dianne Winsett for her help with project management and to Dr. Bonnie Jennings and Dr. Carey Sherman for thoughtful discussion and important feedback on this article.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Tele-Savvy pilot study was funded by Emory Alzheimer’s Disease Research Center (ADRC) (AG025688) Pilot Grant and by the Department of Veterans Affairs - Geriatrics & Extended Care T-21 Development Project.