Abstract
Background:
While research has shown that hospice family caregivers (HFCG) seek additional information related to patient care, pain and symptom management, and self-care, it is unknown how the use of telenovela videos for education in hospice would be received by HFCG.
Objective:
To explore HFCG perceived benefits and challenges with the use of telenovelas as compared to traditional educational videos during online support group.
Methods:
A mixed methods study with a concurrent triangulated design that analyzed qualitative interviews and YouTube analytics report to identify how viewers responded (number of views and their feedback) to telenovela videos as compared to traditional educational videos.
Results:
Among 39 (n = 39) HFCGs, most participants were female (80%) of White/Caucasian race, with more than high school education (85%) and they were adult children of hospice cancer patient (49%). Comparing HFCG that viewed traditional videos with HFCG that viewed telenovela videos, the telenovela video was watched more (12% longer viewing duration) and caregivers reported better content recall with informative benefits, more follow up actions and reflection about their own hospice experience.
Conclusion:
Caregiver feedback indicated that watching the telenovela was engaging, acceptable and produced more conversations about patient care, than watching a non-telenovela format video. Further research is needed to test telenovela efficacy in enhancing HFCG outcomes.
Keywords: educational videos, telenovela videos, hospice, family caregivers
Introduction
Technology-enhanced learning in the hospice setting improves learning outcomes. A meta-analysis showed that technology can enhance learning1 and a systematic review demonstrated that video, specifically, can be a highly effective educational tool in hospice and palliative care.2 However, technology-enhanced educational materials are not widely available for hospice staff to use for patient and family education.3 One innovative and emerging format for video health education is the use of telenovela. A “telenovela” is usually a television show which narrates stories with a characteristically dramatic plot. Spanish-speaking populations including Latinos are well known for high viewership of “telenovelas,”4 but telenovelas have been used for educational purposes in other populations. Various studies have demonstrated that teaching patients and families using a dramatic video like a telenovela may be a successful strategy to improve communication and health education because it engages the learner more than typical teaching methods.5,6
The ACCESS (Access for Cancer Caregivers to Education and Support for Shared decision-making) clinical trial is testing the impact of social and educational support through online support groups on caregiver anxiety and depression. Based on identified hospice caregiver educational needs (i.e. Pain management, self-care, dying process, etc.), 6 traditional educational videos using voice over power point were created (hereinafter, traditional videos) and disseminated through an online support group (OSG). Following Brame’s7 suggestions for development of effective educational videos, we explored adapting the educational videos using the telenovela format.3 This brief report aims to address the following research questions: (1) What family caregiver characteristics are related to likelihood of watching traditional videos as compared to telenovelas? (2) How do viewers respond to telenovela videos as compared to traditional videos? (3) What are family caregivers perceived benefits and challenges with the use of telenovela as compared to traditional videos? The use of telenovela videos is theory-based and is described by the To Care intervention.
Theoretical Framework
The theoretical framework for To Care, is adapted from Bandura’s model8 which describes self-efficacy as a person’s beliefs about their ability to perform a behavior to produce a desired outcome. In Social Cognitive Theory, perceived self-efficacy to exercise control over potentially threatening events plays a central role in anxiety arousal.9 In the context of caregiving, anxiety is heightened when a caregiver is not sure how to handle a situation. Self-efficacy acts as a cognitive mediator of anxiety such that higher self-efficacy can reduce anxiety because of one’s sense of control over their particular caregiving situation. The framework posits that a specific intervention will present information that effects beliefs and impacts specific outcomes. In this case, the telenovela (intervention) uses storytelling to present information about specific caregiving concerns (information), changing caregiver self-efficacy about their care (beliefs) and decreasing caregiver anxiety (outcome). The To Care intervention comes from a credible source with guided mastery of hospice staff to elicit previous caregiver experience and with video education to provide modeling and persuasion with the potential to change caregiver self-efficacy9 (see Figure 1).
Figure 1.
Conceptual framework for To Care intervention. The theory behind the use of telenovela videos is described by the To Care intervention. The information provided by the telenovela videos is described with examples (i.e.) from the dramatic story. HFCG indicates hospice family caregiver.
Methods
Design
This is a mixed methods study with a concurrent design10 that analyzed data originally collected as part of an ongoing cluster crossover randomized pragmatic trial sponsored by the National Cancer Institute (R01CA203999). The full trial protocol was approved by the University of Missouri Institutional Review Board and is registered at clinicaltrials.gov (NCT02929108). This 2 phase study compared traditional videos shown to participants in the intervention arms during the first year of the study (traditional videos) with participants in the intervention arms during the second year of the study (telenovela videos).
Online-Support Group (OSG) and Telenovela
Based on previous work, a Facebook private and hidden group was utilized as the platform for the OSG, since it had previously been established that caregivers found it useful and easy to use.11,12 Access to the group was limited to family caregivers actively enrolled in the study. The OSG was facilitated by research staff with a Masters of Social Work (MSW) degree. The protocol was formed around a rotating cycle of educational and supportive content. In addition to facilitating spontaneous interactions, the facilitator posted links to a weekly video, 2 structured educational links or articles, and discussion questions encouraging discussion and exchange of personal experiences and support around the week’s featured topic (see Table 1). Both the traditional videos and the telenovela focused on 6 educational themes based on preliminary research: (1) highlighting hospice caregivers’ challenges related to managing pain,13,14 (2) witnessing patient decline as death nears,15 (3) participating in shared decision making,16 (4) accessing social support,17 (5) engaging in self-care,18 and (6) misperceptions about hospice and the hospice interdisciplinary team. Traditional videos were used for 1 year of the project. These were voice over power-point slides which used graphics and photos.
Table 1.
Semi-Structured Interview Guide.
| Exit interview question for traditional video participants | |
|---|---|
| Core question | Probe |
| Sometimes the Facebook group featured videos or articles about different topics faced by caregivers. Which topics did you find to be most helpful? (If you need to remind the caregiver of the topics, they were pain assessment, shared decision making, the final journey, caregiver self-care, social support, and caregiver advice.) |
|
| Exit interview question for telenovela video participants | |
| Core question | Probe |
| The Facebook group included a series of videos about one family’s hospice experience. Do you remember seeing any of those videos? If so, what did you think about them? (If you need to describe the videos to jog the caregiver’s memory, say something like, “The videos featured a woman who was taking care of her husband who had terminal cancer and was receiving hospice services. As the husband’s illness advanced, his wife struggled with her own worsening health. Ultimately, she was able to accept help and take care of herself.”) |
|
One year after OSG started, the 6 core topics of the traditional videos were replaced by a 4-episode telenovela covering the same educational themes. Details of telenovela development and content are published elsewhere.3 Both the traditional videos and the telenovela were posted to a private YouTube channel. Family caregivers were provided links each week to access either the videos or the episodes. Discussions within the group followed the posted content by the facilitator with additional topics of interest raised by group members. Participants were removed from the group following a transition period after the death of their hospice patient. Upon study exit, individuals were contacted and asked to participate in a 20-minute phone interview about their experiences with hospice and the intervention.
Participants
Hospices in the clinical trial were randomized to 1 of 3 study arms, 2 which utilized the OSG and one control. Study participants were adult family caregivers of cancer patients who were receiving care from 1 of 7 hospice sites in the Midwestern United States. Following consent, family caregivers of patients enrolled in the intervention arms of the ACCESS trial were enrolled in an OSG created specifically for study.
Data Sources
Quantitative data.
Family caregiver characteristics were collected with a baseline survey, including, gender, race, age, relationship with hospice patient, marital status, educational level, household income, general health, Patient Health Questionnaire-9 items, 0–3 scale, 0–27 score range (PHQ-9),19,20 Generalized Anxiety Disorder-7 items, 0–3 scale, 0–21 score range (GAD-7),21,22 (Family Pain Questionnaire, 0–10 scale, 0–160 score range (FPQ).23 Family caregivers were also asked about hospice patient characteristics, including, patient’s gender, race, age, educational level, marital status, place of residence, and primary cancer diagnosis. Data on video viewing (total number of views and average time viewed) was obtained utilizing YouTube analytics report, which supports real-time targeted queries to generate custom YouTube Analytics reports.24
Qualitative data.
A semi-structured interview guide was designed based on preliminary work with the intent of exploring participants’ experiences with hospice and the intervention, which included 1 question regarding participants’ perceived benefits and challenges of using the videos. Interviews were recorded and transcribed. Family caregivers were asked about the series of videos included in the online support group, whether they remember seeing them and their opinion about them. See Table 1 for the interview core questions and probes. Exit interviews were conducted from September 2018 to January 2020. Two research staff trained by a senior researcher (DO) used a standardized interview guide to conduct all interviews. The average length of interviews was 17.16 minutes (SD 8.01).
Data Analysis
Quantitative analysis.
Family caregiver and patient characteristics were computed with SPSS v2425 using frequencies and percentages for categorical variables, and means and standard deviations (SD) for continuous variables. Two groups were compared using a chi-square test or Fisher’s exact test for categorical variables and using a t-test for continuous variables. Video viewing of videos (total and average views in minutes and percentage) was summarized using You Tube Analytics Application Programming Interface.24
Qualitative analysis.
Coding of transcripts involved sorting the data into large-level categories determined a priori. We used the questions from the interview guide to develop the codebook of 8 categories as a guide for content analysis and deductive coding of exit interviews. Two team members (DC & MA) independently coded transcripts, and suggested additional codes (e.g., “facilitated follow up actions”) that emerged in the interview. Peer debriefing, memos and an audit trail were used to assure trustworthiness as transcripts were discussed and discrepancies brought to consensus. Findings were shared with the group facilitator as a member check.
Results
Characteristics of Participants
Caregiver and their patient characteristics by study group are summarized in Table 2. A total of 39 family caregivers completed the exit phone interviews from 9/5/18 to 1/13/20. Most participants were female (80%) of White/Caucasian race, married (69%) with more than high school education (85%) and they were adult children of hospice patient (49%). Hospice patients were mostly female (54%), White/Caucasian race (87%), never married (51%), well educated (49%), residing at home (82%) and with lung or GI cancer (58%). While family caregivers of White/Caucasian race, married, well-educated and good general health status had a higher tendency of watching the videos, sensitivity analysis demonstrated that there was no strong association between watching of videos and patient or family caregiver demographics. The proportions of watching videos was not significantly different across the 2 groups; 70.6% in traditional group and 65.0% in telenovela group (p = 0.717; 95% confidence interval for the difference: −24.5%, 35.7%). There was no evidence of difference between the groups on other baseline variables.
Table 2.
Family Caregiver and Patients Characteristics.
| Variable | Family caregiver * total (N = 39) |
Traditional group (N = 18) |
Telenovela group (N = 21) |
Patient total (N = 39) |
|---|---|---|---|---|
| Gender, n (%) | ||||
| Female | 31 (79.5) | 16 (88.9) | 15 (71.4) | 21 (53.8) |
| Male | 8 (20.5) | 2 (11.1) | 6 (28.6) | 18 (46.2) |
| Age, mean ± SD, missing = 1 | 57.6 ± 10.89 | 58.1 ± 10.88 | 57.2 ± 11.16€ | 71.7 ± 15.29 |
| Race, n (%) | ||||
| Black/AA | 5 (12.8) | 1 (5.6) | 4 (19.1) | 5 (12.8) |
| White/Caucasian | 31 (79.5) | 16 (88.9) | 15 (71.4) | 34 (87.2) |
| Other | 3 (7.7) | 1 (5.6) | 2 (9.5) | 0 |
| Marital status, n (%) | ||||
| Married/Partnered | 27 (69.2) | 14 (77.8) | 13 (61.9) | 13 (33.3) |
| Separated/Divorced | 5 (12.8) | 1 (5.6) | 4 (19.1) | 6 (15.4) |
| Single/Widowed | 7 (18.0) | 3 (16.7) | 4 (19.1) | 20 (51.2) |
| Education, n (%) | ||||
| HS/GED or less | 6 (15.4) | 1 (5.6) | 5 (23.8) | 20 (51.3) |
| Some college/trade school/Undergrad degree | 24 (61.5) | 14 (77.8) | 10 (47.6) | 16 (41.0) |
| Graduate/Professional Degree | 9 (23.1) | 3 (16.7) | 6 (28.6) | 3 (7.7) |
| Income, n (%), missing = 6 | - | |||
| <$20,000 | 5 (12.8) | 2 (11.1) | 3 (14.3) | |
| $20,000–39,999 | 8 (20.5) | 4 (22.2) | 4 (19.1) | |
| $40,000–69,999 | 6 (15.4) | 3 (16.7) | 3 (14.3) | |
| $≥70,000 | 14 (35.9) | 5 (27.8) | 9 (42.9) | |
| Prefer not to answer | 6 (15.4) | 4 (22.2) | 2 (9.5) | |
| Relationship to patient, n (%) | - | |||
| Adult child | 19 (48.7) | 6 (33.3) | 13 (61.9) | |
| Spouse/partner | 9 (23.1) | 6 (33.3) | 3 (14.3) | |
| Other | 11 (28.2) | 6 (33.3) | 5 (23.8) | |
| Residence, n (%) | - | - | - | |
| Home (private residence) | 32 (82.1) | |||
| Non-residence | 7 (17.9) | |||
| Type of Cancer, n (%) | - | - | - | |
| Stomach, Liver, Anal | 17 (43.6) | |||
| Lung, Mesothelioma | 6 (15.4) | |||
| Others | 7 (17.9) | |||
| Don’t know/prefer not to answer | 9 (23.1) | |||
| General Health, n (%) | - | |||
| Poor/fair | 9 (23.1) | 4 (22.2) | 5 (23.8) | |
| Good/very good/excellent | 30 (76.9) | 14 (77.8) | 16 (76.2) | |
| Patient Health Questionaire-9, mean ± SD | 9.5 ± 6.89 | 10.1 ± 7.58 | 9.0 ± 6.38 | - |
| ≥ 10 Depression, n (%) | 20 (51.3) | 10 (55.6) | 10 (47.6) | |
| Generalized Anxiety Disorder-7, mean ± SD | 9.4 ± 5.95 | 10.4 ± 6.57 | 8.5 ± 5.36 | - |
| ≥ 10 Anxiety, n (%) | 17 (43.6) | 8 (44.4) | 9 (42.9) | |
| Family Pain Questionnaire, Total score, mean ± SD | 73.9 ± 14.81 | 71.7 ± 13.97 | 75.6 ± 15.61 | - |
| Knowledge subscale (n = 34) | ||||
| <39 low knowledge, n (%) | 18 (52.9) | 10 (66.7) | 8 (42.1) | |
| Experience subscale (n = 36) | ||||
| <36 low experience, n (%) | 19 (52.8) | 11 (64.7) | 8 (42.1) | |
| Watched video, n (%) | 25 (67.6) | 12 (70.6) | 13 (65.0) | - |
| Missing | 2 | 1 | 1 |
GED = general educational diploma. Other race = Asian, Native American, Pacific Islander and multiple race. Other relationship to patient = in law, parent, sibling and granddaughter. Non-residence = nursing home, assisted living facility, independent living facility and family member’s house. Other type of cancer = cancer of the liver, larynx, multiple myeloma, pancreas, testicular.
P-value was >0.05 for comparing 2 proportions either from a Fisher’s exact test or chi-square test; P-value was >0.05 for comparing 2 independent means from a t-test,
n = 20.
does not apply.
Viewing of Traditional Videos Compared to Telenovelas.
Traditional videos total views were similar compared to telenovela videos but average views were 39 seconds and 12% longer in duration. See Table 3.
Table 3.
Traditional Videos and Telenovela Viewing.
| Traditional videos | |||||||
|---|---|---|---|---|---|---|---|
| Title and duration of video | Self-care* 4:56 | Hospice myths* 4:39 | Pain assessment 4:40 | Shared decision making* 4:32 | Social support* 5:16 | The final journey 5:58 | Total average |
| Total Views | 15 | 17 | 24 | 12 | 11 | 29 | 18 |
| Average View Duration (minutes: seconds) | 1:42 | 2:13 | 2:14 | 1:19 | 1:49 | 3:03 | 1:90 |
| Average View Duration (%) | 34.7% | 47.9% | 48.0% | 29.3% | 34.4% | 51.4% | 40.1% |
| OSG period from 9/1/2018–5/31/2019 (8 months) | |||||||
| Telenovela videos | |||||||
| Title and duration of episode | Episode 1*: Pouring From Empty Cup* 5:14 | Episode 2: How Can I Tell He Is In Pain 4:35 | Episode 3*: Shall I Take Him To The ER* 3:07 | Episode 4: He Is Not Dying 6:05 | |||
| Total Views | 15 | 14 | 14 | 20 | 16 | ||
| Average View Duration (minutes: seconds) | 2:14 | 2:01 | 1:52 | 3:50 | 2:29 | ||
| Average View Duration (%)** | 42.8% | 44.0% | 59.3% | 63.1% | 52.3% | ||
| OSG period from 6/1/2019–1/13/2020 (7 months) | |||||||
Topics = Self-care and Hospice Myth topics were merged into Episode 1 of telenovela; and Shared-Decision making and Social support topic were merged into Episode 3 of telenovela.
This represents the percentage of view time of the whole video, for example out of 100% of the video time participants viewed an average of 30% of the whole video.
Traditional Videos.
Qualitative interviews provided some explanation of why there was poor uptake of the video content that was recorded using voice over power point, prior to the development of the telenovela (9/1/18–5/31/19). Only 2 caregivers of the 18 from this phase reported value from the videos.
Well, when I was able to pick out a video that I felt did relate to me, and I had the time to watch, I did…There was one or two that I did save, where I could go back and look at it again when I felt like I needed to.
(Participant-5-1633-01)
Overall, very few caregivers recalled watching the videos and if they did watch the videos, they had difficulty recalling the content. For the vast majority of those who participated in this phase of the study, they reported more benefits from the written materials and engagement in the online support group. Finally, caregivers in this group mentioned the importance of timing and relatability of the videos.
I mainly just read [the posts]. I don’t spend a lot of time on that, so I can’t think of anything that really stood out. I mainly just read some stuff with people with the same experiences. I didn’t really check out the videos.
(Participant-3-1747-01)
I mean, it really wasn’t helpful for me because, I mean, he was still able to communicate first of all. Second of all, it’s something I’m familiar with anyway.
(Participant-4-1811-01)
Telenovelas.
After the telenovelas were developed, the previous videos were removed from the intervention and study caregivers had the opportunity to watch the 4 episodes of the telenovela (6/1/20–1/13/2020). The exit interviews with hospice family caregivers produced several comments related to the telenovela videos.
Caregivers mentioned time limitations and timing of the videos as their biggest obstacle. Some felt their time with hospice was too limited to benefit from the videos or that the timing of their loved one’s death precluded an opportunity to watch or benefit from the videos. When asked how they benefited from the ACCESS intervention 1 participant noted: “…just watching the videos [the telenovelas] and reading the articles. I really did not have the opportunity to interact with a lot of folks. I think if my father probably would have lived a little longer, I probably would have been able to interact with a lot more. ”
(Participants-3-2225-01)
Another participant noted the short length of the telenovela videos as helpful. “I think there was a couple of videos [the telenovelas] that were put on. They were pretty short, couple, 2, 3 minutes. ”
Different from the experience with the initial videos, the telenovelas prompted much more rich qualitative data around the acceptability of the telenovelas. Caregivers were readily able to recount content of the videos, describing the plot, content and characters.
I thought it was actually really good. It was one that talked about how the lady’s husband was not really responsive. He was in a deep sleep and she was worried she gave him too much morphine, and the hospice nurse explained, “No, he didn’t have too much,” but she wanted to wake him up so he could say goodbye to people. So they kind of mutually agreed on lightening up the medicine a little bit so he could be sort of coherent, but he’d let her know, “If we take him off of it, then he’s going to feel more pain. Right now, he’s resting comfortably.” So I thought it would’ve been helpful if I was in that situation. Luckily we weren’t, but it definitely would have been helpful.
(Participant-7-2371-01)
Further, the caregivers identified with the videos and felt they provided helpful information related to understanding the role of the caregiver and preparing them for future situations.
You know, it did kind of reflect a reality of something that people go through. So I thought it was something true that a lot of people don’t think about until they’re in that situation. But yeah, I mean it’s just sad think about.[…] It’s just, the fact that sometimes for me, a lot of times I just try to go through the motions and I don’t think about things as much, so seeing stuff like that [the telenovelas] kind of forced you to think about it. But you’re dealing with it every day anyway, so it’s just kind of there.
(Participant-3-2172-01)
It was all through the similar thing of just knowing what to do. You know what I mean? Knowing your role. Your different role. Knowing what you do. It’s just not being able. I just buried my father Monday. Not being able to …Those roles, those expectations. Seeing a person, that’s the relate-ability for anybody. Having people come in and out your house.
(Participant-3-2225-01)
Still, not all caregivers enjoyed the format of the telenovelas and some felt they were “overly dramatic,” as is typical of the genre. And some did not relate to them because it did not reflect their experience.
Yes. Despite being dramatic, they were informational and that was helpful.
(Participant-4-2130-01)
I did. I watched a few [the telenovelas] and I thought, “Wow, this doesn’t compare to my hospice experience.”[…] But they …I thought the videos [the telenovelas] seem to be pretty much probably on par for what most people would experience.
(Participant-7-2355-01)
Caregivers noted benefits to the telenovela videos
Yeah, I did. I really think that that [the telenovelas] added an extra means of support because I could go back to that if I need a refresher of what was said or the suggestions were that were made. I think that it’s good that they were on there. So for those that are taking care of, especially family, that they can go on there and get ideas about what to do or not do.
(Participant-4-2039-01)
For others it prompted discussions or conversations about the care of their loved one.
Back to the when she was moaning and groaning a lot, and I didn’t know if it was pain or not. So I questioned the nurses because after watching it [the telenovelas] in the Facebook group, it made me wonder if she was doing it because she was uncomfortable.
(Participant-3-2252-01)
While the telenovelas prompted a better response than the previous version of the videos, partly because of more probes in their exit interview question. Both caregiver exit interviews indicated that future interventions may benefit from enhanced matching of content and timing of the videos, a better connection to hospice care delivery and continued connection to both staff and others that are experiencing end-of-life caregiving.
Discussion
While telenovela has been extensively studied among Latinos, little research exists on its effects on other groups. This study provides promising data on its benefit for other population groups in accordance with established recommendations26 to support family caregivers. These data demonstrate that family caregivers of hospice patients with advanced cancer responded positively to the replacement of traditional videos with telenovelas by watching them longer. Participants that watched the telenovela reported more follow up actions and reflection about their own hospice experience.
Informational support has been found to be critical in helping family caregivers cope with caring for the dying patient.27 Our study demonstrates that the telenovela has the potential to provide informational support. From the interviews we found that the narrative format of the telenovela was more engaging and resulted in more retention of the content. Similarly, a study that used a hospice video educational tool showed an increase in family caregivers’ knowledge about hospice and most of them were very comfortable watching the video.28
These results are consistent with the To Care self-efficacy theoretical framework illustrating vicarious experience, (feeling prepared for future, recounted content of video, disliked video), verbal persuasion (informative benefit, identification with video), and performance accomplishments (addresses loneliness, facilitated follow up actions, and time restraints). The provision of knowledge, modeling of skills, identification with video and visual information about future health status are the active ingredients of the telenovela that by influencing caregiver’s self-efficacy would improve caregiving outcomes, such as caregiver anxiety.
This study has limitations. The sample in this study was small, therefore, differences among the 2 groups were not statistically significant. The exit interview questions were different for each video and this affected the ability to compare qualitative data among the video groups. The sample was mainly White females and this decreases the generalization of our results. However, our sample characteristics reflects demographics on most family caregiving studies.
Conclusion
This study demonstrates the promise of dramatic telenovela format as an educational intervention. Further research is essential to test the effectiveness of the telenovela intervention approach.
Acknowledgments
We would like to thank Jamie B. Smith, Christy Merrick, and Abeba Lakew in this project.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research reported in this publication was supported by the National Cancer Institute and award number (Parker Oliver) through a Diversity Supplement. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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