Abstract
Background and Aims
Telenovelas are a promising educational mode for teaching hospice family caregivers (HFCGs) to manage distress for themselves and their care recipients. We sought to understand the relationship between HFCGs’ change in anxiety and self-efficacy scores and their feedback regarding the NOVELA intervention (guided viewing of a hospice-related telenovela) using a mixed methods post-hoc analysis.
Methods
This single-group pretest-posttest clinical trial included HFCGs from three hospices in the U.S. Mid-Atlantic region. At baseline and following each session, participants completed a web-based survey assessing two outcomes: anxiety and self-efficacy. Descriptive statistics, including t-test and chi-square, were computed. We also used semi-structured interviews to compare perceptions of HFCGs with improved vs non-improved outcome measures.
Results
Participants (N = 50) were mainly home-bound, well-educated, White, female, adult children of people with an advanced non-cancer diagnosis. In total, 44 participants completed the outcome measures, with 12 in the non-improved group and 32 in the improved group. As shown by between-group differences comparing those with improvement and those without improvement, we identified three mixed-methods themes: (1) NOVELA participants valued interventionist interactions, but video content was not always relevant; (2) NOVELA enhanced understanding of hospice caregiving tasks, but timing was critical and caregivers with prior experience may have benefited less; and (3) barriers to NOVELA such as telehealth challenges and needing flexibility for caregiving demands (including more self-care content) must be addressed.
Conclusion
NOVELA’s acceptability among HFCGs differed by improvement status and called for intervention adaptations that could potentiate NOVELA’s impact.
Clinical Trial Name, Number, And Url
Improving Self-Efficacy Through a Telenovela: Feasibility Study (NOVELA), NCT04533594, https://register.clinicaltrials.gov/prs/app/action/SelectProtocol?sid=S000A6QU&ts=0&selectaction=Edit
Keywords
Introduction
Hospice care is typically dedicated to relieving symptoms and prioritizing comfort for individuals facing a life expectancy of 6 months or less. 1 More than 48 million caregivers provide unpaid care to individuals 18 or older, particularly those with complex functional and medical needs, extending to end-of-life (EOL) care. 2 Recognizing caregivers’ complex challenges, the National Academies of Science, Engineering, and Medicine advocate for comprehensive caregiver support. 3
A study by Parker Oliver et al 4 reported that almost one-quarter of hospice family caregivers (HFCGs) experienced moderate-to-severe levels of depression, and one-third reported severe levels of anxiety. 4 Caregivers often assume this challenging responsibility with little training or formal education about what the role entails, which could include dispensing medication and monitoring symptoms and side effects. This expanded role may make caring for a family member at the EOL difficult and stressful. 3 Caregiver support should include education and skill-building opportunities to enhance caregiver self-efficacy and confidence. 5
By gaining knowledge, skills, self-efficacy, and confidence, caregivers can be better equipped to assist their family members at the EOL, fostering a more resilient and empowered caregiving experience. Our intervention addressed caregiving education and skill-building gaps, with the assumption that filling these gaps would ultimately improve self-efficacy and reduce anxiety.
Mixed-methods analysis can examine reactions to a specific intervention 6 by combining the strengths of quantitative and qualitative data to understand the complexities of intervention delivery and acceptability. 7 This study aimed to explore the response to the intervention by addressing the following research questions: (1) How did the experience of people with improvement in key outcomes differ from those without improvement? (2) How did HFCG learnings and actions described post-participation differ between HFCGs with improved outcomes vs those without improved outcomes?
Materials and Methods
Design
This post-hoc analysis employed a single-group pretest-posttest design to estimate the intervention effect (quantitative strand) and evaluate the acceptability of the intervention (qualitative strand) using an explanatory sequential, mixed-methods approach. 8 The full trial protocol was approved by the Johns Hopkins University Institutional Review Board and is registered at clinicaltrials.gov , NCT04533594.
Participants and Setting
Study participants were HFCGs of patients receiving care from one of three hospice agencies in the mid-Atlantic United States. Hospice sites were private non-profit agencies serving rural, suburban, and urban areas in Maryland and Pennsylvania.
Inclusion criteria included: (1) HFCG older than 18 years, and (2) access to an internet-connected device. Exclusion criteria included: (1) HFCGs caring for a patient with a Palliative Performance Index score of less than 20%, (2) HFCGs unwilling to be recorded (because it would not allow intervention fidelity monitoring), or (3) HFCGs did not self-report as being their care recipient’s primary caregiver. Consistent with other caregiver studies, the primary family caregiver was defined as “a relative, friend, or partner that has a close relationship with the patient and who assists him or her with their medical care. This person may or may not live in the same residence and is not paid for their help.” 9
We used two recruitment methods: clinician referral and electronic health record screening. After a caregiver was identified, research staff contacted them and obtained informed consent from interested and eligible participants. HFCGs of patients enrolled in hospice care were consecutively sampled. Our power analysis showed that with a 35% attrition 10 adjustment, an estimated sample size of 55 subjects, providing an expected 36 participants, was needed for 83% power to detect a 2-point pre/post minimal clinically important difference (MCID) 11 (with SD = 4) in General Anxiety Disorder-7 (GAD-7) anxiety scores12,13 at the 0.05 level of significance.
The NOVELA Intervention
A four-chapter telenovela video series for HFCGs, titled “To Care,” was produced as part of an educational intervention called NOVELA (short for telenovela).
14
While telenovelas are well-known in Latin American countries, this genre is also broadly viewed by non-Hispanics, as in the case of the popular series Jane the Virgin.15,16 Bandura’s social-cognitive theory
17
contends that a specific intervention will present
The intervention protocol 20 thus consisted of four telemedicine visits via Zoom using a personal web-enabled device (computer, smartphone, or tablet). The visits were arranged over four weeks with a trained interventionist who holds a master’s degree in social work. During the visit, each participant viewed a video chapter of NOVELA with the interventionist.
Data Collection and Measures
Measurement Strategy
The Caregiver Self-Efficacy Scale (CaSES) 15 measured participants’ self-efficacy. CaSES is a 21-item tool, and items are scored 1-4 with higher scores reflecting higher self-efficacy. Anxiety was measured with the General Anxiety Disorder-7 items scale (GAD-7).16,18 GAD-7 items are summed, with higher scores reflecting higher anxiety levels. Both questionnaires were completed at baseline and posttest assessment using REDCap.21,22
We examined missing data patterns by comparing those with and without missing data on the baseline survey and other background variables to determine differences between those with complete follow-up and those with missing data (n = 6/50, 12%). Data were imputed for missing items for participants (n = 12/50) who completed at least 70% of scale questions, using the median for that scale. While data for each of the 28 scale items (GAD-7 + 21 in CaSES) were fairly complete, n = 9 items had some missing data. Twelve (n = 12) of the 50 HFCG had missing data on between one and three scale items. Except in five cases, the pattern of missing data for each case was not duplicated. Using methods suggested by Allison,23,24 the researchers tentatively determined that data were missing at random. To retain cases with missing data, the researchers employed a regression-based single imputation method to impute the missing values.
Interview Strategy
Interview Guide Topics and Questions by Consolidated Framework for Implementation Research (CFIR) Domains
Data Analysis
Three-Phase Analysis
First, we used frequencies and percentages for categorical variables and means and standard deviations (SD) for continuous variables to summarize sample characteristics and outcomes data. Outcomes at baseline and final posttest assessments were compared using a paired t-test. We used subgroup analysis to explore factors influencing improvement categorization or score changes, including baseline characteristics, completing outcome measures after the death of the care recipient, missing data, and the number of sessions received. Analysis was done with SPSS v24. 27
Second, we used interview guide topics and questions to develop the codebook a priori (Supplemental Table B), which comprised 13 unique codes. We coded exit interviews using a deductive coding approach with a semantic level of interpretation. 28 Two team members (KN, MAS), who were blinded to the group assignment, independently coded transcripts and suggested additional codes that emerged in the interviews. We used NVIVO 12 Pro (QRS International, Australia) for coding and analysis. Peer debriefing, memos, and an audit trail were used to enhance study rigor. Any discrepancies were discussed and addressed to achieve consensus coding.
Third, to understand the differences in intervention experiences, perceptions, and benefits, we conducted a post-hoc mixed-methods analysis.7,29 We divided our sample based on the improvement of caregiver self-efficacy or anxiety. For exploratory purposes, improvement was defined as a numerical improvement on either the self-efficacy measure (increase of ≥0.01, range 1-4) or anxiety measure (decrease of ≤1, range 0-21). These numeric changes did not necessarily indicate clinically important differences (MCIDs) in outcome measurements. However, for convenience, we separated the groups based on the tendency of participants’ scores to go in the expected direction in either of the measures. Namely, we distinguished between the improved group (with an increase in self-efficacy or a decrease in anxiety scores) vs the non-improved group (with a decrease or no change in self-efficacy, or an increase or no change in anxiety scores). We separated coded transcripts into improved and non-improved groups for thematic analysis. Analysts first summarized code reports into analytical statements, then themes were developed and synthesized. Thematic analysis was an iterative process, involving frequent team meetings, discussions of team bias, and reflection. Finally, we utilized joint displays 30 to integrate the qualitative and quantitative data, comparing and contrasting the experiences of both groups.
Results
Recruitment, Baseline Characteristics, and Intervention
Figure 1 shows the flow diagram of participant recruitment, enrollment, intervention delivery, and outcome measures. Our sample mainly consisted of female (n = 40, 80%), spousal and adult child caregivers (n = 27, 54%), with an average age of 61 years (Table 2). Caregivers were diverse in terms of race/ethnicity, but most (n = 34, 68%) held a college degree or higher. Hospice care recipients were living at home with mostly non-cancer primary diagnoses (n = 36, 72%). Thirty-three participants completed four intervention visits. In total, 20 care recipients died before the HFCG completed the fourth session, and this was the main reason for missing scheduled intervention sessions. A total of n = 50 participants completed either the final outcome measures (n = 44), the exit interview (n = 45), or both. These 50 were included in our mixed-methods analysis. Recruitment, Enrollment Intervention Delivery and Outcome Measures Flow Diagram Caregiver Characteristics by Improvement Status ǂ Participants who had missing outcome measures (n = 6), could not be classified into a group and were excluded from mixed methods analysis. *Other marital status = divorced, separated and widowed. **Other relationship with patient = friend, grandchild, grandparent, other relative, son/daughter-in-law. ***Non-cancer diagnosis = Cardiovascular, Infectious, Multi-systemic (which included, connective tissue disease, ulcer disease, diabetes, and multiple contributing conditions), Neurologic or Renal. – (dash) = 0%.
Summary of Quantitative Results
Comparison of Baseline and Final Outcome Measures for NOVELA by Improvement Status
*P value <0.001.
**Higher scores indicate higher (better) self-efficacy for CaSES and indicate more/worse anxiety on GAD-7 scores.
Next, we sought to identify factors that could have influenced improvement categorization or score changes, including baseline characteristics, completing outcome measures after the death of the care recipient, missing data, or the number of sessions received. The non-improved group included more adult children caring for a parent (n = 8; P = .039). Yet, no other baseline characteristics were significantly associated with being in the improved group. Completing the outcome measure after the death of the care recipient (n = 20, 40%) was not associated with score changes in either group. Nor did sensitivity analysis, using both complete and missing data, reveal any significant associations with the amount of change in outcome scores.
Summary of Qualitative Results
Themes were derived through consensus during team meetings with reflexive process discussions, and data collection was completed when data saturation was reached. Following the Consolidated Framework for Implementation Research (CFIR), we identified three themes: features of the intervention, perceived outcomes of participation, barriers to participation, or opportunities for improvement. Supplemental Tables A & B present the qualitative themes, grouped with their corresponding codes, and divided by group.
Summary of Mixed Methods Results
Joint Display of Results by Themes
Discussion
The purpose of this mixed-methods study was to evaluate whether there was a difference in the experience, learning, and follow-up actions between two groups of HFCGs. The groups were those whose caregiver self-efficacy and anxiety scores improved vs those whose scores did not improve. Qualitative results between groups also showed differences in the intervention’s acceptability (see Table 4). Between-group differences, drawn from mixed-methods analysis, helped to illuminate various levels of acceptability to our NOVELA intervention.7,8,26
Overall, both groups were similar in valuing interventionist interactions, identification with video characters, and learning how to handle caregiving challenges. Self-care, accepting help, the dying process, the use of hospice, and pain medication management were topics consistently reported as lessons learned by both groups. However, insights shared in the interviews may explain the improvement in scores. Notably, the improved group was more enthusiastic in describing the interventionist as an objective listener. The improved group also provided a more in-depth rationale for why they identified with the wife’s character than the non-improved group did. While a few HFCGs in the improved group reported that they did not learn from the videos, most of them made positive comments about the intervention and identified some benefit from study participation. These benefits included the moral support of seeing others in the same situation and the perceived emotional support of having the interventionist present to talk with about the telenovela, as mentioned in Theme 1 of Table 4. In sum, these insights are concordant with the group’s improved outcome measures.
Both groups of HFCGs offered insights into the video content. The non-improved group tended to have some familiarity with caregiving. Therefore, they did not identify as much with the telenovela characters, who appeared to be less familiar with caregiving. They also commented that the timing of the intervention was less helpful, and they would have liked to have access to it earlier in the caregiving journey. Further, the primary caregiver character in the telenovela was the wife of the participant portrayed. Therefore, those participants caring for a parent may have identified less with the video content. Possibly, the lack of improvement in caregiver self-efficacy or anxiety among some participants was due to an inability to relate to the video content. Differences mentioned included the relationship to the patient, as mentioned above, the diagnosis, and the place of residence.
In contrast, the improved group reported NOVELA’s positive effect on their caregiving experience and behaviors, including changes in the way they cared for the care recipient, the use of medication for comfort, the use of hospice support, and acceptance of outside help. They also found interactions with the interventionist to be helpful and therapeutic, and they reported feeling less alone. Perhaps these participants were more open to external help and receptive to this type of educational intervention. They also may have needed the imparted knowledge more than the non-improved group. Further, the improved group elaborately described suggestions for improving video content, indicating that they were aware of their need for support.
Some features of NOVELA were equally valued by both groups of HFCGs, mainly discussions with the interventionist. Prior studies have reported that family caregivers value social support offered via a navigator to help them focus on their own needs as caregivers to seek physical and emotional respite. 32 Our study also aligns with reports of informal caregivers needing emotional support from someone who understands them and their problems in caring for individuals with the care recipient’s condition. 33 Caregivers also spoke about the importance of educating themselves on the care recipient’s condition and caregiving best practices. 34 This implies that a crucial way the intervention could impact caregiver self-efficacy and anxiety scores would be by tailoring the videos to HFCG situations more like their own. For example, in our study, HFCGs suggested showing videos that matched a care recipient’s diagnosis or phase of illness. We plan to modify future trial methodology to tailor the videos to HFCGs’ needs and to recruit HFCGs with specific needs.
Like other studies, we found that caregivers sometimes felt overwhelmed 34 and had “no time” to engage with interventions. 29 Also, like other studies, we found that the intervention helped them to see the positive side of caregiving and to improve caregiving skills and experiences. 34 Participating in NOVELA provided an opportunity for personal growth, new skills, and a sense of fulfillment and gratitude despite the varied challenges participants encountered. 34
While palliative interventions in the early phase of research have demonstrated some level of improvement in caregiver quality of life, burden, knowledge, and anxiety, 35 some have failed to show significant changes in caregiver outcomes. 32 Yet, qualitative results suggest that palliative interventions can be impactful for care recipients and families. Timing relative to patient death and caregivers’ prior experience was influential. However, these factors did not fully explain the differences in score tendencies between the two groups.
It is possible that the improvements resulting from these interventions were not adequately captured by the measurements used. 32 For example, Pesut and colleagues suggested four primary outcomes from palliative support services, including enriched relationships, greater autonomy and perceived control, increased knowledge, and improved mental health. 32 We suggest that outcome measures should be collected right after or shortly after the completion of the intervention, rather than weeks later, to prevent recall bias. 35 Alternative outcome measures and timing of data collection will be important considerations for future NOVELA trials and iterations.
Limitations
This study had limitations. The sample in this study was small, and our pre/posttest design limited our ability to estimate the intervention’s effect. The study did not include a comparison group, which prevented measuring the changing nature of the outcomes throughout the study. Because of the absence of a comparison group, we are reporting a mixed-methods analysis of the outcome measure score changes. Further, the analysis did not control for the potentially confounding influence of the HFCG’s preexisting psychological diagnosis or length of time as a caregiver—neither of which was collected in the study. However, time of death, missing data, and self-reported prior caregiving experience did not influence HFCGs’ experience. Also, the criteria to define improvement/non-improvement status were categorized by pre-defined cutoff scores (e.g., greater caregiver self-efficacy and lower anxiety in the improved group), rather than by MCID in outcome measures. However, our criterion for anxiety score change was close to the MCID reported in the literature for GAD-7.11,31 Lastly, the sample was largely homogenous, comprised of White females, which was a recruitment limitation and decreased our ability to generalize results. However, our sample characteristics largely reflected demographics reported in many family caregiving studies 36 and trends in hospice utilization nationwide, with users consisting of more than 80% White individuals. 37 Nevertheless, there is a need for further iteration of NOVELA to be culturally tailored for underrepresented populations, including those with limited English or low health literacy—groups who may benefit from having access to this type of education. 38
Conclusion
NOVELA’s acceptability among HFCGs differed by their self-reported caregiver self-efficacy and anxiety scores. Participants with improved scores were more open to this type of educational intervention—they reported more lessons learned, had insightful suggestions for additional content, and reported more follow-up actions taken. Participants with non-improved scores had different video content needs and identified less with the characters in the video. They were also more impacted by the timing of the video and familiarity with caregiving. Building upon a video-based educational approach, NOVELA has the potential to improve emotional and social support, motivate caregivers to access help, and enhance their engagement in self-care and other positive caregiving behaviors. Further research is needed to tailor the intervention to meet the diverse needs of HFCG and to incorporate HFCG-sensitive outcomes, allowing for more robust documentation of intervention effects.
Supplemental Material
Supplemental Material - A Mixed-Methods Analysis of Response to NOVELA Aamong Hospice Family Caregivers
Supplemental Material for A Mixed-Methods Analysis of Response to NOVELA Aamong Hospice Family Caregivers by Dulce M. Cruz-Oliver, Marcela D. Blinka, Gabrielle E. Milner , Katie E. Nelson, Marielle Bugayong, Nowell Durkin, Joseph J. Gallo, Debra Parker Oliver, Martha Abshire Saylor in American Journal of Hospice and Palliative Medicine
Footnotes
Acknowledgments
We would like to thank Gilchrist Hospice, AccentCare Hospice, BridgingLife Hospice, and their family caregivers for their participation in this project.
Author Contributions
All listed authors have sufficiently and significantly contributed to this study and the preparation of the manuscript.
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 Institute of Nursing Research (5U2CNR014637-09) through the Palliative Care Research Cooperative (PCRC) pilot project award. The content of this report is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
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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References
Supplementary Material
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