The Development and Preliminary Evaluation of the “SPA-LTC Voices” Video Series as a Means of Articulating a Palliative Approach in Long-Term Care Settings
Abstract
Palliative care has earned its place as a respected approach to medicine that focuses on quality of life, symptom management, a team approach, and family involvement, typically following the diagnosis of a life-limiting illness. To improve health equity, it is important to encourage the adaptation of palliative care practice and philosophy beyond hospices and within a range of care settings. To support further adaptation in long-term care, our research team Strengthening a Palliative Approach in Long-Term Care (SPA-LTC) created the video education resource “SPA-LTC Voices” to explore what a palliative approach entails in a long-term care context and to dispel persistent myths about palliative care. After consulting with palliative care experts and family caregivers, we designed a four-part series using a storytelling approach (i.e., presenting accounts of lived experience) within a three-act narrative structure (i.e., setup, tension, and resolution). We then employed an embedded intervention mixed methods design to pilot-test the acceptability of the video series and the outcome of knowledge transfer during structured interviews with 16 participants, who were either family caregivers (12) or healthcare providers (4). Integrated qualitative and quantitative findings confirmed potential for positive impact on knowledge transfer across both audiences, including an improved understanding of the values and practices involved in palliative care. Integrated findings also confirmed high acceptability of the narrative format and the diversity of the storytellers. Overall, this pilot research suggests that the “SPA-LTC Voices” video series holds promise as a tool to support education within long-term care settings.
1. Introduction
About one in five older adults globally receive support in a long-term care (LTC) home during the last several months of their life, a statistic that is anticipated to trend upward with population aging [1–3]. Accordingly, it has never been more important to focus attention on palliative care in the LTC sector. Palliative care emphasizes quality of life, symptom management, a team approach, and family involvement, clearly positioning communication between those needing and providing support as a cornerstone of practice. Yet, in LTC settings, residents and substitute decision-makers report that open discussions of serious illness and end of life (EOL) rarely take place [4–6]. Healthcare providers (HCPs) express discomfort about having these conversations, including uncertainty about how and when to initiate them [7]. Too often, they wait until residents are at the EOL and even then, hesitate [7, 8]. Failing to proactively identify and discuss EOL issues in LTC increases the risk of providing care that is not aligned with resident values, including unnecessary interventions [7, 9]. For instance, one systematic review identified a feeding tube utilization rate of 22% among people with dementia who developed difficulty swallowing, despite insufficient evidence of health and quality of life benefit [9]. Inadequate communication about EOL can also contribute to role uncertainty for legally appointed decision-makers and dissatisfaction with care for residents and their families [10, 11].
Significant efforts are being made to improve communication among residents, families, and HCPs. Communication aids have been developed to facilitate patient education and EOL decision-making for a variety of serious illnesses, such as kidney disease, heart disease, and cancer [12, 13]. In LTC, conversation-starter tools are being trialed to help residents articulate their values and goals in the event of a serious illness [11, 14], as well as to help substitute decision-makers do so with or for their family members [15, 16]. Additionally, visual representations of EOL trajectories for health conditions that are typically experienced in LTC have been designed to better prepare families for discussions with their HCPs [8, 16]. Such aids have proved effective in improving knowledge, engagement in planning, and satisfaction with HCP communication [17–20].
However, the existence of effective conversation-starters and aids does not mean they are consistently being used. Patients and HCPs have diverse preferences concerning how they access and share healthcare information [21]. Prior research suggests video resources have advantages for decision-making and advance care planning [22] and for impact on knowledge and attitude change [23]. From a practical standpoint, videos are a flexible medium; they are easily displayed on a television, a tablet, or a smartphone, and they are conveniently accessible by email, social media links, or shared during face-to-face interactions. Videos can also serve diverse needs in healthcare, ranging from modeling self-management behavior for specific diseases to providing information that facilitates making important health decisions [11, 24, 25].
With this in mind, our project team, which consists of members and collaborators of the research group Strengthening a Palliative Approach in Long-Term Care (SPA-LTC; https://www.spaltc.ca), developed a series of videos called “SPA-LTC Voices” that aims at educating a broad audience about the nature of a palliative approach in LTC and at facilitating important conversations about values and goals between residents, family caregivers, and HCPs. We then sought to evaluate the acceptability of these videos in a Canadian LTC context and to identify potentially useful outcome measures.
2. Materials and Methods
In this pilot study, we used an embedded intervention mixed methods design to evaluate the acceptability of a health communication resource (the “SPA-LTC Voices” series) for healthcare staff and family caregivers [26, 27]. We also assessed the potential of the resource to impact the outcome of knowledge transfer. Both acceptability and knowledge were measured. Qualitative findings were used to further explain what contributed to measured acceptability and knowledge transfer, and to facilitate comparisons between participant groups by drawing on the experiences they shared [27].
2.1. The “SPA-LTC Voices” Series
The “SPA-LTC Voices” video series was released in 2024 at https://www.spaltc.ca. To develop the series, we first sought input from people with relevant experience and expertise. To respect the priority of communication between the healthcare team and the family within a palliative approach, we included LTC residents and family caregivers who participated in a regional resident-family council, members of a provincial family caregiver-oriented community of practice that included bereaved family caregivers, and multidisciplinary healthcare professionals with experience in LTC. We then met with a videographer and a volunteer from the resident-family council to review consultant feedback and develop the video series. These meetings took place between March 2022 and July 2022.
Based on consultants’ advice, we designed a video series suitable for a broad target audience of LTC residents, their families, and HCPs. We also chose to film storytellers (i.e., people sharing their relevant lived experience) rather than actors portraying a script or a recitation of abstract information. This developed into a four-part series featuring personal stories from a resident, a family caregiver, a HCP, and members of a management team. These stories were told using a classic three-act narrative structure (i.e., setup, tension, and resolution). Setup included a short introduction of the speaker and the theme of the story. Tension was then built by describing a care situation that could either go well or poorly. Resolution was achieved by explaining that care situations ultimately went well and by providing a brief conclusion about how a palliative approach had helped. We maintained a consistent length of 3–5 min per video to facilitate audience engagement across a range of potential uses, including casual viewing, clinical interactions, or embedding in education [28].
To encourage a natural and conversational style, no prepared script was required of the storytellers; the only formal preparation on their part was to review their stories with a project team member prior to filming to ensure a match to the project scope. During filming, the storytellers were asked to describe one or more positive experiences related to a palliative approach in LTC to an off-camera interviewer. The storytellers were also briefly interviewed about their role in their LTC community, their conceptualization of “a palliative approach,” and their interpretation of other relevant terms (e.g., quality of life). To encourage the use of descriptive and specific language about the various components of a palliative approach, storytellers were asked to avoid using the term “palliative” itself. After filming, which took place in September 2022 (with additional footage collected in autumn 2023), the footage was arranged within the three-act narrative structure and edited for length. In one case, a storyteller preferred to use a fully scripted and rehearsed narrative that already adhered to the three-act structure. This narrative was preserved as told, with minimal editing for length, and no additional introduction or conclusion. In another case, two storytellers collaborated on one story; they were filmed separately, and then their footage was cut and spliced together with careful consideration of their emotional tone and overall message. An overview of the narrative structure of each video can be found in Table 1.
| Storyteller | Setup | Tension | Resolution | Core message |
|---|---|---|---|---|
| Kayley, a LTC resident | Kayley has just moved into LTC as a 16-year-old living with quadriplegia and finds herself missing experiences that previously contributed to her quality of life | Will busy staff be able to assist Kayley put on an awkwardly fitted outfit and attend a costume party? | Kayley attends the party in costume after HCPs support her in getting ready, and coming home is a big part of the excitement | A palliative approach emphasizes individualized, holistic care to support quality of life |
| Elaine, a family caregiver | Elaine’s mother’s dementia is progressing, and Elaine realizes she needs to adapt | Will the prior expression of Elaine’s mother’s core values continue to be honored by the family and HCPs supporting her through the late stages of dementia? | With the support of her mother’s HCPs, Elaine accepts that her mother’s health is changing and communicates her mother’s values. She and the HCPs work together to uphold those core values | A palliative approach promotes collaboration between family and HCPs for optimal outcomes. |
| Tyler, a care consultant | Tyler has the unexpected privilege of witnessing a special moment that speaks to the value of a palliative approach | Will an LTC resident’s ability to play music be recognized and celebrated by his community, and allow him to live life to the fullest? | A HCP recalls that the family has brought in the resident’s violin, and the resident tunes it up and begins playing. A spontaneous jam unfolds, with residents, family caregivers, and HCP all contributing | A palliative approach supports living life to the fullest, and a care culture that encourages the contributions of all members of the community |
| Mark and Laurie, members of a leadership team | Mark and Laurie are presented with a unique opportunity to support the needs, values, and goals of a dying person, but it will need rapid, coordinated action | Will it be possible to coordinate work across two healthcare sectors and within a LTC setting so that a woman who is dying can celebrate her favorite holiday one last time? | With a clear goal in mind, people at every level of care collaborate on timing, décor, and festivities to respect the particular needs, values, and goals of a dying person | A palliative approach includes commitment and coordination to respect a person’s needs, values, and goals |
2.2. Participants and Procedure
In February and March 2023 (coinciding with the active period of the COVID-19 pandemic), online 90-min individual and group interviews with LTC HCPs and family caregivers were held midway through production to inform the editing process. These interviews were conducted with the approval of the research ethics board of the University of Saskatchewan (BEH-REB 1872). All participants were English reading/speaking and 18+ years of age. Of the three family caregiver interviews, two were attended by five participants each and another by two. Of the two HCP interviews, one was attended by three participants, and another by one. Family caregivers and HCPs were all recruited by circulating project information and meeting links through LTC organizations or councils. Participation was voluntary and compensated with a $25 honorarium.
Each online meeting began by explaining the purpose and the format of the interview to participants, who then provided informed consent. Next, participants privately completed a survey to assess their baseline knowledge of a palliative approach to care. This was followed by a spoken introduction about a palliative approach to care, and an overview of the video series. Two of the videos were shown: the unedited video footage of a story describing one negatively framed care situation and one positively framed care situation (Kayley’s) and a long-form edit of another story containing samples of cutaway scenes with either animated graphics or supporting video (Elaine’s). Afterward, participants completed a second online survey about the acceptability of the video content and their knowledge about a palliative approach. During the ensuing interviews, participants were asked to discuss perceived strengths (e.g., what stood out positively, was relevant, or was liked) and weaknesses (e.g., what stood out negatively, was not resonant with their experience, or was disliked). We also inquired how they imagined the videos being used with residents, families, and HCPs.
2.3. Measures
Participant surveys included five principal measures. The first three were used to create a demographic profile of the participants. The two remaining measures were used to evaluate the video series.
2.3.1. Participant Demographics
Open-ended demographic questions covered age, gender, duration of experience in LTC, and, for caregivers, relationship type. Internet health literacy was assessed using the E-health Literacy Scale, an 8-item 5-point Likert-type scale [29]. Global health literacy was assessed through the single 5-point Likert-type item, “How confident are you filling out medical forms by yourself?” [30].
2.3.2. Acceptability
Acceptability of the video content was assessed using the average 5-point Likert-type rating across 14 scale items pertaining to general appeal (6 items), comprehensibility (3), perceived relevance (3), and perceived utility (2). Some items measuring general appeal were adapted from Reichlin’s 2011 study of an interactive decision-making tool for cancer patients [31].
2.3.3. Knowledge
Knowledge was assessed with 12 statements representing facts, myths, and overgeneralizations about a palliative approach (e.g., “A palliative approach to care requires stopping treatments”). These had a project-specific focus on the introduction of a palliative approach and the scope of the recorded stories. For most items, the response format was “mostly agree” or “mostly disagree.” For greater conceptual clarity, one item was presented in the inverse format, “Which of these phrases best captures the meaning of palliative care?” with responses including “An approach used to reduce suffering” or “An approach used when someone is dying.” Each response was assigned a 1 or 0 score based on consistency with the presented accounts of a palliative approach. Total scores were calculated and prorated to a score out of 100.
2.4. Analysis
Given the pilot study focus, we calculated descriptive statistics (i.e., mean and standard deviation) for the knowledge and general acceptability measures [32]. We also developed the qualitative description of interview results [33]. We integrated these two sets of findings to provide an overall sense of participant reactions to the videos, with special attention to potential areas of similarity and difference across family caregivers and HCPs [27].
3. Results
3.1. Participant Demographic Profile
All participants identified as women. One family caregiver (8%) was a parent of an LTC resident, one (8%) spouse, and the remainder (83%) children. The HCPs were all employed in permanent non-managerial positions. Both the family caregivers and HCPs had high global health literacy scores. HCPs also had high internet literacy scores, whereas family caregivers’ scores were marginal. See Table 2 for details.
| Age | Years of experience with LTC | Global health literacy (out of 5) | Internet health literacy (out of 40) | |
|---|---|---|---|---|
| Family caregivers (N = 12) | 65 (6.69) | 3.30 (2.39) | 4.43 (0.49) | 29.83 (5.78) |
| HCPs (N = 4) | 52.5 (12.01) | 19.25 (9.29) | 4.25 (0.50) | 36.00 (3.92) |
3.2. Knowledge Transfer
A comparison of participants’ responses to the 12 knowledge statements in the two online surveys suggests that watching the videos has potential to facilitate a positive change in knowledge (see Table 3). Likewise, during the discussion portion of the meetings, participants expressed a clearer and more accurate understanding of a palliative approach to care. Some participants stated they had previously believed that palliative care was similar to Medical Assistance in Dying (MAID), believing both emphasized a choice to hasten death by foregoing treatment, but the videos dispelled the idea that palliative care involves ending treatment and solely managing symptoms at EOL (Interviews 2 and 3). They explained that one way the stories helped them imagine what else a “palliative approach” could mean was by focusing on living with chronic health conditions (Interview 1). With this shift in emphasis, participants understood that a palliative approach can begin earlier than the last few weeks of life, as it involves supporting personhood and quality of life at any stage of the living–dying trajectory (Interview 5).
| Palliative care knowledge before viewing stimulus material (out of 100) | Palliative care knowledge after viewing stimulus material (out of 100) | Difference | |
|---|---|---|---|
| Family caregivers (N = 12) | 84.03 (10.33) | 90.97 (9.03) | 6.94 (10.56) |
| HCPs (N = 4) | 81.25 (7.98) | 93.75 (7.98) | 12.5 (10.76) |
Participants in Interview 1 also noted that the videos work best when seen together, since each one emphasized a different facet of a palliative approach: Kayley’s story highlighted the individual nature of quality of life, whereas Elaine’s story focused on the value of collaboration and communication between staff and family to support quality of life and drew attention to the importance of quality care at the EOL. An experienced staff member distilled the collective message of the video series in this way: “pain free, respect, dignity and love… I think that’s what most people want when they are dying” (Interview 5).
3.3. Acceptability
For family caregivers, the average acceptability rating for the video series was 4.49 (0.40) out of 5. For HCPs, it was 4.66 (0.35) out of 5. In the discussion, both groups underscored that it was compelling to see and hear people telling their own stories. A HCP in Interview 4, for example, said, “I liked the personal touch of the people talking…. The real story there kind of catches you.” Participants also provided feedback about the two storytelling styles piloted in the interviews: a scripted and rehearsed narrative (Elaine), and an unscripted interview (Kayley). Some participants preferred the spontaneity of Kayley’s story, yet both family caregivers and HCPs still gave positive feedback about Elaine’s, describing the fully scripted story as informative and emotionally evocative. One HCP reflected that, “[Elaine] was open and honest and speaking from the heart, and I think that touches people” (Interview 4).
Participants universally disliked elements of the videos that pulled the viewer’s attention away from the storyteller. One family caregiver explained that Kayley “has something really important to say … is there a way you can draw in on her and away from the plants?” (Interview 2). Likewise, participants found pilot footage of large-font scrolling quotations and animated scenes in Elaine’s video distracting (Interviews 2 and 3). In contrast, they responded well to a cut-away scene of Elaine’s hand over her mother’s photograph in a family album, describing this footage as “really beautiful” (Interview 2).
Participants also affirmed the value of featuring diverse experiences. Considering the stories shared by Elaine and Kayley, one viewer said, “Both of the stories were valuable, and it just shows the diversity in LTC too, because there is all ages” (Interview 4). Similar comments were made in Interview 3. Though positive about the diversity in age and ability, participants noted that cultural diversity was not as well-represented and recommended keeping this in mind to further develop the series (Interview 1).
3.3.1. Perceived Relevance
Many of the participants discussed how the videos evoked memories of their past care work, whether as family caregivers or HCPs. After viewing Elaine’s story, participants who had supported parents living with dementia expressed that the story mirrored several aspects of their own caregiving journeys. For them, it affirmed the conviction that they had an essential role in supporting personhood and a holistic approach to care. One participant remarked, “the communication between the staff and [family caregivers] is the key to making their quality of life the best” (Interview 3). HCPs, too, perceived the message of collaboration as relevant; a participant in Interview 5 who also had family caregiving experience in a palliative care context said, “you get to know your nurses, you get to know your doctor, and they become like friends and family if you are there long enough. The way they treat you, even the little things, counts as so much.”
I did not have that same experience of support, and team, and looking at all dimensions of the person. So, I really appreciate having that as something to aspire to. And I guess my only sort of caution, and this is unavoidable, but not everyone has that experience, so it may be sort of – I don’t know if a trigger is the right word? It may evoke some emotion in some people who may think, my loved one did not pass this way (Interview 2).
I wouldn’t want the people who work in LTC to watch that and say, ‘aren’t we wonderful!’… Those were good stories, but [the experience of LTC is] not all good. I guess the issue is, how do you get it across that we have to work towards this? (Interview 1).
Participants resolved this debate by concluding that it is important to illustrate what things could be like to pave the way for change. The video series, they argued, “will raise expectations, it will create that dissonance and that tension” (Interview 1).
Whereas many of the family caregivers wrestled with this dissonance, HCPs easily acknowledged that not all care experiences are as ideal as those depicted in the videos. To them, the positive stories were validating; the videos illustrated that the extra time and effort expended by staff to improve a patient’s quality of life are appreciated. They stated that this increased their motivation to be resourceful in responding to residents′ needs (Interviews 4 and 5). However, in addition to Kayley’s heartwarming story about HCPs taking extra time to help her to get ready for a costume party, the pilot footage also included an account of her difficulty transitioning from showering every day to bathing once a week in LTC. Many of the HCPs responded to the latter story defensively. One worried that linking the idea of daily showers to quality of life sets up an unrealistic expectation (Interview 5). Another blamed the time pressure of the job (Interview 4). One of the HCPs found value in the juxtaposition of Kayley’s positive and negative stories, by “showing how little things [like showering] can impact you, and yet how helping her with a costume made her day, week, maybe even month’s quality of life” (Interview 5). In her view, both stories illustrated the need to recognize what things are uniquely important to each resident and to take the extra time to make those things happen.
3.3.2. Perceived Utility
Participants believed viewing these videos would be beneficial for residents and families across the care trajectory, from preparing for LTC to EOL (see Table 4). They similarly envisioned a use for the videos in the training of staff, particularly in orientation, continuing education, and as part of quality improvement initiatives (see Table 5). Overall, HCPs said that the videos were a good reminder of earlier healthcare training, underscored the significance of their work, and conveyed that family caregivers value their efforts. Meanwhile, family caregivers praised the videos for foregrounding the importance of a personalized approach to care, as well as collaboration between residents, HCPs, and family caregivers (Interviews 1, 2, and 3).
| Point in the care continuum | Proposed use |
|---|---|
| Preparation for long-term care | Some HCPs and family caregivers thought it might be useful to have some exposure to a palliative approach as part of a general information package provided prior to a move to long-term care (Interviews 1 and 4) |
| Move-in | While some HCPs (Interview 4) contemplated using this resource to introduce a palliative approach when a resident moves to long-term care, most HCPs and family caregivers advised that move-in is not a suitable time, since there are already overwhelming emotions about this care transition (Interviews 1 and 2) |
| Changes in health | Both HCPs and family caregivers believed that discussions of changes in a resident’s health provide opportune moments to initiate a conversation about a palliative approach. They advised making sure there is a point person with whom to follow up (Interviews 1, 2, 3, and 5) |
| At the end of life | A HCP with family caregiving experience also commented that Elaine’s story would have been very helpful to have near the time of her parent’s death, as a guide for this part of the journey (Interview 2) |
| Proposed use | Description |
|---|---|
| HCP orientation | Both family caregivers and HCPs believed incorporating the videos at orientation would provide exposure to the value of collaboration between residents, HCPs and family caregivers (Interviews 3 and 5) |
| Continuing education | HCPs imagined incorporating the videos into short-format staff education (e.g., “huddle talks”), annual education renewal days, or palliative care education days (Interviews 4, 5, and 6) |
| Quality improvement | One or more videos could be viewed with active or bereaved family caregivers as part of a co-design approach to improving palliative care: “[Ask] questions like, ‘What was your experience? Was it like this? How could we work toward an environment that’s more like this?’” (Interview 1) |
| Practice resource hub | Some HCPs and some family caregivers with HCP experience noted that health care system policies or standards guiding palliative care could reference available resources like the videos (Interview 2), and that it would be ideal to have a resource hub for one-stop access to a range of supports (Interviews 1, 4, and 5) |
4. Discussion
An integrated palliative approach in LTC is a response to public interest in improving palliative care access and equity [34]. It aligns with palliative care frameworks emphasizing person- and family-centered care, a holistic approach, quality of life, accommodating diverse values about advancing illness and death, and integrating a palliative approach across the care trajectory [35]. In this pilot study, the “SPA-LTC Voices” series facilitated access to a common language and understanding about a palliative approach to care. Across all interviews, the videos functioned to open up a space for talking about a person’s needs, and how they could best be supported as health changed toward EOL, rather than maintaining a more limited focus on the futility of treatment or the proximity of death. This potential for positive change in palliative care knowledge and understanding, the most promising finding of our preliminary research, substantiates the educational value of the “SPA-LTC Voices” videos across a broad audience. There was also clear evidence that this shift in understanding can be measured.
There was some evidence that the narrative structure of the resource facilitated these outcomes. Storytelling, ubiquitous across cultures, is associated with educational, behavioral, political, and social impacts [36–39]. Stories that include nuanced detail about a series of events invite the audience to reflect on similarities and differences between the characters’ experiences and their own situation or expectations [39], and these reflections can result in a change in knowledge, attitudes, beliefs, behaviors, values, and motivation to action [40]. Indeed, the “SPA-LTC Voices” stories helped participants develop a personal understanding of a palliative approach in LTC by encouraging an empathic connection with the storytellers in the videos and by inviting comparison between the storytellers’ experiences and their own. Furthermore, by sharing stories told by diverse people, the video series challenged stereotypes about what constitutes a palliative approach, and the abstract concept of palliative care was presented in a more concrete and understandable manner [40].
With this deeper, more personal understanding of what constitutes a palliative approach to care, participants in this study became enthusiastic about the potential to overcome the stigma associated with the word “palliative,” and its strong association with “the very end of life” among the public and HCPs [41–44]. They envisioned using the videos as a tool to help correct any misgivings about palliative care among staff and families in LTC homes and to encourage viewers to consider how a palliative approach could be used to improve quality of life from the beginning of a resident’s life in an LTC home to their death. By correcting misconceptions about palliative care, the videos may help to mitigate the fear or sadness that is often evoked when a family member hears the word “palliative,” and to overcome the reluctance of HCPs to discuss palliative care with residents and families. The videos therefore aid in portraying the value of a palliative approach and how it fits within the person-centered culture to which LTC aspires.
There was also good evidence of the acceptability of a narrative approach to education among HCPs and family caregivers. Nevertheless, the aspirational nature of most of the pilot footage did raise concerns about creating unrealistic expectations of what LTC residents and families can expect, including what HCPs are realistically able to deliver, especially in a global context of strain arising from healthcare work shortages and pandemic recovery. This research showed that from a family caregiver perspective, a tension between ideal outcomes and experienced shortcomings can feel supportive, since it legitimizes concerns and opens a new opportunity to facilitate discussion about steps that could be taken to improve quality of care. In reciprocal fashion, the success of many healthcare quality improvement efforts rests on the activation of the values underpinning the work [45], and our research suggested that the videos can, indeed, affirm HCPs’ value-led contributions to quality care, supporting their intentions to continue.
As participants reflected on how the videos might be used, both HCPs and family caregivers recommended early use, including in orientations to the home’s philosophy and services (whether for families or HCPs beginning work). They also proposed using the videos in ongoing education and as needed to address specific needs. Introducing a palliative approach very early on, far before a person reaches EOL, can open new opportunities for communication between HCPs and families, facilitating a common understanding of needs, values, and goals [8, 10, 11, 16]. This collaborative dynamic can improve capacity to address questions as they arise, and to mutually recognize, discuss, and act upon changes in needs or goals [4]. Collaborative communication is the hallmark of a palliative approach [46] and using videos and other communication to support it across the care trajectory can facilitate mutuality in upholding individualized plans, ultimately supporting positive outcomes including good working relationships, satisfaction with healthcare communication, and perceived service quality [4].
The development of this video series was strengthened by the advice of family caregivers and interdisciplinary clinician-scientists, who guided project content and focus. The additional contributions of participating family and HCPs improved the final product by reducing distractions (i.e., removing animated illustrations and text); confirming the value of the identified key messages; confirming the resonance of the three-act narrative structure; and affirming the value of sharing examples of strong practice to guide quality improvement. Additionally, the use of a mixed methods (embedded intervention design) approach to pilot testing pointed to the value of formally evaluating the impact of the videos on knowledge transfer in LTC settings and also suggested a range of potential uses to be evaluated. One limitation of this research is the project-specific focus of the knowledge outcome measure. Future evaluations should ideally incorporate other measures of knowledge to confirm the construct validity of the scale. This research also relied on a small sample. Although this is appropriate for pilot stage research, results should not be assumed as generalizable until there is further evaluation in clinical contexts. Similarly, at the pilot stage, evaluation often focuses on efficacy, or performance under ideal conditions. Given the positive results of this pilot research, additional testing of the resource should focus on effectiveness, or performance in real-world conditions, with a larger sample and using a controlled trial approach. Future research might also compare the relative effects of each story within the series or examine effects by audience type or health literacy level.
5. Conclusions
By piloting “SPA-LTC Voices” with family caregivers and HCPs, our research team demonstrated potential for the positive transfer of knowledge about the nature of a palliative approach to care through the video series. After viewing the material, participants were able to recognize the importance of palliative care across the care trajectory, rather than only at EOL, and better understand its key precepts, such as the individualized nature of quality of life and the importance of communication and collaboration between residents, families, and HCPs. Participants also conveyed the acceptability of the narrative format and the diversity of storytellers in the videos. For some participants, the stories reflected their own experiences in LTC, whereas for others, the videos created a striking dissonance between the positive experiences portrayed and their own less ideal experiences. In both cases, the videos were deemed relevant and useful for presenting ideals of personalized care and collaboration to which families and staff could both aspire. The “SPA-LTC Voices” video series is an educational tool that has the potential to facilitate difficult and often-avoided discussions around personal values and quality of care in LTC settings, educate a broad audience of residents, families, and staff, and align their expectations for care.
Conflicts of Interest
The authors declare no conflicts of interest.
Funding
This project was supported through funding from the Saskatchewan Health Research Foundation (#5083).
Acknowledgments
We thank Kayley, Elaine, Tyler, Mark, and Laurie for sharing their stories; Rebeca Pereira and Katherine M. Ottley for liaising with storytellers; members of the Saskatchewan Long-Term Care Network, the Saskatchewan Health Authority Long-Term Care Advisory Council, the SPA-LTC family advisory panel, and Phil Carverhill (psychology), Heather Ward (medicine), and Roslyn Compton (nursing) for valuable consultation about the development of the video resource; Katherine M. Ottley for coordinating the survey data collection; Susanne McColeman for assistance with manuscript review and formatting; and One Black Dog Media for creative work and vibrant film footage.
Supporting Information
“SPA-LTC Voices” Video Series.
Open Research
Data Availability Statement
Data are not available due to privacy/ethical restrictions, in accordance with REB agreement.
