Owner-based reports of dogs presumed to come from commercial breeding kennels (CBKs) suggest high levels of fear in this population. Fear in kenneled dogs is a serious behavioral welfare concern as it may lead to both acute and chronic stress. Novel social and non-social stimuli have been shown to elicit behaviors associated with fear in animals. New knowledge on the levels of fear in dogs from CBKs could be used to further refine protocols intended for assessment of welfare in CBKs and to improve breeders’ management practices. The aim of this study, therefore, was to evaluate how dogs from CBKs reacted to social  and non-social  stimuli, and to perform a preliminary evaluation of how these responses might be used as indicators of dogs’ overall socialization levels in kennels. Results revealed that dogs had primarily mildly fearful responses to the stimuli presented. These findings are encouraging as extreme fearful reactions were rarely recorded. Nevertheless, there is a clear margin for commercial breeders to improve the socialization protocols in their kennels to better incorporate both social and non-social stimuli.p < 0.01). These findings suggest that the cone elicited more fear-related behaviors than the dog statue and stranger. Given these results, in addition to socializing their dogs to unfamiliar people and other dogs within their kennels, commercial breeders should be encouraged to increase the exposure of their dogs to more diverse novel stimuli to reduce non-social fear and support the welfare of dogs while they reside in the kennel and when they transition to new homes.Understanding the behavioral welfare of dogs in commercial breeding kennels (CBKs) is important for improving breeders’ management practices as well as dog welfare. In the current study, breeding dogs from CBKs were exposed to novel stimuli to evaluate their behavioral responses, with emphasis on indicators of fear. Subjects were presented with a standard stranger-approach test, a traffic cone, and a realistic dog statue. Sixty dogs were exposed to the three stimuli and behavioral responses were scored using an ethogram developed for this study. Dogs spent significantly more time investigating the environment, staying further away from the stimulus, and they took longer to approach and investigate when presented with the cone than with the dog statue or stranger ( Until recently, studies focusing on the behavior and welfare of dogs from commercial breeding kennels (CBKs) were scant . While rAn animal’s welfare can be greatly impacted by high levels of fear or a predominantly fearful emotional state, which may lead to both acute and chronic stress ,15. DogsBoth social and non-social stimuli have been shown to elicit behaviors associated with the flight or fight response in dogs, with social stimuli provoking a higher frequency of fear-related behaviors . HoweverThe procedures described were reviewed and approved by the Purdue University Institutional Animal Care and Use Committee (PACUC 1809001796), and permission to visit the kennels and record the videos was granted by the owners prior to the commencement of the study.n = 60) were randomly selected from a pool of 447 dogs from 26 CBKs, located across the Midwestern United States. These subjects were part of a larger data collection effort for another study (ongoing) which aimed to investigate management and welfare risk factors affecting rehoming outcomes in retiring dogs from CBKs. Within that larger study, dogs were assessed using a refined version of the FIDO tool [The subjects for the current study . Physical health data collected using the FIDO tool  showed o2, mean = 2.3 m2, SD = 1.2 m2), varied access to the outdoors , and access to separate exercise areas . The breeders enrolled in the original study volunteered their participation, and their kennels all exceeded minimum space and exercise requirements for dogs mandated by U.S. federal law [The sampled dogs were from 20 different commercial breeding facilities, representing different housing systems, varied flooring types/materials , indoor pen sizes  to ensure availability for scoring. As the indoor pen size varied in dimension as previously described, and because dogs were free to move within the pen space , the distance between the stimuli and the dog at the start of the test varied. The first stimulus–response test conducted was a three-step stranger approach in which the tester: (1) opened the pen door with a sideways orientation and without making direct eye contact with the focal dog, (2) offered a treat to the dog directly from her hand, always maintaining a sideways orientation, and (3) offered a second treat from one hand while reaching to gently touch the dog with the other hand. Finally, the tester stepped back from the pen and closed the gate (adapted from ). The sen = 9) not included in the analysis.Each of these tests was video recorded using a digital video camera (Sony Handycam HDR-CX405) mounted on a tripod. Videos (3/dog = 180 video clips) were subsequently analyzed using the behavioral scoring software BORIS (Version 7.8.2). The dogs’ behaviors during each test were analyzed using an ethogram based on the available literature on fear and stress in dogs ,15,17. TAll statistical analysis was performed using SPSS . To assess intra-rater reliability, nine subjects were randomly selected (15% of the sample), and all three reaction tests for each subject were re-analyzed from video by the same observer two months after initial scoring. Levels of agreement were determined using Intraclass Correlation Coefficients and interpreted as follows: ICC < 0.50, poor agreement; 0.50–0.75, moderate agreement; 0.75–0.90, good agreement; >0.90, excellent agreement .p < 0.016).For the following analysis, each dog acted as its own control. Wilcoxon sign-ranked tests were conducted to compare time spent at the front of the pen versus the back of the pen. This was used to gauge the general willingness of each dog to engage with or avoid the stimulus  positioned at the front of the pen. Kruskal–Wallis analysis of variance tests were conducted to compare the behavior of dogs across the three stimuli. For significant results, Wilcoxon tests were used for post hoc pair comparisons, applying Bonferroni correction . The breeds of dogs were also recorded; however, there were not enough subjects in each breed to have the requisite power to perform breed comparisons. A Wilcoxon sign-ranked test was used to compare behavioral differences of male versus female dogs. A simple logistic regression was calculated to indicate any possible associations between the behavioral variables and the dogs’ ages and pen sizes.Descriptive analysis was used to characterize behaviors that were only seen in the stranger approach test: specifically, the “affiliative approach to tester”, “contact/no contact”, and “takes treat” data. Finally, cross tabulations were created to explore whether showing higher levels of sociability towards unfamiliar people was associated with fewer signs of fear towards non-social stimuli. This was performed by comparing each dog’s “red”, “yellow”, or “green” classification from the behavioral portion of the previously conducted FIDO testing with their response to the cone and dog statue.Due to their very low occurrence, some behaviors were excluded from the analysis, including “growl”, “whine”, “body shake”, “yawning”, and “shivering”. Similarly, “biting” and “teeth baring” were never seen, and “pacing” and “circling” were only noted two and three times, respectively, out of the 180 observations. Behaviors associated with more intense fear reactions  were observed in two dogs (less than 2% of the sample) during the stranger approach test, in three dogs (less than 5% of the sample) during the response to the dog statue test and in four dogs (less than 7% of the sample) during the response to cone test. Thus, these behaviors were also excluded from the analysis. Behaviors not included in the analysis are indicated in Intra-rater reliability analysis confirmed a good agreement (0.76), on average, across all behavioral variables. An excellent agreement was observed for 58.8% of the variables analyzed (10/17), while the remaining variables showed a moderate to good agreement . No significant difference was found for time spent in each portion of the pen when dogs were introduced to the other two stimuli. However, on average, dogs spent more time at the back of the pen  with the dog statue  and more time at the front of the pen  during the stranger interaction .When analyzing the time spent in the front or back portions of the pens during each stimulus–response test, a Wilcoxon test revealed that dogs spent significantly more time in the back of their pens, compared to the front, when introduced to the cone , “sniffing the stimulus” , “latency to approach and interact with the stimulus” , “low” posture , “rigid” postures , and “walking” behaviors . Post hoc comparisons revealed that the subjects spent significantly more time “investigating the environment” when presented with the cone compared to the dog statue or the stranger . All other associations were non-significant.Further analysis revealed no significant differences in behavioral responses for all stimuli between male and female subjects. Pen size was found to influence a dog’s position within the pen: dogs in larger pens  spent less time in the back of pen compared to dogs in smaller pens . During the stranger approach test, the tester attempted to give the subject a treat from their hand as well as to touch the subject with their hand. In this interaction, the tester was able to give the dog a treat directly 30 times (50% of subjects) and to make contact 25 times (41.67% of subjects).Cross tabulations revealed how dogs’ reactions to the cone  and the The goal of this study was to evaluate the effects of different stimuli in eliciting social and non-social fear in a population of dogs from CBKs and to perform a preliminary evaluation of how these responses might be used as indicators of dogs’ overall socialization levels in kennels. In this study, we recorded intense fear responses, such as freeze, escape attempt, or aggression, elicited by the three selected stimuli in very few animals (maximum 4/60 dogs). Instead, milder signs of fearful reactions were observed, including preferences for the back portions of their pens away from test objects, actively avoiding and increasing the distance from the stimuli, taking longer to approach and interact with, or complete failure to come into contact with the stimuli. The absence of extreme or even relatively strong fear responses may indicate that these dogs were somewhat able to cope with the challenges presented and, in turn, suggests that even though there is ample space for improvement, some level of effective socialization may have already taken place at these kennels. It is important to note that these results may also have been mitigated by the test design, which was not intended to provoke intense fear responses. For completeness, it should be mentioned that the response recorded toward these stimuli may be exclusive to this study population. Due to the lack of an external control group, it is not possible to determine if the type of response these stimuli would elicit in other populations (such as pet and shelter dogs) differs from that of dogs from CBKs. This goes beyond the scope of this paper as our aim was not to compare the prevalence of fear behavior in CBKs to an expected outcome; however, it is something to keep in mind in future applications of this test. Finally, the dogs used in this study came from breeders who volunteered to participate, so results may not be reflective of all U.S. commercial breeding kennels.From our analysis, the orange traffic cone, a non-social stimulus, triggered significantly higher rates of fear-related behaviors compared to social  stimuli, such as the stranger and the dog statue. The dogs’ fear when introduced to the cone was expressed through more time spent in the back portion of the pen away from the cone (which was placed in the front portion of the pen). This position in the pen was not observed as frequently when the dogs were presented with the other two stimuli. It should be considered that not only was the back portion of the pen further away from the stimulus, but it typically gave dogs access to outdoor runs. It is therefore likely that dogs showing a preference for the backs of their pens may have been looking to escape even though they were not actively scratching at the doors. A second indicator of the uneasiness provoked by the cone was that dogs spent more time investigating the environment than the cone. While dogs may spend a considerable amount of time investigating new environments, the only new environmental element presented during this test was the cone itself. This extended activity may, therefore, have been a type of redirected investigative or coping behavior , suggestThe dog statue elicited a different set of responses from the cone and stranger. Dogs approached the statue significantly faster than they approached the other stimuli. Given that the statue was a realistic reproduction of a life-sized conspecific, it is likely that the dogs’ first reactions were similar to those experienced during a social encounter with a conspecific, i.e., social investigation was the immediate response triggered. Subjects spent more time “sniffing” the dog statue when compared to the other two stimuli. Furthermore, dogs that explored the statue were more often observed in either a “lowered” or a “rigid” posture than those that explored the other two stimuli. Such rigid and lowered postures are typical in agonistic interactions, suggesting that dogs may have initially perceived the statue as an unfamiliar conspecific. On the other hand, a “lowered” posture could indicate either a submissive affiliative behavior, an attempt to solicit social interaction in a non-threatening manner, or maybe a state of fear. Unfortunately, the nature of our study did not enable classification of the emotional states of the dogs during such interactions. However, it should be considered that, while some dogs reacted in an affiliative manner during the first half of the test, they may have switched to fear behavior upon failure to elicit an appropriate social response from the statue or after realizing that this stimulus was actually an inanimate object, like the cone. This is in line with previous studies using fake dogs as proxies for unfamiliar dogs in dog–dog interactions. Barnard et al.  found thThe stranger approach test elicited the lowest level of “walking” behavior compared to the other stimuli. In addition, when the stranger was present, dogs spent more time at the front of the pen  and they spent less time moving away from the stranger compared to the cone stimulus. This suggests that the dogs were less fearful of the stranger than the cone. However, it is interesting to note that in the stranger test, the “latency to approach and interact with the stimulus” was similar to that of the cone and was significantly higher than that of the dog statue. This could indicate that the stranger elicited a greater level of fear or a greater level of conflict behavior compared to the dog statue. This finding is further supported by the reduced amount of time dogs spent sniffing the stranger compared to the dog statue. Whether the level of fear induced by the stranger was due to insufficient socialization of these dogs to unfamiliar people or whether it was due to the unfamiliarity of the test situation and the movement of the tester while performing the test is unclear. During the stranger approach tests, the tester was only able to hand-feed a treat to 50% of the dogs, which indicates that many of the subjects were not comfortable enough in the presence of a novel person to approach and take a treat. Additionally, the tester was only able to touch 25 of the 60 dogs, suggesting that the majority were not comfortable with a stranger slowly reaching out and attempting to touch them. Although these dogs were handled daily by their caretakers, it is possible that many were not sufficiently exposed to or handled by unfamiliar people often enough for them to generalize their social responses to new people. In a pilot study carried out by this group (unpublished), it was observed that some dogs reacted fearfully to strangers, even though they were highly social toward their own caretakers. For successful rehoming outcomes, it is critical that dogs are able to generalize positive perceptions of their interactions with their caretakers to new people to whom they are exposed to avoid being chronically distressed. The implementation of effective socialization protocols in CBKs may, therefore, help to achieve this goal. Currently, our research team is investigating if brief daily caretaker interaction may have an effect on the dogs’ behavior, not only toward the caretaker but also, by generalization, toward unfamiliar people. If successful, this could be an easy-to-implement protocol with great beneficial impact.The cross-tabulation analysis allowed for comparison of a subject’s behavior during the cone and dog statue reaction test and their stranger approach RYG classification. When presented with the cone, dogs categorized as “red” showed greater average durations for fear-related behaviors, such as gaze avoidance and lowered postures than dogs scored as “yellow” or “green”, as well as longer latencies to approach and interact with the stimulus. In contrast, dogs in the “green” category spent a greater average duration performing behaviors such as play, sniffing, and neutral posture than did dogs in other categories. Collectively, these findings support the idea that “green” dogs had lower levels of fear when exposed to the cone stimulus than the dogs in the “red” category. Similarly, when exposed to the dog statue, dogs in the “red” category, on average, spent more time performing gaze avoidance and maintaining a low posture, and demonstrated a higher increased latency to approach and interact with the stimulus than dogs categorized as “green” or “yellow”. When presented with the dog statue, dogs in the “green” category exhibited play behavior, which was completely absent in the dogs scored as “red” or “yellow”. This again suggests that “red” and “yellow” dogs had greater levels of fear in the presence of the dog statue than dogs in the “green” category. It should also be noted that all categories had a high average duration for “sniffing” behavior when presented with the dog statue. This suggests that most dogs were highly interested in the stimulus, regardless of their RYG classification. This observation may have practical applications: a high prevalence of “red” dogs in the kennel may indicate higher likelihood of generalized social and non-social fear in a population. If future experiments confirm this association, this very brief stranger approach test may be used as an easy initial screening tool before performing more comprehensive behavioral assessments.Although high levels of fear may be a consequence of poor or absent socialization practices in the kennels, it is important to note that a range of different factors may play a role in shaping fear responses. These include genetics, physical health, handling and breeding practices, exercise, conspecific interactions, parity, breed and more ,28,29,30A systematic data collection and risk analysis that combines animal, resource, and management metrics could help move toward a reliable quantitative assessment of fear and identify key areas for improvement for dogs in CBKs.Findings from this study revealed that the cone stimulus elicited the greatest levels of behaviors indicative of fear than either the dog statue or stranger. It is important to reiterate, however, that overall, dogs had primarily mildly fearful reactions to the cone and that behaviors suggesting extreme fear or aggression were rarely recorded. Both of the other stimuli (the stranger and the dog statue), although less apparently intimidating, still provoked a certain amount of fear in a moderate portion of the study population. These findings, overall, are encouraging, although they also highlight a continued need for improvement. What constitutes a minimum to optimal amount of socialization in dogs has yet to be determined ,32. Howe


Not because of the unexpected global pandemic, but because of the emergence of educational technology and pedagogical innovation, the ways of teaching and learning have been switched to technology integrated modes such as blended and flipped learning which is more than changing to online from face-to-face. Yet, many institutes, which rely on a conventional residential teaching mode or use learning management systems (LMS) as an additive tool, are further struggling to adjust to the new environment. In this paper, we argue that the identity changes of three components, instructor, learner, and LMS are inevitable for authentic online teaching and learning. By applying conceptual frameworks for the identity changes with four sequential levels, we evaluated Blackboard course sites (n = 53) and analysed course evaluations (n = 41) from a university that remained holding a traditional classroom mode and using an LMS in a non-integrated way. As a result, only a few courses appeared at higher levels of the identity changes. To integrate the identity changes in online learning and teaching, we argue that an LMS should be designed and managed as a learning community; both instructors and learners should be repositioned as co-participants; and they should work together to build a post-learning community by practicing community membership. It has been a long time since technology integrated teaching and learning was adopted in higher education—In fact, the word ‘e-learning’ was coined in 1999, and most major universities in Western countries have used a Learning Management System (LMS) as part of their formal educational activities since the late 1990s and developed blended and complete online programs Cross, . Yet, onThe changes could develop great resistance which also results in tokenistic professionalism at best which is focused on functional convenience: Using an LMS as a digital depository and/or a bulletin board, offering self-learning activities, structuring a course based on one-to-many  interactions, and/or the absence of teacher presence in communication and collaboration  and course evaluations (n = 41). Third, we identify their perceptions of and experiences in the identity changes and address challenges that prevent the identity changes and thus suggest pedagogical recommendations for effective identity changes.a leader who demonstrates a role model of active participation, a coach who encourages learners to create a team, a facilitator who takes responsibility for learner success and engagement, and a communicator who fosters communication and collaboration. A similar study is also found in Bonk et al.’s study  learner identity is determined by relevant learning activities that highlight interaction, communication, and collaboration; and (c) an LMS is designed and used for collaboration and group work. In the first phase, commencing, learners are getting started with group work via multiple communication tools to understand activities, review learning resources and practise communication tools. The instructor’s primary roles are to coordinate learner engagement and to motivate learners to be ready for quality group work. In the second phase, practicing, learners practise collaboration skills in group tasks. While the instructor roles continue, the motivator role is replaced with a master learner role which is to facilitate group work and role guide for quality collaboration. In the third phase, conducting, learners are focussed on group projects through online meetings and artefact development. Collaboration tools embedded in an LMS, and external communication tools are fully used. In this phase, the instructor role is switched to a counsellor who ensures that learners undertake group work through participation and involvement, and both instructor and learners attend meetings, review recordings, and discuss work progress. In the last phase, celebrating, learners implement group presentations using a web conferencing tool and finalise their projects. The instructor’s coordinator role is back at this stage, while they hold coordinator, counsellor, and motivator roles.Parra  suggesteThe three frameworks not only present what things, aspects, and values instructors should prepare, coordinate, intervene, and facilitate in online learning and teaching but also explicitly indicate their identity is transformed at each stage/phase. Their linearly and sequentially structured stages/phases also reflect the changes of learner engagement in learning activities as per the amount of interactivity which continues to increase throughout a course until groups of learners achieve knowledge co-construction, and individual learners attain full membership. Furthermore, the amount of interactivity determines the extent to which an LMS becomes a learning community. Therefore, it is legitimate that such identity changes of instructor, learner, and LMS are considered the barometers of authentic online learning and teaching when each change is synthesised and articulated in a course. Table The three frameworks indicate that the identity changes of the three components towards knowledge co-construction in a group, which is regarded as being equivalent to a learning community where the changes of membership occur. First, in the beginning of a course, membership remains undefined and inexperienced, and this pre-membership stage is aimed at ensuring that the members are aware of course expectations through communication channels that the instructor predesigned. Second, familiarising with a customised LMS and learning objectives is focused to facilitate learners to build their pre-membership into semi-membership through interactive activities of individuals and groups. Third, when learners are fully engaged in learning through collaborative knowledge construction and inter-group interactions, they become full members of the learning community. Yet, fourth, their membership remains inside the community unless their relationship building moves towards outside it, or outer-group involvement is facilitated to practise their authentic membership. This means that when both inward and outward membership are promoted, a sense of belonging and community can be maximised, which enables learners to advocate learning outcomes against outer communities, which results in authentic ownership and authorship of learning.Based on such conceptual understandings of the identity changes and formation, online courses can be evaluated as to whether the identity changes occur, and thereby the authenticity of online learning and teaching is assessed. Tables We collected study samples  from an American college whose education type was a traditional residential mode and adopted an LMS in a non-integrated way before the COVID-19 outbreak. The college consists of the five departments, and we accessed 53 Blackboard course sites offered in the spring semester 2020 across the departments as follows: Applied Mathematics and Statistics (n = 9), Mechanical Engineering (n = 7), Technology & Society (n = 11), Computer Science (n = 13), Business Management (n = 7), and Social Science and Humanity (n = 6). Of 53, we were able to access 41 course evaluation results where student written feedback was evident. In this qualitative research, we secured the study findings that were reliable and credible which is called trustworthiness . In practice, the degree of consistency between concepts  and the confidence with findings are critical for trustworthiness in our two sets of data collection and analysis: Blackboard course sites and course evaluations .First, Blackboard course sites. We theoretically verified the consistency of the identity changes by building conceptual frameworks through a review of literature . Although there were a few, ‘participant identity’ was evidenced in some courses where discussion boards were arranged and facilitated; ‘Constructor/collaborator identity’ appeared in some other courses where group projects were instructed and managed through real-time conferencing and real-time document editing tools ; and ‘Collaborator/advocator identity’ was observed in one course only where multiple communication and collaboration tools were used to build a digital presence in the networks. Such learner identities were also consistent with the instructor identities, as presented in Table When the instructors were engaged in communication, interaction, and collaboration, their identity appeared on the Blackboard sites as ‘announcer’ (83%) who informed the updates of learning materials and resources. ‘Coordinator’ was evidenced in the announcements, which informed instructions for tasks as part of summative assessment . By contrast, a few courses showed evidence of the higher levels of the instructor identities. In the courses, learner-to-learner communication, interaction, and collaboration were structured in tools, and the instructors not only provided what individual learners and groups of learners were supposed to do for quality engagement but also participated in the activities. In particular, it was observed that one course promoted and facilitated a sense of learning community by letting groups of learners to produce artefacts and share on a YouTube channel and interact with viewers, and interactions with peer learners and external viewers were part of both summative and formative assessment.The evaluation indicates that the LMS was mostly used as a digital depository and/or a bulletin board; the learner identity remained passive learners; and the instructor identity mostly appears as an announcer. Against the identity formation levels in Table The thematic analysis of 41 course evaluations discovered perceptions of online learning, complaints against instructors, and expectations of online learning. The student comments are directly associated with quality communication, interaction, and collaboration, which also indicated the ways that Blackboard should be used, and perspectives that instructors need to reconsider for authentic online teaching and learning.First, the majority of the learners perceived that online courses were different from conventional ways of learning courses (in-person class). Learners stated, “online class limits students from understanding the class material better” and “This course turned out to be very difficult after it changed to online”.Second, the majority of the learners also indicated that they experienced difficulties in asking questions in a prompt manner during online classes, communicating with peer learners for group work, and completing examinations. They provided the reasons: “the class with pre-recorded lectures”, “the traditional format of the exam”, “no interaction opportunities using technologies on Blackboard”, “no instruction on how to organize group meetings in the course”, “the ppt files he reads on class”, “shows videos in class”, “does not communicate with students”, “doesn’t reply to student’s email”, “students tend to remain passive by not turning their video camera”, and “hard to ask the instructor questions when we have initiated our group activity”. These reasons can be classified as the three identities: (a) the Blackboard sites and technological tools were not organised for communication, interaction, and collaboration; (b) the instructors were focused on knowledge transmission and acquisition; (c) the learners received no instruction for their active engagement in online tools. For these reasons, they remained inactive and passive.By contrast, third, their expectations of online learning became clear, which was evidenced in their positive statements for the courses where communication and collaboration tools were used, and the instructors were identified as collaborators and partners. Learners described, “The professor always gave us clear instructions and notifications about the class materials”, “It was easy to follow because the instructor made a group chat for everyone and kept updating us”, “Despite the online situation, it was easier to approach the instructor (short meetings were easily scheduled through Google Meet), feels like the slides contain much more information than offline courses did”, “It was a great opportunity to be more familiar at handling serious tasks like online exams, and become better at using the technology”, “The Blackboard site was very well-organised” and “the professor was active in consulting and communication”, and “[Professor] allowed us to communicate with him … the more feedback we received, the great outcome we get”. These responses indicate that the higher levels of the identity changes are not only valid but also effective for authentic online learning and teaching.The data analyses showed that the most courses had none or fewer identity changes: they remained at the early stages of the identity formation; the LMS was mostly used as a digital depository with no or minimal communications; and as a result, it was an inevitable corollary that a lack of interactions between learners and instructors were observed. With these outcomes, we reached three practical questions that should be solved to promote the identity changes: (a) How to ensure that an LMS is used as a learning community other than a digital depository; (b) How to deal with minimal and unstructured communication, interaction, and collaboration between learners and instructors/learners and learners that hinder instructor identity changes; and (c) How to support both instructors and learners to engage with the identity changes in a teaching and learning process?While an LMS can be used for storing learning resources and materials, its fundamental identity needs to be regarded as an online learning community in a pedagogical sense. It is more than a software application for teaching and learning administration because it operates in the digitally networked environment rather than as a standalone, and a course itself is a (pre-)community, as the stakeholders share learning objectives. In their study for LMS-based evaluation to determine academic efficiency performance, Santiago et al.  argued tAs observed from the data analysis, minimal and unstructured communication, interaction, and collaboration were the primary reason why identity changes rarely occurred. In the course sites, the instructors appeared as authoritative figures whose primary role was to transmit knowledge and skills to ‘students’, where the identity changes were not considered, as they were perceived as ‘fixed’. In a study on teacher identity changes in e-learning, Aboud  argued tAlthough learners are expected to be active participants, collaborative knowledge constructors, and learning community members, they remain passive not only because of non- or ill-structured learning activities and LMS but also because of their uncritical perception of a hierarchical teacher-student relationship  communication and collaboration tools were organised and facilitated for both individual learners and groups of learners, (b) learners were encouraged to participate in activities and instructed to make contributions to group achievements on a regular basis, and (c) the instructors were also co-participants. Then why do such high levels of identity changes rarely occur? As Sun et al.  pointed Chevallard  introducmathematics-student-tutor. For Albano, the ‘author’ vertex is necessary to ensure that learners become central in the system. She believed that the educational benefit of online learning environments is that learners become a central role in learning processes, and thus learners should be allowed to plan, develop, and manage the didactic system. To do this, she transformed the didactic triangle into a didactic tetrahedron by adding the author vertex where a learner as an author can be positioned at the three remaining vertices (mathematics-student-tutor) . For Albano, learners at the author vertex are “both as a single entity and as a community” (p. 354). The author identity is consistent with the high levels of identity changes in this study in that (a) the learners demonstrated and expected to practise their ownership and authorship of learning, (b) the learners and the instructors were co-participants, and (c) the LMS appeared as a learning community. Therefore, it can be reconfirmed that the high levels of identity changes cannot occur unless they are integrated as the foundations for teaching and learning and should reflect the learning environment, like Chevallard aimed to do through his anthropological theory.Albano  applied connective actions by instructors and learners  diverse levels would be observed when multiple institutes offering mixed teaching modes are included in the sampling, and (b) the quality of identity changes in the three components would be also different in accordance with the types of teaching modes . Another limitation is highly related to technical, administrative, and pedagogical support for transitioning from offline to online for both instructors and students which is regarded as a determining factor in creating an effective online learning environment  A learning and teaching division should support instructors to pre-design their online courses by reflecting the identity changes. A course planner for weekly teaching strategies and learning activities can be given to instructors to design their course, and the division gives feedback to instructors for refinement and support them to pre-organise their course sites. (b) Learners need to be ensured that they are expected to be co-participants in learning. In particular, first-year students should be ensured to experience post-learning communities, and therefore, they advocate themselves as authentic co-owners of learning communities in courses throughout the remaining years of their study. This bottom-up approach is expected to bind all stakeholders to authentic online learning and teaching. (c) Post-learning communities need to be recognised, exemplified and shared by all the stakeholders. In practice, course evaluation can be redesigned to reflect to what extent learners and instructors participate in their learning community rather than what individual students perceive the course at a personal level Park, . Further


A systematic literature review provides information on the ethical issues in dementia-related research and might therefore serve as a basis to improve the ethical conduct of this research. This systematic review aims to provide a broad and unbiased overview of ethical issues in dementia research by reviewing, analysing, and coding the latest literature on the topic.When including participants with dementia in research, various ethical issues arise. At present, there are only a few existing dementia-specific research guidelines . We conducted a systematic review in PubMed and Google Scholar  of literature on research ethics in dementia research. Ethical issues in research were identified by qualitative text analysis and normative analysis.The literature review retrieved 110 references that together mentioned 105 ethical issues in dementia research. This set of ethical issues was structured into a matrix based on the eight major principles from a pre-existing framework on biomedical ethics . Consequently, subcategories were created and further categorized into dementia stages and study phases.The systematically derived matrix helps raise awareness and understanding of the complex topic of ethical issues in dementia research. The matrix can be used as a basis for researchers, policy makers and other stakeholders when planning, conducting and monitoring research, making decisions on the legal background of the topic, and creating research practice guidelines. Dementia prevalence rates are estimated to quadruple by 2050 , 2. ThouThe need for research on risk factors , palliatOut of fear of not being able to fulfil the ethical obligations required when conducting research with incapacitated persons, some might suggest the overall exclusion of cognitively impaired persons, or even of all individuals affected by dementia, from research. This caution may lead to the abandonment of meaningful research on dementia and would exclude dementia research from medical progress, leaving affected persons and their relatives orphaned.Several guidelines , 5 proviIn our systematic review, we therefore aimed to identify the full and unbiased spectrum of research on ethical issues in dementia as discussed in the literature.Three strategies were applied to the literature search: PubMed (database), Google scholar and hand searching methods. We included a publication only if it: (a) described a disease research-specific ethical issue (DREI) in dementia research, (b) did not only relate to ethics in dementia care, and (c) the publication was a peer reviewed journal article or a scientific book . Methodological quality was no eligibility criteria because of the descriptive approach of our study.The Flowchart Fig.  presentsFor the definition of DREI, we referred to the ethical theory of principlism. Emanuel et al. suggest eight principles that make clinical research ethical: respect for participants, independent review, fair participant selection/recruiting, favourable risk–benefit ratio, social value, scientific validity, collaborative partnership and IC . These pThere are two types of ethical issues that could arise: (a) inadequate consideration of one or more principles  or (b) conflicts between two or more principles ”). The terms "risk" (a) and "challenge" (b) used in the following refer to this conceptual consideration.For analysis, we used thematic content analysis  for all dementia stage and study phase to further categorize the identified issues . Finally, we used The literature search in PubMed and Google Scholar revealed a total set of 594 references, 110 of which were ultimately included in the analysis, published between 2007 and 2020 in 64 different journals. For more details, see the flowchart , “independent review” (n = 3), “fair participant selection/recruiting” (n = 5), “favourable risk–benefit ratio” , “social value” (n = 2), “scientific validity” , “collaborative partnership” (n = 5) and “informed consent (IC)” . In the course of data analysis, we subsequently found fewer new codes, and the last 10 analysed papers raised no new issues. Thus, we appear to have achieved thematic saturation for the spectrum at least for the level of major groups and first-level subgroups. We updated the search in September 2020 which lead to the analysis of 46 references from the years 2017 until 2020. During the process of literature analysis, only one new subcategory was found in a paper from 2018 , hereaftdementia stage (based on the NIA-AA-2018-Framework)  weighing opinions of physicians (protecting the participant) over patients’ willingness to participate and over nurse counsellors’ opinions” (n = 1).Several DREIs were only addressed in an implicit manner; for example, “Risk that varying international regulations are a burden for international dementia research” is based on the following quotation: “However, only in Germany and Italy is the system of proxy determined by the courts—a procedure which is not necessarily required for the recognition of a proxy in other member states” .This systematic literature review identified and synthesized the full spectrum of 105 ethical issues in dementia research (DREIs) based on 110 references published between 2007 and 2020 in 64 different journals.Many ethical issues involved “IC” (n = 11) in incapacitated participants and “risk-information disclosure” (n = 8). However, this review shows that there are many more DREIs to consider when planning, reviewing, conducting, or monitoring research with this vulnerable group. We assume that the results will be of interest to different groups—clinical experts, researchers, policy makers, REC-members, lawyers, patient-organization representatives or even affected persons themselves—and that the different stakeholders will read and use the results differently.Our review lists several ethical issues grouped under eight broadly established ethical principles for clinical research. These principles and the principlism approach in general are correlative to basic human rights . The eigThose looking for support or guidance on how to seek ethically appropriate dementia research might prefer detailed descriptions of very specific challenges. Articles such as “Seeking Assent and Respecting Dissent in Dementia Research” by Black et al.  serve thWe illustrate the bridging character of our study by comparing one benchmark for the IC principle originating from Emanuel et al.’s framework  with oneIn that case, and if the researcher had a plan to conduct research in this field of genetic dementia research, the simple fulfilment of the abovementioned benchmark would be insufficient for the goal of morally acceptable research. The mentioned quotation informed the creation of the DREI “Risk of not considering that proxies have major self interest in dementia research, e.g., because they have same genetic traits, which could influence their proxy decision, and their manipulative behaviour may be difficult to detect”.As we compared topics between both rounds of the literature analysing process, we noticed, that some topics were newly introduced in the scientific literature, in particular “deep brain stimulation” issues in dementia research. Other categories or sub-categories like “social value”, “qualified personnel” and “informed consent document” were not further discussed in scientific literature.In addition, we found more and more text examples for issues which before the year of 2017 were only mentioned once, e.g. “Risk of over diagnosis in asymptomatic persons, if the diagnosis is derived from the risk marker status, since their corresponding validity regarding the occurrence and course of a disease is (still) limited”, which now was mentioned in six papers.Also, in the course of the analysis of the studies between 2017 and 2020 we found 22 new issues, among them 17 issues which were only mentioned by one paper showing the rapid emergence of new issues in the dementia research ethics field.Capturing this full spectrum of DREIs can serve multiple purposes. First, it can raise awareness of the ethical issues arising in the context of dementia research, highlighting issues that may be underrepresented in the published literature through the side-by-side presentation in our matrix. Second, it can serve as the basis for information or training materials for researchers and caregivers. Third, it can form the basis for discussions on the importance and/or relevance of the different ethical issues. Fourth, because our spectrum does not rank the difficult DREIs in order of importance, third parties can use it as a basis for exactly that purpose. Fifth, developers of specific research guidelines or policy papers may use this spectrum as an entry point to that topic.At this point, it is important to state that our spectrum remains strictly descriptive. The qualitative and normative interpretation is therefore left to others, e.g., researchers, policy-makers, patient organizations, funding partners and the community as a whole. Those interpretations could further help in developing stakeholder-oriented guidelines for conducting ethically sound research in dementia. The list of ethical issues as presented in this paper, however, cannot directly serve as a checklist for review purposes. More conceptual work is needed to translate the in-depth results of this systematic review into effective and efficient normative or procedural guidance. Finally, existing guidelines, policy papers or new research articles on the topic of DREIs can be screened for completeness .stage and phase (available as an online supplement). This is particularly suitable for readers who have a certain focus, e.g., because they are currently planning a study with people in an early stage of dementia  than other papers on the subject. The identified issues are specifications of eight general ethical principles for clinical research and could be categorized according to the dementia stage and study phase. Therefore, the spectrum can be used to raise awareness about the complexity of ethics in this field and can support different stakeholders in the implementation of ethically appropriate dementia research.Additional file 1. Table S1: An overview of the 105 DREIs assigned to dementia stages.Additional file 2. Table S2: An overview of the 105 DREIs assigned to study phases.Additional file 3. Table S3: All principles, issues and text examples in one table.


Canadian palliative care (PC) philosophy seeks to support individuals in a person-centered and sensitive manner. Unfortunately, philosophy does not necessarily translate into practice and this divide may leave patients without appropriate care at the end of life, causing distress for some families. The primary goal of the study was to identify key factors affecting perceptions of quality PC from the perspective of informal caregivers and decision makers  and to understand how their experiences within the health care system may have influenced their perceptions.Nine caregivers and 11 decision makers from Yukon Territory, British Columbia, Alberta, Ontario, & Nova Scotia shared their experiences in PC via interview or focus group. Audio recordings were transcribed verbatim and qualitatively analyzed for themes.Three themes emerged, including the Caregiver as Anchor, Bewildering System, and Patient, Caregiver, and Family-Centered Care. While these results resembled other studies on caregivers and individuals receiving PC, the present study also uncovered systemic concerns. There was agreement between the two participant groups across most subthemes, however only caregivers reported feelings of being trapped by the health care system and a general lack of respect from health care professionals. Additionally, caregivers stressed the importance of preserving some sort of normalcy in daily life despite the individual’s illness.Caregivers are critical. The health care system expects them to help a great deal, but they often do not feel supported or respected and the system is lacking the capacity and resources to meet their needs while they are grieving loss and struggling to meet demands. Palliative care (PC) is an interdisciplinary approach to care that addresses the physical, psychosocial, cultural, and spiritual needs of individuals with a serious or life-limiting illness and their families . PC suppPalliative care – whether through home-based palliative care or hospice teams – provides education to the caregiver, anticipatory guidance, material supports , and respite care. Unfortunately, only 15% of Canadians have access to such services at home , 4. IndeIn 2017, all provinces and territories in Canada made a commitment to a set of shared health priorities, which highlighted the need to improve access to home and community care, including palliative home care . The neeThe primary goal of this study was to identify key factors affecting perceptions of quality of PC from the perspective of informal caregivers and decision makers , as well as how their experiences within the Canadian health care system may have influenced these factors. While important steps have been taken to support caregivers in a person-centered and sensitive manner, this has not always translated into practice if health care systems and policy makers have competing priorities . Therefore, the second goal of this research was to compare the experiences of caregivers and decision makers to shed light on differences and similarities between these participants, so as to better understand how the health care system affects both groups. This study was part of a larger three-year project, funded by the Canadian Institutes of Health Research (CIHR), aimed at developing and testing quality indicators (QIs) for community-based PC. While the main goal of the larger project is to have a standard set of QIs for PC, as an initial step, we interviewed caregivers and decision makers about their experiences with PC to better understand what constitutes good quality care. The input from these individuals has assisted the research team in knowing what should be captured when developing QIs for PC.Because this study sought to understand the PC system from different points of view, the research was conducted and analyzed from a Systems Theory approach . SystemsKnowledge users  from five regions in Canada  assisted with recruitment of individuals receiving PC and their informal/unpaid caregivers. Inclusion criteria for caregivers consisted of current or recent (within one year) care for an individual receiving palliative home care. Additionally, the knowledge users connected the team with decision makers within their health system’s PC leaders, including palliative program directors, managers, a team lead of home and community care and a provincial lead of palliative and end-of-life care practice. All decision makers had at least 2-5 years’ experience working in PC and the majority also had 5-10 years of experience working in home care. After several rounds of recruitment between January and October of 2019, nine caregivers, one patient, and 11 decision makers agreed to participate. Caregivers and decision makers represented all five provinces. The individual that was receiving PC was from Nova Scotia. While the original purpose was to describe the experience of those receiving PC and their caregivers, the research focused on the experience of caregivers due to the difficulty recruiting individuals receiving PC. To protect their privacy, all participants have been assigned pseudonyms.Participants completed a background questionnaire to provide demographic information, followed by a semi-structured interview or focus group via telephone. Since caregivers were more likely to be speaking about their personal experiences with PC, while decision makers were speaking more broadly about working in PC, it was appropriate to conduct both types of interview styles based on the type of individual we were speaking with. We originally intended to complete all knowledge user communication using multiple focus groups, however due to time restraints and differences in time zones, it was difficult to schedule participants into focus groups. Therefore, some knowledge users ended up completing a one-on-one interview instead of participating in a focus group. All caregivers participated in a one-on-one interview, with the exception of one family in which both the caregiver and person receiving PC took part in the study.Interviews and focus groups were audio recorded, transcribed verbatim by LG and two research assistants, and supplemented with field notes (taken by the transcribers). To improve the accuracy of the transcription, transcripts were reviewed by each interviewee who could add, change, or omit data. While all received a copy of their transcript, only two caregivers provided new data in this process.The authors analyzed all transcripts according to the methods of Braun and Clark , utiliziCode reports were generated and reviewed by NL, NW, and LG for emerging themes and subthemes. NL, NW, and LG also reviewed the themes and compared them against transcripts to ensure they were reflective of the dataset. NL sent a themes summary to all participants for feedback, to which seven caregivers and five decision makers responded in agreement of the findings. The remaining participants did not respond after multiple attempts at follow up. Triangulation between data sources , methods , and investigators   were alsOf note, the coding guide was based upon interviews with individuals receiving PC and families and then applied to the data from decision makers. This was done for the following reasons: 1) the primary goal of this research was to understand the lived experiences of those receiving PC and their families, 2) caregivers and families were primary informants who reported on their lived experience, while decision makers were secondary informants; and 3) the patient and caregiver data were richer, allowing greater detail to illustrate emerging themes. As a result, the themes and subthemes were all saturated for the caregiver data , but saturation was not reached for some subthemes with regards to the decision makers.Twenty-one individuals participated in this research: caregiver (n=9) and decision maker n=11) subjects represented all five provinces; the individual receiving PC was from Nova Scotia. Of the nine caregivers, six cared for a spouse, one for a parent, one for a grandparent, and one for a friend; eight were female. Ten of the eleven decision makers were female; their positions included team/provincial lead (n=2), manager (n=5) and director . Seven decision makers participated in two tele-conference focus groups  and four decision makers were interviewed individually by phone to accommodate their schedules. Decision maker interviews and focus groups lasted approximately 40 minutes (range: 21 to 48 minutes). Three themes emerged upon analysis: Caregiver as Anchor, Bewildering System, and Patient, Caregiver, and Family Centered Care. Each theme was comprised of multiple subthemes, some of which differed between caregivers and decision makers  to medical support . They were needed by patients, as well as PC teams, to act as a liaison between the two. Caregivers reported being relied upon by the PC team as the primary support for patients, and likewise, decision makers reported caregivers as valuable advocates for patients.… just being on top of things, and recognizing that the system is fallible and, um, well, well-intentioned. It's a complicated system. – Theo, caregiverAnother described the important care coordination role of caregivers as:… caregivers might be the best data source for a lot of those things [patient information], particularly when you get to end-of-life, because patients aren’t going to be talking for, speaking for themselves. – Andy, decision makerDecision makers recognized the reliance of PC on informal caregivers:Caregivers felt a sense of duty to provide assistance to patients, but were also overwhelmed by the expectations of the health care team. Caregivers and decision makers acknowledged the importance of open communication to ensure adequate care for patients, while also supporting caregivers.And it was, it was really, really, really difficult because they would insist. And there's times when they came to the door, “Well, if he’s not gonna go to bed now at 8:30, I'm not coming back” and they go and they’d leave me – Adele, caregiverIn spite of acting as part of the health care team, caregivers recalled repeatedly explaining the patient’s needs to various health care professionals, which was draining and frustrating. Caregivers often felt a lack of control when interacting with the health care system and professionals. One caregiver described an episode with home care where they did not accommodate a change in schedule that would have benefited the patient:…[the doctor] started telling me about how we wouldn’t keep a dog alive, when they’re going through suffering and pain. And I said, you know, “Don’t do this. I know what you’re saying. This ishis[emphasis] decision. If it were mine, we would still be in hospice.” So, I had to, I won’t say fight, but I had to defend myself against the hospital, medical people. – Norma, caregiverSimilarly, another caregiver described an instance when health care professionals seemed to disregard her husband’s wishes during his last days in the hospital, making her feel disrespected:I wonder if it would be important to measure just how often the caregivers are being engaged about or being asked the question ‘so how are you doing?’, uhm like I don’t think it’s happening as often as we would like to think it is. – Taryn, decision makerMany caregivers described instances where they were not valued or respected. While Lack of Respect was not saturated for decision makers, caregiver recognition was discussed:I couldn’t shop. If I ran across the street to the drug store it was running there and running back. Make sure that he’s gone to the toilet before I left. And, and hope that he’s still sitting in his chair when I get home and not flat on the floor. – Joan, caregiverSimilar to Lack of Respect, this theme emerged from caregivers only, as it specifically pertained to their feelings. Caregivers described feeling trapped in the home, hospital, or other physical space with the person to whom they were providing care. Caregivers were “lucky” to do necessary errands, let alone get a haircut or go for a coffee with friends given the precarious health status of patients.We spent so much time in hospitals and doctor’s offices. If you looked at our calendar. That was our social calendar. – Norma, caregiverAs a result, caregivers’ worlds seemed smaller, with little to no social life and/or travel. Part of the concern was the inordinate amount of time spent waiting for appointments, medications, deliveries, etc., due to PC needs.I know it sounds lovely, and it sounds great. And whatever. But I thought to myself. No one told you, me at least, or maybe society, the burden is basically going to be onyou[emphasis] to deal witheverything[emphasis]. – Sam, caregiverWhile the caregiving role was taken on willingly by the participants in this study, the role was described similar to imprisonment (a phrase selected by the authors): there was little room for caregiver’s autonomy outside of caregiving. Some caregivers appreciated the good they were doing, while others expressed resentment for lack of advance warning regarding the negative impact caregiving would have:Like Sam, other caregivers noted disillusionment in their role, not necessarily because they did not wish to be a caregiver, but because they did not realize the extent of isolation and responsibility in PC. Caregivers wished they were informed of the burden they would carry alone, and the impacts caregiving would have on their freedom, social lives, and work. The Lack of Respect and Trapped by the System subthemes both highlight the importance of providing patient- and family/caregiver-centered care, which is essential when providing high-quality PC.I’m also grieving my husband. I’ve been grieving him, like I tell the children, a long time, because I’m losing him, I’ve lost him slowly, right? – Helen, caregiverCaregivers provided care while navigating the loss of their future life with the patient:Often what I find is falling short a bit is the awareness piece around how the family felt, even in the bereavement period. You know, is the care ongoing? Do they still feel supported? Do they have the bereavement support that they need? And how was their experience of this end-of-life care and through death overall? – Nancy, decision makerSome caregivers utilized professional supports to traverse their complex grief and bereavement, while others did not deem it necessary due to other support systems . Decision makers recognized the emotional and psychological burden of grief and loss on caregivers, as well as shortfalls within the health care system to support these feelings:after the patient had died (Nancy’s quote above), while caregivers expressed desire for support during PC:You're immersed in a grieving process ‘cause you're already grieving the loss of this loved one. If you were a visitor to a patient, a palliative patient, you're already, probably, in these complicated emotions and are feeling a whole range of thoughts in grieving. You're grieving already. – Theo, caregiverInterestingly, decision makers commented on providing caregiver and/or family support Caregivers described grief as anticipatory, while decision makers discussed grief as something to address after the patient had died. This theme clearly highlighted the need for additional bereavement care earlier in PC, especially for primary caregivers, who must balance full-time care with anticipatory grief.How would we have entered into [decision making] if your caregiver actually is sufficiently exhausted enough that you actually question my decision making? I found that very bewildering. I found that very, um, confusing. – Sam, caregiverThe health care system was described as complicated by caregivers and decision makers alike. Sam described the expectation for him to make medical decisions when experiencing exhaustion as a result of his caregiving:There were many instances where PC did not meet patient or caregiver needs, which caregivers described as distressing. Caregivers were unsure how to traverse the system, which was neither intuitive nor user-friendly.I do think that it’s really important sitting down at the beginning and justtalking[emphasis] about, what they can do, what my expectations were, can the, is it realistic, if not, what can we do, what’s out there, what’s available, you know? – Alice, caregiverThis subtheme identified a lack of congruence between caregiver expectations and available service. The caregiver (and patient) expected a certain amount of support from health care providers; however, not all of these expectations were realized. While communication would have identified discrepancies, caregivers reported few discussions with health care professionals regarding PC:I can recall this conversation actually with a daughter when I was in rural [care], surprised when you know we said we can only do this much and she’s like “you’re expecting me to take care of my mother?” … people don’t understand home care and that it’s a support to the family, in uhm supporting them to take care of their family member. … But the reality of what that actually looks like, people are completely unprepared for that. – Beth, decision makerDecision makers wanted to support patients and caregivers, but recognized limitations within the health care system. A decision maker described her experiences with caregiver expectations in home care:And I felt sorry for the three other ladies who had no mobility, couldn’t run because they were, you know, bed bound often... I mean [my aunt] was, she was allowed to die there. I thought what, this isawful[emphasis]. I mean whoever made these decisions, that it was convenient for them not to have to move around or find a bed. That was really, really inappropriate. – Theo, caregiverUnfortunately, caregivers had negative experiences within the system and with health care professionals, such as sub-optimal patient placement. For example, Theo felt it was inappropriate for his aunt to die in a shared hospital room (opposed to private):While person-centered PC was a goal identified by decision makers, caregivers provided numerous examples where the health care system fell short of their expectations . This problem was due to incongruence between caregivers’ expectations and the reality of PC in the Canadian health care system, as well as lack of dialogue around said realities.And the other piece is just the resources are not available, whether that is funding, or competent, um, personnel. For example, do you have a physician who knows how to deliver these services on a regular basis? Not necessarily a specialist. Are they even in the area? So, that’s a multi-factorial, kind of thing. – Andy, decision makerVarious concerns existed in PC due to the limited number of professionals and services available, which were identified by caregivers and decision makers alike. Decision makers expressed concerns with limited resources, specifically staff:There just was no continuity. So it was, um, uh. That, that was certainly the biggest challenge. It affected, it affected, like I said, all, all of the care he received. – Alice, caregiverCaregivers (and patients) expressed lack of continuity between and support from health care professionals as challenging:Staff competency was addressed by participants as negatively affecting caregiver and patient experiences at the end-of-life.Then there were all the calls for ambulances to get him to the hospital. I tried getting him there myself by taxi, at first. But eventually I gave up and started calling ambulances. – Joan, caregiverCrisis situations arose when patients required an ambulance and/or emergency department to get needed care. This theme applied to both caregivers and decision makers, but the experiences of each group differed. Crisis was distressing and overwhelming for caregivers, who turned to emergency services when there were no alternatives:I know that there is respite available, but it wasn’t offered, and I just didn’t think to ask. I think, to be honest I was really in crisis and I was just getting through the day. – Alice, caregiverIn some cases, caregivers felt crises were the only means for conveying patient needs to health care professionals. Conversely, caregivers may not have explored other options, which could have preceded or resulted from exhaustion:I think some, you know, introductory understandings to palliative care. You know, that idea of advanced care planning, serious illness conversations, uhm because I think if you do that work up front, you’re gonna probably end up in less crisis. – Beth, decision makerIt was common for patients to experience crises that required immediate attention; however, many crises could have been avoided:With increased communication and care planning, decision makers felt crises could be reduced.And I'll be honest with you, [our palliative care coordinator] has been tremendous advocate for me. She really has. – Adele, caregiverDespite many concerns with PC, caregivers reported some positive experiences. This subtheme did not apply to decision makers. These exceptionalities typically pertained to specific circumstances, such as receiving PC at home and hospice.And oh, the care aide. What really helped our life a lot too, was in the last 2 years we got a care aide and same care aide to come every time. And he was like anangel! [emphasis] He, he got to know Henry really well. Henry trusted him. Henry didn’t mind me leaving when he was with him. – Norma, caregiverThe PC coordinator ensured the couple’s needs for home care were met. Similarly, one participant described a home care aide who supported her husband, in turn giving her more freedom:…once she was in [the long-term care facility], it was a good experience. But it was just getting to that point and everything. – Robin, caregiverIt was especially important for this individual to have the same aide over time to establish a trusting relationship. Positive occurrences were out of the ordinary and did not outweigh distress from understaffing, lack of continuity, or other stressors associated with PC:Exceptional care was relatively uncommon in caregivers’ PC experiences, partially due to health care system concerns, in addition to caregiver burden and complex grief.… he was put into hospice because there you’d, they keep him comfortable. And I have to tell you it was like heaven for me. Because I got to be his wife, not his caregiver. And I spent a lot of time talking with him. – Norma, caregiverDecision makers and caregivers stressed the importance not only for patients, but also caregivers and family members to have their wishes and needs respected in PC. A caregiver described how this affected her experience:Unfortunately, many did not experience patient, caregiver, and family centered care.I went through what probably a lot of people do, “why me?” Because I lived a pretty healthy lifestyle and so on, and I couldn't figure out why this was happening to me. Well, I guess if I could figure it out, we might have a cure for what’s going on. But, uh, it’s been tough. Like anything I had my ups and downs, and that. But I’ve gotten by the “why me” stage and that now, you know I accepted what’s happening and to be honest we do it one day at a time, how we feel. – Will, palliative patientParticipants reported psychological, social, and spiritual aspects affected quality of PC. Caregivers experienced psychosocial distress, such as intense anxiety, while decision makers recognized significant effects associated with death and dying. One participant discussed the psychological aspects of his diagnosis:… he definitely had, um, um, emotional and psychological needs that weren’t being met. I think he felt very alone. And I know there were times I felt very alone. – Alice, caregiverAccepting a life limiting diagnoses was challenging, particularly when needs were not being met:we always, you know uhm, pay a lot of attention, or give a lot of attention to pain and symptom management, but the bereavement part, or the spiritual part …We talk about it and it’s in our standards and all that sort of thing, but we really don’t put a huge emphasis on it. Like as much as it deserves. – Carrie, decision makerPsychosocial and spiritual needs were unaddressed in the health care system, not necessarily due to lack of consideration, but rather due to competing priorities, such as patient pain.I had friends try to come, in case I needed to talk and stuff… I had everything I needed in my religion and in my time with Henry in the hospice. If I’d been in the hospital the whole time, I might of needed grief counseling afterwards. – Norma, caregiverIn some cases, spiritual and religious practices mitigated psychological and emotional distress:However, there were circumstances where patients wished for spiritual care in a hospital or home care setting, but they were unable to receive such supports. Of note, few caregivers discussed their spiritual needs beyond the provision of specific religious guidance or rituals.… the only thing I would compare it to you know you’re giving birth, you’re in control. It's your birth, birthing. You call the shots. And I think it's your death, you call the shots. – Theo, caregiverParticipants stressed the importance for patients to express their wishes and have said wishes respected in PC. Toward the end of life, some patients lost their ability to make decisions and/or communicate their needs. Respecting a patient’s wishes was described as imperative:…we want to make sure we have a documented signed uh, substitute decision maker form. Uh, because often times you get into trouble if you’re not talking to the right person or once the person has lost capacity then things get a lot more difficult. – Carrie, decision makerDecision makers also highlighted the importance for patients to specify their preferred place of death, who provides their care, where care is received , what type of care is delivered, etc. to their caregivers while they still have the cognitive capacity to do so:And I think that you could feel that you know, Carl was walking down a different path, and sometimes they [medical professionals] got frustrated with him, that he wouldn’t participate in a medical solution. – Sam, caregiverHowever, caregivers reported instances where patient wishes were not respected, even when clearly communicated to health care professionals. For example, one individual was questioned for his decision to forgo life-extending procedures:… just knowing myself and just my personality and so on. I just don't want to go the route where I struggle for my breath each day, you know, and that type of thing. So, I don't want to say it’s the lesser of the two evils. I just feel that it’s best for me. That’s the way I want to go. – Will, palliative patientParticipants felt medical assistance in dying (MAID) provided patients with some control over their lives, rather than lifesaving or life-extending interventions.Patient choice regarding medical intervention, place of death, and final wishes was clearly expressed by caregivers and decision makers as important in quality PC.… we even had to really advocate, push very hard to get a palliative physician on board. Um, um [pause]. And so certainly once we got a palliative physician, the pain management was better. – Alice, caregiverCaregivers listed PC, access to resources, and appropriate care facilities as important for positive palliative experiences; however, there were difficulties in accessing PC:You know, are they not accessing it because it’s not available, or are they not accessing it’s because it’s not needed, they’re not made aware of the services, or the decision to not move to palliative care is not made in a timely manner? You know, there’s various reasons behind these access questions. – Elise, decision makerThis couple knew which type of care they wanted and worked to gain access to resources ; however, patients and caregivers may not be aware of services available:While many services were available to PC patients and caregivers in some areas, others were unavailable, especially in rural and remote regions in Canada. Caregivers reported lack of awareness of PC services, which reduced their access to care.I think for a lot of people trying to live as normally as they can for as long as they can is, is, uh really important. – Alice, caregiverCaregivers and patients experienced life changes due to diagnoses and health decline; however, they wanted their lives to continue as normally as possible for as long as possible. This subtheme emerged only from caregiver data.he might have ALS but he's still an individual, he’s still a person we're still a family. Husband and wife – Adele, caregiverCaregivers and patients sought rounded treatment: they wanted high quality of life for as long as possible, but there were barriers in the extent to which they could live “normally”, in part due to instances of impersonal care. Adele and Will noticed a diagnosis-centric focus in their home care providers, who offered little support for their day-to-day activities and expected them to be home, waiting for care. For instance, Adele disliked when health care providers referred to her husband as his diagnosis:It was important for caregivers and patients to be able to live with dignity, especially in the time leading to more intensive PC.Three themes emerged upon analysis of qualitative data from caregivers and decision makers in Canada, including the Caregiver as Anchor, Bewildering System, and Patient, Caregiver, and Family-Centered Care. While these results resembled other studies on caregivers and individuals receiving PC, both in home and hospital settings –29, the Much research has uncovered the extent of stress and exhaustion accompanying the caregiving role, particularly in PC , and thuPrevious studies reported that caregivers felt expectations to “be in charge” of the patient to a greater extent than anticipated, causing distress . This isMost Canadians have indicated they would prefer to receive care in the comfort of their own homes and also to die at home, surrounded by loved ones , 36. HowThe caregivers in this study experienced difficulties with accessing timely PC, and oftentimes had to advocate on the patient’s behalf. Until recently, most PC services have not been initiated until the last weeks or days of life; however, the PC community has shifted towards providing PC services earlier to anyone who could benefit from this approach to care. This shift has been observed in multiple countries, including Canada, Australia, the United Kingdom, the United States, Belgium and New Zealand , 39–41. There were a number of limitations with the current study. First, the small sample may not be representative of patients, caregivers or decision makers nationally. There were many impediments to recruitment of patients including mental status and limited life expectancy. However, research has found that caregivers have provided adequate proxy reports of patient symptoms and areas of distress  , and hadThere were also a number of strengths in this study, including timely recruitment of caregivers  in order to avoid gaps in memory. Additionally, the inclusion of both family caregivers and decision makers provided a perspective that has rarely been explored. While a number of studies have examined patient and caregiver experiences , 33, 46 Discussions with caregivers and decision makers about their experiences with PC in Canada was an important first step in understanding what constitutes good quality PC. Based on their experiences, it is clear that a number of factors need to be included in the quality assessment of PC provided: anticipatory guidance about caregiver’s role, delineation of responsibilities between system and caregiver, extent of collaboration with caregiver, patient-centeredness of care, treatment of patient as a whole person, continuity of providers, and quality and frequency of provider communication. These factors should be addressed at the systemic level given how pervasive the critique of the system was by caregivers. Frameworks and action plans towards better supporting informal caregivers in the home, including education, training and increased access to PC services are part of the top priorities for delivery of PC in Canada . Continu


Open Access funding enabled and organized by Projekt DEAL.The article “Introducing multiple-choice questions to promote learning for medical students: effect on exam performance in obstetrics and gynecology” written by Sebastian M. Jud, Susanne Cupisti, Wolfgang Frobenius, Andrea Winkler, Franziska Schultheis, Sophia Antoniadis, Matthias W. Beckmann and Felix Heindl was originally published electronically on the publisher’s internet portal on August 31, 2020 without open access. With the author(s)’ decision to opt for Open Choice the copyright of the article changed to © The Author(s) 2020 and the article is forthwith distributed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third-party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit Open Access: The article is forthwith distributed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third-party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.