Social Work Student Views on Palliative Care Learning Resources

Australian Social Work, 2015 Vol. 68, No. 2, 259–270, http://dx.doi.org/10.1080/0312407X.2014.995683 PRACTICE, POLICY, & PERSPECTIVES Social Work Student Views on Palliative Care Learning Resources Linda Turnera*, Ahmed Bawa Kuyinib, Savana Sabine Agustineb, & Sally Hunterc a School of Social Work, Dalhousie University, Halifax, NS, Canada; bSchool of Health, University of New England, Armidale, NSW, Australia; cSchool of Rural Medicine, University of New England, Armidale, NSW, Australia Abstract Many social workers are expected to work with individuals and families who are dealing with life-limiting illnesses, yet during their university education they may not have been exposed to materials that address issues related to death and dying. The Social Work Department of University of New England in Armidale, Australia designed and delivered a palliative care teaching and learning session using publicly funded online materials. Themes emerging from questionnaire and focus group data analysis included appreciation for the importance and emotional demands of the materials, sensitivity and flexibility among educators who ideally have work experience in the field, expanding presence of social work philosophy in curriculum materials and exploring spirituality, and examining culture-informed practice in greater depth. Among the implications is the need for concerted efforts to teach about death and dying using high quality accessible materials, while ensuring social work values and approaches are reflected in the content. Keywords: Palliative Care; Social Work; Curriculum; Grief To prepare professionals who are capable of responding to and acting confidently and compassionately with dying people, social work educators need to guide students through learning about death and the needs of the dying. We must also expose them to pertinent resources. Competence in the field must be a current priority among practitioners (Bosma et al., 2010) and educators are responsible for adequately preparing students (Csikai & Raymer, 2005). In this paper, we present an analysis of the views and ideas of social work students who participated in an educational session that used the high quality learning materials produced by the Australian Government Department of Health and Ageing within the Palliative Care Curriculum for Undergraduate Students (PCC4U) Project. The PCC4U Project is led by Queensland University of Technology in collaboration with the Queensland Government, Flinders University, Charles Darwin University, *Correspondence to: Linda Turner, School of Social Work, Dalhousie University, Halifax, NS, Canada. Email: [email protected] Accepted 18 September 2014 © 2015 Australian Association of Social Workers 260 L. Turner et al. and Curtin University of Technology. It was funded by the Australian Government through the Department of Health and Ageing. The website is http://www.pcc4u.org Background While education about death, dying, hospices, and palliative care has increased in quantity and quality (Christ & Blacker, 2005; Dickinson, 2013; Frey, Gott, & Neil, 2013; Hall, Marshall, Weaver, Boyle, & Taniguchi, 2011), gaps remain in social work education (Becerra, 2012; Otis-Green, Lucas, Spolum, Ferrell, & Grant, 2008; Reese, 2011). Literature in the last decade indicates two deficiencies in relation to palliative care: (1) passivity pervades when it comes to including the content in social work programs; and (2) the field is characterised by limits to common language, disciplinedriven turf issues, and deeply entrenched norms around hierarchy of health care provision (Forrest & Derrick, 2010). Connell, Yates, and Barrett (2011) promoted educating about palliative care through using resources available online, noting the improved quality of interaction and discussion. Students in numerous studies they cited have responded positively to diverse palliative-care learning activities. Head et al. (2012) in a thematic analysis of third year medical students’ reflective writing, identified a wide span of areas of learning from palliative internships. In another study with medical students (Ellman et al., 2012) qualitative analysis of over 500 reflective essays about attitudes towards death and dying revealed constructive changes in views about communication and the role of caring as being equal to curing. The need for social workers to engage in effective interprofessional initiatives is surfacing more regularly in the end-of-life literature (Gordon, Ridley, Boston, & Dahl, 2012; Supiano & Berry, 2013). While variations in social work education about death and dying and end-of-life care exist (Csikai, 2009; Csikai & Jones, 2007), the field will continue to expand and benefit from research that acknowledges diverse cultural contexts (Adames, Chavez-Dueñas, Fuentes, Salas, & Perez-Chavez, 2014; Wong et al., 2012). Evaluating teaching and specifically evaluating materials and resources in university courses deserves more attention. At the University of New England, students studying the Bachelor of Social Work (BSW) and the Master of Social Work (Professional Qualifying) (MSW[PQ]) are exposed to palliative care through readings and class discussion. In this study, an additional 90 minute compulsory class was introduced into the curriculum, using the PCC4U online materials. Methods Intervention Students, who normally study online, attend a week-long Intensive School once a trimester. In 2012, students who attended the Intensive School were told about the study, and were invited to participate. All students attended, regardless of whether or Australian Social Work 261 not they wished to be involved in the research aspect. The intervention consisted of a 90 minute compulsory class on palliative care, presented by the lead author. Students prepared for the class by studying the PCC4U website beforehand. The PCC4U website reveals stories of three older men requiring palliative care and one young woman dying of breast cancer. The materials included video clips of them discussing the progression of their illnesses with various professionals (PCC4U, 2013). Although the materials were designed for “medical, nursing and allied health undergraduates” (PCC4U, 2013), the focus was mainly care provision by oncologists, GPs, and palliative care nurses. No social workers were included in the videos although some of the conversations with patients could have been conducted by a social worker. The focus of the videos was mainly on the patient, following a medical model. Even though the patient’s partner was visible, they were seldom invited by professionals to discuss the situation. During the intervention, students were introduced to the PCC4U materials, shown some of the video clips, and encouraged to discuss some of the “thinking points” in groups. The focus of the session was a 60-year-old man, William, dying of liver cancer (PCC4U, 2013). Sample Two groups of students underwent the intervention. Students in one group were in the final year of study and the others were enrolled in their first communication skills practice course. All students in the course received the intervention and learning, but participation in the research project (focus group and surveys) was entirely voluntary. Both were held the same day. Ethics approval for the research was previously obtained from the University’s Human Ethics Review Committee. A total of 20 students took part in the research. This represented a response rate of 65%. Students reflected a range of age, gender, and level of experience. Data Collection The students filled in a questionnaire with three open-ended questions, to draw out their individual responses. The questionnaire explored how the intervention was valuable to their learning about palliative care, how the resources could be improved, and what was missing that would have been helpful to their learning. This was followed by one-hour focus group discussions led by an independent researcher who was a professional counsellor with group work skills and experience teaching and counselling about grief and loss. The decision to hire this experienced colleague to conduct the focus groups was for ethical reasons: other team members were faculty teaching the students and we wanted students to feel free to express dissent or to not participate. Focus groups were chosen rather than interviews or written responses due to the benefits of discussion and exchange. 262 L. Turner et al. Key questions asked were: What from the resources or session was of particular value to your learning about palliative care? What aspects of the resources or session used to teach about palliative care could be improved or should be removed from the materials? What suggestions have you for content or resources or activities to learn more about palliative care as a social worker? Consent to record the focus groups was obtained from participants. Data Analysis The researcher transcribed focus group discussions and collated responses to questionnaires. Thematic analysis, a systematic process of coding units of meaning while staying close to the original form of the expression, along with categorising coded data as themes is articulated by Padgett (2008). Boyatzis (1998) and Lietz, Langer, and Furman (2006) provided a highly focused description of the process we adhered to for this study. The researcher combined data from the focus groups with that from the three open-ended questions, and analysed for themes. Discussion and exchange among the three social work faculty team members and the researcher to ensure agreement about units of meaning behind the themes also led to consensus on how themes would be articulated and presented. Results Six themes emerging from the analysis are described below. All students actively participated in the focus groups. Quotations to illustrate themes come from students from both focus group and questionnaire data. Perceptions of the Importance and Intensity of the Material Student participants advised that careful contemplation about selection of resource materials and teaching methods was necessary, when the subject is palliative care. Students may or may not have had first-hand experience with death, and those with experience reflect varying responses regarding how those experiences might affect them in classroom settings. As one student noted, “…it is really heavy material and it is really quite confronting, especially for students and particularly undergrad students who probably don’t have a lot of experience in this field”. There was consensus, despite the “heaviness” of the subject, that university is the right time to learn about palliative care. One student noted death is “still a part of life”. Even among students who did not expect to work directly in the field, a shared view was “…we will come across it, at some stage, whatever we’re doing”. This comment asserts the relevance and reality of dying for people social workers meet: Yes, your client themselves may not be in palliative care, but their uncle or aunt or brother or sister could be, and part of taking care of your client’s bio-psycho-social Australian Social Work 263 needs is what you’d have to incorporate while you’re going through palliative care for a relative … death and dying is very important in any area. It’s not really something you can dance around. Many students were intrigued by the materials that highlighted “death avoidance” in society. References to it continue to arise in medical and cultural literature (Bishop, 2011; Black, 2007; Gilbert, 2006; Tomer & Eliason, 2005). During group discussions one participant reflected: “… you don’t really think about that … avoiding death, so that was good and then having a discussion about it”. Several students used the term “awkward” to characterise communicating when death is imminent. Despite the resources depicting professionals role-playing scenarios where they were assumed to be demonstrating skill competence, students detected some awkwardness and discomfort. The following critique of a vignette highlighted such awkwardness in interactions between professionals and patient: “He didn’t answer a lot of William’s questions, he sort of just had a roundabout way, so when William was asking about pain and stuff, and the doctor was avoiding it, it was very obvious that that was happening”. Students noted that, while it is a difficult and confronting subject area, they must develop this awareness during their education. One stated: “… if it is really hard it’s probably better to find out now, like it was really hard for me to deal with and I’d rather find out now than when I’m talking to a client”. Sensitivity and Flexibility when Teaching about Palliative Care The need for educators who teach palliative care curriculum to be sensitive and flexible was suggested. Likewise, being able to discuss materials or share knowledge based on prior experience in the field, were seen as important: I would like to see more videos of people who actually work in palliative care, telling the good things about it and the difficult parts. And I’d like to see real people talking about their experiences, rather than just interactions with the professionals. Within any classroom, educators may find students who have experienced a child or infant death, students who are in a demographic where higher death rates at earlier ages prevail, or students who have supported a parent through the dying process. An instructor capable of embracing the diverse range of experiences in a classroom when presenting content related to palliative care work was deemed essential. The “tricky” balance of teaching about palliative care realities while attempting to maintain emotional equilibrium in the classroom, was recognised by this student: I think you’ve got to be really careful when you do something like palliative care about the scope of experience, whether it be personal or professional, and how you approach that really respectfully—while still conveying how serious it is, doing it in a way that isn’t going to trigger everybody’s sensitivities. 264 L. Turner et al. Sensitivity and flexibility are required to meet classroom needs. Situations presented in any lesson plan or resource may reflect the lived experience of one or more students in the classroom. Students did not want to see their peers prevented from fulfilling course requirements, due to being challenged by a specific scene or situation that hit “too close to home”. This reflection promotes communicating the nature of content in advance. It also reminds us to recognise the dilemma for students who realise they may be “triggered” by viewing it: if people are given information on what Michelle’s story is about, they might know if it’s going to be hard for them, and if they’re told they’re not going to suffer any [loss of] marks if they don’t watch it all, or learn about this then they can work out if they want to watch it or not. Protecting Vulnerable Students There was much discussion with regard to dealing with the emotional “wear and tear” of having to think about death and having to support people facing their own or a loved one’s mortality. Students raised concerns about looking after themselves emotionally, in what was undoubtedly “quite an emotive area to work in … [that] could pull you down”. Protection of vulnerable students was emphasised. One suggestion was providing the online resources link, and advising students the material was likely to generate emotion, so they could begin thinking about their personal needs. Offering guidance such as contacting a 24-hour support line or discussing emotions with an instructor was recommended. Another suggestion came from this student: “I think it would be good if the thinking points linked to something. Like a discussion board or a tutor or something”. There was also firm insistence on the value of “debriefing” following the educational sessions based on the belief that for some students seeing such scenarios could be a first, and could trigger unanticipated emotional responses. Some students were concerned about whether a student with someone close who was dying, or who still experienced strong grief reactions, would be able to succeed if grading was involved. In other words, having the freedom of “opting out” of participation would enable avoidance of “nasty surprises”, as one student put it. Students in the focus group wondered if a peer who anticipated distress upon viewing the materials could be given an alternate learning activity. Studying Privately or in Class There were many different opinions regarding whether resources holding high emotional content should be viewed by participants as a group, in person, or at home on computer, alone. One student preferred the home option in order to “not burden the group” with emotional responses. This was echoed by another student who suggested: Australian Social Work 265 “…if you’re not prepared for one of these stories, and it does trigger your emotions, then you’re in the classroom, in that setting, bawling your eyes out, all upset”. Another student voiced the advantages of “previewing” at home: if you’ve gone into Michelle’s story—and it’s labelled “Warning: Emotive Content” [or specifying the medical issue] you think, “Okay, I can do this …”—you can go and drink coffee, you can ring your best friend, you can go for a walk, deal with it on that level, and then come to class. Recognising the diversity reflected in perspectives about the video resources reminds educators to be prepared for the range of needs students in any classroom will have. Developing a Social Work Perspective Several students wanted to hear from people with “extensive” experience in social work. The value of “storytelling” is accentuated in this comment: I would like to see more videos of people who actually work in palliative care, telling the good things about it and the difficult parts. And I’d like to see real people talking about their experiences, rather than just interactions with the professionals. Students raised valuable critiques about palliative care’s portrayal. One example was its association with old people, and the negative stigma that often follows. This student suggested that educators “show ‘palliative care’ is not necessarily ‘elderly care’… it’s ‘end-of-life’ care, and we assume ‘end-of-life’ is elderly, but it’s not”. Some believed that what was presented was too heavily influenced by the “medical model”. Key social work values and concepts were mentioned including working toward greatest dignity and empowerment of families and recipients of care. One student reflected on the words “palliative care”: it’s a nicer way to put it; I think it’s a lot less clinical than “terminal illness”. There is a lot of negative connotation around the phrase “terminal illness”. Everyone sort of whispers it, rather than actually say it out loud. Students also reflected on how things were said: I thought some of the language was quite clinical and in some cases quite cold. It didn’t quite fit in with what I would perceive to be the values of social work. One that stood out in particular was “disposing of bodies”. I thought that was very clinical. However, another student responded with acceptance about this style of communication, since it reflected the culture within which social workers would be working. The lack of shared understanding between medical care providers and patients and their families suggested the need for the word “palliative” to be defined clearly for students. The value of a glossary for professionals who were not strongly oriented in medical fields was noted. 266 L. Turner et al. Strong communication skill development will prevent becoming a professional who is “saying a lot without really saying anything; a lot of words but none of it really [meaning] anything”. Another student spoke of being prepared for honest and forthright questions that children will ask in such settings: And sometimes little kids will ask you “where is Daddy’s body?” or “you said he is going to be put in the ground so how can he be in heaven?” They want to know the answers to the practical questions. Social work acknowledges a person amid the many systems that form her or his environment. Family needs and family influence are primary and yet seemed overlooked among the resources by a student who said: “I don’t think that there’s enough emphasis on the family overall”. Another student thought the videos focused on practicalities of “what needs to be done” but also thought that the emotional needs of family should not be overlooked. Reviewing resources reminded students of the essential role that communication plays. As one put it: “I now realise the importance and responsibility I have as a social worker to ensure that people and significant others feel validated, heard, and understood, especially during these vulnerable and painful times”. Spirituality and Culturally-sensitive Practice Focus group transcripts and questionnaire materials generated interesting discussions among students about spirituality and being attentive to cultural needs. Selfdetermination was recognised as being particularly pertinent. In resources explored, some felt appreciation for cultural differences was not emphasised enough: when I looked at it, I was concerned that there wasn’t enough of what I would call “cross-cultural” stuff and cultural understanding in the sense of the way we understand death and dying is very different, depending upon our cultural perspective and our cultural background. That can become very important when you’re working with people too. Others thought the resources did generate increased awareness of culture’s significance—both their own and that of others. Greater preparation and knowledge of religious and philosophical diversity emerged as being desirable. Equally important, materials reminded students that raising questions about spirituality with patients is important: there’s a spirituality section which encourages you to talk to the person about their spirituality and for me, that was something that I learnt, because I’m not religious I wouldn’t think of it, because of my views, so it made me think “Oh well, they have different beliefs to me, so you’ve got to explore that”. Australian Social Work 267 Discussion Educating students in health care with specific attention to palliative care has direct benefits for patient care (Bush, 2012), and making the learning compulsory also has merit (Morrison, Thompson, & Gill, 2012). Simons and Park-Lee (2009) offered findings related to student views about end-of-life care that link with our study. Their exploration of personal characteristics associated with high comfort levels with palliative care revealed students who were less influenced by death anxiety, who had been in a related placement, or were older and who had experienced more death in their lifetimes were more comfortable with palliative care curriculum. Educators must be mindful of the impact curriculum materials may have on students. They may at times need to support them, in light of the concern voiced by one participant: “Would people find themselves in the midst of their own grief, and as such, at risk following exposure to the material?” Making good use of free online learning resources for learning by groups has merit. Murty, Gilmore, Richards, and Altilio (2012) discussed “Listserves” and the value of online technological communication and sharing in their analysis of a community of practice groups whose simple email exchanges provided quality learning, a reflection of the comfort and convenience people find with computers. Curriculum resources for palliative care used for this study were of high quality. What is further needed is an array of materials that show the social work role within interprofessional resources. An issue raised is the educator’s dilemma with regard to deciding if a student does not need to view a particular session, and offering a “replacement” activity that strives to address the same learning objective with different material. Whether an instructor needs to demonstrate compassion and care in this way warrants further exploration. Another area needing discussion is how palliative care can be presented in ways that highlight positive aspects, potentially encouraging those steeped in “death avoidance” while reducing negative connotations. Students wanted to hear more about hope and satisfaction in the field. This is a reminder to educators to share their reflections, and to render the area itself desirable as a career pursuit. Resources can be assessed or evaluated using criteria and checklists for how they maintain threads that expose positive elements of day-to-day involvement. Initial statements of philosophies and values in a course could provide contextual reassurance. The importance of caring for the self is also central to this field (Alkema, Linton, & Davies, 2008). Resources with first hand perspectives of experienced practitioners and their techniques for self-care should be included in courses where palliative care is taught. An equally important aspect of palliative care education is paying attention to unique environmental contexts within which it is occurring. Ongoing assessment of the specific learning that students or professionals need is important (Huff, Weisenfluh, Murphy, & Black, 2006). These researchers conducted nine focus groups 268 L. Turner et al. with American social work students who identified numerous areas they wanted more learning in, including cultural variations and appropriate self-care strategies. Limitations This study’s findings refer to a relatively small cohort of students enrolled in a distance education program. Also, the exploration of students’ views focused on an orientation to one organisation’s palliative care resources rather than an array of materials in the context of a full course on social work and palliative care. Recommendations for Education and Future Research The study’s findings indicate that social work educators teaching death and dying material can benefit from professionally created online materials. Given that diverse responses to emotionally-laden content are to be expected, awareness and skill in supporting while teaching the “realities” of the field are essential. Experienced educators who can communicate satisfaction are needed. Materials intended for an interprofessional audience are useful on many levels. Within healthcare contexts, ensuring attention is paid to the patient’s family members, and to primary social work values including self-determination is vital. Further research is needed about decision-making by educators on the ethical and pedagogical aspects of offering alternative assignments for students confronted by emotionally challenging content. Also exploration of techniques and processes that invite students to be comfortable discussing spirituality would be beneficial. How to achieve a balance between a “realistic” and a “hopeful” portrayal poses some challenges. An educator with no experience in the field may be at a disadvantage to convincingly convey positive aspects. Students often appreciate insights by guest presenters (either in person or on video). Conclusion This study has provided an analysis of student views toward curriculum materials available in an online format specific to palliative care education. Inviting students to evaluate learning resources is important. Such inquiries enable educators to benefit from student reflections regarding their needs particularly with content that is likely to generate strong emotional response. Student insights and observations reveal avenues into looking at death and dying from additional vantage points. Time needs to be devoted to promoting healthy and compassionate professionals for the front line of palliative care who will support family members, colleagues, and others during the death experience. Further research is needed to develop effective education for social work students about palliative care to increase the quality of care for people, as they, their family, and friends experience the dying process. Australian Social Work 269 References Adames, H. Y., Chavez-Dueñas, N. Y., Fuentes, M. A., Salas, S. P., & Perez-Chavez, J. G. (2014). Integration of Latino/a cultural values into palliative health care: A culture centered model. Palliative and Supportive Care, 12(2), 149–157. doi:10.1017/S147895151300028X Alkema, K., Linton, J. M., & Davies, R. (2008). A study of the relationship between self-care, compassion satisfaction, compassion fatigue, and burnout among hospice professionals. 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