Research Report Palliative care curriculum for speech language pathology students

Transcription

1 INT. J. LANG. COMM. DIS. 2010, Early Online Article, 1 13 Research Report Palliative care curriculum for speech language pathology students Bernice Mathisen, Patsy Yates and Penny Crofts Speech Pathology and Family Action Centre, University of Newcastle, Callaghan, Newcastle, NSW, Australia School of Nursing, Queensland University of Technology, Kelvin Grove, QLD, Australia (Received 11 November 2009; accepted 19 May 2010 ) Abstract This paper reports on the experience of undergraduate speech language pathology students at one university chosen for the implementation stage of the Palliative Care Curriculum for Undergraduates (PCC4U) Project. Funded by a government department for health and ageing through a national palliative care programme, the project was managed by a team of researchers from the discipline of nursing. The PCC4U project championed the inclusion of palliative care education as an integral part of medical, nursing, and allied healthcare undergraduate training. Of the pilot sites chosen for the PCC4U project, only one site, reported here, included both speech language pathology and social work disciplines, providing an important opportunity for interdisciplinary collaboration on novel curriculum development in an area of mutual interest. This synergy served as an excellent foundation for ongoing opportunities for interdisciplinary teaching and learning in the university. Speech language pathology students reported that the project was an invaluable addition to their education and preparation for clinical practice. Keywords: palliative care, interdisciplinary collaboration, speech language pathology, student training, speech language pathology clinical education. What this paper adds This paper confirms the need for palliative care education across the lifespan for speech language pathology students. This area is commonly neglected in the academic curriculum, despite being encountered commonly during clinical education experiences. Students who participated in this Australian program found it to be useful. Introduction Palliative thinking is an under-reported but increasingly important part of international speech language pathology s scope of practice due to burgeoning referrals from an ageing population with communication and swallowing problems, high levels of surviving preterm infants and children with complex communication needs, and co-morbid medical conditions (Gooden et al. 2005, Speech Pathology Australia 2006). Despite its crucial nature for clinical practice, palliative care education has not until recently had an explicit focus in speech language pathology education (Rivers et al. 2009, Mathisen et al. 2006). To address the lack of systematic attention to palliative care in undergraduate medical, nursing, and allied healthcare education, the Palliative Care Curriculum for Undergraduates (PCC4U) Project developed a government-funded trial of palliative care curricula through chosen university health-related programmes, through a national palliative care programme. This initiative was managed nationally by a team of researchers from the discipline of nursing (Queensland University of Technology 2006). One site reported here was the only inter-professional pilot site chosen for the implementation stage of the PCC4U Project, and involved collaboration between the disciplines of speech language pathology and social work. This paper reports on the experience and evaluation of the speech language pathology involvement in the project. The social work experience will be reported elsewhere. The World Health Organization (WHO) (2005) defined palliative care as: Address correspondence to: Bernice Mathisen, Speech Pathology, The University of Newcastle, University Drive, Callaghan, Newcastle, NSW, 2308, Australia; Bernice.Mathisen@newcastle.edu.au International Journal of Language & Communication Disorders ISSN print/issn online q 2010 Royal College of Speech & Language Therapists DOI: /

2 2 B. Mathisen et al. an approach that improves the quality of life of patients and their families, facing the problems associated with life-limiting illness, through the prevention and relief of suffering by means of early identification, assessment and treatment of pain and other physical, psychosocial and spiritual issues. For full details of the definition, see int/cancer/palliative/definition/en/. Speech language pathologists and their students are most likely to have experienced a palliative approach to care when treating clients who are living with cancer, progressive neurological, respiratory or other complex medical conditions, as well as those in intensive care units, hospices or aged care facilities whose condition is life-limiting (Scott and Foulsom 2004, Frost 2001, Pollens 2004) and Speech Pathology Australia A palliative approach to care is relevant to infants, children and adolescents such as those with extreme prematurity, cancer, dysphagia and complex communication needs. However, for many social and organizational reasons, there may be less emphasis in paediatric practice on life-limiting conditions (Brown and Warr 2007). While palliative care has traditionally been the province of cancer specialists, and most speech language pathologists would equate the term with a medical sub-specialty, the relevance of palliative care to many different clinical and demographic populations is increasingly recognized (Palliative Care Australia 2005). The importance of using an interprofessional teamwork approach in the education of staff and students involved in this work is well recognized in order to fulfil palliative care s goals of a holistic approach to care (Brajtman et al. 2009, Cadell et al. 2007, Hall et al. 2006, McKee et al. 2010, O Connor et al. 2006, Fineberg 2005, Pettifer et al. 2007), despite inherent challenges associated with cultural context or with each profession s implicit and explicit values (Hall 2005, Pahor and Rasmussen 2009, Otis-Green et al. 2009). The PCC4U project provided students in medicine, nursing and allied healthcare professions (including speech language pathology) with an opportunity to explore the meaning of palliative thinking. Additionally, it gave speech language pathology and social work academic staff a forum to implement collaboratively innovative curricula in a field of practice that requires interdisciplinary teamwork. As noted by Parker-Oliver et al. (2005: 279) teamwork is critical to the service and management of the entire person and his or her environment, and is essential in providing a good death. The PCC4U project began in 2003 and was implemented in 2006 after extensive consultation across the wider palliative care community and across all medical, nursing and health-related disciplines, including speech language pathology. The aims firstly, to develop core principles for the inclusion of palliative thinking and palliative care education across undergraduate curricula and secondly, to objectively evaluate the PCC4U implementation phase at the various implementation sites. A third objective was to pilot and assess the effectiveness of the PCC4U CD-ROM learning resource. Four core graduate capabilities were identified by the PCC4U Project: as being integral for health professionals to provide a palliative approach to care for persons with lifelimiting illnesses: (1) Effective communication in the context of an individual s responses to loss and grief, existential challenges, uncertainty and changing goals of care. (2) Appreciation of and respect for the diverse human and clinical responses of each individual throughout their illness trajectory. (3) Understanding of principles for assessment and management of clinical and supportive care needs. (4) The capacity for reflective practice and self-evaluation of one s professional and personal experiences and their cumulative impact on the self and others. In applying the PCC4U project s learning experiences across the four years of the speech language pathology programme, students were asked to reflect on their personal values in relation to the role of relationships and spirituality in a person with a lifelimiting condition, and the social and cultural contexts that influence the formation of these attitudes and values. Exploration and reflection at a personal level was vital for an understanding of individual confidence and comfort in palliative care practice. This exploration of the interaction between the personal, the social and the professional was continually emphasized in both the introduction to the topic and in its application in each discipline. Content relevant to palliative thinking was reflected throughout the PCC4U learning experiences for speech language pathology students. An important component of the project was the facilitative and mentoring role undertaken by the project team who provided a document outlining principles for including palliative care in undergraduate health courses, copies of an interactive CD-ROM for all participating students which was designed to enable them to achieve specified capabilities in providing palliative care, and accompanying facilitators guides. The project team also advised on the adaptation of these generic learning resources by individual programmes, and assisted with conducting site-based evaluations. Each implementation site was required to identify a coordinating academic from the participating discipline/s to liaise with the

3 Palliative care for SLP students 3 project team regarding the integration of palliative care education into their respective professional programmes. As the only inter-professional site, two academics from speech language pathology and social work at the trial site were responsible for the overall management of the project at the university. The project provided an opportunity for the two disciplines to work closely together for the first time, in the context of an organizational restructure that had led to the co-location of the two disciplines in the same university school during the previous year. The challenge confronting the two disciplines was to find a way, in the very short time frame of six months, to embed new curricula into two established programmes which had no prior formal or informal collaboration, and with each having a different educational experience of palliative care. For example, it soon became apparent that a differing methodology was required to address the needs of each discipline. Integration of the topic for speech language pathology students involved examination of the current curricula and enmeshing the topic across the four years and at relevant junctures. For example, speech language pathology students studying motor speech disorders, progressive neurological conditions, aphasia, alternative and augmentative communication (AAC), voice and swallowing disorders (dysphagia) were relevant places where the topic of death and dying could be more easily incorporated into existing courses, whereas speech, language and fluency courses were less likely to be places where this topic would be discussed. In social work education, areas relating to the specific study of palliative care are routinely included such as social attitudes to death, grief, loss and bereavement, professional values relating to human dignity and worth, social justice, service to humanity, integrity and professional competency. These domains are accepted as core business and as such are included in both the classroom and clinical education programmes. A specific focus on palliative care was therefore consistent with prior student experiences of content and method in social work education, whereas the topic of palliative care is less likely to be part of a traditional speech language pathology curriculum. The study of palliative care was included in a fourth year general theory and practice course in which social work students further develop their knowledge and skill for particular fields of practice. The existing course objectives and course structure allowed for a specific focus on palliative care without requiring any formal changes to the curriculum. Students were introduced to core concepts in palliative care, and drew on palliative care scenarios to practice the skills required for the social work role in palliative care. By contrast, speech language pathology students were unlikely to have prior knowledge or experience of palliative thinking and clinical education experience was not expected even though it is included in the scope of practice for speech language pathologists. Despite this, anecdotal experience suggests that speech language pathology students regularly reported that they were frequently exposed to palliative care clients and their families during their clinical education programme, yet they were provided little to no formal theoretical preparation for this situation. Another major constraint for the educators was the need to integrate the palliative care curricula into existing courses that had predetermined and different learning objectives, content and rigid timetables, rather than creating new dedicated palliative courses. The limited time frame for achieving major curriculum change meant that there was limited opportunity to achieve a fully integrated interdisciplinary learning experience at the classroom level. The interdisciplinary collaboration was therefore confined to joint planning of class content and processes for both disciplines, which were then implemented separately by existing academic staff with little to no preparation for teaching palliative care. The intention was to use these initial efforts to test the feasibility of undertaking more sustained and integrated innovations within the existing curriculum of both disciplines. Method The speech language pathology curriculum It was recognized at the outset that some aspects of the palliative care approach may be already implicitly included in speech language pathology student education. This was seen in terms of core values for practice, the significance of communication skills, person-centred approaches, the emphasis on sensitivity and empathy, ethical considerations, and consideration of social responses to death, dying and life-limiting illness. The inclusion of specific and developmental curricula on palliative thinking provides a means of more explicitly naming and linking these aspects of the curriculum to a particular field of practice. This provides an important opportunity for students to appreciate more fully the links between theoretical learning in lectures and clinical practice in their respective disciplines. All speech language pathology students (n ¼ 140) enrolled in the four year undergraduate programme at The University of Newcastle were invited to participate in the project. A phased approach to implementation was adopted across the cohort with different emphases dependent on year status. Table 1 shows the details of the cohort of speech language pathology students, the course in which the

4 4 B. Mathisen et al. Table 1. The PCC4U curricular sequence for speech language pathology students at The University of Newcastle Incorporated into (course name) Theme Teaching method Phase of the PCC4U Project Cohort Lecture using video clips from the PCC4U CD-ROM; follow-up tutorial First year Sensitisation phase Speech Pathology Introduction Talking about life-limiting illness, death and dying Personal realm of palliative care Lecture using material from the PCC4U CD-ROM emphasizing individual narratives; follow-up tutorial Clinical experiences of palliative care Including a palliative thinking question within a key course assessment task Two small facilitated group discussions that integrated students personal and clinical experiences of palliative care Second year Personalization phase Speech Pathology in Education and Community Settings Third year Professionalization phase Speech Pathology in Medical Settings Fourth year Integration phase Professional Issues In Speech Pathology In-depth and experiential exploration of key aspects of palliative care palliative care content was embedded, and the particular theme for discussion in the context of that course. As shown in Table 1, first-year students were sensitized to the notion of talking about life-limiting illness, death and dying and were encouraged to reflect on personal experience of grief, loss and bereavement. A specialist lecture using video clips from the PCC4U CD-ROM was incorporated into a core first-year subject. The lecture was delivered by the usual lecturer (BM) with time given in follow-up tutorials to engage with the subject matter offered on a more personal basis. Second-year students explored the personal realm in-depth in a lecture capitalizing on material from the PCC4U CD-ROM. A follow-up tutorial focused on how information about palliative thinking could transform the students professional persona. The topic of cerebral palsy proved to be an appropriate context for discussion and to demonstrate links to a traditional speech language pathology caseload. By the third year, students were able to engage in a more professional capacity as they could bring to the discussion various adult clinical education experiences of loss, grief and death and dying in addition to personal experiences. A decision was made by the support speech language pathology academic staff that only third-year speech language pathology students (following the PCC4U learning experience) would have the palliative approach incorporated into one of their core assessment tasks, as dysphagia was more easily related to palliative thinking. Emphasis was placed on the exploration of shared values, attitudes and beliefs and encouraging students to develop positive feelings about the care of people who are dying, their families and significant others. As a result, a key courseassessment task was developed to challenge their understanding of palliative thinking and their ability to apply this knowledge in future clinical setting. In fourth-year, follow-up small group discussions facilitated by the same educators who were involved in the lecture, explored palliative care in the context of prior previous personal and clinical experience. Due to this in-depth and experiential approach to a confronting area of practice, students and participating staff approached this in a different way with particular regard and respect for privacy, sensitivity, safety and personal space. Evaluation Students completed a pre- and post-implementation questionnaire (see Appendix A, for example) developed from The University of Wollongong s Centre for Health Service Development, The Caring Communities Evaluation Tool Kit 2.1 and 2.5. In addition, students were invited to participate in a personal interview with the project researcher. Feedback as to

5 Palliative care for SLP students 5 the effectiveness or otherwise of the learning experiences was collected from supporting speech language pathology academic staff at the completion of the programme. Ethics The Queensland University of Technology (QUT) Human Research Ethics Committee granted ethics approval for evaluation of the project and The University of Newcastle Human Research Ethics Committee endorsed this approval after reviewing the procedures to ensure privacy, confidentiality and voluntary participation. The ethics approval related to pre- and post-implementation questionnaires and to one-to-one interviews with students from each discipline who participated in the palliative care education. An information sheet about the data collection process was distributed by The University of Newcastle academics in both participating disciplines prior to the palliative care education sessions. Pre- and postimplementation questionnaires were distributed at the beginning of the relevant class. Students were asked to place the questionnaires, whether completed or not, in an envelope which was sealed at the point of collection and forwarded to the QUT project team. Teaching staff therefore had no information on the number and identity of students who completed the questionnaires. A coding system was used to enable analysis of preand post-implementation responses, ensuring the project team had no identifying details about respondents. The letter of invitation to participate in one-to-one interviews was distributed by The University of Newcastle academics to the students, and interested students responded to the QUT project team, ensuring that teaching staff did not know which students volunteered to participate in an interview. Results and discussion Speech language pathology students were given the opportunity to complete a pre- and post-implementation questionnaire to assess the impact of both the learning experiences offered and the PCC4U CD-ROM which was viewed privately in the student s own time. All raw data was collated by the speech language pathology academic involved in the project (BM) and forwarded to the project coordinator (CB) at QUT for analysis. None of the speech language pathology students reported having had previous education in palliative care. Of the 140 speech language pathology students who completed the palliative care education, a total of 27 (19.2%) respondents completed both the pre- and postimplementation questionnaires (first year n ¼ 19, second year n ¼ 8). It is noteworthy that the majority of the participating students elected not to provide this data, completed one questionnaire only or provided an incomplete data set. Despite this low uptake in the voluntary evaluation phase, preliminary data from the pre- and postimplementation evaluation indicated that following education students increased their knowledge, confidence and preparation in relation to palliative care practice. These students (n ¼ 27, 100%) reported that they participated in a PCC4U lecture and the majority participated in related tutorial activities. Over half of the first- and second-year students who completed both pre- and post-implementation questionnaires reported participating in a tutorial (n ¼ 16, 59.2%) and self-directed learning resource (CD-ROM) (n ¼ 27, 100%). Fifty-nine per cent (n ¼ 16) rated the lecture format as helpful, a further 11% (n ¼ 3) rated it as a very helpful and 30% (n ¼ 8) rated it as a somewhat helpful method for teaching and learning about palliative care. It is interesting to note that no students reported finding the lecture not at all helpful. Table 2. Gender and age of students who completed pre- and post-implementation questionnaires Sex Mean age Median age Minimum age Maximum age Cohort n Female Male (years) (SD) (years) (years) (years) Speech language pathology student cohort a (6.0) Note: a First year: n ¼ 19; second year: n ¼ 8. Table 3. Self-rated student knowledge, confidence and preparation in providing palliative care pre- and post-education Variable Mean change SD 95% CI t d.f. p Knowledge (0 ¼ no knowledge to 10 ¼ extensive knowledge) to Confidence (0 ¼ no knowledge to 10 ¼ extensive knowledge) to Preparation (0 ¼ no knowledge to 10 ¼ extensive knowledge) to

6 6 B. Mathisen et al. Table 4. Proportion of first- and second-year speech language pathology students who completed different PCC4U learning activities Type of learning activity n Proportion who completed this activity (%) Lecture (n ¼ 27) Tutorial (n ¼ 27) Clinical placement (n ¼ 27) Self directed learning using the CD-ROM (n ¼ 27) Other self-directed learning (n ¼ 25) Other (n ¼ 27) Note: Each student completed more than one type of learning activity. Table 5. Helpfulness of PCC4U learning activities for first- and second-year students Learning activity Not at all helpful Somewhat helpful Helpful Very helpful Lecture (n ¼ 27) n ¼ 0 0.0% n ¼ % n ¼ % n ¼ % Table 6. Self-reported knowledge, confidence and preparation by first- and second-year students in providing palliative care Pre-test Post-test Item n Median Mean SD n Median Mean SD Perceived knowledge about providing palliative care (0 ¼ no knowledge to 10 ¼ extensive knowledge) Perceived confidence about providing palliative care (0 ¼ not at all confident to 10 ¼ very confident) Self-reported preparedness about providing palliative care (0 ¼ not at all prepared to 10 ¼ very prepared) In addition, speech language pathology and social work academic staff were asked informally for their comments and reactions to the learning experiences and especially to the PCC4U CD-ROM. This data will be presented elsewhere and was not the focus of this research. The PCC4U project successfully piloted palliative care education with speech language pathology students at The University of Newcastle. The quality of the communication and close personal contact with the project team from QUT was an essential ingredient for its success, as was the provision of a high-quality PCC4U CD-ROM for each student across the four years, which was a major component of student recruitment and acceptability. The PCC4U project identified particular challenges which included little or no clinical experience of palliative care but some personal experience of grief, loss and bereavement; the short time-frame for completion of the project (6 months); workload pressures for speech language pathology and social work academics, and the significant emotional load of the topic for some staff and students. Students need opportunities to integrate the principles of palliative thinking in a variety of clinical practice settings, including in-patient, consultative and/or community services. Speech language pathology students experience a range of graduated clinical education courses throughout their four-year undergraduate or two-year postgraduate degree. These courses aim to provide the student with the opportunity to demonstrate the integration of relevant knowledge, skills and attitudes at entry-level competence in speech, language, fluency, voice and swallowing required for working as a speech language pathologist as originally outlined in the Competency Based Occupational Standards for Speech Pathologists Entry Level (CBOS-Entry Level), (Speech Pathology Australia 2000, 2001) and Competency Assessment in Speech Pathology (COMPASS) (Speech Pathology Australia 2006). A popular feature of the project for all students was the provision of PCC4U CD-ROMs for each student participant. This resource gave the students an invaluable opportunity for self-directed learning which was important given the nature of the topic. This information, originally available on CD-ROM is now readily available on the Internet (see pcc4u). Future plans include the development of a clinical education programme in palliative care for speech language pathologists and its wider application to other Australian speech language pathology graduate and undergraduate courses. Conclusion The PCC4U pilot project provided palliative care education to speech language pathology students at

7 Palliative care for SLP students 7 The University of Newcastle. The topic required a sensitive, graded and integrated approach and it promoted future interdisciplinary learning and application. Students valued the ability to talk about this subject and to view the CD-ROM provided privately. Speech language pathology undergraduate students who chose to participate in the evaluation phase reported that the opportunity to address palliative care was a welcome addition to their coursework. There were several limitations to this study. The first- and second-year students proved to be most compliant in terms of completion of the pre- and postimplementation questionnaires. They reported a significant increase in their knowledge, confidence, and preparation in addressing the issues of death and dying after completing the PCC4U programme. The reasons for the failure to engage third- and fourthyear students in the evaluation phase are intriguing given that they were more likely to have had some clinical experience around death and dying which could theoretically have helped to contextualize their learning. It may be that the teaching methods utilized were more engaging to those students with little to no clinical experience of palliative care. The clear preference for the provision of selfdirected learning opportunities in palliative care education was an important outcome which could be further explored in future research. Further, students reported that the learning resource would have been more engaging with case studies drawn from a speech language pathology caseload. For example, an infant with life-threatening swallowing problems associated with a neurodegenerative condition (Mack and Wolfe 2006) and a person with a significant communication/swallowing impairment using alternative and augmentative communication (AAC) (Fried-Oken and Bardach 2005) could be included in future revisions of the teaching material provided. However, the PCC4U project did result in the timely development of core principles for including palliative care in Australian undergraduate curricula including speech language pathology (and social work) curricula (Commonwealth of Australia 2005). Up to now, the topic of palliative care education has not been included in speech language pathology curricula in any detailed way, although all Australian speech language pathology programmes embed the topic in their programme to a lesser or greater extent. It seems timely, then, that a programme such as the one described here, despite the inherent limitations given the small data set, has been shown to have positive effects on student speech language pathology education. There is some evidence that this should be included routinely, especially given the widening scope of practice for speech language pathologists in the future, who are likely to be commonly involved with individuals with life-limiting conditions and their families across the lifespan. This project could be developed further by extending its application to a wider interdisciplinary cohort of students, in addition to social work, who share an interest in palliative care. Additionally, student learning could be further enhanced by the provision of clinical educators providing palliative care placements shown to be effective for student learning (Morris and Leonard 2007) and closer collaboration between universities providing theoretical preparation for this important topic could be developed. In summary, the Palliative Care Curriculum describes an innovative approach to embedding palliative care education into the academic and clinical experiences of speech language pathology students and provides a model for how this can be accomplished. The positive response from the subset of students who participated in the evaluation validates its further development and future research potential. References BRAJTMAN, S., HALL, P. and BARNES, P., 2009, Enhancing interprofessional education in end-of-life care: an interdisciplinary exploration of death and dying in literature. Journal of Palliative Care, 25, BROWN, E. and WARR, B., 2007, Supporting the Child and the Family in Paediatric Palliative Care (London: Jessica Kingsley). CADELL, S., BOSMA, H., JOHNSTON, M., PORTERFIELD, P., CLINE, L., DA SILVA, J., FRASER, J. and BOSTON, P., 2007, Practising interprofessional teamwork from the first day of class: a model for an interprofessional palliative care course. Journal of Palliative Care, 23, COMMONWEALTH OF AUSTRALIA, 2005, Principles for Including Palliative Care in Undergraduate Curricula (Canberra, ACT: Commonwealth of Australia) (available at: pacc4u.org/palliativecare.pdf) (accessed on 26 June 2006). FINEBERG, I. C., 2005, Preparing professionals for family conferences in palliative care: evaluation results of an interdisciplinary approach. Journal of Palliative Medicine, 8, FRIED-OKEN, M. and BARDACH, L., 2005, End-of-life issues for people who use AAC. Perspectives in Augmentative and Alternative Communication, 14, FROST, M., 2001, The role of the physical, occupational and speech therapy in hospice: patient empowerment. American Journal of Hospice and Palliative Medicine, 18, GOODEN, J.-F., JONES, C., MANN, A., MCDOWALL, M. and SHUGG, J., 2005, Care and Communication: The Role of the Speech Pathologist in Palliative Care (Melbourne: La Trobe University), (available at: careandcommunication) (accessed on 26 June 2006). HALL, P., 2005, Interprofessional teamwork: professional cultures as barriers. Journal of Interprofessional Care, 19 (Suppl. 1), HALL, P., WEAVER, L., FOTHERGILL-BOURBONNAIS, F., AMOS, S., WHITING, N., BARNES, P. and LEGAULT, F., 2006, Interprofessional education in palliative care: a pilot project

8 8 B. Mathisen et al. using popular literature. Journal of Interprofessional Care, 20, MACK, J. W. and WOLFE, J., 2006, Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Current Opinion in Pediatrics, 18, MATHISEN, B., CROFTS, P. and YATES, P., 2006, Implementing the Palliative Care Curriculum for Undergraduates Project. Unpublished Report. [Contact the author for details.]. MCKEE, N., GOODRIDGE, D., REMILLARD, F. and DEON, M., 2010, Interprofessional palliative care problem-based learning: evaluation of a pilot module as a teaching and learning method. Journal of Interprofessional Care, 24, MORRIS, J. and LEONARD, R., 2007, Physiotherapy students experiences of palliative care placements-promoting interprofessional learning and patient-centred approaches. Journal of Interprofessional Care, 21, O CONNOR, M., FISHER, C. and GUILFOYLE, A., 2006, Interdisciplinary teams in palliative care: a critical reflection. International Journal of Palliative Nursing, 12, OTIS-GREEN, S., FERRELL, B., SPOLUM, M., UMAN, G., MULLAN, P., BAIRD, P. and GRANT, M., 2009, An overview of the ACE Project advocating for clinical excellence: transdisciplinary palliative care education. Journal of Cancer Education, 24, PAHOR, M. and RASMUSSEN, B., 2009, How does culture show? A case study of an international and interprofessional course in palliative care. Journal of Interprofessional Care, 23, PALLIATIVE CARE AUSTRALIA, 2005, Standards for Providing Quality Palliative Care for all Australians (Melbourne: Palliative Care Australia), (available at: palliative.care.org.au/policydocuments) (accessed on 11 July 2008). PARKER-OLIVER, D., BRONSTEIN, L. and KURZEJESKI, L., 2005, Examining variables related to successful collaboration on the hospice team. Health and Social Work, 30, PETTIFER, A., COOPER, J. and MUNDAY, D., 2007, Teaching interprofessional teamwork in palliative care a values-based approach. Journal of Palliative Care, 23, POLLENS, R., 2004, Role of the speech language pathologist in palliative hospice care. Journal of Palliative Medicine, 7, QUEENSLAND UNIVERSITY OF TECHNOLOGY, 2006, PCC4U Palliative Care Curriculum for Undergraduates: Implementation Project QUT, Brisbane (Brisbane: Queensland University of Technology) (available at: org). RIVERS, K. O., PERKINS, R. and CARSON, C., 2009, Perceptions of speech pathology and audiology students concerning death and dying: a preliminary study. International Journal of Language and Communication Disorders, 44, SCOTT, A. and FOULSOM, M., 2004, Communication impairment. In R. Voltz, G. Borasio, I. Maddocks, D. Oliver and K. Portenoy (eds), Palliative Care in Neurology (Oxford: Oxford University Press), pp SPEECH PATHOLOGY AUSTRALIA, 2000, Scope of Practice in Speech Pathology (Melbourne: Speech Pathology Australia) (available at: scopeofpractice.pdf) (accessed on 1 June 2006). SPEECH PATHOLOGY AUSTRALIA, 2001, Competency based Occupational Standards for Speech Pathologists Entry Level (Revised) (Melbourne: Speech Pathology Australia). SPEECH PATHOLOGY AUSTRALIA, 2006, Competency Assessment in Speech Pathology (COMPASS) (Melbourne: Speech Pathology Australia). WORLD HEALTH ORGANIZATION (WHO), 2005, WHO Definition of Palliative Care. 13 April (Geneva: WHO) (accessed on (accessed on 1 February 2008).

9 Palliative care for SLP students 9 Appendix A Participant Information Statement Student Questionnaires Palliative Care Curriculum for Undergraduates (PCC4U) Implementation Project Pre-implementation survey Project description The Palliative Care Curriculum for Undergraduates (PCC4U) Implementation Project is an initiative of the Australian Government Department of Health and Ageing funded through its National Palliative Care Program. The primary aim of this project is to provide national support to several tertiary institutions to implement, evaluate, and promote the use of the following palliative care undergraduate curriculum resources:. Principles for Including Palliative Care in Undergraduate Curricula. Interactive CD-ROMs and web based teaching and learning resources, and accompanying facilitator guides. A resource compendium. A video learning resource. The project is being coordinated by a team from the Faculty of Health at Queensland University of Technology. Your university has agreed to participate in this project to help contribute to our understanding of how best to assist students to develop their knowledge and skills in palliative care. Your involvement/participation You are being asked to complete an evaluation questionnaire prior to and immediately after participating in the palliative care learning experiences. These questionnaires will ask you:. about your knowledge of issues in palliative care;. about your perceptions of your confidence in palliative care skills;. about your attitudes to issues in palliative care;. about your learning experiences relating to palliative care. Each questionnaire should take you approximately 20 minutes to complete. Expected benefits It is anticipated that the pilot curriculum resources will improve the quality of palliative care education for undergraduate students of nursing, medicine and allied health professions and to better prepare them for clinical placements and clinical work. This should lead to improved quality of care for persons with life-limiting illnesses. Risks The may be a small risk of psychological distress to participants, as reflecting on your experiences of caring for people with life-limiting illnesses may be upsetting for some people. Your participation in this evaluation is entirely voluntary. You can choose to withdraw at any time. If you do find that the completing the questionnaire does raise concerns, please contact the academic staff member listed on this information sheet or a member of the project team. We will provide you with information about counselling or support services that you may access if you choose.

10 10 B. Mathisen et al. Confidentiality All information that you provide in the questionnaires will be anonymous and confidential. The combined feedback from students and academic staff that participate in this evaluation project will be presented as a report of the PCC4U Implementation Project to the academic staff involved in teaching palliative care at your university and to the Australian Government Department of Health and Ageing. Results will also be used for publication and presentation. However your name will not be linked with your responses and you will not be able to be identified in the reported data. Questionnaires will be coded so that we can compare de-identified pre- and post-questionnaires. No information which can link individuals with the codes is being sought. Please read the coding instructions on the following page and code your questionnaire accordingly before completing the attached questionnaire. Voluntary Participation Participation in the survey is voluntary. You can withdraw your participation from the study at any time without comment or penalty from the Queensland University of Technology, your university, or from any other organisation or body. Questions/further information If you have any questions you may like to ask about this evaluation, please contact a member of the evaluation team as per the contact details below. Concerns/complaints If you, at any time during the evaluation, have concerns about the ethical conduct of the research, you may contact the Queensland University of Technology Research Ethics Officer on (07) or ethicscontact@qut.edu.au. Staff Contact at Your University Dr Bernice Mathisen, Senior Lecturer in Speech Pathology. The University of Newcastle. Telephone: (02) The Project Team Contact Details Professor Patsy Yates Queensland University of Technology Telephone: (07) p.yates@qut.edu.au Palliative Care Curriculum for Undergraduates (PCC4U) Student Pre-implementation Questionnaire Palliative care is defined as an approach that improves the quality of life of individuals and their families facing problems associated with lifethreatening illness. As part of this trial of palliative care learning resources, you will be asked to complete a questionnaire before and after using the learning materials. To enable us to match your pre and post implementation questionnaires in a confidential manner, we ask you follow the instructions below to develop a code that you will be able to replicate without having to remember it. In the space below please write your mother s first name, followed by the first two letters of your first name. For example, if your mother s first name is Val and your name is Bill, you ID would be VAL BI PLEASE PRINT YOUR ID CODE HERE:

11 Palliative care for SLP students 11 Palliative Care Curriculum for Undergraduates (PCC4U) About you Student Pre-implementation Questionnaire Your sex Male A Female A Your age Your country of birth What year of your course are you in at present? Have you ever had any palliative care education or training? Yes A No A If yes, tick all that apply:. On-campus curriculum A. Clinical/ field placement A. Short courses or other formal training outside your formal course curriculum A Do you identify as Aboriginal or Torres Strait Islander? Yes A No A Do you identify with a particular ethnic origin or cultural background? Yes A No A If yes, please specify your ethnic origin or cultural background: About your views on palliative care 1. How would you rate your current knowledge of how to care for people with life-limiting conditions? (Please circle one number) No Extensive knowledge knowledge 2. How would you rate your current level of confidence with caring for people with life-limiting conditions? (Please circle one number) Not at Very confident all confident 3. How well prepared do you feel to care for people with life-limiting conditions? (Please circle one number) Not at Very well prepared all prepared 4. What do you believe are the main components of palliative care? 5. Please rate your degree of confidence with the following patient/family interactions and patient management topics associated with caring for people with life limiting conditions, by ticking the relevant box 1 ¼ Need further basic instruction 2 ¼ Confident to perform with close supervision/coaching 3 ¼ Confident to perform with minimal consultation 4 ¼ Confident to perform independently

12 12 B. Mathisen et al. No. Patient/family interactions and clinical management Answering patients questions about the dying process 2 Supporting the patient or family member when they become upset 3 Informing people of the support services available 4 Discussing different environmental options (e.g. hospital, home, family) 5 Discussing patients wishes for after their death 6 Answering queries about the effects of certain medications 7 Responding to reports of pain from the patient 8 Responding to reports of other symptoms from the patient 9 Delete if not needed 10 Delete if not needed 6. Views about death and dying Please indicate how much you agree or disagree with each of the following statements, by ticking the box that best describe how you feel. (There are no right or wrong answers). No. Statement 1 The end of life is a time of great suffering. 2 Little can be done to help someone achieve a sense of peace at the end of life. 3 The use of strong pain medication can cause the person to stop breathing. 4 I am not comfortable caring for a dying patient. 5 I am not comfortable talking to families about death. 6 When a patient dies I feel that something went wrong. 7 Non-oral feeding methods, including feeding tubes and Percutaneous Endoscopic Gastrostomies (PEGs), should be used to prevent starvation at the end of life. 8 Nursing homes/hospitals are not good places to die. 9 Dying patients make me feel uneasy 10 I feel pretty helpless when I have to care for terminal patients 11 It is frustrating to have to continue talking with relatives or patients who are not going to get better 12 Managing dying patients traumatises me 13 It makes me uncomfortable when a dying patient wants to say goodbye to me 14 I don t look forward to being the personal health care professional of a dying patient 15 When patients begin to discuss death, I feel uncomfortable Agree Strongly Agree Unsure/ Mixed Disagree Disagree Strongly

13 Palliative care for SLP students Attitudes towards Palliative Care Please indicate how much you agree or disagree with each of the following statements, by ticking the box that best describe how you feel. (There are no right or wrong answers). No. Statement 1 Pain at the end of life is an inevitable part of the dying process 2 Pain medication should be given as needed to terminally ill patients 3 Spiritual care should include counselling the terminally ill patient 4 I do not like talking about death and dying with patients 5 Palliative care should be the standard medical treatment for patients who are suffering from a terminal illness 6 Patients should have the right to determine their own degree of medical intervention 7 Addiction to oral morphine is not a serious issue given that terminally ill patients have a short time to live 8 Opening discussions of end-of-life care should be deferred until there is no further effective curative treatment available 9 Estimation of pain by an Doctor or Nurse is a more valid measure of pain than patient self-report 10 Complete pain relief is a reasonable goal even when the pain is not caused by a terminal condition such as cancer 11 Patients have the right to determine their own degree of psychosocial intervention 12 The most appropriate person to make end-of-life decisions is the patient s primary care provider 13 A patient should experience discomfort prior to receiving the next dose of pain medications 14 Patients should be maintained in a pain-free state 15 As a rule, terminally ill patients prefer not to talk about death and dying Strongly Agree Agree Neither Agree nor Disagree Disagree Disagree Strongly This is the end of the survey. Thank you for your time. If you wish to make any further comments, please use the following page. The questionnaire was developed from The University of Wollongong s Centre for Health Service Development, The Caring Communities Evaluation Tool Kit, Tools 2.1 and 2.5.