bluuebunny/crossref_metadata_2025 huggingface dataset:
The “Good” Rural Death: A report of An Ethnographic Study in Alberta, Canada
Authors: Wilson Donna M. , Fillion Lise , Thomas Roger , Justice Christopher , Bhardwaj Paramjit P. , Veillette Anne-Marie
Published: December 2018

Much concern has centred on the “good” death since the modern hospice/palliative care movement began, and considerable progress has been made in urban services to promote the good death. Little is known about the perspectives of people who live in rural and remote areas of Canada on the good death and how this good death might be enabled in those areas. This report is of an ethnographic study in rural Alberta involving English-speaking Albertans. An identical study in Quebec will be reported elsewhere. The 2006–07 Alberta study involved 13 interviews with individuals to understand their personal viewpoints or perspectives and how they were shaped by their experiences, followed by focus group discussions in two representative rural communities for additional insights from rural policy-makers and care providers. Four themes in the Alberta data highlight critical elements of the good rural death. These findings are expected to contribute to rural/remote palliative and end-of-life care developments.
A Quality end of Life from A Palliative Care Patient's Perspective
Authors: Gourdji Iris , Mcvey Lynne , Purden Margaret
Published: December 2018

This qualitative study explored the meaning of quality of life (QOL) from the perspective of palliative care patients by examining their lived experiences and their perceptions of what contributes to their QOL. Ten in-patients — five women and five men — took part in in-depth, semi-structured interviews. When asked about their QOL, they spoke about three distinct aspects: the meaning of a quality life at this stage in their illness trajectory, the experience of living with the illness, and factors that contributed to their QOL. Patients’ approach to life, illness life, and ideal quality life were found to create a sphere of influence that shaped their end-of-life experience. At the heart of living a quality end of life for these patients was their ability to “do the things that I usually do,” “be helpful to others,” and “live in a caring environment,” The findings highlight the importance of understanding each of these factors: patients’ approach to life, illness life, and ideal quality of life, and what they mean to patients in order to tailor interventions to enhance their QOL.
Patients’ experiences of Physical Therapy within Palliative Cancer Care
Authors: Dahlin Ylva , Heiwe Susanne
Published: December 2018

Introduction

Few studies have analyzed patients’ experiences of physical therapy within palliative cancer care. Objective: To describe how patients with incurable cancer experience physical therapy. Method: Seventeen patients were interviewed. Data was analyzed according to a contextual analysis within a phenomenographic approach. Result: Two aspects were identified: “clear and satisfactory” and “unclear and unsatisfactory”. Descriptive categories were: “participation”, “motivation and encouragement”, “independence”, “relief and well-being”, “security and hope”, “unclear part of the care”, and “insufficient number of interventions”. “Participation” was a core category interrelated with patient satisfaction. Conclusion: Physical therapy was important: it enabled independence, provided relief from distressing symptoms, and offered support. However, communication and coordination within the palliative care team has to improve if it is to minimize the negative impact of symptom distress on patient well-being and quality of life. Also, physical therapists must develop strategies for patient empowerment and methods for assessing and evaluating qualitative aspects of physical therapy in palliative cancer care.
Referrals of Cancer versus Non-Cancer Patients to A Palliative Care Consult Team: Do They Differ?
Authors: Cantin Boris , Rothuisen Laura E. , Buclin Thierry , Pereira José , Mazzocato Claudia
Published: December 2018

This retrospective study compared 100 consecutive non-cancer (NC) patients referred to a palliative care consult team (PCT) in a Swiss university hospital to 506 cancer (C) patients referred during the same period. The frequencies of reported symptoms were similar in both groups. The main reasons for referral in the NC group were symptom control, global evaluation, and assistance with discharge. Requests for symptom control predominated in the C group. Prior to the first visit, 50% of NC patients were on opioids, compared to 58% of C patients. After the first visit, the proportion of NC patients on opioids increased to 64% and the proportion of C patients to 73%. The median daily oral morphine equivalent dose for NC patients taking opioids prior to the first PCT visit was higher than that for C patients (60 mg versus 45 mg). At the time of death or discharge, the percentage of NC patients on opioids was 64%, while that of C patients was 76%. Moreover, NC patients were on significantly lower median doses of opioids than C patients (31 mg versus 60 mg). Over half the NC patients died during hospitalization, as compared to 33% of C patients. Only 6% of NC patients were discharged to palliative care units, as compared to 22% of C patients.
Transdermal Fentanyl as A Front-Line Approach to Moderate-Severe Pain: A meta-analysis of Randomized Clinical Trials
Authors: Tassinari Davide , Sartori Sergio , Tamburini Emiliano , Scarpi Emanuela , Tombesi Paola , Santelmo Carlotta , Maltoni Marco
Published: December 2018

Objective: The safety of transdermal fentanyl (TF) in comparison with slow-release oral morphine (SROM) in moderate-severe pain was assessed. Design: A systematic review of the literature was performed to identify all randomized trials comparing TF and SROM in moderate-severe pain. Overall safety was the primary end point. Trials enrolling both cancer and non-cancer patients were included in the analysis. Heterogeneity was assessed using the Mantel-Haenszel test; a random effects model was used for the pooled analysis. Cumulative and distinctive analyses for cancer and non-cancer pain were performed whenever the outcome was reported in at least two trials. Results: Five trials met the inclusion criteria. A significant advantage of TF was documented for constipation, laxative use, and urinary retention. TF was preferred by cancer and non-cancer patients. A difference in favour of SROM was documented for nausea, diarrhea, and sweating in cancer and non-cancer patients. No differences were observed for the other items considered. Conclusions: TF and SROM seem to have a different side effects profile, and TF seems to be preferred by patients. The hierarchical approach traditionally recommended by the main scientific societies (oral morphine and then TF) could be replaced by a front-line approach based on patients’ characteristics and needs.
Dealing with Palliative Care Patients’ Incomplete Music Therapy Legacies: Reflexive Group Supervision Research
Authors: O'Callaghan Clare , Petering Helen , Thomas Amy , Crappsley Rebecca
Published: December 2018

Legacies encompass treasured memories and items such as wills, publications, and songs, which help to validate lives. Legacy creation is encouraged by palliative care staff to help patients deal with loss and find personal meaning; the legacy works may also support the bereaved. Within the literature, however, there is no consideration of how staff deal with patients’ incomplete legacies when patients relocate, deteriorate, or die. Our research focuses on this question: What experiences did four music therapists have with palliative care patients’ incomplete tangible music therapy legacies? Data included transcripts from the therapists’ discussions about patients’ incomplete legacies in three reflexive group supervision sessions and further reflections written during transcript verification. Inductive thematic analysis yielded five themes: the nature of incomplete music therapy legacies; reasons for and feelings about these legacies; factors determining what music therapists do with them; considerations about their future “life”; and the ways therapists’ shared reflections can support their future legacy work.
The Long-Term effect of A Population-Based Educational Intervention Focusing on End-Of-Life Home Care, Life-Prolongation Treatment, and Knowledge about Palliative Care
Authors: Sato Kazuki , Miyashita Mitsunori , Morita Tatsuya , Suzuki Masao
Published: December 2018

Misconceptions and a lack of knowledge are barriers to providing palliative care. This study examined the long-term effect of an educational intervention with the general public focusing on end-of-life home care, life-prolongation treatment, and knowledge about palliative care. We offered a one-hour educational lecture for community residents in 11 districts in Fukushima, Japan. Lecture attendees were asked to complete pre- and post-questionnaires and a six-month postal follow-up questionnaire. A total of 424 respondents completed and returned the follow-up questionnaire. Beliefs about the feasibility of home death did not significantly change. In addition, many of the other significant changes that occurred immediately after the intervention reverted to initial opinions six months later. This population-based educational intervention was not effective for the long term, except that it had a partial influence on certain misconceptions about palliative care. Therefore, other approaches are needed to achieve substantial long-term effects.
Voyages in Care and Understanding
Authors: Roy David J.
Published: December 2018

It is my responsibility, as editor of the Journal of Palliative Care, to ensure that the readership is kept up to date on important events and advances in the field. The publication of abstracts on appropriate occasions serves this purpose.

The 2009 Canadian Hospice Palliative Care Conference merits serious attention in this Canadian-based international journal. I am happy to publish the abstracts of oral presentations for this interdisciplinary gathering of palliative care experts from around the world.

Since the Journal is dedicated to promoting quality articles and methodologically rigorous research in palliative care, I look forward to the publication in the near future of a number of the papers announced in these abstracts.
Cradled between Heaven and Earth A Reply to My Patient's Family: Why I couldn't offer Active Euthanasia When you Asked for It
Authors: Smith Beverley
Published: December 2018

In the summer of 2008, I became involved in the care of a woman who had breast cancer. Her family requested that I end her life on a number of occasions. The request came about because she had expressed a wish to die, and because her stay on the palliative care unit did not last for days, as they had expected, but had stretched into weeks. These thoughts are an attempt to address some of the issues we discussed over those weeks…
Adaptation, Dissemination, and evaluation of A Cancer Palliative Care Curriculum for the Indian Health System
Authors: Arenella Cheryl , Finke Bruce , Domer Timothy , Kaur Judith S. , Merriman Melanie P. , Ousley Anita
Published: December 2018

In 2006, the Indian Health Service (IHS) and the National Cancer Institute (NCI) collaborated to develop an interdisciplinary palliative training program for health professionals in the Indian health system. Their goal was to improve clinician knowledge and skills in palliative care, to train future trainers, and to increase access to palliative care for American Indians and Alaska Natives. The combined program of participant self-study utilizing a multimedia CD-ROM and train-the-trainer seminars followed the curriculum entitled Education in Palliative and End-of-Life Care for Oncology (EPEC™-O) with American Indian and Alaska Native Cultural Considerations. Three seminars trained 89 interdisciplinary health providers from throughout the Indian health system. Evaluations demonstrated increased clinician self-reported knowledge and confidence to train and high satisfaction with training. Forty-two of 67 participants completed an anonymous post-conference Web questionnaire. Nearly half had con ducted or definitively planned palliative education sessions, and 57 percent started new palliative services at their practice sites.
Gathering Information to Develop Palliative Care Programs for Alaska's Aboriginal Peoples
Authors: Decourtney Christine A. , Branch P. Kay , Morgan Karen M.
Published: December 2018

Over an eight-year period, the authors conducted focus groups in six Alaska Aboriginal communities. They sought information about traditional ways of caring for the dying, current values and preferences surrounding death, the kind of support caregivers need, and how a palliative care program could assist families caring for loved ones in the community. Focus groups are a standard qualitative research tool for gathering information when a new program or service is planned. However, for Alaska's Aboriginal people living in remote settings, the standard focus group design is not useful. That design was modified to reflect cultural norms and communication methods while adhering to standards of qualitative research. Communities selected represented different groups of Alaska's Indigenous people; 84 Aboriginal elders participated. Culturally modified focus groups yielded rich and useful information about historical and traditional practices surrounding death. Participants also vocalized expectations and concerns regarding their own eventual deaths. The process of conducting six different focus groups throughout Alaska yielded valuable information about community engagement in Aboriginal communities.
Family Caregivers of Palliative Cancer Patients at Home: The puzzle of Pain Management
Authors: Mehta Anita , Cohen S. Robin , Carnevale Franco A. , Ezer Hélène , Ducharme Francine
Published: December 2018

The purpose of this grounded theory study was to understand the processes used by family care-givers to manage the pain of cancer patients at home. A total of 24 family caregivers participated. They were recruited using purposeful then theoretical sampling. The data sources were taped, transcribed (semi-structured) interviews and field notes. Data analysis was based on Strauss and Corbin's (1998) requirements for open, axial, and selective coding. The result was an explanatory model titled “the puzzle of pain management,” which includes four main processes: “drawing on past experiences”; “strategizing a game plan”; “striving to respond to pain”; and “gauging the best fit,” a decision-making process that joins the puzzle pieces. Understanding how family caregivers assemble their puzzle pieces can help health care professionals make decisions related to the care plans they create for pain control and help them to recognize the importance of providing information as part of resolving the puzzle of pain management.
Skills Training to Support Patients considering place of End-Of-Life Care: A Randomized Control Trial
Authors: Murray Mary Ann , Stacey Dawn , Wilson Keith G. , O'Connor Annette M.
Published: December 2018

The effect of a program to train clinicians to support patients making decisions about place of end-of-life care was evaluated. In all, 88 oncology and/or palliative care nursing and allied health providers from three Ontario health networks were randomly assigned to an education or control condition. Quality of decision support provided to standardized patients was measured before and after training, as were participants’ perceptions about the acceptability of the training program and their intentions to engage in patient decision support. Compared to controls, intervention group members improved the quality of decision support provided and were more likely to address a wider range of decision-making needs. Intervention group members scored higher on a knowledge test of decision support than controls and rated the components as acceptable. Improvements in the quality of decision support can be made by providing training and practical tools such as a patient decision aid.
Crisis in Caregiving: When Home-Based End-Of-Life Care is No Longer Possible
Authors: Waldrop Deborah P. , Meeker Mary Ann
Published: December 2018

Understanding the factors that precipitate caregiving crises that cannot be resolved at home is central to improving options for care at life's end. The purpose of this study was to explore caregivers’ perceptions of the crises that preceded and were resolved by relocation during end-of-life care. In-depth interviews were conducted with 36 caregivers of people who died in a hospice house. The results illuminate a conceptual model of the caregiving crisis, which has three stages: a) precipitating factors — the interrelationship between illness trajectory and reciprocal suffering (physical, psychological, emotional and social distress), b) crisis, and c) resolution (settled or unsettled). Relocation presents an opportunity for families to relinquish the burden of end-stage care so that they can resume and complete a lifelong relationship. Careful recognition of and attention to the intimate dynamics that accompany suffering and dying are essential elements of palliative care, which aims to uphold the dignity of the dying person and the integrity of the family in both caregiving and bereavement.
The effect of Palliative Daycare on Hope: A comparison of Daycare Patients with Two Control Groups
Authors: Guy Margaret P. , Higginson Irene J. , Amesbury Brendan D.W.
Published: December 2018

Background: Despite expansion in palliative daycare services, research has not demonstrated an improvement in patient outcomes. This study aimed to determine the effect of palliative daycare on hope. Methods: This was a prospective cohort study that compared three groups of patients: a daycare group and two control groups, one recruited before daycare opened and a matched comparison group. Patients were interviewed at baseline and at two follow-ups using the Herth Hope Index. Results: In all, 22 daycare patients completed a baseline interview (T1); 12 a second (T2); and 9 a third (T3). Corresponding numbers were: before group (56, 34, 24) and matched group (49, 29, 19). An independent samples t-test confirmed a significant difference between the groups from T1 to T2 (mean difference=3.20, p=0.007), with the daycare group experiencing an increase in hope not seen in the other groups. However, this was not maintained. Conclusion: Daycare may effect an initial improvement in hope. The study suffered from attrition and the sample was small. Further robust evaluation of daycare is needed.
Evaluation of A Training Program to Assist Care Staff to Better Recognize and Manage Depression among Palliative Care Patients and Their Families
Authors: McCabe Marita P. , Goldhammer Denisa , Mellor David , Hallford David , Davison Tanya
Published: December 2018

This study was designed to evaluate the effectiveness of a training program to improve the knowledge, attitudes, and self-efficacy of palliative care staff and thus enable them to better detect and manage depression among palliative care patients and their families. Participants were 90 professional carers who completed a four-session training program. Knowledge, attitudes, self-efficacy, and barriers to working with depressed patients were assessed pre-intervention, post-intervention, and at a three-month follow-up. The results demonstrated that compared to the control group, the intervention group had improved in all of these areas. Improvements were maintained at the three-month follow-up in all areas except attitudes. The results of this study indicate the importance of training in managing depression among palliative care staff. Booster sessions will likely be needed to ensure that training program gains are maintained.
What is Symptom Burden: A Qualitative exploration of Patient Definitions
Authors: Gill Ashlinder , Chakraborty Anita , Selby Debbie
Published: December 2018

Current definitions of “symptom burden” are largely derived from clinicians, and there are many variations in the way the term is used, defined, and operationalized. The aim of this study was to explore patient perceptions of symptom burden in the context of advanced and incurable disease. A group of 58 cancer patients followed by a palliative care team answered a single open-ended question: “Please define ‘symptom burden.”’ Three authors independently coded and analyzed patient responses using a grounded theory approach. They identified six themes, the most frequently coded of which were: “can't do usual activities,” “psychological suffering,” and “specific severe symptoms.” Our findings indicate that the concept of symptom burden is complex and extends beyond numerical symptom-scoring systems. In addition to inquiring about specific symptoms, it may be important to directly ask patients about their overall burden or experience of symptoms.
Pediatric Palliative Care Education for Medical Students: Development and evaluation of A Pilot Program
Authors: Korzeniewska-Eksterowicz Aleksandra , Kȩdzierska Bogna , Cynker-McCarthy MƗSgorzata , Przysło Łukasz , Stolarska MƗSgorzata , Nowicki Grzegorz F. , Młynarski Wojciech
Published: December 2018

In Poland, medical curricula cover palliative care for adults, not for children. This paper evaluates feedback of students who participated in a pilot pediatric palliative care education program. Method: An anonymous questionnaire was designed for the students; they were asked to assess each aspect of the program on a scale of 0 to 6 (0 denoted complete dissatisfaction; 6, complete satisfaction). Results: 207 students participated in the program, 197 evaluated it, and 160 formed the research data group. More than 50 percent gave the program 5 points (mean ± SD; 4.91 ± 0.9). A total of 79 students (44 percent) assessed the material as 51 to 75 percent new, and 56 students (31 percent) placed it between 76 and 100 percent. A majority indicated that the material would be most useful to them in their future clinical work. Most respondents (78 percent) stated that pediatric palliative care should be included in the pediatrics curriculum. The contribution of the program instructors was given a high score (on average, 5.26 ± 0.52). Conclusion: The pediatric palliative care education program was feasible, and it was well received by the students who undertook it.
Toward A Population-Based Approach to End-Of-Life Care Surveillance in Canada: Initial Efforts and Lessons
Authors: Lau Francis , Downing Michael , Tayler Carolyn , Fassbender Konrad , Lesperance Mary , Barnett Jeff
Published: December 2018

This paper describes a project undertaken by the Hospice Palliative End-of-Life Care Surveillance Team Network — one of four Cancer Surveillance and Epidemiology Networks established by the Canadian Partnership Against Cancer in 2009 to create information products that can be used to inform cancer control. The project was designed to improve the quality and use of existing electronic patient databases in its member organizations. The project's intent was to better understand terminally ill cancer patients in their final year of life, with noncancer as comparison. The network created an early design for a Web-based end-of-life care surveillance system prototype. Using a flagging process, anonymized data sets on cancer/ noncancer palliative patients and those who died in 2008–2009 were extracted and analyzed. The Australian palliative approach was adapted as the conceptual model based on the data sets available. Common data elements were defined then mapped to local data sets to create a common data set. Information products were created as online reports. Throughout the project, members were engaged in knowledge translation. Overall, the project was well received by network members. There are still major data-quality and linkage issues that require further work.
Comparing End-Of-Life Care for Hospitalized Patients with Chronic Obstructive Pulmonary Disease and Lung Cancer in Taiwan
Authors: Chou Wen-Chi , Lai Yu-Te , Huang Yun-Chin , Chang Chen-Ling , Wu Wei-Shan , Hung Yu-Shin
Published: December 2018

When it comes to end-of-life care, chronic obstructive pulmonary disease (COPD) patients are often treated differently from lung cancer patients. However, few reports have compared end-of-life care between these two groups. We investigated the differences between patients with end-stage COPD and end-stage lung cancer based on end-of-life symptoms and clinical practice patterns using a retrospective study of COPD and lung cancer patients who died in an acute care hospital in Taiwan. End-stage COPD patients had more comorbidities and spent more days in the intensive care unit (ICU) than end-stage lung cancer patients. They were more likely to die in the ICU and less likely to receive hospice care. COPD patients also had more invasive procedures, were less likely to use narcotic and sedative drugs, and were less likely to have given do-not-resuscitate consent. Symptoms were similar between these two groups. Differences in treatment management suggest that COPD patients receive more care aimed at prolonging life than care aimed at relieving symptoms and providing end-of-life support. It may be more difficult to determine when COPD patients are at the end-of-life stage than it is to identify when lung cancer patients are at that stage. Our findings indicate that in Taiwan, more effort should be made to give end-stage COPD patients the same access to hospice care as end-stage lung cancer patients.
Determinants of Family Satisfaction with Inpatient Palliative Care in Korea
Authors: Park Chang-Hae , Shin Dong-Wook , Choi Jin Young , Kang Jina , Mo Ha Na , Baik Young Ji , Kim Yeo Hwan , Kang Min Joo , Gwak Jung Im , Lee Jeong Ja
Published: December 2018

Objective: We aimed to identify which structures and processes of care are key determinants of overall satisfaction with palliative care. Methods: A nationwide, multicentre, cross-sectional questionnaire survey was conducted with 501 bereaved family members of terminal cancer patients (effective response rate: 20.9 percent). Structures and processes were evaluated using the Care Evaluation Scale (CES). Results: In univariate analyses, all domains of the CES were significantly associated with overall satisfaction with care. In multivariate analyses, the domains of physical care by physician, physical care by nurse, environment, and coordination positively influenced overall satisfaction. After case-mix adjustment, physical care by nurse, age of patient, and lower education level of bereaved family member remained as significant determinants. Conclusion: Our finding that nursing is the most critical determinant of overall satisfaction within many structure and process domains has an important implication for clinical quality improvement and resource allocation.
Prevalence and predictors of Transition to A Palliative Care Approach among Hospital Inpatients in England
Authors: Gott Merryn , Gardiner Clare , Ryan Tony , Parker Chris , Noble Bill , Ingleton Christine
Published: December 2018

Aim: The aim of this research was to quantify the extent of palliative care transitions among patients in two acute hospitals and to identify factors predicting the initiation of a transition to palliative care. Methods: We conducted a prospective survey of hospital inpatients in two hospitals in the United Kingdom in which we examined hospital case notes for evidence of palliative care need. Further data were collected from medical staff, nursing staff, patients, and proxy consultees. Results: Of 514 participating patients, 183 (36.2 percent) fulfilled criteria for palliative care need. In 61 cases (33 percent), there was evidence of transition to a palliative care approach. There was an increased likelihood of palliative care transition among patients with cancer, dementia, or stroke. Conclusions: There is a need for discussion of the meaning, and operational-ization, of palliative care transitions if UK policy to increase the extent of transitions is to be enacted. This study has implications internationally, given the increased global focus on the role of the acute hospital in palliative care.
The Size, Share, and predictors of Publicly Financed Healthcare Costs in the Home Setting over the Palliative Care Trajectory: A Prospective Study
Authors: Chai Huamin , Guerriere Denise N. , Zagorski Brandon , Kennedy Julia , Coyte Peter C.
Published: December 2018

Introduction: The increasing attention on home-based service provision for end-of-life care has resulted in greater financial demands being placed on family caregivers. The purpose of this study was to assess publicly financed costs within a home-based setting from a societal perspective. Methods: A pro spective cohort study design was employed. In all, 129 caregivers of palliative care patients were interviewed biweekly for a total of 667 interviews. Multiple regression analysis (log-linear regression and seemingly unrelated regression [SUR]) was conducted. Results: While publicly financed costs accounted for 20 percent of the full economic costs and increased with proximity to death, 76.7 percent of costs were borne by patients’ caregivers in the form of unpaid caregiving. The share of publicly financed healthcare costs was driven by patients’ and caregivers’ sociodemographic and clinical characteristics. Conclusion: These findings warrant affording greater attention to policies and interventions intended to reduce the economic burden on palliative patients and their caregivers.
Conversion of Karnofsky Performance Status (Kps) and Eastern Cooperative Oncology Group Performance Status (Ecog) to Palliative Performance Scale (Pps), and the interchangeability of Pps and Kps in Prognostic Tools
Authors: de Kock Ingrid , Mirhosseini Mehrnoush , Lau Francis , Thai Vincent , Downing Michael , Quan Hue , Lesperance Mary , Yang Ju
Published: December 2018

Aim: The aim of our study was to assess whether the Karnofsky Performance Status (KPS), the Eastern Cooperative Oncology Group (ECOG) Performance Status, and the Palliative Performance Scale (PPS) are interchangeable individually or within two prognostic tools: the Palliative Prognostic Score (PaP) and the Palliative Prognostic Index (PPI). Methods: We performed a subset analysis of a prospective comparative study of functional and prognostic tools and clinician prediction of survival. We studied 955 patients with advanced life-limiting illnesses (cancer and non-cancer) in the acute care and community settings. We used a descriptive statistical model and Spearman's rank correlation to assess these interchangeabilities. Results: There is a direct positive linear relationship between the KPS and the PPS, and a direct negative linear relationship between these tools and the ECOG. Exchange of the KPS and the PPS was possible within the PaP and the PPI. Conclusion: The PPS and the KPS can be used interchangeably as functional tools and within prognostic tools. The ECOG is interchangeable with the PPS and the KPS, but this interchange-ability is population-specific.
Exploring the quality of Life at the end of Life (Qual-E) Instrument with Australian Palliative Care Hospital Patients: Hurdles and Directions
Authors: Wilkinson Anne , Slatyer Susan , McCullough Kylie , Williams Anne
Published: December 2018

The provision of care that enhances the quality of life at the end of life is a fundamental goal of palliative care services. This pilot study explored the application of the Quality of Life at the End of Life (QUAL-E) instrument in a sample of 52 patients who were hospitalized in two metropolitan Western Australian hospitals. Participants were given the option to complete the QUAL-E either as a self-report (n=9, 17.3 percent) or, aided by a research assistant, as a structured interview (n=43, 82.7 percent). The instrument demonstrated patient acceptability and face validity, particularly when it was administered with the assistance of a research assistant. Despite having difficulty with some questions, patients expressed their appreciation at being given the opportunity to contribute to the research and to reflect upon and give voice to their thoughts and feelings. Health practitioners indicated that the instrument could be a valuable tool for holistic assessment and service evaluation. We suggest that minor changes be made to the QUAL-E before it is used further in an Australian context; we also recommend that this instrument be tested in other settings and populations.
Distribution and sharing of Palliative Care Costs in Rural areas of Canada
Authors: Dumont Serge , Jacobs Philip , Turcotte Véronique , Turcotte Stéphane , Johnston Grace
Published: December 2018

Few data are available on the costs occurring during the palliative phase of care and on the sharing of these costs in rural areas. This study aimed to evaluate the costs related to all resources used by rural palliative care patients and to examine how these costs were shared between the public healthcare system (PHCS), patients’ families, and not-for-profit organizations (NFPOs). A prospective longitudinal study was undertaken of 82 palliative care patients and their main informal caregivers in rural areas of four Canadian provinces. Telephone interviews were completed at two-week intervals. The mean total cost per patient for a six-month participation in a palliative care program was CA$31,678 ± 1,160. A large part of this cost was attributable to inpatient hospital stays and was assumed by the PHCS. The patient's family contributed less than a quarter of the mean total cost per patient, and this was mainly attributable to caregiving time.
Structural engineering to control density, conformation, and bioactivity of the poly(ethylene glycol)-grafted poly(urethane urea) scaffolds
Authors: Shaneh Shideh , Shokrolahi Fatemeh , Shokrollahi Parvin , Yeganeh Hamid , Omidian Hossein
Published: December 2018

Poly(urethane urea) scaffolds were fabricated through combined salt leaching and solvent casting methods. The scaffolds were then functionalized via aminolysis with poly(ethylene glycol) (PEG- g-PUU). To compare its bioactivity, gelatin was also grafted onto the aminolyzed poly(urethane urea) surface (Gel- g-PUU). Chemical changes at the surface were then monitored using quantitative/qualitative methods. Grafting with both gelatin and poly(ethylene glycol) remarkably enhanced the wettability of poly(urethane urea). Proliferation of human adipose–derived mesenchymal stem cells on poly(urethane urea) and the modified poly(urethane urea)s was evaluated by 3-[4,5-dimethylthiazol-2-yl]-2,5 diphenyl tetrazolium bromide assay. The cell experiment results showed that both the modified poly(urethane urea)s enhanced the attachment and proliferation of human adipose–derived mesenchymal stem cells compared to pure poly(urethane urea). Based on previous reports, while a supportive role is observed at adequate poly(ethylene glycol) graft densities, cell adhesion and proliferation are inhibited at very high grafting densities. To correlate the cell data to poly(ethylene glycol) conformations, the surface tension was measured. Data on human adipose–derived mesenchymal stem cells’ attachment/proliferation and contact angle/surface free energy together showed that the grafting density of poly(ethylene glycol) was regulated by optimizing aminolysis conditions, careful selection of poly(ethylene glycol)’s molecular weight, and bulk properties of the matrix poly(urethane urea). As a result, surface overcrowding and brush conformation of the poly(ethylene glycol) chains were avoided, and human adipose–derived mesenchymal stem cell attachment and proliferation occurred on the PEG- g-PUU scaffold at a comparable level to the Gel- g-PUU.
Immigration, Social Networks, and the Emergence of Ethnic Segmentation in a Low-Skill Labor Market
Authors: Meyer Ruth , Vasey Huw
Published: December 2018

Postwar migration to “western” countries has gone hand in hand with the development of ethnically segmented labor markets, particularly in low-skill roles where entry requirements are minimal. While numerous theories have been forwarded as to why such situations occur, it has remained difficult to empirically test the relative impact of the many interacting processes that produce segmentation in the labor market. In this article, we investigate the processes of ethnic segmentation in low-skilled labor markets, where referral hiring is the norm, with particular reference to the role of ethnically homogeneous social networks and forms of discrimination. We employ an agent-based modeling approach, adapting key elements from Waldinger and Lichter’s widely cited networked explanation of ethnic labor market segmentation. This approach allows us to provide a different lens on theories of ethnic labor market segmentation, investigating the relative impacts of different causal processes that are difficult to investigate in this way using other social science approaches. The overall results from our model indicate that ethnically homogeneous social networks have the effect of increasing the level of ethnic segmentation within a referral-based labor market, but that these networks also help immigrant populations grow and protect them from the negative impacts of employer discrimination. Furthermore, these networks have a greater impact on labor market segmentation than discrimination alone. In conclusion, this sociologically informed agent-based model provides important insights into the manner and extent in which changes in social conditions may affect population-level phenomena.
Trade union strategy in fashion retail in Italy and the USA: Converging divergence between institutions and mobilization?
Authors: Gasparri Stefano , Ikeler Peter , Fullin Giovanna
Published: December 2018

We investigate trade union strategies in fashion retail, a sector with endemic low wages, precarity and a representation gap. Unions in Milan organized ‘zero-hours contract’ workers, while their counterparts in New York established an alternative channel of representation, the Retail Action Project. We argue, first, that the dynamics of both cases are counterintuitive, displaying institution-building in the USA and grassroots mobilization in Italy; second, union identity stands out as a key revitalizing factor, since only those unions with a broad working-class orientation could provide an effective representation for fashion retail workers.
Assisting Disadvantaged People to Overcome Systemic Factors Limiting Tertiary Opportunities
Authors: Taylor Robert
Published: December 2018

This paper describes the Q-STEP program at the Queensland University of Technology (QUT). Q-STEP is an affirmative action program that aims to increase participation at QUT of people from socioeconomically disadvantaged backgrounds. The program raises awareness of higher education as an option among school students and mature age students, assists the entry of suitable students to QUT, and supports them while they attend university. Since 1991, almost 600 students have entered QUT through the program and have been found to achieve similar academic results to other students.
Research Digest
Authors: Machin Michael , Albion Majella
Published: December 2018

This section of the journal includes abstracts of research. Research reported is at varying stages from early development of ideas to completion. Authors of abstracts would like to hear from anyone else working in their area. Please contact authors if you are interested, either through the Editor or direct.
A Report of a Mentoring Program in Western Australia
Authors: Box Gerri , House Val
Published: December 2018

Most staff at universities in Australia could cite a number of high schools within their catchments with identified low rates of tertiary entry. In turn, teaching staff at those high schools have a reasonable idea and view of the percentage of students from their final year who will go on to higher education. What may develop from this identification is “opportunity blindness”, with many students not considering tertiary study as an option for post-school education. This paper is the report of a project initiative by Murdoch University and Hamilton Senior High School in Western Australia that hopes to have as its long-term outcome the increased enrolment of Year 12 students into tertiary education.
Aboriginal and Torres Strait Islander Recruitment and Career Development Strategy for the Library and Information Sector
Authors: Fletcher Felicia
Published: December 2018

The development and implementation of the Aboriginal and Torres Strait Islander Recruitment and career development strategy for the library and information sector is described in this article. Included are the strategy's objectives, employment programs and their structure, the outcomes of the first year of implementation and the framework for recruitment. The need for the program structure to be responsive to community needs and the important role government and employers play in implementing the strategy are identified.
Past and Future Training for Careers in Sports Psychology
Authors: Aldridge Tim , Andersen Mark , Stanton Brendan , Shen Christopher
Published: December 2018

Sport psychology is an emerging career specialisation in Australia. Training models for a career in the field have only recently been developed. This research concerned past education and vocational histories of advanced degree graduates who specialised in some area of sport psychology. Thirty-two graduates from fourth year, masters and doctoral programs in Australia completed surveys concerning their educational background and vocational histories since graduating with a postgraduate degree. Graduates reported their experiences, income and perceptions and expectations pertaining to work in sport psychology. Results suggest that the main initial and future goals of graduates were to consult with athletes. Most, however, are having difficulty finding paid work in sport psychology. Graduates outlined many suggestions and advice for prospective students. Implications of the results for future training and education in the field of applied sport psychology within Australia are provided.
National Clearinghouse for Youth Studies
Authors: Hugo Anne , Tasmania Hobart
Published: December 2018

Given the plethora of organisations, agencies, peak bodies, publications, newsletters and services that focus on youth, the task of finding particular information on youth in Australia can be daunting and time consuming. The National Clearinghouse for Youth Studies (NCYS) is a non-profit project that has a brief to collect, publish and disseminate information relating to youth in Australia. It is a major publisher in the youth field in Australia, with clients and a readership including professionals working in the youth field, such as educators, practitioners, researchers, youth workers, program planners, policy makers and, increasingly, students. Its growing publications list is complemented by a large on-line resource containing information about the youth field gathered from a variety of sources and presented on the World Wide Web. This case study describes the origins of the NCYS, the development of its services, the range and scope of its print publications, and a description of its on-line information service.
Giving Spiritual Meaning to Career Choice, Path and Experience
Authors: Lips-Wiersma Marjolein
Published: December 2018

This quote suggests that there are many ways to give meaning to one's career; it can be seen as a utilitarian function, an expression of skills and craftsmanship and a spiritual expression. It is this last meaning that we know very little about. Is this important to those who have a spiritual belief system and does it express itself in career choice, path and experience? This article suggests it is important both for the person who has a spiritual belief system and the career practitioner who will try to assist the client in making a career choice that is closely aligned to his/her personal values.
Do We Need Potent Intravenous Antiplatelet Inhibition at the Time of Reperfusion During ST-Segment Elevation Myocardial Infarction?
Authors: Allencherril Joseph , Alam Mahboob , Levine Glenn , Jneid Hani , Atar Dan , Kloner Robert A. , Birnbaum Yochai
Published: December 2018

Acute myocardial infarction (MI) is still a large source of morbidity and mortality worldwide. Although early reperfusion therapy has been prioritized in the modern era of percutaneous coronary intervention and thrombolysis, attempts at incremental improvements in clinical outcomes by reducing MI size have not been successful so far. Herein, we review the studies that have evaluated immediate-onset antiplatelet therapy as attempts to improve meaningful clinical outcomes in ST-segment elevation MI (STEMI). Unfortunately, many of the adjunctive pharmacotherapies have proven to be disappointing. Recent studies performed in the background of routine oral administration of P2Y12 adenosine receptor inhibitors, which may take several hours to take full effect, and aspirin have largely shown no improvement in outcomes, despite an earlier onset of antiplatelet activity of the investigative agents. Further progress in improving outcomes during STEMI may depend on exploring therapeutics that modulate the pathophysiology of microvascular damage during ischemia–reperfusion injury, a phenomenon whose effects evolve over hours to days. We speculate that the dynamic nature of the no-reflow phenomenon may be an explanation for these disappointing results with the intravenous antiplatelet agents. We hope that appreciation for what has not worked in this domain may direct future research efforts to focus on novel pathways. Myocardial ischemia and reperfusion injury are very much still a lingering issue. Despite significant improvements in door-to-balloon times, rates of in-hospital mortality for STEMI remain unchanged. Outcomes following successfully reperfused STEMI are likely determined by the initial size of myocardial necrosis (ie, cardiomyocyte death during the period of ongoing ischemia), patency of the infarct-related epicardial coronary artery, possible reperfusion injury, the microvascular no-reflow phenomenon, and adverse remodeling after infarction.
Slowly expanding/evolving lesions as a magnetic resonance imaging marker of chronic active multiple sclerosis lesions
Authors: Elliott Colm , Wolinsky Jerry S , Hauser Stephen L , Kappos Ludwig , Barkhof Frederik , Bernasconi Corrado , Wei Wei , Belachew Shibeshih , Arnold Douglas L
Published: December 2018

Background:

Chronic lesion activity driven by smoldering inflammation is a pathological hallmark of progressive forms of multiple sclerosis (MS).

Objective:

To develop a method for automatic detection of slowly expanding/evolving lesions (SELs) on conventional brain magnetic resonance imaging (MRI) and characterize such SELs in primary progressive MS (PPMS) and relapsing MS (RMS) populations.

Methods:

We defined SELs as contiguous regions of existing T2 lesions showing local expansion assessed by the Jacobian determinant of the deformation between reference and follow-up scans. SEL candidates were assigned a heuristic score based on concentricity and constancy of change in T2- and T1-weighted MRIs. SELs were examined in 1334 RMS patients and 555 PPMS patients.

Results:

Compared with RMS patients, PPMS patients had higher numbers of SELs ( p = 0.002) and higher T2 volumes of SELs ( p < 0.001). SELs were devoid of gadolinium enhancement. Compared with areas of T2 lesions not classified as SEL, SELs had significantly lower T1 intensity at baseline and larger decrease in T1 intensity over time.

Conclusion:

We suggest that SELs reflect chronic tissue loss in the absence of ongoing acute inflammation. SELs may represent a conventional brain MRI correlate of chronic active MS lesions and a candidate biomarker for smoldering inflammation in MS.