bluuebunny/crossref_metadata_2025 huggingface dataset:
Correlating Gastrointestinal Histopathologic Changes to Clinical Disease Activity in Dogs With Idiopathic Inflammatory Bowel Disease
Authors: Allenspach Karin A. , Mochel Jonathan P. , Du Yingzhou , Priestnall Simon L. , Moore Frances , Slayter Michael , Rodrigues Aline , Ackermann Mark , Krockenberger Mark , Mansell Joanne ,   WSAVA GI Standardization Working Group, Luckschander Nicole , Wang Chong , Suchodolski Jan , Berghoff Nora , Jergens Albert E.
Published: December 2018

Prior studies have failed to detect a convincing association between histologic lesions of inflammation and clinical activity in dogs with inflammatory bowel disease (IBD). We hypothesized that use of a simplified histopathologic scoring system would improve the consistency of interpretation among pathologists when describing histologic lesions of gastrointestinal inflammation. Our aim was to evaluate the correlation of histopathologic changes to clinical activity in dogs with IBD using this new system. Forty-two dogs with IBD and 19 healthy control dogs were enrolled in this retrospective study. Endoscopic biopsies from the stomach, duodenum, ileum, and colon were independently scored by 8 pathologists. Clinical disease activity was scored using the Canine Inflammatory Bowel Disease Activity Index (CIBDAI) or the Canine Chronic Enteropathy Clinical Activity Index (CCECAI), depending on the individual study center. Summative histopathological scores and clinical activity were calculated for each tissue (stomach, duodenum, ileum, and colon) and each tissue histologic score (inflammatory/morphologic feature). The correlation between CCECAI/CIBDAI and summative histopathologic score was significant ( P < .05) for duodenum ( r = 0.42) and colon ( r = 0.33). In evaluating the relationship between histopathologic scores and clinical activity, significant ( P < .05) correlations were observed for crypt dilation ( r = 0.42), lamina propria (LP) lymphocytes ( r = 0.40), LP neutrophils ( r = 0.45), mucosal fibrosis ( r = 0.47), lacteal dilation ( r = 0.39), and villus stunting ( r = 0.43). Compared to earlier grading schemes, the simplified scoring system shows improved utility in correlating histopathologic features (both summative histology scores and select histologic scores) to IBD clinical activity.
“Music is my drug”: Alexithymia, empathy, and emotional responding to music
Authors: Lyvers Michael , Cotterell Samantha , Thorberg Fred Arne
Published: December 2018

Like alcohol or other drugs, music is often enjoyed by humans for its mood-altering effects. However, there is substantial individual variation in emotional responding to music (ERM). The present study investigated potential roles of trait variables in ERM. Recruitment and testing of 205 adult regular music listeners was accomplished online. They were asked to complete the Geneva Emotional Music Scale (GEMS) retrospectively by rating the felt intensity of 45 music-related emotions based on what they typically experienced when listening to their favorite music. They also completed instruments assessing traits of alexithymia, affect intensity, and empathy, as well as the Big Five factors. Alexithymia, affect intensity, and empathy, but not the Big Five, were moderately positively correlated with ERM as measured by GEMS. In a hierarchical regression, alexithymia and empathy were significant positive predictors of ERM after controlling for the other variables; extraversion was also significant in the final model. The role of empathy as a predictor of ERM was consistent with the emotional contagion interpretation of ERM. The unexpected positive relationship of alexithymia with ERM suggests that alexithymic listeners may rely on music to help them experience emotions more fully. Limitations and potential implications of the findings are discussed.
Who is playing that wonderful music? Exploring predictors of playing a musical instrument
Authors: Treger Stanislav
Published: December 2018

Music is a phenomenon enjoyed by almost all people. Although music fans may believe that music is an important part of their lives, not every music appreciator decides to venture further by making music themselves. The purpose of this research was to investigate potential variables that may be associated with whether one plays a musical instrument. Specifically, I investigated the role of four individual difference variables that have previously been correlated with a number of factors related to music: openness to experience, self–music overlap (SMO), curiosity, and need for cognition (NFC). Results from two cross-sectional investigations ( ns = 369 and 295) revealed that all four variables were positively related to whether one plays a musical instrument. SMO mediated the relation between openness and whether one plays a musical instrument in all studies. Unlike hypothesized, curiosity and NFC did not serve as mediators to the openness–music link. Collectively, this research sheds light on the underexplored question of who plays musical instruments.
Sex Differences in Mathematics components of the Iowa tests of Basic Skills
Authors: Plake Barbara S. , Loyd Brenda H. , Hoover H. D.
Published: December 2018

The Mathematics Problem Solving (MPS) and Mathematics Concepts (MC) subtests of the Iowa Tests of Basic Skills were investigated for content and psychometric item bias at grades 3, 6, and 8. A small proportion of items were identified in each subtest which significantly favored either males or females. No skill classification, item content or location trends could be found for the mathematics subtests at each grade level. Across the grade levels, items in the MC subtest favored males for grades 3 and 6, but females were favored at grade 8. The procedure used in the study is generalizable to other groups (minority or grade levels). Test consumers have the right to know whether the test they use is fair for selected groups of students. Results from empirical investigations should appear in the Test Manual that accompanies the test battery.
First and Third Person Pronouns in Sex Role Questionnaires
Authors: Teglasi Hedwig
Published: December 2018

First and third person wording of items on a sex role attitude questionnaire were examined. No correlation was found between women's scores on two versions of the Wellesley Role Orientation Scale (WROS) which were identical except for the pronouns. These results suggest that despite similar content, items worded in the first person are not equivalent to third person items as measures of sex roles. Third person scores of women were much higher than first person scores and were similar to third person scores of men. This was interpreted as indicating that normative expectations regarding women's roles are far more traditional than stated preferences of college women in the sample studied.
Field measurement of greenhouse gas emissions from biological treatment facilities of food waste in Republic of Korea
Authors: Jeong Sangjae , Moon Seheum , Park Jeryang , Kim Jae Young
Published: December 2018

The Republic of Korea is trying to reduce greenhouse gas emissions by 37% from business-as-usual levels by 2030. Reliable greenhouse gas inventory is prerequisite to making effective greenhouse gas reduction plans. Currently, Intergovernmental Panels on Climate Change default emission factors were used in biological treatment of the solid waste sector without any consideration of the biological treatment process in the Republic of Korea. In this study, greenhouse gas emissions from biological treatment facilities of food waste have been monitored in order to develop country-specific emission factors in the Republic of Korea. Greenhouse gas emissions were monitored in two composting facilities and one anaerobic digestion facility. All study sites possess a local exhaust ventilation system and odour treatment system. Continuous greenhouse gas monitoring has been conducted on gathered gases using a non-dispersive infrared detector before entering odour treatment systems. At composting facilities, the emission factors of CH4 and N2O were 0.17–0.19 g-CH4 kg-waste−1 and 0.10–0.13 g-N2O kg-waste−1, respectively. Especially, the emission factors of CH4 in composting facilities showed significantly low values compared with other countries owing to the air blowing by a pump at the studied sites. At anaerobic digestion facilities, the emission factors of CH4 and N2O were 1.03 g-CH4 kg-waste−1 and 0.53 g-N2O kg-waste−1. The emission factors estimated in this study showed a significant difference from the Intergovernmental Panels on Climate Change default value. Therefore, it is recommended to develop a country-specific emission factor in order to reflect the different processes of biological treatment of solid waste.
Walking School Bus Program Feasibility in a Suburban Setting
Authors: Kang Bumjoon , Diao Chunyuan
Published: December 2018

A walking school bus (WSB), a group of children walking to school under adult supervision, has social, environmental, and public health benefits. Although WSBs may require a certain neighborhood density and street configuration to recruit and organize groups, our spatial analysis showed that when 20% of students living near their school join WSBs, those students could form an adequately sized WSB group. Our parent survey showed that about 40% of parents were likely to allow their children to walk to school if a friend accompanies them. Thus, we conclude that WSBs are feasible in a low-density suburban neighborhood setting.
Integrating Critical Autobiography to Foster Anti-Racism Learning in the Urban Studies Classroom: Interpreting the “Race and Place” Stories of Undergraduate Students
Authors: Knapp Courtney E.
Published: December 2018

Planners are bound up in the reproduction of racialized exclusion. This fact inspires demands for equity, cultural competency, and anti-racism within the profession. This study examines the impacts of a “Race and Place” autobiography writing assignment on undergraduate students’ racial identities and understanding of racism. It combines: (1) a content and narrative analysis of student essays; (2) a post-course survey; and (3) qualitative interviews with a sample of students. Critical autobiographical writing may help students understand their own identities, build empathy for peers, and identify personally with structures of inclusion/exclusion in ways that inspire longer-term commitments to racial justice.
Volunteers in Palliative Care Make A Difference
Authors: Luijkx Katrien G. , Schols Jos M.G.A.
Published: December 2018

Family care giving is important for the quality of life of terminally ill patients and their family members. Although family caregivers are generally eager to provide palliative care, at some point it may become too demanding, and then volunteers can make a difference. This four-study paper presents the experiences of families of terminally ill patients with volunteer support. In four sequential studies, information was gathered from focus groups (n=22), a survey (n=237), individual interviews (n=6), and an Internet panel (n=1,712). The focus groups revealed that volunteers can make the last phase of life less stressful for family caregivers by offering practical and emotional support, and this was confirmed by the survey; however, one improvement is needed: every volunteer support should be concluded with a closing contact. The individual interviews showed that in the end-of-life stage the crucial decision is whether the patient can remain at home, not whether the caregiver needs volunteer support; and in such extreme situations, it is understood that volunteer support must involve more than one volunteer. The Internet panel revealed that in the Netherlands the general public is aware that volunteers can provide palliative care support, but many people don't know how to contact these volunteers. We must find ways to extend volunteer support in palliative care in the Netherlands and elsewhere. We must also study further the experiences of caregivers of terminally ill patients with volunteers and others who provide palliative care.
What is A Good Death? Stories from Palliative Care
Authors: De Jong Jennifer D. , Clarke Linda E.
Published: December 2018

The components of good and bad deaths have not been well elucidated in the literature. Furthermore, the value of using narratives in palliative care research has not been extensively explored. We invited people involved in palliative care (patients, caregivers, physicians, and nurses) to tell us their stories of good and bad deaths, and 15 responded. We asked them to tell us about the good and bad deaths that they had witnessed and to describe what a good death and a bad death would be like for them, personally. Several common themes emerged from their good death narratives: a death free from pain, the sense of a life well lived, and a sense of community. Common bad death themes included a painful death and a loss of control and independence. We found that the use of story in palliative care provided an opportunity to create meaning and to heal for both the teller and the listener.
Chronic Palliative Care: Specific Practices for Alzheimer's Disease Sufferers
Authors: Mino Jean-Christophe , Frattini Marie-Odile
Published: December 2018

Introduction: In France, the government's plan to combat Alzheimer's disease takes into consideration mostly the beginnings of the disease; it does not deal with the sufferers’ end of life. For this pathology, the very idea of a palliative care phase and its definition are not straightforward. Method: The object of this qualitative study was to clarify this idea through a series of interviews with 44 professionals. Results: The study describes three successive phases in the disease trajectory, revealed by changes in the logic of care: the stimulation phase, the chronic palliative care phase, and the terminal palliative phase. Conclusion: Alzheimer's disease has a specific phase of chronic palliative care. It presents, for professionals, several types of problems related to communication, pain, and feeding.
Involvement of Nurses in the Euthanasia Care Process in Flanders (Belgium): An exploration of Two Perspectives
Authors: Denier Yvonne , de Casterlé Bernadette Dierckx , De Bal Nele , Gastmans Chris
Published: December 2018

This study explored nurses’ involvement in the care process for mentally competent, terminally ill patients requesting euthanasia in general hospitals in Flanders, Belgium. In-depth interviews with 18 nurses who had experience in caring for patients requesting euthanasia since May 2002 were analyzed using grounded theory qualitative methods. We found that the involvement of nurses in the care process is influenced by their predominant perspective on it: the procedural, action-focused perspective, from which good practical organization of the care process is essential; or the existential-interpretative perspective, from which it is important to understand the patient's request within a dialogue-focused and communicational atmosphere. Findings show that the two perspectives are not mutually exclusive, but rather complementary dimensions of the euthanasia care process. Hence, sufficient support for nurses to reach a well-balanced integration of both perspectives is essential.
Understanding the Provision of Palliative Care in the Context of Primary Health Care: Qualitative Research Findings from a Pilot Study in a Community Setting in Chile
Authors: Cameron Brenda L. , Salas Anna Santos
Published: December 2018

This pilot study looked at the provision of palliative care in the context of primary health care in a developing setting in Chile. Research objectives: The study aimed to delineate the experience of palliative care from the perspective of patients and health care professionals; to examine primary health care as a propitious milieu for palliative care in developing countries; and to generate opportunities for international collaboration between Chile and Canada. Methodology: The study followed tenets of hermeneutic phenomenology and participatory research. Research activities included audio-taped, in-depth individual interviews and participant observation in the home. Results: Patients expressed contentment with the services provided by the program. The support of family members, friends, neighbours, and the palliative team was critical to their home care. Health care professionals showed great enthusiasm for keeping the palliative care program going in the primary health care setting despite limited resources. They followed WHO and national guidelines for symptom relief and involved families in the care of the sick person. Conclusion: The provision of palliative care through primary health care increases access in developing countries.
Completing the Circle: Elders Speak about End-Of-Life Care with Aboriginal Families in Canada
Authors: Hampton Mary , Baydala Angelina , Bourassa Carrie , Mckay-McNabb Kim , Placsko Cheryl , Goodwill Ken , Mckenna Betty , Mcnabb Pat , Boekelder Roxanne
Published: December 2018

In this article, we share words spoken by Aboriginal elders from Saskatchewan, Canada, in response to the research question, “What would you like non-Aboriginal health care providers to know when providing end-of-life care for Aboriginal families?” Our purpose in publishing these results in a written format is to place information shared by oral tradition in an academic context and to make the information accessible to other researchers. Recent theoretical work in the areas of death and dying suggests that cultural beliefs and practices are particularly influential at the end of life; however, little work describing the traditional beliefs and practices of Aboriginal peoples in Canada exists to guide culturally appropriate end-of-life care delivery. Purposive sampling procedures were used to recruit five elders from culturally diverse First Nations in southern Saskatchewan. Key informant Aboriginal elder participants were videotaped by two Aboriginal research assistants, who approached the elders at powwows. Narrative analysis of the key informant interview transcripts was conducted to identify key concepts and emerging narrative themes describing culturally appropriate end-of-life health care for Aboriginal families. Six themes were identified to organize the data into a coherent narrative: realization; gathering of community; care and comfort/transition; moments after death; grief, wake, funeral; and messages to health care providers. These themes told the story of the dying person's journey and highlighted important messages from elders to non-Aboriginal health care providers.
What Really Matters in Pain Management for Terminally Ill Cancer Patients in Taiwan
Authors: Tang Siew Tzuh , Tang Woung-Ru , Liu Tsang-Wu , Lin Che-Pin , Chen Jen-Shi
Published: December 2018

The paradox of patients who are in pain yet satisfied with their pain management has been documented repeatedly. Pain relief constitutes only one part of patient satisfaction with pain management. The quality of cancer pain management in Taiwan has not been evaluated from the patient's perspective. A cross-sectional design was used to survey 1,370 terminally ill cancer patients in Taiwan to characterize the status of, and satisfaction with cancer pain management by investigating the relative importance of pain intensity, pain relief experiences, and clinicians’ pain management practices. Cancer patients with pain had unsatisfactory pain relief within one week of admission (47.4 percent) and inadequate pain medication (23.6 percent). However, these patients perceived that clinicians adequately informed them about pain treatment. Patient satisfaction with pain management was primarily determined by examining the perceptions that medication dose was just right, responses to requests for pain medication were prompt, and understandable and consistent information about pain treatment was offered. In conclusion, Taiwanese cancer patients’ satisfaction with pain management was influenced more by perceived pain management practices than by pain relief itself.
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.
Learning to Work with the “Unsolvable”: Building Capacity for Working with Refractory Suffering
Authors: Hegarty Margaret Mary , Breaden Katrina Margaret , Swetenham Catherine Margaret , Grbich Carol
Published: December 2018

This article reports on a preliminary study of the experiences and perceptions of palliative care clinicians in developing capacity for effective, sustainable practice in their work with people who have refractory suffering. Members of a purposive sample of 17 clinicians (10 nurses, 5 doctors, and 2 allied health professionals) were either interviewed (13) or responded to an online questionnaire (4). The study's findings provide insight into these palliative care clinicians’ experiences and their perceptions of the capabilities they require, effective learning methods for developing these capabilities, and the supports that can facilitate this capacity building.
Resource Use and costs of End-Of-Life/Palliative Care: Ontario Adult Cancer Patients Dying during 2002 and 2003
Authors: Walker Hugh , Anderson Mark , Farahati Farah , Howell Doris , Librach S. Lawrence , Husain Amna , Sussman Jonathan , Viola Raymond , Sutradhar Rinku , Barbera Lisa
Published: December 2018

The objective of this study is to estimate the direct medical cost of end-of-life and palliative (EOL/PAL) care for cancer patients during the last six months of their lives — or, during the period from diagnosis to death, if briefer — in 2002 and 2003, in Ontario, Canada. A linkage of cancer registry and administrative data is used to determine the costs of health care resources used during the EOL/PAL care period. Costs are analyzed by cancer diagnosis, location of death, and type of service. The total Ontario Ministry of Health-funded cost of EOL/PAL care for cancer patients is estimated to be about CAD$544 million per year, with an average per patient cost of about $25,000 in 2002–2003. Our results suggest that acute care consumes 75 percent of EOL/PAL funding and that only a small proportion of health care services used by EOL/PAL care cancer patients is likely to be formal palliative care.
Exploring the extent of Communication Surrounding Transitions to Palliative Care in Heart Failure: The perspectives of Health Care Professionals
Authors: Green Emilie , Gardiner Clare , Gott Merryn , Ingleton Christine
Published: December 2018

Introduction: The aim of this study was to explore the perspectives of health care professionals (HCPs) on the transition of heart failure (HF) patients to a palliative care approach. Method: Qualitative data were generated from 24 HCPs specializing in cardiology, care for the elderly, and palliative care. Data were analyzed using the principles of thematic analysis. Results: Emergent themes related to the unpredictable trajectory of HF, causing prognostic ambiguity; the use of structured pathways in end-of-life decision making; and comparison of HF and cancer patients in terms of their requirements and access to high-quality palliative care. Conclusion: There is a need for both established prognostic guidelines and further education to develop the communication skills to facilitate end-of-life discussions with HF patients.
Comparing the costs of Alternative models of End-Of-Life Care
Authors: McBride Tom , Morton Alec , Nichols Andy , van Stolk Christian
Published: December 2018

Objectives: This study explores the financial consequences of decreased acute care utilization and expanded community-based care for patients at the end of life in England. Method: A Markov model based on cost and utilization data was used to estimate the costs of care for cancer and organ failure in the last year of life and to simulate reduced acute care utilization. Results: We estimated at £1.8 billion the cost to the taxpayer of care for the 127,000 patients dying from cancer in 2006. The equivalent cost for the 30,000 people dying from organ failure was £553 million. Resources of £16 to £171 million could be released for cancer. Conclusion: People generally prefer to die outside hospital. Our results suggest that reducing reliance on acute care could release resources and better meet peoples’ preferences. Better data on the cost-effectiveness of interventions are required. Similar models would be useful to decision-makers evaluating changes in service provision.
Shifting Life Rhythms: Couples’ Stories about Living Together When One Spouse Has Advanced Chronic Obstructive Pulmonary Disease
Authors: Ek Kristina , Ternestedt Britt-Marie , Andershed Birgitta , Sahlberg-Blom Eva
Published: December 2018

Aim: This study examines couples’ experiences of living together when one partner has advanced chronic obstructive pulmonary disease (COPD). Method: Repeated qualitative interviews with four couples over an eight-month period, where one spouse in each couple suffered from advanced COPD. The final dataset comprised 19 interviews. A phenomeno-logical-hermeneutical method was used to interpret the interview text. Findings: One main theme, “living with the disease and one's spouse in a new and changeable life rhythm”, emerged from three subthemes: “living with uncertainty”, “living in a changed intimate relationship”, and “finding new ways of living together”. A mutual sense of companionship between the spouses facilitated their chances of reshaping their relationship and adapting it to the new life rhythm required by everyday life with the disease. Conclusion: The healthy spouse had major responsibility for the health of their sick spouse. Awareness of the couple's own conceptions and knowledge of health and illness is central to person-focused care, as is awareness of what values are important to them when restructuring their everyday life.
Decision-Making for Gastrostomy and Ventilatory Support for People with Motor Neurone Disease: Variations across Uk Hospices
Authors: Oliver David , Campbell Colin , Sykes Nigel , Tallon Carole , Edwards Annette
Published: December 2018

Interventions, such as the use of percutaneous endoscopic gastrostomy (PEG) and non-invasive ventilation (NIV), are used in the management of people with motor neurone disease with the aim of improving quality of life and relieving symptoms. However, the number of people receiving these interventions varies across the UK. This study has looked at the involvement and knowledge of consultants, within specialist palliative care services, with these procedures, to ascertain if there were differences in attitudes to their use. Twenty-two consultants took part in a telephone audit. There appeared to be great variation in their involvement in and knowledge of the use of these interventions. The majority of services were involved in the care of people with MND, but often only in the terminal stages. There appears to be a need for the wider application of guidelines on the use of PEG and NIV, as well as the development of a collaborative approach with other services, including neurology and rehabilitation services.
Emergency Department Use among End-Of-Life Home Care Clients
Authors: Brink Peter , Partanen Lorraine
Published: December 2018

Emergency department (ED) use is a quality-of-care indicator for community-based end-of-life (EOL) care. This study examined ED use by EOL home care clients. The sample included all EOL home care clients who received care from one community care access centre in Ontario, Canada. Information on health was gathered using the interRAI instrument for palliative care. Data were collected between May 2009 and January 2010. The sample included 93 home care clients. Results showed that 35 percent of clients used the ED within 45 days of assessment. Multivariate analysis identified two determinants of ED use: excessive weight loss and previous hospitalization. Managing terminal illness is often a difficult task, and comprehensive, ongoing assessment of clients’ changing status is critical. Client care and service planning for clients who have lost excessive amounts of weight or who have been recently hospitalized need to be monitored closely to prevent any future avoidable ED use.
Bereaved Family Members’ assessments of the quality of End-Of-Life Care: What is Important?
Authors: Stajduhar Kelli I. , Funk Laura , Cohen S. Robin , Williams Allison , Bidgood Darcee , Allan Diane , Norgrove Leah , Heyland Daren
Published: December 2018

Families of patients are well poised to comment on the end-of-life (EOL) care received by those patients and can provide feedback to care providers and decision makers. To better understand family-member evaluations of the quality of in-patient EOL care, this study draws on qualitative interview data (n=24) to identify core aspects of EOL care that are important for family members. Based on this analysis, a conceptual framework of family members’ assessments of their experiences with EOL health care services is developed. Findings suggest the need to distinguish between perceived substantive or tangible features of received care, interpretations of the causes and symbolic meanings of that care, and personal and affective outcomes. Practitioners are encouraged to reflect on how behaviours and communications may be interpreted by families. Attention also needs to be given to the changes in practice and organizational decision making that can facilitate more positive experiences for families and patients.
Evaluating Program Integration and the Rise in Collaboration: Case study of A Palliative Care Network
Authors: Bainbridge Daryl , Brazil Kevin , Krueger Paul , Ploeg Jenny , Taniguchi Alan , Darnay Julie
Published: December 2018

Introduction: There is increasing global interest in using regional palliative care networks (PCNs) to integrate care and create systems that are more cost-effective and responsive. We examined a PCN that used a community development approach to build capacity for palliative care in each distinct community in a region of southern Ontario, Canada, with the goal of achieving a competent integrated system. Methods: Using a case study methodology, we examined a PCN at the structural level through a document review, a survey of 20 organizational administrators, and an interview with the network director. Results: The PCN identified 14 distinct communities at different stages of development within the region. Despite the lack of some key features that would facilitate efficient palliative care delivery across these communities, administrators largely viewed the network partnership as beneficial and collaborative. Conclusion: The PCN has attempted to recognize specific needs in each local area. Change is gradual but participatory. There remain structural issues that may negatively affect the functioning of the PCN.
Evaluation of frequency of Clinical Symptoms and Signs within Six Months Prior to Death in Patients with Advanced Solid Cancers
Authors: Kaleva-Kerola Jaana , Huhtala Heini , Helminen Mika , Pylkkänen Liisa , Holli Kaija
Published: December 2018

This retrospective study documented the frequency of the clinical symptoms and signs that increase in advanced cancer patients as they move toward death in order to create a sum score and correlate it with survival. Of 572 adult patients who were treated in four selected hospitals and who died in 1998 and 1999, data at six, three, and one month(s) prior to death was available for 257. The results showed that the number of symptoms and certain clinical findings accelerated toward death, increasing the sum score. Younger patients obtained higher sum scores at one month prior to death than did elderly ones (p=0.014); this suggests that elderly patients die at a point where they show less worsening in their clinical condition than do younger patients. The score was independent of cancer type or gender. The results of this analysis provide data for further development of a clinical tool to predict long-term survival in palliative care settings.
Opportunities for Quality Improvement in Bereavement Care at A Children's Hospital: Assessment of Interdisciplinary Staff Perspectives
Authors: Contro Nancy , Sourkes Barbara M.
Published: December 2018

This study examined the current state of bereavement care at a university-based children's hospital from the perspective of the interdisciplinary staff. In all, 60 staff members from multiple disciplines participated in in-depth interviews. In at least two-thirds of the interviews, issues related to the bereavement experience of both staff and families emerged and were consistently identified. Themes included: disparities in bereavement care based on relationship factors; logistics of time and space; geographical distances; the different cultures and languages of families; continuity in family follow-up; needs of siblings and other family members; staff communication, cooperation, and care coordination; staff suffering; and education, mentoring, and support for staff. This evidence-based needs assessment furnishes an empirical basis for the design and implementation of bereavement services for both families and staff. It can serve as a template for evaluation at other children's hospitals and thus contribute to the sound and creative development of the field of pediatric palliative care.
Negotiating Relational Practice Patterns in Palliative Home Care
Authors: Ward-Griffin Catherine , McWilliam Carol , Oudshoorn Abram
Published: December 2018

Providing palliative care in the home presents a variety of challenges for nurses and other care providers. As part of a focused ethnographic study examining client/caregiver/care-provider relationships within the socio-cultural context of home-based palliative care, this paper describes the provision of palliative care to Canadian seniors with advanced cancer from the perspective of nurses. Data were collected through in-depth interviews (n=19) with three palliative care nurses and participant observations in four households over a six-to-eight-month period. Home-based palliative care nursing was depicted in this study as a dialectical experience, revealing three relational practice patterns: making time-forfeiting time, connecting-withdrawing, and enabling-disabling. Nurses attempted to negotiate the tensions between these opposing approaches to palliative care. Study findings suggest that the socio-cultural context of palliative care is not conducive to high-quality palliative care and provide several insights related to future directions for practice, policy, and research.
Being A Hospice Volunteer Influenced Medical Students’ Comfort with Dying and Death: A Pilot Study
Authors: Stecho Will , Khalaf Roy , Prendergast Patrick , Geerlinks Ashley , Lingard Lorelei , Schulz Valerie
Published: December 2018

Being comfortable with death and communicating with patients near the end of life are important attributes in palliative care. We developed a hospice volunteer program to teach these attitudes and skills to preclinical medical students. Using a mixed-methods approach, validated surveys measured participants’ and non-participants fear of death and communication apprehension regarding dying. Journals and focus groups examined participants’ subjective experiences as their patient relationships evolved. Survey scores were significantly lower for participant hospice volunteers, indicating lower levels of death anxiety and communication apprehension regarding dying. An explanatory framework, using journals and focus groups, captured participants’ sense of development over time into three categories: challenges, learning, and growth. This pilot project provides insight into the medical students’ experiential learning as they participate in our hospice volunteer program.
Selected Abstracts
Authors: Mcgill Palliative Care , 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 19th International Congress on Palliative Care merits serious attention in this Canadian-based international journal. I am happy to publish selected abstracts of research fora, workshops and proffered papers, and posters that will be presented to 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.
Effects of Respite Care Services in A Children's Hospice: The Parents’ point of View
Authors: Champagne Manon , Mongeau Suzanne
Published: December 2018

Purpose: To analyze, from the parents’ point of view, the effects of respite services offered at a children's hospice, the Maison André-Gratton. Method: Qualitative methodology (participatory approach) using mainly semi-structured interviews with parents (25 mothers and 8 fathers). Thematic analysis of the data was done. Findings: Respite stays allow parents to get some rest, to feel liberated from the responsibility of taking care of their sick child for a few days, to focus on their other children and their life as a couple, and to break their social isolation. For siblings, the main benefits are having their parents to themselves and sharing activities with them. Conclusion: Two characteristics of the respite program contribute to the positive effects of respite on families — the high quality of the care offered by a qualified staff, and the adequate length of respite stays.
Turkish Healthcare Professionals’ Views on Palliative Care
Authors: Turgay Gulay , Kav Sultan
Published: December 2018

The concept of modern palliative care has been disseminating slowly in Turkey and has recently been included in the National Cancer Control Program. The aim of this study was to explore healthcare professionals’ knowledge and views of palliative care. It was conducted at three hospitals with a sample of 369 healthcare professionals working in adult clinics. Data were collected via open-ended questions and 16 statements from healthcare professionals on their views of palliative care. Most respondents stated that there was a lack of in-service/continuing education in palliative care, and more than half said they had not received any education in palliative care. A majority stated that the meaning and goal of palliative care is “improving the quality of life of a patient who is in the terminal stage.” Lack of awareness of palliative care and a lack of educational resources in that field are the most frequently reported barriers to the development of palliative care in Turkey. Palliative care should be included in curricula for healthcare professionals and in-service education programs should be established.
Our Buried Lives?
Authors: Roy David J.
Published: December 2018

Of all the thousand nothings of the hour Their stupefying power

Matthew Arnold (1)
More than Physical Function? Exploring Physiotherapists’ Experiences in Delivering Rehabilitation to Patients Requiring Palliative Care in the Community Setting
Authors: Carson Kathryn , McIlfatrick Sonja
Published: December 2018

Background: Physiotherapists, as essential members of the multidisciplinary palliative care team, are key to the successful rehabilitation of palliative patients. There is, however, a scarcity of literature on the experiences of primary care physiotherapists delivering this service. Aim: This study explored the experiences of physiotherapists delivering rehabilitation in palliative care and identified perceived barriers and enablers. Method: A qualitative approach was adopted involving semistructured interviews with a purposive sample of primary care physiotherapists (n=11). Findings: Participants viewed rehabilitation as helping to maximize independence and improve quality of life for palliative patients. Their role was primarily focused on physical functioning but within an overall philosophy of providing comfort and supportive care. Several barriers and enablers to delivering rehabilitation were identified; these were related to communication, resources, teamwork, and training. Conclusion: Physiotherapists believed that rehabilitation adds value to palliative care, but existing barriers limit the service. Improved collaboration and timely access to resources could assist in the provision of rehabilitation to palliative patients.
Physicians’ conceptualization of “Closure” as A benefit of Physician-Parent Follow-Up Meetings after A Child's Death in the Pediatric Intensive Care Unit
Authors: Eggly Susan , Meert Kathleen L. , Berger John , Zimmerman Jerry , Anand K.J.S. , Newth Christopher J.L. , Harrison Rick , Carcillo Joseph , Dean J. Michael , Willson Douglas F. , Nicholson Carol
Published: December 2018

We examined physicians’ conceptualization of closure as a benefit of follow-up meetings with bereaved parents. The frequency of use and the meaning of the word “closure” were analyzed in transcripts of interviews with 67 critical care physicians affiliated with the Collaborative Pediatric Critical Care Research Network. In all, 38 physicians (57 percent) used the word “closure” at least once (median: 2; range: 1 to 7), for a total of 86 times. Physicians indicated that closure is a process or trajectory rather than an achievable goal. They also indicated that parents and physicians can move toward closure by gaining a better understanding of the causes and circumstances of the death and by reconnecting with, or resolving relationships between, parents and health professionals. Physicians suggested that a primary reason to conduct follow-up meetings is that such meetings offer parents and physicians an opportunity to move toward closure. Future research should attempt to determine whether follow-up meetings reduce the negative effects of bereavement for parents and physicians.
Palliative Care Personnel and Services: A National Survey in Thailand 2012
Authors: Phungrassami Temsak , Thongkhamcharoen Rojanasak , Atthakul Narumol
Published: December 2018

Research on palliative care services in Thailand is incomplete. We conducted a countrywide cross-sectional postal survey to update the situation. We approached hospitals and asked them to respond to a questionnaire. The overall response rate of government hospitals was 61 percent (537 of 882 hospitals). Of these, 59 percent reported that they had personnel trained in palliative care; the majority had received less than a week of such training. In all, 60 percent of the hospitals reported that they offered palliative care services, but 25 percent of these services were delivered by staff who had no palliative care training. The criteria of having at least one trained doctor and nurse on staff was met by 17 percent of the hospitals. Only seven hospitals, most of them associated with medical schools, employed both a doctor and a nurse who had been trained in palliative care for one month or more; these professionals mainly provided hospital and home palliative care team services. Our survey reveals the lack of both health care personnel fully trained in palliative care and specialist palliative care services in Thailand.
Looking beyond Disfigurement: The experience of Patients with Head and Neck Cancer
Authors: Henry Melissa , Ho Angela , Lambert Sylvie D. , Carnevale Franco A. , Greenfield Brian , MacDonald Christina , Mlynarek Alex , Zeitouni Anthony , Rosberger Zeev , Hier Michael , Black Martin , Kost Karen , Frenkiel Saul
Published: December 2018

Despite the frequent occurrence of head and neck cancer (HNC) disfigurement, little is known about its psychosocial impact on patients. This study aimed to understand the lived experience of disfigurement in HNC and explore what patients considered to be its influences. Fourteen disfigured HNC patients participated in a 45-to-120-minute in-depth, semi-structured interview, which was analyzed qualitatively using interpretive phenomenology. A majority of participants (64 percent) were considered to be at an advanced cancer stage (stage III or stage IV). Patients’ experiences revolved around the concept of a ruptured self-image (a discontinuity in sense of self). Forces triggering this ruptured self-image created a sense of “embodied angst”, in which disfigurement served as a constant reminder of the patient's cancer and associated foundational malaise. Other influences fostered a sense of normalcy, balance, and acceptance. Participants oscillated between these two states as they grew to accept their disfigurement. This study's findings could guide supportive interventions aimed at helping patients face head and neck surgery.
Pain and Self-Care Behaviours in Adult Patients with End-Stage Liver Disease: A Longitudinal Description
Authors: Hansen Lissi , Leo Michael C. , Chang Michael F. , Zucker Betsy L. , Sasaki Anna
Published: December 2018

This prospective descriptive study investigated pain characteristics in 20 outpatients with end-stage liver disease (ESLD) who were approaching the end of life, described variability in pain between and within patients, and described the pharmacological and nonpharmacological pain management strategies used. The instruments we utilized were the Brief Pain Inventory (BPI) and the self-care behaviour (SCB) log for pain. Data were collected once a month over a six-month period. BPI severity of, and interference from pain mean scores ranged from 5.52 to 6.03 and 5.36 to 6.64, respectively. The top three pain-relieving behaviours reported by patients were “taking pain medication,” “taking a nap,” and “asking for help.” Pain medication intake differed between patients who were pursuing a liver transplant and those who were not eligible for one. If we are to effectively improve care for ESLD patients, it is essential that we understand the ways in which these patients experience pain and the pain management strategies they employ.
Residential Hospice Environments: Evidence-Based Architectural and Landscape Design Considerations
Authors: Verderber Stephen
Published: December 2018

The residential hospice care movement is increasingly accepted and supported globally, and yet, unfortunately, the amount of literature on best practices in the planning and design of residential hospice facilities and adjacent outdoor spaces remains relatively small. This paper reports on a compendium of architectural and landscape design considerations that reflect the fundamental dimensions of the residential hospice experience: site and context, arrival spaces, communal and private spaces of the residential milieu, transitional spaces, and nature connectivity. Additionally, key staffing and administrative rami-fications of this built-environment compendium are addressed, as are prognostications and challenges for the future.