Challenges Experienced by Nurses in Providing Pediatric Palliative Care: An Interpretive Phenomenological Analysis
child; palliative care; Palliative Care; pediatrics; leukemia; nurses
Objectives: Pediatric leukemia is the most common cancer among children younger than 14 years of age. Children with leukemia require palliative care as additional support from the health care team. Providing palliative care to children is challenging. Thus, this study explored the challenges experienced by nurses in providing pediatric palliative care to children with leukemia. Methods: Semi-structured face-to-face interviews were conducted on a purposive sample of 11 nurses in the hematology-oncology units of a tertiary care hospital in Oman. Results: Interviews were transcribed and analyzed using interpretive phenomenological analysis, which revealed three main themes and seven subthemes related to challenges in providing pediatric palliative care: Personal challenges: Nurses were unable to neutralize their emotions, which burdened them emotionally; due to multitasking, nurses were unable to manage their tasks within the expected time frame; nurses were stressful when they participated in explaining the diagnosis to the parents; and nurses felt powerless when the health condition of some children deteriorated. Educational challenges: Nurses felt unprepared to meet the physical/psychosocial aspects of caring for children with leukemia. Organizational challenges: Nurses stated that families and nurses required rooms to pray, rest, and read Quran, and they needed a private place to speak to families; and nurses mentioned that there are limited number of psychologists to meet the psychological and social needs of children and their families. Conclusion: Prioritizing and implementing strategies for a supportive workplace, guided clinical practice, and maximizing nurses' satisfaction are crucial.
Judith RE; Al Omari O; Elizabeth JS; Francis F; Arulappan J; Shakman L; Al Hashmi A; Al Sabei S; Khalaf A
Journal of Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/08258597231173313" target="_blank" rel="noreferrer noopener">10.1177/08258597231173313</a>
The Power and Potential of Photography as a Therapeutic Modality for Children with Life-Impacting Illnesses
Child; pediatrics; Photography; Only Child; therapy; families; photography; art; photographs
Objectives: Art is being increasingly appreciated for its healing capacity in pediatric medicine. However, while mediums like music and painting have already been widely integrated into children's health institutions across the nation, photography is an artform that is greatly understudied in its application to medicine. As a non-profit organization with a 17-year history of providing free in-hospital/in-hospice photography sessions to the families of children with life-impacting illnesses, we set out to evaluate the therapeutic capacity of this intervention. Methods: Individuals having received Moment by Moment Photography's services from June 2022 to January 2023 were invited to complete a five-question survey assessing the nature and quality of their photography session and the resulting photographs they received. Results: All but one of the 177 participants found the photographs impactful, and the overwhelming majority (95.5%) of participants rated the value of the photographs as high as possible (5/5 on a Likert scale). Further, a dozen themes, including love, share, connect, and fight, among others, were identified that articulate the diversity of ways that "impact" manifested in families. Conclusion: Together, these results clearly support the benefit of photography as a legacy making and therapeutic medium.
Henrich M; Henrich K
Journal of Palliative Care
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/08258597231189152" target="_blank" rel="noreferrer noopener">10.1177/08258597231189152</a>
Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer
Oncology
BACKGROUND: The quality of palliative and end-of-life (EOL) care for adolescents and young adults (AYAs) with cancer remains largely unknown. OBJECTIVE(S): To describe caregivers of AYA cancer decedents perspectives' on EOL care quality related to EOL care communication. DESIGN: Cross-sectional observational study. SETTING/SUBJECTS: Caregivers (n = 35) of AYAs who died from a cancer diagnosis from 2013-2016 were recruited from 3 U.S. academic medical centers. MEASUREMENTS: Caregiver participants completed structured surveys (FAMCARE scale and the Toolkit After-Death Bereaved Family Member Interview) by telephone to gather perceptions of quality of EOL care of their AYA cancer decedents. RESULT(S): Caregivers reported unmet needs regarding preparation for the time of death (50%), the dying process (45%) and unmet spiritual/ religious needs (38%). Lowest quality of EOL care scores related to communication and emotional support. CONCLUSION(S): Our findings call for special focus on providing information about what to expect during the dying process and adequately addressing spiritual and religious preferences during EOL care for AYAs.
Currie ER; Johnston EE; Bakitas M; Roeland E; Lindley LC; Gilbertson-White S; Mack J
Journal of Palliative Care
2021
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<a href="http://doi.org/10.1177/08258597211001991" target="_blank" rel="noreferrer noopener">10.1177/08258597211001991</a>
Challenges in the Provision of Pediatric Palliative Care in Mexico: A Cross-Sectional Web-Based Survey
health services accessibility; low- and middle-income countries; pediatric palliative care
Objective: An enormous need for pediatric palliative care (PPC) has been reported, especially in low- and middle-income countries (LMICs). However, the access to PPC is limited. This study identifies the current challenges in the provision of PPC and their severity from the perspective of healthcare professionals. Method(s): We conducted a web-based descriptive cross-sectional survey among healthcare professionals treating children in need of palliative care in Mexico in 2019. We used convenience sampling and snowball sampling to acquire participants. Result(s): Seventy healthcare professionals from Mexico participated. Participants were 64.3% female, on average 45.8 (SD=10.9) years old, had an average of 15.84 (SD=10.4) years of work experience and worked in 15 states. The three most severe barriers reported were: (1) Few teams and/or networks of out-of-hospital/domestic support; (2) Absence of training centres and continuing medical/paramedical education in PPC; and (3) Lack of legal, labor, and economic protection for parents who must stop working to be with their children. The barriers related to a lack of awareness and commitment, a lack of support, legal factors, and working conditions were rated highest. Participants considered increased awareness and better knowledge of PPC for all as the top priority, and particularly emphasized the need for better education and training of health professionals. Conclusion(s): We have identified several barriers to successful palliative care (PC) provision for children. Primarily, these are lack of awareness and commitment, especially of the health authorities and the medical professions, lack of personal and financial support, legal factors, and working conditions. The need to change and improve care exists at the policy level, the health professional level, and the public societal level.
Gruneberg ES; Ramos-Guerrero J; Pastrana T
Journal of Palliative Care
2021
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<a href="http://doi.org/10.1177/08258597211062767" target="_blank" rel="noreferrer noopener">10.1177/08258597211062767</a>
Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty
female; grief; ethics; human; perinatal care; uncertainty; article; palliative therapy; comfort; fetus; patient referral; infant; bereavement support; decision making
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty. For clinicians who counsel families in these circumstances, determining which ones might benefit from early palliative care referral can be challenging. We assert that all women carrying a fetus diagnosed with a life-threatening condition for which comfort-focused care at birth is one ethically reasonable option ought to be offered palliative care support prenatally, regardless of the chosen plan of care. Early palliative care support can contribute to informed decision making, enhance psychological and grief support, and provide opportunities for care planning that includes ways to respect and honor the life of the fetus or baby, however long it may be.
Lord S; Williams R; Pollard L; Ives-Baine L; Wilson C; Goodman K; Rapoport A
Journal of palliative care
2022
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<a href="http://doi.org/10.1177/08258597221098496" target="_blank" rel="noreferrer noopener">10.1177/08258597221098496</a>
Caregiver Decision-Making for Terminally Ill Children: A Qualitative Study
decision-making; end of life; goals of care; parental coping; pediatrics; terminally ill children
INTRODUCTION: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical providers. In order for providers to support caregivers, this study explores how caregivers make decisions regarding the medical care of their terminally ill children. METHODS: Semistructured interviews were conducted among caregivers of terminally ill children. Participation was voluntary and confidential. The institutional review board approved the protocol. Transcripts were read and coded by 2 authors using inductive, concurrent analysis to reach thematic saturation and generate common themes. RESULTS: Nine interviews were completed, discussing the care of 10 children. Caregivers described decision-making as impacted by their relationships with medical providers of 2 distinct types-trusting and nontrusting. Trusting relationships were notable for a longitudinal relationship with medical staff who empowered caregivers and treated the patient primarily as a child. Nontrusting relationships were noted when the medical team objectified their child as a "patient" and appeared to withhold information. Also, nontrusting relationships occurred when caregivers felt frustration with needing to educate health-care providers about their child's illness. CONCLUSION: Decision-making by caregivers of terminally ill children is complex, and supporting families in this process is a critical role of all medical providers. A trusting relationship with medical team members was identified as an effective tool for well-supported decision-making, which can potentially alleviate the suffering of the child and distress of the caregivers during this emotionally charged time.
Pinto TE; Doolittle B
Journal of Palliative Care
2019
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<a href="http://doi.org/10.1177/0825859719885947" target="_blank" rel="noreferrer noopener">10.1177/0825859719885947</a>
Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions
palliative care; perinatal palliative care; comfort care; end of life care; life limiting fetal conditions; vulnerable babies
Background: Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. Aim: To develop a service providing individually tailored holistic care during pregnancy, birth, postnatal and bereavement period. Methods: Following a baseline survey of neonatologists and discussions with key stakeholders we launched the Perinatal Palliative service at the KK Women's and Children's hospital, Singapore in January 2017. The multidisciplinary team, led by a Palliative care specialist comprised of Obstetricians, Neonatologists, nurses and medical social workers. The Birth defect clinic referred parents with antenatally diagnosed 'Lethal' fetal conditions. The team checked the understanding and the decision making process of parents and initiated and finalized advance care plans. The service also embraced deserving postnatal referrals upon request. Results: A total of 41 cases were seen from January 2017 to December 2019. Of these, 26/41(63%) were referred antenatally and had completed advance care plans. 18/41 (44%) died during or shortly after birth and 10/41(24%) continue to survive and are supported by the community palliative team. During this time a workflow was formulated and modified based on parent and team feedback. Conclusion: Awareness of the service has increased over the years and a clear workflow has been formulated. Advance care plans are prepared and documented before birth so as to enable service teams on board to provide well timed pertinent care. Feedbacks from parents about this service were positive.
Tewani KG; Jayagobi PA; Chandran S; Anand AJ; Thia EWH; Bhatia A; Bujal R; Khoo PC; Quek BH; Tagore S; Chua MC
Journal of Palliative Care
2021
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<a href="http://doi.org/10.1177/08258597211046735" target="_blank" rel="noreferrer noopener">10.1177/08258597211046735</a>
Translating Pediatric Hospital Interpreters' Feedback From Difficult Conversations into Improved Communication
communication; language; medical interpretation; pediatric palliative care
BACKGROUND: Medical interpreters are critical mediators in communication with pediatric subjects and families to include participation in difficult conversations. OBJECTIVE: The objective of this pilot study was to provide suggestions from medical interpreters to palliative care teams as to how to effectively incorporate medical interpreters into end-of-life conversations. SUBJECTS AND METHOD: Participants included pediatric hospital-based medical interpreters who had interpreted for at least 1 end-of-life conversation in the pediatric hospital setting. A total of 11 surveys were completed by medical interpreters. The study consisted of a written 12-item survey with a follow-up focus group to further explore survey themes. RESULTS: The translation of cultural contexts, awareness of the mixed messages the family received from health care teams, and the emotional intensity of the interactions were depicted as the most challenging aspects of the medical interpreter's role. Despite these challenges, 9 interpreters reported they would willingly be assigned for interpreting "bad news" conversations if given the opportunity (82%). Medical interpreters recognized their relationship with the family and their helping role for the family as meaningful aspects of interpreting even in difficult conversations. Medical interpreters shared 7 thematic suggestions for improved communication in language-discordant visits: content review, message clarity, advocacy role, cultural understanding, communication dynamics, professionalism, and emotional support. CONCLUSIONS: As experts in cultural dynamics and message transmission, the insights of medical interpreters can improve communication with families.
Weaver M S; Roeth A; Navaneethan H; Shostrom V K; Contreras-Nourse M
Journal of Palliative Care
2020
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<a href="http://doi.org/10.1177/0825859720933112" target="_blank" rel="noreferrer noopener">10.1177/0825859720933112</a>
Factors Associated With Knowledge and Comfort Providing Palliative Care: A Survey of Pediatricians in Mexico
barriers; comfort; education; knowledge; Mexico; pediatric palliative care
BACKGROUND:: Lack of education and training in palliative care has been described to be one of the most important barriers to pediatric palliative care implementation. OBJECTIVE:: To examine what factors determine the degree of knowledge and level of comfort Mexican pediatricians have providing pediatric palliative care. METHODS:: A questionnaire that assessed palliative care concepts was developed and applied online to Mexican pediatricians, both generalists and specialists. RESULTS:: A total of 242 pediatricians responded. The majority had not received palliative care education (92.6%) and felt uncomfortable discussing palliative needs with patients and families (92.1%). The mean score of the questionnaire was 6.8 (+/-1.4) of 10 correct answers. Knowledge in palliative care was associated with exposure to oncologic patients ( P = .01) and previous palliative care education ( P = .02) but inversely related to the pediatrician's age ( P = .01). Comfort addressing patient's palliative care needs was associated with knowledge in palliative care ( P < .01), exposure to oncologic patients ( P = .03), and previous education in palliative care ( P = .02). CONCLUSIONS:: Although Mexican pediatricians have basic knowledge of palliative care concepts, they do not feel comfortable addressing palliative care needs, suggesting that the main barrier for implementing palliative care is not the lack of knowledge but rather feeling uncomfortable when addressing these issues with patients and families. Educational programs should incorporate strategies that could help physicians develop comfort in approaching palliative care patients.
Zuniga-Villanueva G; Ramirez-GarciaLuna J L; Weingarten K
Journal of Palliative Care
2019
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<a href="http://doi.org/10.1177/0825859719827021" target="_blank" rel="noreferrer noopener">10.1177/0825859719827021</a>
Sowing Across a State: Development and Delivery of a Grassroots Pediatric Palliative Care Nursing Curriculum
education; hospice; palliative care; pediatric; pediatric palliative; rural health
BACKGROUND: Rural pediatricians and adult-trained hospice teams report feeling ill-prepared to care for children at end of life, resulting in geographies in which children are not able to access home-based services. OBJECTIVES: To develop a pediatric palliative care curriculum for inpatient nurses and adult-trained hospice teams caring for children in a rural region. METHODS: Curriculum design and delivery was informed by local culture through an interdisciplinary, iterative development approach with confidence, intention, and support measured pre-, post-, and 4 months after delivery. A needs assessment was completed by pediatric nurses caring for children receiving palliative or end-of-life care to inform curricular content (phase 1). A curriculum was designed by an interdisciplinary pediatric palliative care team and piloted with nursing cohorts annually through educational conferences with monthly discussion series for 3 consecutive years (phase 2). Curricular content was then provided for 31 rural hospice team members (phase 3). RESULTS: Self-reported confidence in caring for children increased by 1.1/10 points for adult-trained hospice team members. Mean score for intention to care for children increased by 5.2 points (sustained 5.1 points above baseline at 4 months). Perception of support in caring for children increased by 5 points (mean sustained 5.4 points above baseline at 4 months). Family needs, care goals, and symptom management were prioritized learning topics. Rural hospices previously unwilling to accept children enrolled pediatric patients in the 4 months following the conference. CONCLUSION: Grassroots curricular initiatives and ongoing educational mentorship can grow pediatric palliative and hospice services in rural regions.
Weaver M S; Jenkins R; Wichman C; Robinson J E; Potthoff M R; Menicucci T; Vail C A
Journal of Palliative Care
2019
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<a href="http://doi.org/10.1177/0825859719889700" target="_blank" rel="noreferrer noopener">10.1177/0825859719889700</a>
Congenital Cardiothoracic Surgeons and Palliative Care: A National Survey Study
adolescent; adult; article; child; clinical article; female; human; hypoplastic left heart syndrome; male; medical care; palliative therapy; pediatric cardiology; perception; prenatal diagnosis; thoracic surgeon
BACKGROUND: The majority of children with advanced heart disease in the inpatient setting die in an intensive care unit under 1 year of age following multiple interventions. While pediatric cardiology and palliative care provider attitudes have been described, little is known about pediatric cardiothoracic surgeon attitudes toward palliative care in children with advanced heart disease. OBJECTIVE: To describe perspectives of pediatric cardiothoracic surgeons regarding palliative care in pediatric heart disease. DESIGN: Cross-sectional web-based national survey. RESULTS: Of the 220 surgeons who were e-mailed the survey, 36 opened the survey and 5 did not meet inclusion criteria (n = 31). Median years of practice was 23.5 (range: 12-41 years), and 87.1% were male. Almost all (90%) reported that they had experience consulting palliative care. While 68% felt palliative care consultation was initiated at the appropriate time, 29% felt it occurred too late. When asked the appropriate timing for palliative care consultation in hypoplastic left heart syndrome, 45% selected "at time of prenatal diagnosis" and 30% selected "when surgical and transcatheter options have been exhausted." Common barriers to palliative care involvement included the perception of "giving up" (40%) and concern for undermining parental hope (36%). CONCLUSIONS: While a majority of pediatric cardiothoracic surgeons are familiar with palliative care, there is variation in perception of appropriate timing of consultation. Significant barriers to consultation still exist, including concern that parents will think they are "giving" up, undermining parental hope, and influence of palliative care on the medical care team's approach.
Morell E; Thompson J; Rajagopal S; Blume ED; May R
Journal of palliative care
2019
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<a href="http://doi.org/10.1177/0825859719874765" target="_blank" rel="noreferrer noopener">10.1177/0825859719874765</a>
Impact of a Massage Therapy Intervention for Pediatric Palliative Care Patients and Their Family Caregivers
pediatric palliative care; palliative care; massage therapy; pediatric; massage; integrative therapy
Context: All inpatient children receiving pediatric palliative care consults at a free-standing children's hospital.Objectives: To explore the impact of massage therapy on pediatric palliative care patients' symptom burden and medication use pattern, to describe the impact of massage therapy on family caregiver distress, and to report on bedside nursing staff perception of massage therapy for children and their families.Methods: A 1-time point, single-center exploratory study offering 10-minute bedside massage to children receiving palliative care and 10-minute massage to their family caregivers.Results: A total of 135 massages were provided to children and their caregivers. Difference in child Face, Legs, Activity, Cry, Consolability scale (FLACC) score was detectable (P < .0001) with the median (interquartile range [IQR]) before FLACC score being 2 (1-3) and after FLACC score being 0 (0-1). Difference in "as-needed" pain medication usage in the 24 hours before and after the massage was detectable (P = .0477). Median difference in family caregiver distress with massage was -3.0 (IQR = 2.0, P < .0001). Bedside nurses (100%) reported massage to be a meaningful way to care for their families and patients.Conclusion: Massage therapy is a potentially meaningful intervention for pediatric palliative care patients with noted impact on symptom burden, benefit to family caregivers, and acceptance by nursing staff.
Weekly T; Riley B; Wichman C; Tibbits M; Weaver M
Journal of Palliative Care
2019
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<a href="http://doi.org/10.1177/0825859718810727" target="_blank" rel="noreferrer noopener">10.1177/0825859718810727</a>
Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.
fetal anomaly; instrument development; neonatal palliative care; pediatric palliative care; perinatal hospice; perinatal palliative care
Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care.
Stenekes S; Penner JL; Harlos M; Proulx M; Shepherd E; Liben S; Thompson G; MacConnell G; Gregoire M; Siden Harold Hal
Journal of palliative care
2018
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<a href="http://doi.org/10.1177/0825859718790627" target="_blank" rel="noreferrer noopener">10.1177/0825859718790627</a>
Palliative sedation: The author's response
Humans; United States; Palliative Care; Physician's Practice Patterns; Treatment Outcome; Ethics; Medical; Hypnotics and Sedatives/administration & dosage
2005
Rousseau P
Journal Of Palliative Care
2005
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Journal Article
<a href="http://doi.org/10.1089/jpm.2005.8.702" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.702</a>
Addressing spirituality in pediatric hospice and palliative care
Child; Adult; Religion and Medicine; Needs Assessment; Religion and Psychology; Nursing Assessment; Family/psychology; Human; Child Psychology; Holistic Health; Practice Guidelines; Spirituality; Palliative Care/methods/psychology/standards; Pastoral Care/methods/standards; Pediatrics/methods
Hospice and palliative care principles mandate clinicIans to provide "total" care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. Even though considerable attention has been directed to spiritual issues for adult patients in hospice and palliative care, spirituality in pediatric palliative care has been virtually neglected. The need for guidelines to assess spirituality in this population was identified as a priority issue by members of a subcommittee of the Children's International Project on Children's Palliative/Hospice Services, created under the auspices of the National Hospice Organization. Committee members, based on their clinical, research, and personal experiences, identified several aspects relevant to spirituality in general, and to spirituality in pediatric palliative care in particular, and developed guidelines for clinicians in pediatric palliative care. The purpose of this paper is to share the results of this committee's work and, in particular, to present their guidelines for addressing spiritual issues in children and families in pediatric hospice and palliative care.
2002
Davies B; Brenner P; Orloff S; Sumner L; Worden W
Journal Of Palliative Care
2002
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Journal Article
Palliative care on the net: an online survey of health care professionals
Female; Male; Adult; Questionnaires; Aged; Middle Aged; Computer Communication Networks; Practice; Attitudes; Health Knowledge; Human; Databases; Periodicals; Attitude of Health Personnel; Attitude to Computers; Factual/utilization; Health Personnel/psychology/statistics & numerical data; Information Services/utilization; Internet/utilization; Nurses/psychology/statistics & numerical data; Online Systems/utilization; Pharmacists/psychology/statistics & numerical data; Physicians/psychology/statistics & numerical data; Terminal Care/statistics & numerical data
A survey was conducted to explore Internet use by palliative care health professionals (HCP). The survey was placed on the World Wide Web with an underlying database, and palliative care HCP were invited to participate via a palliative-care-related website, listserv, and newsletter. A total of 417 evaluable responses were received over a four-month period. Of these, 36% indicated they were from physicians and 30% from nurses, a third of respondents were practicing palliative care full time. Although 63% of respondents were from North America, regions from all over the world were represented. Eighty-eight percent of respondents were searching the Internet for clinical information, 80% were using email, 69% were accessing online medical journals, and 59% were subscribers to a palliative-care-related listserv or newsgroup. This survey illustrates the global outreach of the Internet and draws attention to the growing interest in the use of the Internet for education, research, and clinical use. Further development of online resources should address the needs of users. Evaluation of these resources is called for.
2001
Pereira J; Bruera E; Quan H
Journal Of Palliative Care
2001
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Journal Article
Supportive care: palliative care in children, adolescents, and young adults--model of care, interventions, and cost of care: a retrospective review
Child; Female; Male; Adult; Hospitals; Health Care Costs; Pediatric; adolescent; retrospective studies; Intervention; Interventions; Philadelphia; Human; Nursing; Models; Palliative Care/economics/organization & administration
2000
Belasco JB; Danz P; Drill A; Schmid W; Burkey E
Journal Of Palliative Care
2000
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Journal Article
Challenges in identifying children for palliative care
Child; Attitude to Death; Pilot Projects; quality of life; patient care team; Caregivers/psychology; Human; Palliative Care; Attitude of Health Personnel; Patient Selection
1996
Davies B; Steele R
Journal Of Palliative Care
1996
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Journal Article
Research priorities in pediatric palliative care: a delphi study
Attitude of Health Personnel; Attitude to Health; Benchmarking; bereavement; Canada; Child; Consensus; Delphi Technique; Evidence-Based Practice; Family/psychology; Humans; Needs Assessment/organization & administration; Pain/prevention & control; Palliative Care/organization & administration; Pediatrics/organization & administration; Practice Guidelines as Topic; Psychological/prevention & control; Questionnaires; Research Design; Research/organization & administration; Stress
Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. Objectives: The goal of the project was to achieve consensus among palliative care practitioners and researchers regarding the identification of pertinents lines of research. Method: A Delphi technique was used with an interdisciplinary panel (n=14–16) of researchers and frontline clinicians in pediatric palliative care in Canada. Results: Four priority research questions were identified: What matters most for patients and parents receiving pediatric palliative services? What are the bereavement needs of families in pediatric palliative care? What are the best practice standards in pain and symptom management? What are effective strategies to alleviate suffering at the end of life? Conclusions: These identified priorities will provide guidance and direction for research efforts in Canada, and may prove useful in providing optimal care to patients and families in pediatric palliative care.
Steele R; Fletcher JM; Bosma H; Siden H; Straatman L; Fleming C; Cadell S; Davies B
Journal Of Palliative Care
2007
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<a href="http://scholars.wlu.ca/scwk_faculty/12/" target="_blank" rel="noreferrer">scwk_faculty/12</a>
Pediatric Enteral Feeding Intolerance: A New Prognosticator For Children With Life-limiting Illness?
Child; Child Preschool; Enteral Nutrition/ Adverse Effects; Female; Humans; Infant; Male; Prognosis; Terminal Care/ Methods
Siden H; Tucker T; Derman S; Cox K; Soon GS; Hartnett C; Straatman L
Journal Of Palliative Care
2009
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/19824283" target="_blank" rel="noreferrer">19824283</a>
An integrative approach to music therapy in pediatric palliative care.
Hospices; Music Therapy; Palliative Care; Adolescent; British Columbia; Child; Child Preschool; Female; Humans; Infant; Male; Program Development; Program Evaluation; Young Adult
Clark BA; Siden H; Straatman L
Journal Of Palliative Care
2014
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/25265742" target="_blank" rel="noreferrer">25265742</a>