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Pediatric palliative care, palliative care, end of life communication

Anne G Ciriello, Zoelle B Dizon, Tessie W October
BACKGROUND: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. AIM: To compare language used by PC team and ICU physicians during family conferences. DESIGN: A retrospective cohort review of ICU family conferences with and without the PC team. SETTING: Forty-four bed pediatric ICU in a tertiary medical center...
January 1, 2017: American Journal of Hospice & Palliative Care
Patricia Flanagan, Nancy DeMetro
Nursing students' learning of adult and pediatric palliative care is a daunting experience. An effective initial teaching strategy using a Memory Quilt activity can improve nursing students' interpersonal and communication skills and help prepare them for end-of-life caring. These skills help students meet patient and family needs, as they transition to care settings.
April 2017: Journal of Christian Nursing: a Quarterly Publication of Nurses Christian Fellowship
Amanda Henderson, Jeanine Young, Anthony Herbert, Natalie Bradford, Lee-Anne Pedersen
BACKGROUND: Preparedness to initiate end-of-life (EoL) discussions is a confronting and daunting task for all healthcare professionals. We conducted a group interview to explore healthcare professionals' experiences of preparing for EoL discussions with the patient and their family in a pediatric context. AIM: To identify what pediatric healthcare professionals consider important when preparing for an EoL discussion. METHODS: A qualitative design using a group interview...
February 10, 2017: Journal of Palliative Medicine
Arunangshu Ghoshal, Naveen Salins, Anuja Damani, Jayita Deodhar, MaryAnn Muckaden
PURPOSE: To audit referral practices of pediatric oncologists referred to specialist pediatric palliative care services. PATIENTS AND METHODS: Retrospective review of medical case records of pediatric palliative care patients over a period of 5 years from January 1, 2010 to December 31, 2014. Descriptive summaries of demographic, clinical variables, and patient circumstances at the time of referral and during end-of-life care were examined. RESULTS: A total of 1135 patients were referred from pediatric oncology with a gradual increasing trend over 5 years...
July 2016: Indian Journal of Palliative Care
Naveen Salins, Raghavendra Ramanjulu, Lipika Patra, Jayita Deodhar, Mary Ann Muckaden
INTRODUCTION: World Health Organization and American Society of Clinical Oncology recommend early integration of specialist palliative care in patients with cancer. This paper focuses on critical review of evidence on integration of early specialist palliative care in cancer care and patient-related outcomes. METHODS: The question for the literature search was - Does integration of early specialist palliative care in cancer care influences patient-related outcomes? 31 articles related to literature search review question were included in this paper...
July 2016: Indian Journal of Palliative Care
Danielle Fitzpatrick, Rebecca Heah, Simon Patten, Helena Ward
PURPOSE: There is an increasing demand for quality palliative care teaching within undergraduate medical education. Studies suggest that many junior doctors feel underprepared to perform end-of-life care. Previous systematic reviews on palliative care teaching within medical schools have identified significant variability and lack of consistency in teaching. This review aims to update the literature on the current status of palliative care teaching to undergraduates within medical schools...
January 1, 2016: American Journal of Hospice & Palliative Care
Debbie Stayer, Joan Such Lockhart
BACKGROUND: Despite reported challenges encountered by nurses who provide palliative care to children, few researchers have examined this phenomenon from the perspective of nurses who care for children with life-threatening illnesses in pediatric intensive care units. OBJECTIVES: To describe and interpret the essence of the experiences of nurses in pediatric intensive care units who provide palliative care to children with life-threatening illnesses and the children's families...
July 2016: American Journal of Critical Care: An Official Publication, American Association of Critical-Care Nurses
Rebecca Kirch, Gregory Reaman, Chris Feudtner, Lori Wiener, Lisa A Schwartz, Lillian Sung, Joanne Wolfe
This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family members, clinician investigators, advocates, and members of the public to discuss emerging evidence and care models and to determine the next steps for optimizing quality-of-life outcomes and well-being for children and families during pediatric cancer treatment, after treatment completion, and across the life spectrum...
September 2016: CA: a Cancer Journal for Clinicians
Kathleen E Montgomery, Kathleen J Sawin, Verna Hendricks-Ferguson
BACKGROUND: Communication between patients, families, and healthcare providers is a central component of end-of-life care. Nurse communication during palliative care (PC) and end of life (EOL) is a phenomenon with limited research. It is unclear how the level of nursing experience influences the perspectives of nurses communicating during EOL. OBJECTIVE: The aim of this study is to describe the commonalities of experienced nurses' perceptions of communicating during PC and EOL and perceptions of barriers and facilitators to effective communication...
March 2017: Cancer Nursing
Christina K Ullrich, Leslie Lehmann, Wendy B London, Dongjing Guo, Madhumitha Sridharan, Richard Koch, Joanne Wolfe
Stem cell transplantation (SCT) is an intensive therapy offering the possibility of cure for life-threatening conditions but with risk of serious complications and death. Outcomes associated with pediatric palliative care (PPC) for children who undergo SCT are unknown. Therefore, we evaluated whether PPC consultation is associated with differences in end-of-life (EOL) care patterns for children who underwent SCT and did not survive. Medical records of children who underwent SCT at Boston Children's Hospital/Dana-Farber Cancer Institute for any indication from September 2004 to December 2012 and did not survive were reviewed...
June 2016: Biology of Blood and Marrow Transplantation
Carrie M Henderson, Michael FitzGerald, K Sarah Hoehn, Norbert Weidner
CONTEXT: Palliative sedation is a means of relieving intractable symptoms at the end of life, however, guidelines about its use lack consistency. In addition, ethical concerns persist around the practice. There are reports of palliative sedation in the pediatric literature, which highlight various institutional perspectives. OBJECTIVES: This survey of 4786 pediatric providers sought to describe their knowledge of and current practices around pediatric palliative sedation...
February 2017: American Journal of Hospice & Palliative Care
Karen W Carroll, Cynthia J Mollen, Sarah Aldridge, Kari R Hexem, Chris Feudtner
BACKGROUND: Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized. METHODS: As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospital's pediatric palliative care service. The semistructured interviews focused on "decision making for your child"; the interviews were recorded and transcribed...
January 2012: AJOB Primary Research
Meaghann S Weaver, Katherine E Heinze, Cynthia J Bell, Lori Wiener, Amy M Garee, Katherine P Kelly, Robert L Casey, Anne Watson, Pamela S Hinds
BACKGROUND: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate. AIM: Identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families. Analyze barriers to implementation and enabling factors...
March 2016: Palliative Medicine
Tamara Z Vern-Gross, Catherine G Lam, Zachary Graff, Sara Singhal, Deena R Levine, Deborah Gibson, April Sykes, Doralina L Anghelescu, Ying Yuan, Justin N Baker
CONTEXT: Pediatric patients with solid tumors can have a significant symptom burden that impacts quality of life (QoL) and end-of-life care needs. OBJECTIVES: We evaluated outcomes and symptoms in children with solid tumors and compared patterns of end-of-life care after implementation of a dedicated institutional pediatric palliative care (PC) service. METHODS: We performed a retrospective cohort study of children with solid tumors treated at St...
September 2015: Journal of Pain and Symptom Management
Marijke C Kars, Mieke H F Grypdonck, Leonie C de Bock, Johannes J M van Delden
OBJECTIVE: In pediatric oncology, parents want, and are expected, to act and decide in the best interest of their child. A recent qualitative study (PRESENCE study) indicated that parents had difficulty in doing so. The aim of this subanalysis was to describe and offer an explanation for the parents' actions in expressing and handling of "the voice of the child." METHOD: A multicenter, qualitative research study comprising 37 interviews conducted with 34 parents of 17 children with incurable cancer, cared for at home, during the palliative phase...
April 2015: Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association
Verna L Hendricks-Ferguson, Javier R Kane, Kamnesh R Pradhan, Chie-Schin Shih, Karen M Gauvain, Justin N Baker, Joan E Haase
When a child's prognosis is poor, physicians and nurses (MDs/RNs) often struggle with initiating discussions about palliative and end-of-life care (PC/EOL) early in the course of illness trajectory. We describe evaluation of training procedures used to prepare MD/RN dyads to deliver an intervention entitled: Communication Plan: Early Through End of Life (COMPLETE) intervention. Our training was delivered to 5 pediatric neuro-oncologists and 8 pediatric nurses by a team of expert consultants (i.e., in medical ethics, communication, and PC/EOL) and parent advisors...
September 2015: Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses
Mirjam A de Vos, Albert P Bos, Frans B Plötz, Marc van Heerde, Bert M de Graaff, Kiek Tates, Robert D Truog, Dick L Willems
BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to what extent parents share in the decision-making process. METHODS: We conducted a prospective exploratory study in 2 Dutch University Medical Centers. RESULTS: Overall, 27 physicians participated, along with 37 parents of 19 children for whom a decision to withhold or withdraw LST was being considered...
February 2015: Pediatrics
Verna L Hendricks-Ferguson, Kathleen J Sawin, Kitty Montgomery, Claretta Dupree, Celeste R Phillips-Salimi, Barb Carr, Joan E Haase
Health care providers recognize that delivery of effective communication with family members of children with life-threatening illnesses is essential to palliative and end-of-life care (PC/EOL). Parents value the presence of nurses during PC/EOL of their dying child. It is vital that nurses, regardless of their years of work experience, are competent and feel comfortable engaging family members of dying children in PC/EOL discussions. This qualitative-descriptive study used focus groups to explore the PC/EOL communication perspectives of 14 novice pediatric oncology nurses (eg, with less than 1 year of experience)...
July 2015: Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses
Renee Boss, Judith Nelson, David Weissman, Margaret Campbell, Randall Curtis, Jennifer Frontera, Michelle Gabriel, Dana Lustbader, Anne Mosenthal, Colleen Mulkerin, Kathleen Puntillo, Daniel Ray, Rick Bassett, Karen Brasel, Ross Hays
OBJECTIVE: This review highlights benefits that patients, families and clinicians can expect to realize when palliative care is intentionally incorporated into the PICU. DATA SOURCES: We searched the MEDLINE database from inception to January 2014 for English-language articles using the terms "palliative care" or "end of life care" or "supportive care" and "pediatric intensive care." We also hand-searched reference lists and author files and relevant tools on the Center to Advance Palliative Care website...
October 2014: Pediatric Critical Care Medicine
Shu-Mei Liu, Hung-Ru Lin, Frank L Lu, Tzu-Ying Lee
PURPOSE: The purpose of this project was to explore the parental experience of making a "do not resuscitate" (DNR) decision for their child who is or was cared for in a pediatric intensive care unit in Taiwan. METHODS: A descriptive qualitative study was conducted following parental signing of a standard hospital DNR form on behalf of their critically ill child. Sixteen Taiwanese parents of 11 children aged 1 month to 18 years were interviewed. Interviews were recorded, transcribed, analyzed and sorted into themes by the sole interviewer plus other researchers...
March 2014: Asian Nursing Research
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