Lori Wiener - Academia.edu (original) (raw)
Papers by Lori Wiener
Springer eBooks, Dec 31, 2022
Journal Of Pediatric Psychology, 2019
The Oxford Textbook of Palliative Social Work, 2022
Adolescents and young adults (AYAs) living with serious illness are uniquely challenged by the co... more Adolescents and young adults (AYAs) living with serious illness are uniquely challenged by the conundrum of possessing the cognitive capacity to understand the gravity of their illness, yet lacking skills to cope with that understanding. They are tasked with navigating transitions from childhood to adulthood that are already characterized by tremendous growth, change, and heightened vulnerability to stress. AYAs benefit from early introduction of an integrated approach to palliative social work—combining knowledge and strategies from pediatric and adult settings, with uniquely AYA interventions that reflect their sociodemographic and contextual complexity. In this chapter, we define and characterize the AYA patient care population; describe the significance of palliative social work; highlight clinical strategies and skills for working with AYAs; detail a developmentally appropriate approach to advance care planning; and conclude by discussing self-care practices for palliative soci...
62nd ASH Annual Meeting and Exposition, Dec 4, 2020
The Journal of Pediatrics, 2022
Handbook of Supportive Oncology and Palliative Care, 2018
Handbook of Supportive Oncology and Palliative Care, 2018
Sarcoma, 2017
When a child is diagnosed with cancer, life as the family once knew it ceases to exist. Families ... more When a child is diagnosed with cancer, life as the family once knew it ceases to exist. Families are faced with their greatest fear. Childhood cancer is a family disease that impacts the psychological, social, and emotional health of the entire family system. Providing psychosocial care for the child and the family throughout the cancer trajectory, from the time of diagnosis through survivorship or end-of-life care, is vital to achieving optimal health and wellness. This chapter highlights the importance of psychosocial care, discusses the role and strategies of patient advocacy with the impact parents can have on the effectiveness of medical care, and reviews the national project that is underway to develop and implement standards of psychosocial care for childhood cancer. The perspective of parents and psycho-oncology professionals is incorporated in this chapter, and together they give voice to Mattie’s courageous battle against osteosarcoma.
Journal of Clinical Oncology, 2020
Pediatric palliative care aims to alleviate suffering and improve the quality of life of children... more Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children, adolescents, and young adults with cancer has resulted in improved outcomes in patients and their families. The field of pediatric palliative oncology—encompassing primary palliative care provided by the multidisciplinary oncology team as well as subspecialty palliative care provided by the palliative care team for more complex cases—is unique from palliative care in adults given its focus on care of the child and the larger family. In this review, we focus on advancements in the specific domains within pediatric palliative oncology care including family-centered communication, assessment and management of physical symptoms and distress, psychosocial concerns, and spiritual considerations of the patient, parents, and siblings.
Pediatric Blood & Cancer, 2018
A pioneer in early psychosocial care for children undergoing bone marrow transplant (BMT) and the... more A pioneer in early psychosocial care for children undergoing bone marrow transplant (BMT) and their families in the 1970s and 1980s and later in survivorship care and cancer genetics, Andrea Farkas Patenaude, PhD, was an internationally renowned clinician-scientist who had a significant impact on the field of pediatric psycho-oncology. Dr. Patenaude received her undergraduate degree in psychology from the University of Chicago and her doctorate from Michigan State University.
Textbook of Pediatric HIV Care, 2005
Journal of Pain and Symptom Management, 2017
Children
Multiple Endocrine Neoplasia type 2 (MEN2) is a genetic cancer syndrome for which there are limit... more Multiple Endocrine Neoplasia type 2 (MEN2) is a genetic cancer syndrome for which there are limited data pertaining to the quality of life and psychosocial experiences of persons affected. Medullary thyroid carcinoma (MTC) is a rare disease of the thyroid gland often associated with MEN2. MTC often progresses slowly and may present with a myriad of physical symptoms including hair loss, sleep disturbance, fatigue, weight changes, heart palpitations, and constipation or diarrhea. Like other cancers or rare, inheritable illnesses, patients with MEN2 and MTC may be at risk for psychosocial stressors. The current, cross-sectional study administered a structured psychosocial interview and The Distress Thermometer/Problem Checklist to 63 patients with MEN2 and MTC and their caregivers. Despite reports of overall good health, 46% of adults and 44% of youth reported that pain interferes with their daily life; 53% of adults and 59% of youth reported that pain interferes with their mood. Pedi...
Oxford University Press eBooks, Jun 1, 2017
Mental health professionals need to understand how the psychosocial and mental health needs of HI... more Mental health professionals need to understand how the psychosocial and mental health needs of HIV-infected youth evolve over time and to be able to identify salient clinical challenges that present with each developmental stage. It is also important to understand that HIV/AIDS affects children’s lives indirectly, by the presence of HIV/AIDS in a family member, even if the child is not HIV infected. This chapter uses a developmental perspective to introduce key mental health objectives in the lives of developing HIV-infected children and adolescents and provides an overview of epidemiological, psychosocial, and clinical parameters to be considered in their clinical care and management. The chapter also addresses issues facing perinatally and behaviorally HIV-infected children and adolescents. Separate sections of the chapter discuss biopsychosocial factors salient to children and adolescents who are affected by HIV infection in the family.
Bone Marrow Transplantation
Current Oncology
This article is an open access article distributed under the terms and conditions of the Creative... more This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY
Journal of Pain and Symptom Management
Cancer
The study by Barz Leahy et al highlights the progressing state of patient‐reported outcome scienc... more The study by Barz Leahy et al highlights the progressing state of patient‐reported outcome science as true translational research from development to implementation and the clinical usefulness of electronic symptom monitoring for pediatric patients undergoing chemotherapy in an inpatient setting. Future considerations include addressing discordant reporting between the child and the caregiver, replication in more diverse racial and ethnic populations, and assurance that the rich electronic data obtained do not supplant the human‐to‐human interaction so central to oncology care.
Zenodo (CERN European Organization for Nuclear Research), Mar 17, 2023
This article is an open access article distributed under the terms and conditions of the Creative... more This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY
Cancers
Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to d... more Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to help facilitate these difficult discussions. This multi-perspective study aimed to evaluate its appropriateness, acceptability, and clinical considerations for Australian AYAs with cancer. Procedure: Forty-three participants including AYAs who were either undergoing or recently completed cancer treatment, their parents, and multidisciplinary health professionals assessed the acceptability of each VMC section quantitatively (appropriateness—yes/no, helpfulness and whether content caused stress—1 = not at all, to 5 = very) and qualitatively (sources of stress). AYAs also assessed the benefit and burden of completing several sections of the document, to inform clinical considerations. We conducted a mixed-methods analysis to obtain descriptive statist...
Springer eBooks, Dec 31, 2022
Journal Of Pediatric Psychology, 2019
The Oxford Textbook of Palliative Social Work, 2022
Adolescents and young adults (AYAs) living with serious illness are uniquely challenged by the co... more Adolescents and young adults (AYAs) living with serious illness are uniquely challenged by the conundrum of possessing the cognitive capacity to understand the gravity of their illness, yet lacking skills to cope with that understanding. They are tasked with navigating transitions from childhood to adulthood that are already characterized by tremendous growth, change, and heightened vulnerability to stress. AYAs benefit from early introduction of an integrated approach to palliative social work—combining knowledge and strategies from pediatric and adult settings, with uniquely AYA interventions that reflect their sociodemographic and contextual complexity. In this chapter, we define and characterize the AYA patient care population; describe the significance of palliative social work; highlight clinical strategies and skills for working with AYAs; detail a developmentally appropriate approach to advance care planning; and conclude by discussing self-care practices for palliative soci...
62nd ASH Annual Meeting and Exposition, Dec 4, 2020
The Journal of Pediatrics, 2022
Handbook of Supportive Oncology and Palliative Care, 2018
Handbook of Supportive Oncology and Palliative Care, 2018
Sarcoma, 2017
When a child is diagnosed with cancer, life as the family once knew it ceases to exist. Families ... more When a child is diagnosed with cancer, life as the family once knew it ceases to exist. Families are faced with their greatest fear. Childhood cancer is a family disease that impacts the psychological, social, and emotional health of the entire family system. Providing psychosocial care for the child and the family throughout the cancer trajectory, from the time of diagnosis through survivorship or end-of-life care, is vital to achieving optimal health and wellness. This chapter highlights the importance of psychosocial care, discusses the role and strategies of patient advocacy with the impact parents can have on the effectiveness of medical care, and reviews the national project that is underway to develop and implement standards of psychosocial care for childhood cancer. The perspective of parents and psycho-oncology professionals is incorporated in this chapter, and together they give voice to Mattie’s courageous battle against osteosarcoma.
Journal of Clinical Oncology, 2020
Pediatric palliative care aims to alleviate suffering and improve the quality of life of children... more Pediatric palliative care aims to alleviate suffering and improve the quality of life of children with serious disease and increase support for their parents and other family members. Integration of palliative care into the routine care of children, adolescents, and young adults with cancer has resulted in improved outcomes in patients and their families. The field of pediatric palliative oncology—encompassing primary palliative care provided by the multidisciplinary oncology team as well as subspecialty palliative care provided by the palliative care team for more complex cases—is unique from palliative care in adults given its focus on care of the child and the larger family. In this review, we focus on advancements in the specific domains within pediatric palliative oncology care including family-centered communication, assessment and management of physical symptoms and distress, psychosocial concerns, and spiritual considerations of the patient, parents, and siblings.
Pediatric Blood & Cancer, 2018
A pioneer in early psychosocial care for children undergoing bone marrow transplant (BMT) and the... more A pioneer in early psychosocial care for children undergoing bone marrow transplant (BMT) and their families in the 1970s and 1980s and later in survivorship care and cancer genetics, Andrea Farkas Patenaude, PhD, was an internationally renowned clinician-scientist who had a significant impact on the field of pediatric psycho-oncology. Dr. Patenaude received her undergraduate degree in psychology from the University of Chicago and her doctorate from Michigan State University.
Textbook of Pediatric HIV Care, 2005
Journal of Pain and Symptom Management, 2017
Children
Multiple Endocrine Neoplasia type 2 (MEN2) is a genetic cancer syndrome for which there are limit... more Multiple Endocrine Neoplasia type 2 (MEN2) is a genetic cancer syndrome for which there are limited data pertaining to the quality of life and psychosocial experiences of persons affected. Medullary thyroid carcinoma (MTC) is a rare disease of the thyroid gland often associated with MEN2. MTC often progresses slowly and may present with a myriad of physical symptoms including hair loss, sleep disturbance, fatigue, weight changes, heart palpitations, and constipation or diarrhea. Like other cancers or rare, inheritable illnesses, patients with MEN2 and MTC may be at risk for psychosocial stressors. The current, cross-sectional study administered a structured psychosocial interview and The Distress Thermometer/Problem Checklist to 63 patients with MEN2 and MTC and their caregivers. Despite reports of overall good health, 46% of adults and 44% of youth reported that pain interferes with their daily life; 53% of adults and 59% of youth reported that pain interferes with their mood. Pedi...
Oxford University Press eBooks, Jun 1, 2017
Mental health professionals need to understand how the psychosocial and mental health needs of HI... more Mental health professionals need to understand how the psychosocial and mental health needs of HIV-infected youth evolve over time and to be able to identify salient clinical challenges that present with each developmental stage. It is also important to understand that HIV/AIDS affects children’s lives indirectly, by the presence of HIV/AIDS in a family member, even if the child is not HIV infected. This chapter uses a developmental perspective to introduce key mental health objectives in the lives of developing HIV-infected children and adolescents and provides an overview of epidemiological, psychosocial, and clinical parameters to be considered in their clinical care and management. The chapter also addresses issues facing perinatally and behaviorally HIV-infected children and adolescents. Separate sections of the chapter discuss biopsychosocial factors salient to children and adolescents who are affected by HIV infection in the family.
Bone Marrow Transplantation
Current Oncology
This article is an open access article distributed under the terms and conditions of the Creative... more This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY
Journal of Pain and Symptom Management
Cancer
The study by Barz Leahy et al highlights the progressing state of patient‐reported outcome scienc... more The study by Barz Leahy et al highlights the progressing state of patient‐reported outcome science as true translational research from development to implementation and the clinical usefulness of electronic symptom monitoring for pediatric patients undergoing chemotherapy in an inpatient setting. Future considerations include addressing discordant reporting between the child and the caregiver, replication in more diverse racial and ethnic populations, and assurance that the rich electronic data obtained do not supplant the human‐to‐human interaction so central to oncology care.
Zenodo (CERN European Organization for Nuclear Research), Mar 17, 2023
This article is an open access article distributed under the terms and conditions of the Creative... more This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY
Cancers
Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to d... more Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to help facilitate these difficult discussions. This multi-perspective study aimed to evaluate its appropriateness, acceptability, and clinical considerations for Australian AYAs with cancer. Procedure: Forty-three participants including AYAs who were either undergoing or recently completed cancer treatment, their parents, and multidisciplinary health professionals assessed the acceptability of each VMC section quantitatively (appropriateness—yes/no, helpfulness and whether content caused stress—1 = not at all, to 5 = very) and qualitatively (sources of stress). AYAs also assessed the benefit and burden of completing several sections of the document, to inform clinical considerations. We conducted a mixed-methods analysis to obtain descriptive statist...