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The association of compassion with dignity and symptoms in end-of-life cancer patients Palliat. Support. Care (IF 1.9) Pub Date : 2024-09-18 Andrea Bovero, Irene Di Girolamo, Rossana Botto, Giuliano Carlo Geminiani
Objectives Compassion is essential in palliative care; however, there is a lack of evidence of the association between this construct and patients’ dignity-related distress. The present study aimed to investigate the association between end-of-life cancer patients’ sense of dignity, the level of compassion of the healthcare professionals (HCPs) noticed and perceived by the patients, and levels of compassion
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Bereavement guilt among young adults impacted by caregivers’ cancer: Associations with attachment style, experiential avoidance, and psychological flexibility Palliat. Support. Care (IF 1.9) Pub Date : 2024-09-16 Madeleine Stone, Fiona E. J. McDonald, Maria Kangas, Kerry Sherman, Kimberley R. Allison
Objectives This paper focuses on the experiences of bereavement guilt among young adults bereaved by a caregiver’s cancer, examining associations with attachment style, experiential avoidance, and psychological flexibility with the aim of informing psychosocial interventions for this population.Methods Ninety-seven young adults (18–25 years) bereaved by a parent/guardian’s cancer completed an online
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Gratitude in struggle: A heart that moves. Palliat. Support. Care (IF 1.9) Pub Date : 2024-09-09 Erfan Ramadhani
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Receiving and adjusting to a diagnosis of ALS: A qualitative study with informal caregivers Palliat. Support. Care (IF 1.9) Pub Date : 2024-09-09 Luzia M. Iseli, Christopher Poppe, Tenzin Wangmo
Objectives Diagnosis of amyotrophic lateral sclerosis (ALS) takes more than 1year from detection of first symptoms. The paper seeks to understand the ALS diagnostic process and adjustment from the perspective of informal caregivers. Methods The data stems from an interview study with 9 current and 13 bereaved informal caregivers of people with ALS in Switzerland. The interviews were analyzed using
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Spiritual care interventions for palliative care patients: A scoping review Palliat. Support. Care (IF 1.9) Pub Date : 2024-08-13 Paula Jaman-Mewes, Mayara Caetano da Silva de Oliveira, Marcia Regina Mazotti, Marina de Goés Salvetti
Objectives To identify and map spiritual care interventions to address spiritual needs and alleviate suffering of patients in the context of palliative care. Methods A scoping review using the PRISMA ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) checklist was conducted according to the JBI (Joanna Briggs Institute) guidelines. The search was
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The need for integration of emotional intelligence and spirituality training in medical and nursing education curriculum. Palliat. Support. Care (IF 1.9) Pub Date : 2024-07-19 Lena Marianti,Rikas Saputra,Kadek Suhardita,Paramita Nuraini
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Identifying the active content of interventions targeting the psychological well-being of carers of people with motor neuron disease: A systematic review Palliat. Support. Care (IF 1.9) Pub Date : 2024-06-03 Paul Cafarella, Tanja Effing, Anna Chur-Hansen
Objectives The primary aim of this research was to use a taxonomy of behavior change techniques (BCTTv1) to identify, map, and describe the active components of intervention and comparator groups in studies evaluating the psychological well-being (PWB) of motor neuron disease (MND) carers. Secondary aims were to (a) identify absent active ingredients and (b) explore whether variability in the effectiveness
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Increasing the scope of virtual reality in palliative care: Insights and future directions. Palliat. Support. Care (IF 1.9) Pub Date : 2024-06-03 Lena Marianti,Rikas Saputra,Arizona,Siti Arifah,Hartika Utami Fitri,Bela Janare Putra
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COPD patients' accessibility to palliative care: Current challenges and opportunities for improvement. Palliat. Support. Care (IF 1.9) Pub Date : 2024-06-01 Barbara Gonçalves,Eileen Harkess-Murphy,Audrey Cund,Caroline Sime,Joanne Lusher
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A commentary on "Spirituality is 'sometimes just a hug': A conceptual analysis from the perspective of nursing students" (Piret Paal et al, 2023). Palliat. Support. Care (IF 1.9) Pub Date : 2024-06-01 Sara Sitefane,Ana Afonso,Revital Shapira,Isabel Rabiais,Sílvia Caldeira
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Positive psychology interventions in palliative care: Cui bono? Palliat. Support. Care (IF 1.9) Pub Date : 2024-06-01 Friedrich Stiefel,Céline Bourquin,Laurent Michaud
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The masterpiece that once was you. Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-22 Alexis E Ivec
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Perceived organizational support moderates the effect of job demands on outcomes: Testing the JD-R model in Italian oncology nurses Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-20 Tiziana Ramaci, Giuseppe Santisi, Krizia Curatolo, Massimiliano Barattucci
Objectives The research aimed to test the job demands-resources (JD-R) model on a sample of Italian oncology workers, and the role of perceived organizational support (POS) as a moderator of the effects of JD on outcomes (job satisfaction and burnout [BO]). Methods Based on the JD-R model, a correlational study was designed to investigate the relationships between JD, POS as a job resource, self-esteem
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What makes advance care planning discussion so difficult? A systematic review of the factors of advance care planning in healthcare settings Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-20 Margaret Hay Ping Suen, Amy Yin Man Chow, Raymond Kam Wing Woo, Sze Kit Yuen
Objectives Existing systematic reviews related to advance care planning (ACP) largely focus on specific groups and intervention efficacy or are limited to contextual factors. This research aims to identify the modifiable factors perceived by different users of ACP in healthcare settings and inform healthcare professionals about the factors affecting ACP practice. Methods Five English-language databases
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Healthcare chaplains’ perspectives on working with culturally diverse patients and families Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-16 So Hyeon Bang, Hyunjin Noh, George Handzo, Paul Galchutt, Jung Kwak
Objectives Considering the ethnic, racial, and cultural diversity in the U.S., we aim to explore the experiences of healthcare chaplains as they provide culturally sensitive care to diverse patients and their families. Methods This is a qualitative study. Individual interviews were conducted with 14 healthcare chaplains recruited from 3 U.S. chaplaincy organizations. Results Thematic analysis with
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The effect of social support on the emotional well-being of people with amyotrophic lateral sclerosis: Exploring the mediating role of spirituality Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-15 Anne Fernandez, Léo Guenegou, Philippe Corcia, Nathalie Bailly
Objectives Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that, so far, is considered always fatal. Treatments mainly consist in increasing survival and aim to improve the quality of life of people with ALS (pwALS). Social support and spirituality have been shown to play a key role in pwALS’ quality of life. Our study explored it in depth by investigating the underlying
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Validation of the Mexican version of the EORTC QLQ-CR29 in patients with colorectal cancer Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-15 Jazmín Hernández-Marín, Oscar Galindo-Vázquez, German Calderillo-Ruíz, Patricia Ortega-Andeane, Tania Estapé, Xolyanetzin Montero-Pardo, Erika Ruíz-García, Marytere Herrera-Martínez, Abelardo Meneses-García
Background The evaluation of the quality of life (QoL) of patients with colorectal cancer (CRC) is an essential measure to measure the impact of the disease and treatments on the lives of patients. However, in Latin America there is no validated and reliable instrument to assess this construct. Objectives This study aims to validate the EORTC QLQ-CR29 instrument in the Mexican population with CRC.
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"Rapid counseling" with single-session music therapy in the workplace: An alternative treatment in increasing the constructiveness of destructive bystanders that promote resilience for caregivers. Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-13 Dominikus David Biondi Situmorang
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Economic burden on families: Analyzing the financial impact of palliative care for cancer patients. Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-13 Rikas Saputra,Setyorini,Erfan Ramadhani,Palasara Brahmani Laras,Kadek Suhardita,Santy Andrianie
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A commentary on "What can cause cancer patients to attempt suicide? Thiamine deficiency mimicking the symptoms of major depressive disorder". Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-13 Yosra Vaez-Gharamaleki,Mohammad-Salar Hosseini
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Advanced parental cancer and adolescents: Parenting issues and challenges Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-13 Thepthara N. Pholsena, Frances Marcus Lewis, Farya Phillips, Elizabeth T. Loggers, Mary Rose Yockel, Ellen H. Zahlis, Mary Ellen Shands
Background An estimated 609,820 child-rearing adults in 2023 died from advanced cancer, affecting 153,675 dependent children. Although children are known to suffer significant distress when a parent is diagnosed with cancer, few studies have described parents’ views of their adolescent’s behavioral response to their advanced cancer or what the parent did to interpret or manage that response. Objectives
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Dignity-related distress and recall among alert, non-delirious critically ill patients Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-13 Rachel A. Hadler, Seth Weeks, Yifan He, Mony Fraer, Franklin Dexter
Objectives Critical illness is associated with multiple undesired impacts, including residual psychological distress, frequently associated with recollections of critical illness. Dignity-related distress is highly prevalent among the one-fifth of critically ill patients who are alert. The distress may be associated with unpleasant recollections of care. We examined whether patients at risk for dignity-related
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Factors associated with family decision-making self-efficacy among family members of patients with advanced cancer in mainland China Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-13 Yangfan Hu, Wenxia Wang, Yali Jiang, Xixi Wang, Xuelan Peng, Mingzhu Xin, Juanjuan Zhao
Objectives In Chinese culture, family members are the main decision maker on end-of-life (EoL) issues for patients with advanced cancer. Yet little is known about Chinese families’ confidence in making EoL decisions and its associated factors. This study aims to investigate the status and associated factors of Chinese family members’ confidence in making EoL decisions for patients with advanced cancer
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Online palliative care education and mentorship in Nepal: Project ECHO – a novel approach to improving knowledge and self-efficacy among interprofessional health-care providers Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-13 Christian Mackin, Deepak Sundar Shrestha, Danielle Downe, Megan Doherty
Background Palliative care access in Nepal is severely limited, with few health-care providers having training and skills to pain management and other key aspects of palliative care. Online education suggests an innovation to increase access to training and mentoring, which addresses common learning barriers in low- and middle-income countries. Project ECHO (Extensions for Community Health Care Outcomes)
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Using Project ECHO to deliver a tele-mentoring and teaching program on palliative care in South Asia: Interpretive description of participants’ experiences with a community of practice for learning Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-13 Megan Doherty, Qabirul Karan Abdullah
Objectives To explore the learning experiences of participants (learners and teachers), in a yearlong tele-teaching and mentoring program on pediatric palliative care, which was conducted using the Project ECHO (Extension for Community Healthcare Outcomes) model and consisted of 27 teaching and clinical case discussion sessions for palliative medicine residents in India and Bangladesh. The goal of
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Ketamine subcutaneous continuous infusion for depressive symptoms at home: A case report beyond pain use Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-06 Carolina Simões, Miguel Julião, Patrícia Calaveiras, Paula Câmara, Teresa Santos
Objectives Ketamine has been widely used in refractory pain as an opioid adjuvant. Evidence suggests that ketamine can also have an essential role in easing depressive symptoms. Its rapid onset of action makes it a valuable choice in palliative care. Methods We present a case of a 70-year-old man with stage IV renal carcinoma and bone metastasis. The main symptoms included neuropathic pain, depression
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Journey through labor: Navigating the psychosocial and spiritual depths of palliative care. Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-02 Rizky Andana Pohan,Ririn Dwi Astuti
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The winner who dies with honor! Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-02 Dominikus David Biondi Situmorang
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I die as a fighter, rather than living as a quitter. Palliat. Support. Care (IF 1.9) Pub Date : 2024-05-02 Dominikus David Biondi Situmorang
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Communicating visit information to family caregivers: How does method matter? A national survey Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-24 Reed W.R. Bratches, Noah Z. Freundlich, J. Nicholas Odom, A. James O’Malley, Paul J. Barr
Objectives The clinic visit is a critical point of contact for family caregivers. However, only 37% of family caregivers are able to accompany patients to visits. When they cannot attend, caregivers receive visit information to assist with their caregiving. However, little is known about how method of receiving information from clinic visits is associated with important caregiver outcomes. This study
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Meta-synthesis of ethnic minority families’ experiences of children’s palliative care across developed countries Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-24 Adaobi C. Iluno, Michael J. Tatterton, Melanie Haith-Cooper
Objectives Meeting the needs of people accessing healthcare from ethnic minority (EM) groups is of great importance. An insight into their experience is needed to improve healthcare providers’ ability to align their support with the perspectives and needs of families. This review provides insight into how families from EM backgrounds experience children’s palliative care (CPC) by answering the question
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Oncology social workers’ involvement in palliative care: Secondary data analysis from nationwide oncology social workers survey Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-24 Ting Guan, Karlynn BrintzenhofeSzoc, Alyssa Middleton, Shirley Otis-Green, Tara Schapmire, Makeeta Rayton, Krista Nelson, Michael L. Grignon, Brad Zebrack
Objectives Social workers are vital in delivering psychosocial services in palliative care, yet their specific roles in palliative oncology remain undefined. This study aimed to delineate the current practice role of oncology social workers involvement in palliative care in the United States. Methods This study utilized a cross-sectional design and involved secondary analysis of data from a nationwide
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Integration of the geriatric palliative care in oncological care of elderly patient with cancer Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-15 Josafat Napoleón Sánchez-Dávila, Emma L. Verástegui, Adriana Peña-Nieves, Silvia Rosa Allende-Pérez
Objectives The objective of this article is to describe the profile of the population attended to by the palliative geriatrics clinic and to evaluate the symptomatic control derived from the care provided. Methods During 2017 a model based on a holistic approach was implemented, in this model the team geriatric palliative care plays a fundamental role by being part of the palliative care team and functioning
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The effects of virtual reality interventions on occupational participation and distress from symptoms in palliative care patients: A pilot study Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-12 Julian Corvin, Zara Hoskinson, Beth Mozolic-Staunton, Laetitia Hattingh, Russell Plumbridge-Jones
Background Virtual reality (VR) offers the prospect of a safe and effective adjunct therapeutic modality to promote mental health and reduce distress from symptoms in palliative care patients. Common physiological and psychological symptoms experienced at the end of life may impact the person’s participation in day-to-day activities that bring them meaning. The purpose of this study was to examine
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Patient altruism at the end of life: A scoping review Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-12 Anca-Cristina Sterie, Gian Domenico Borasio, Michael J. Deml, Claudia Gamondi, Ralf J. Jox, Philip Larkin, Alexia Trombert, Eve Rubli Truchard, Mathieu Bernard
Objectives The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in
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Social capital in the management of breast cancer in Lagos, Nigeria Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-11 Samuel Ojima Adejoh, Peter Osazuwa, Oluwakemi Tinuolaoluwa Oyelowo, Maria Oyalowo Odey, Titi Tade
Purpose Breast cancer is the most common cancer in women worldwide, necessitating substantial social support during diagnosis and treatment. This study examines the role of social capital in breast cancer management, focusing on the experiences of patients. Objectives The objective of the study was to explore the role of social capital in breast cancer management among women living with breast cancer
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Positive psychology and palliative care: A call for an integrative approach. Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-08 Mathieu Bernard,Maria Arantzamendi
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The Sign - Carolling in the Oncology Ward. Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-08 Grace Tin Yan Lam
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"Hospital, hospice, or home: A scoping review of the importance of place in pediatric palliative care": A reflection from clinical practice. Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-08 David de Sousa Loura,Maria Adelaide Pereira,Maria João Martins,Zaida Charepe,Joana Romeiro
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Exploring unmet concerns in home hospice cancer care: Perspectives of patients, informal caregivers, palliative care providers, and family physicians Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-08 Eran Ben-Arye, Noah Samuels, Yael Keshet, Miri Golan, Erez Baruch, Jamal Dagash
Objectives The study examines perspectives of patients in home hospice care; their informal caregivers; palliative health-care providers (HCPs); and family physicians, all regarding patients’ unmet needs and quality of life (QoL)-related concerns. Methods Participants from all 4 groups were approached within 2 months after the patient’s admission to the home hospice care unit. Participants completed
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How do enrollees feel about support in Big Hospices? – The caregiver experience of emotional, spiritual, and bereavement support by profit status among large US providers Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-08 Jason T. Hotchkiss, Emily Ridderman, Brendan T. Hotchkiss
Objectives Recent findings narrate profiteering detrimentally impacting hospice care quality. However, no study has examined the caregiver experience of emotional and spiritual support expressed online. The purpose was to evaluate the hospice caregiver’s experience of emotional, spiritual, and bereavement support and whether the care was respectful and compassionate to the care unit. Methods Retrospective
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Translation and validation of the Chinese version of Palliative Care Self-Efficacy Scale Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-08 Junchen Guo, Yongyi Chen, Boyong Shen, Wei Peng, Lianjun Wang, Yunyun Dai
Objectives Accurately assessing the self-efficacy levels of palliative care professionals’ is crucial, as low levels of self-efficacy may contribute to the suboptimal provision of palliative care. However, there is currently lacking a reliable and valid instrument for evaluating the self-efficacy of palliative care practitioners in China. Therefore, this study aimed to translate, adapt, and validate
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“You’re the only thing he comes out [of his room] for”: A qualitative study of engagement between Laughter Care Specialists and families of people with dementia in long-term care Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-08 Michelle DiGiacomo, Sara-Jane Roberts, Tim Luckett, David Symons, Georgia Ellis, Slavica Kochovska, Tony Warner, David C. Currow, Deborah Parker, Karey Payne, Meera R. Agar
Objectives Family involvement in the lives of people who have dementia and live in long-term care is important, but family members may face challenges communicating and connecting with their loved one as dementia progresses. A type of therapeutic humor (Laughter Care) delivered by trained specialists aims to engage people with dementia who reside in long-term care through creative play and laughter
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Tongue edema as an adverse drug reaction to low-dose olanzapine in a cancer patient receiving palliative care Palliat. Support. Care (IF 1.9) Pub Date : 2024-04-02 Matteo Moroni, Eduardo Bruera
Objectives Olanzapine is an atypical neuroleptic indicated for treatment of various psychiatric disorders, but it has also several indications in palliative care (PC) patients: opioids misuse, nausea not related to chemotherapy, anorexia-cachexia syndrome, and sleep and mood disorders. Peripheral and facial edema are a rare side effect of the treatment with olanzapine. I report a case of an advanced
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Dying at home: What is needed? Findings from a nationwide retrospective cross-sectional online survey of bereaved people in Germany Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-27 Alina Kasdorf, Raymond Voltz, Julia Strupp
Objectives According to the “Last Year of Life in Cologne” study, 68% of patients with a serious and terminal illness wanted to die at home, but 42% died in hospital. Only 1 in 5 died at home. Most people want to spend their last days and hours at home, but the reality is that this is not always possible. Recommendations are needed on how best to support families to enable people to die at home – if
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Effects of prognostic communication strategies on emotions, coping, and appreciation of consultations: An experimental study in advanced cancer Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-27 Naomi C.A. van der Velden, Ellen M.A. Smets, Liesbeth M. van Vliet, Linda Brom, Hanneke W.M. van Laarhoven, Inge Henselmans
Objectives We aimed to investigate effects of prognostic communication strategies on emotions, coping, and appreciation of consultations in advanced cancer. Methods For this experimental study, we created 8 videos of a scripted oncological consultation, only varying in prognostic communication strategies. Disease-naive individuals (n = 1036) completed surveys before and after watching 1 video, while
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Mourning in the time of coronavirus: Examining how grief differs in those who lost loved ones to COVID-19 vs. natural causes in Iran Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-27 Hajar Aliyaki, Fereshteh Momeni, Behrouz Dolatshahi, Samaneh Hosseinzadeh, Shahab Yousefi, Fatemeh Abdoli
Objectives Our study aimed to analyze and compare the grief experiences of individuals in Iran who lost family members to COVID-19 and those who lost loved ones to other natural causes. Methods In this study, telephone interviews were conducted with 640 first-degree relatives, and finally, a total of 395 people remained in the research. Participants answered the Prolonged Grief Questionnaire (PG-13-R)
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Validation of the Spanish translation Sheffield Profile for Assessment and Referral for Care (SPARC-Sp) at the Hospital Universitario San Jose of Popayan, Colombia Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-27 Cindy V. Mendieta, Jose A. Calvache, Martín A. Rondón, Carlos Javier Rincón-Rodríguez, Sam H. Ahmedzai, Esther de Vries
Objectives We determined the validity and reliability of the Spanish translation Sheffield Profile for Assessment and Referral for Care (SPARC-Sp) questionnaire to identify the palliative care (PC) needs of patients with chronic noncommunicable diseases (NCDs) in Colombia. Methods We developed a cross-sectional observational study of scale assessment in adults with the aim of determining the validity
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Thiamine deficiency as a cause of anorexia in terminally ill cancer patients: A case of possible gastrointestinal beriberi Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-20 Eriko Hayashi, Tetsuya Matuura, Junko Takano, Kaori Morofushi, Kaori Toriizuka, Hideki Onishi
Objectives Anorexia in cancer patients has a variety of causes and impairs patients’ quality of life. However, there have been few reports of thiamine deficiency (TD) playing a role in anorexia during palliative care. The objective of this report was to describe such a case. Methods An 82-year-old woman with advanced cervical cancer was admitted for palliative care because of progressive disease. One
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A commentary on "'What it is like to be human': The existential dimension of care as perceived by professionals caring for people approaching death" (Bäckersten et al., 2023). Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-14 Ana Carolina da Rocha Monteiro
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Development of the pediatric family-based dignity therapy protocol for terminally ill children (ages 7–18) and their families: A mixed-methods study Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-14 Junyi Lin, Qiaohong Guo, Xuan Zhou, Huijun Li, Siyu Cai
Objectives Dignity therapy (DT) is well-established in adults, and it might potentially benefit the younger population. This study aims to develop a pediatric family-based dignity therapy (P-FBDT) protocol for terminally ill children and their families. Methods A parallel mixed-methods design was used. The P-FBDT protocol was developed based on the adult DT, and meanwhile by taking children-specific
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From patient-reported outcomes (PROs) to family-reported outcomes (FROs): Acceptability and perceived usefulness of routine screening in cancer care Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-14 Sylvie Lambert, Katya Loban, Anne-Sophie Gignac, Mona Magalhaes, Lydia Ould Brahim, Sarah Chehayeb, Sydney Wasserman
Objectives To explore the acceptability of screening for family-reported outcomes (FROs) among cancer caregivers (unpaid family members or friends who provide support to patients with cancer) and identify from their perspective the key components of a FRO screening program. Methods Using a qualitative descriptive design, semi-structured interviews were undertaken with 23 adult caregivers of people
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In-hospital psychoeducation for family caregivers of Nigerian children with cancer (The RESCUE Study) Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-14 Tonia Chinyelu Onyeka, Ifeoma Emodi, Alhassan Datti Mohammed, Akinyemi Olugbenga Ofakunrin, Adewumi Alabi, Justus Uchenna Onu, Nneka Iloanusi, Jude Ohaeri, Agnes Anarado, Musa Usman Umar, Gbenro Olukiran, Anthonia Sowunmi, Adeseye Akinsete, Bolanle Adegboyega, Ijeoma Nkemdilim Chibuzo, Olamijulo Fatiregun, Shehu Umar Abdullah, Mahmoud Jahun Gambo, Mohammad Aminu Mohammad, Fawaz Babandi, Mary Bok, Joyce
Objectives High levels of caregiver burden (CB) are experienced by informal caregivers of pediatric patients with cancer. There is increasing evidence highlighting the extent of CB across sub-Saharan African countries, although there remains lack of interventions that target improvements in their experience. This study aimed to determine the impact of a structured psychoeducation program on caregivers’
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A pilot study to evaluate the feasibility and potential effectiveness of an early palliative care model: “Educate, Nurture, Advise, Before Life Ends for Singapore” Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-14 Grace Meijuan Yang, Dawn Koh, Neela Natesan, Jess Ng, J. Nicholas Odom, Marie Bakitas
Objective The main objective was to pilot the culturally adapted “Educate, Nurture, Advise, Before Life Ends” for Singapore (ENABLE-SG) model to evaluate its feasibility and potential effectiveness. Methods A single-arm pilot trial of ENABLE-SG among patients with advanced solid tumors and caregivers of these patients was conducted in the outpatient oncology clinic setting. Enrolled participants participated
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Virtual reality and neurofeedback as a supportive approach to managing cancer symptoms for patients receiving treatment: A brief report of a feasibility trial Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-08 Abigail J. Rolbiecki, Brett Froeliger, Jamie Smith, Jun Ying, Shannon Canfield, Kayla Posley, Megan Polniak, Dana Dotson
Objectives Managing cancer symptoms while patients receive systemic treatment remains a challenge in oncology. The use of complementary and alternative medicine (CAM) approaches like virtual reality (VR) and neurofeedback (NF) in tandem with systemic treatment might reduce symptom burden for patients. The combination of VR + NF as a CAM intervention approach is novel and understudied, particularly
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The association of prognostic awareness with quality of life, spiritual well-being, psychological distress, and pain severity in patients with advanced cancer: Results from the APPROACH Study in Indonesia Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-07 Rudi Putranto, Hamzah Shatri, Cosphiadi Irawan, Soehartati Gondhowiardjo, Eric Finkelstein, Chetna Malhotra, Semra Ozdemir, Irene Teo, Grace Meijuan Yang
Background and objectives Advanced cancer patients’ understanding of their illness is key for making informed treatment decisions. Despite the known importance of patients’ awareness of their disease prognosis, it is debatable whether this awareness is positively, negatively, or not associated with clinical and psychological outcomes among patients with advanced cancer. This paper aims to determine
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Experiences with health information among caregivers of people with cancer from culturally and linguistically diverse backgrounds: A qualitative study Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-07 Eva Y.N. Yuen, Megan Hale, Carlene Wilson
Objectives Although some research suggests that caregivers from culturally and linguistically diverse (CALD) communities have higher unmet information needs compared to their English-speaking counterparts, few studies have examined determinants of information needs among CALD cancer caregivers and their satisfaction with received information. This study aimed to explore experiences with cancer-related
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Social support among chronically ill adolescent and young adult patients using a hospital-based online health community as part of a palliative care program: A qualitative study Palliat. Support. Care (IF 1.9) Pub Date : 2024-03-07 Kelsea LeBeau, Jayne-Marie Raponi, Drew Walker, Anna Swygert, Emily Marchi
Objectives Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial support/palliative care, increasing their risk for negative psychosocial outcomes. Online health communities (OHCs) have been recommended for AYAs as part of palliative care support programs; however, we lack research investigating palliative care programs targeting AYAs’ psychosocial