Browse Items · Pediatric Palliative Care Library

"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancer

PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely…

"It's not about treatment, it's how to improve your life": The lived experience of occupational therapy in palliative care

OBJECTIVES: A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness…

"Safe passage": social work roles and functions in hospice care

What are social work's unique roles and functions in behalf of patients and their families in hospice care? The question is answered in the first phase of a Joint Research Project of social work faculty, hospice social workers and graduate social…

Tags: 1988, Aged, Backlog, Female, Hospices, Humans, Interprofessional Relations, Journal Article, Male, Moxley D, Professional-family Relations, Professional-patient Relations, Rusnack B, Schaefer SM, Social Work, Social Work in Health Care, Terminal Care

"We Want to Talk about Death, Dying and Grief and to Learn about End-of-Life Care"-Lessons Learned from a Multi-Center Mixed-Methods Study on Last Aid Courses for Kids and Teens

Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018,…

Tags: 2024, Adolescent, Adult, Aged, April List 2024, Article, Australia, Awareness, Bollig G, Child, Children, Curriculum, Drexler D, Dying, Education, Europe, Graf K, Grief, Gruna H, Human, Interview, literacy, Male, Palliative Therapy, Pothmann R, Questionnaire, Terminal Care

A communication strategy and brochure for relatives of patients dying in the ICU

BACKGROUND: There is a need for close communication with relatives of patients dying in the intensive care unit (ICU). We evaluated a format that included a proactive end-of-life conference and a brochure to see whether it could lessen the effects of…

A cross-sectional study on prevalence of pain and breakthrough pain among an unselected group of outpatients in a tertiary cancer clinic

PURPOSE: Systematic knowledge about the prevalence and the treatment effects of cancer pain in patients attending a general oncology outpatient department is limited. The purpose of this study was to investigate the prevalence of pain in a large…

A double-blind, crossover trial of intravenous clodronate in metastatic bone pain

After a baseline symptom and laboratory assessment, 24 patients with metastatic bone disease and pain were randomized to receive either a 4-hr intravenous infusion of 2-dichloromethylene bisphosphonate (Cl2MDP), 600 mg in 500 mL of normal saline, or…

A measure of the quality of dying and death. Initial validation using after-death interviews with family members

A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of…

A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients

The issue of symptom management at the end of life and the need to use sedation has become a controversial topic. This debate has been intensified by the suggestion that sedation may correlate with 'slow euthanasia'. The need to have more facts and…

A Multimodal Mindfulness Training to Address Mental Health Symptoms in Providers Who Care for and Interact With Children in Relation to End-of-Life Care

AIM: Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness…

A Phase I, open label, dose ranging trial of intravenous bolus zoledronic acid, a novel bisphosphonate, in cancer patients with metastatic bone disease

BACKGROUND: Bone metastases typically are associated with osteolytic bone destruction, resulting in bone pain, pathologic fractures, spinal cord compression, and hypercalcemia. Bisphosphonates are potent inhibitors of normal and pathologic bone…

A pilot study of palliative medicine fellows' hospice home visits.

This was a prospective descriptive study of hospice physician home visits (HVs) conducted by Hospice and Palliative Medicine Fellows. Our objectives were 1) to improve our knowledge of hospice care at home by describing physician HVs 2) to identify…

A randomized comparison of patients' understanding of number needed to treat and other common risk reduction formats

BACKGROUND: Commentators have suggested that patients may understand quantitative information about treatment benefits better when they are presented as numbers needed to treat (NNT) rather than as absolute or relative risk reductions. OBJECTIVE: To…

Tags: 2003, 80 And Over, Aged, Backlog, Comprehension, Cross-sectional Studies, Data Interpretation, Female, Humans, Journal Article, Journal Of General Internal Medicine, Lewis CL, Male, Middle Aged, Pignone MP, Risk, Sheridan SL, statistical, Treatment Outcome

A randomized, controlled trial of intravenous clodronate in patients with metastatic bone disease and pain

To evaluate the effectiveness of intravenous clodronate in ameliorating refractory bone pain in patients with metastatic bone disease, 60 patients with established osseous metastases and persistent bone pain were randomized to receive either…

A short form of the Posttraumatic Growth Inventory

A short form of the Posttraumatic Growth Inventory (PTGI-SF) is described. A sample of 1351 adults who had completed the Posttraumatic Growth Inventory (PTGI) in previous studies provided the basis for item selection. The resulting 10-item form…

A theory of healing in the aftermath of youth suicide. Implications for holistic nursing practice

The purpose of this family-focused, grounded-theory study was to develop a substantive theory that explains how individual family members heal in the aftermath of youth suicide. Individual healing following youth suicide is conceptualized as a…

Active and passive coping strategies in chronic pain patients

This study assessed the validity of active and passive coping dimensions in chronic pain patients (n = 76) using the Coping Strategies Questionnaire and the Vanderbilt Pain Management Inventory. The validity of active and passive coping dimensions…

Adaptational process of parents of pediatric oncology patients

This study, based on grounded theory, explores the adaptational process of parents of pediatric oncology patients. Thirty-two Taiwanese parents (26 mothers and 6 fathers) were interviewed. Data were collected through individual in-depth and focus…

Adjustment to chronic pain: the role of pain acceptance, coping strategies, and pain-related cognitions

BACKGROUND: Previous research has found that acceptance of pain is more successful than coping variables in predicting adjustment to pain. PURPOSE: To compare the influence of acceptance, pain-related cognitions and coping in adjustment to chronic…

Advance directives and do-not-resuscitate orders in patients with cancer with metastatic spinal cord compression: advanced care planning implications.

OBJECTIVES: Communication about end-of-life decisions is crucial. Although patients with metastatic spinal cord compression (MSCC) have a median survival time of 3 to 6 months, few data are available concerning the presence of advance directives and…

Advanced illness index: Predictive modeling to stratify elders using self-report data

OBJECTIVES: Develop a prediction model to identify persons who have an increased risk of dying within the next 36 months, in order to focus additional resources and assessment in areas related to advanced care planning. DESIGN: Retrospective study…

Adverse events in hospice and palliative care: a pilot study to determine feasibility of collection and baseline rates

BACKGROUND: Continuous quality improvement is fundamental in all health care, including hospice and palliative care. Identifying and systematically reducing symptomatic adverse events is limited in hospice and palliative care because these events are…

Age-related changes of beta-endorphin and cholecystokinin in human and rat mononuclear cells

Beta-endorphin (BE) and cholecystokinin (CCK) were measured in fresh PBMC isolated from human subjects and rats. The BE and CCK PBMC contents increased significantly with age both in human and rat models. Moreover, polyclonal stimulation induced a…

An advance directive in two questions.

It has been two decades since advance directives have become an integral part of health care. Impediments to their optimal usage are common and multifactorial. Decisions commonly have to be made when patients are unable to do so or choose not to…

An alternative in terminal care: results of the National Hospice Study

Hospice is a program of supportive services for terminally ill patients and their families, provided either at home or in designated inpatient settings, which is purported to improve patient and family quality of life at lower cost than conventional…

An assessment of gender differences in the perception of benefit resulting from the loss of a child.

The current study focused on a sample of adults (N = 67) experiencing bereavement following the loss of a child. The Post Traumatic Growth Inventory (PTGI) was used to assess whether bereaved parents were able to perceive benefit from their trauma,…

An international/multicentre report on patients with cystic fibrosis (CF) over the age of 40 years

BACKGROUND: The lifespan of patients with cystic fibrosis (CF) is increasing significantly. The objective of this international pilot study was to study the characteristics of these long-term survivors. METHODS: Four centres with large CF clinics…

An Order Protocol For Respiratory Distress/acute Pain Crisis In Pediatric Palliative Care Patients: Medical And Nursing Staff Perceptions

BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family,…

An overview of contemporary social work practice in palliative care.

Analgesic effects of topical methadone: a report of four cases

Topical morphine has been used on open wounds for pain management, but has a variable duration of action not suitable for palliative dressing changes. The objective of this study is to find an opioid and delivery method that would provide…

Anxiety and depression in parents 4-9 years after the loss of a child owing to a malignancy: a population-based follow-up.

BACKGROUND: Some consider the loss of a child as the most stressful life event. When the death is caused by a malignancy, the parents are commonly exposed not only to their own loss, but also to the protracted physical and emotional suffering of the…

Assessing the clinical importance of symptomatic improvements. An illustration in rheumatology

OBJECTIVE: To estimate when a difference in disability symptoms is sufficiently large to be important to individual patients. DESIGN: Cross-sectional analysis of two groups: derivation set (n = 46) and validation set (n = 57). SETTING: The Arthritis…

Association between opioid prescribing patterns and opioid overdose-related deaths

CONTEXT: The rate of prescription opioid-related overdose death increased substantially in the United States over the past decade. Patterns of opioid prescribing may be related to risk of overdose mortality. OBJECTIVE: To examine the association of…

At the crossroads: making the transition to hospice

OBJECTIVE: Previous studies reveal that many terminally ill patients never receive hospice care. Among those who do receive hospice, many enroll very close to the time of death. Nationally, between 1992 and 1998, the median length of stay at hospice…

Beta-endorphin, Met-enkephalin and corresponding opioid receptors within synovium of patients with joint trauma, osteoarthritis and rheumatoid arthritis

OBJECTIVE: Intra-articularly applied opioid agonists or antagonists modulate pain after knee surgery and in chronic arthritis. Therefore, the expression of beta-endorphin (END), Met-enkephalin (ENK), and mu and delta opioid receptors (ORs) within…

Bisphosphonates: from grandparents to grandchildren

Bisphosphonates are synthetic analogues of pyrophosphate that inhibit bone resorption by their action on osteoclasts. Bisphosphonates have been extensively used in the elderly with primary and secondary osteoporosis, Paget's disease, and…

Body composition in cachexia resulting from malignant and non-malignant diseases

The body composition of 23 patients with cachexia resulting from malignant or benign inflammatory disease was studied. Skinfold thickness and radioisotope tracer measurements enabled us to estimate total body fat, lean body mass, the ratio of fat…

Brain and gut neuropeptides in peripheral blood mononuclear cells

Neuropeptides, initially thought to be common features of gut and brain, are only synthesized in immune cells and modulate immune functions. The presence and possible functions of these peptides in immune cells in both physiological or pathological…

Breast cancer patients' attitudes about rationing postlumpectomy radiation therapy: applicability of trade-off methods to policy-making

PURPOSE: Along with evidence, clinical policies must take patients' values into account. Particularly where evidence is limited and where assumptions of utility-maximizing behavior may not be valid, new methods such as trade-off techniques (TOTs),…

Care for patients in the last months of life: the Belgian Sentinel Network Monitoring End-of-Life Care study

BACKGROUND: Population-based studies monitoring end-of-life care are lacking. This study describes involvement of caregivers, access to specialist palliative care, treatment goals (cure, life-prolonging, or palliation), and content of end-of-life…

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