Browse Items · Pediatric Palliative Care Library

Physical functioning in female caregivers of children with physical disabilities compared with female caregivers of children with a chronic medical condition

OBJECTIVES: To evaluate if physical functioning is different in female caregivers of children with physical disabilities compared with female caregivers of children with nondisabling medical illnesses, and to investigate the factors associated with…

Effect of sublingual application of cannabinoids on intraocular pressure: a pilot study

PURPOSE: The purpose of this study was to assess the effect on intraocular pressure (IOP) and the safety and tolerability of oromucosal administration of a low dose of delta-9-tetrahydrocannabinol (Delta-9-THC) and cannabidiol (CBD). PATIENTS AND…

Pediatricians' attitudes affecting decision-making in defective newborns

A questionnaire designed to identify the factors that influence the resolution of ethical dilemmas was returned by 230 (57% of the total) Massachusetts pediatricians. The decision to recommend surgery for an infant with Down's syndrome with duodenal…

Place of death: preferences among cancer patients and their carers

The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the…

Perceptions Of The Pediatric Hospice Experience Among English- And Spanish-speaking Families

OBJECTIVE:
Many children who die are eligible for hospice enrollment but little is known about parental perceptions of the hospice experience, the benefits, and disappointments. The objective of this study was to explore parental perspectives of the…

Shutting the World Out': An Interpretative Phenomenological Analysis Exploring the Paternal Experience of Parenting a Young Adult with a Developmental Disability.

BACKGROUND: An in-depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19-32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10)., METHOD: Five fathers…

Tags: *Adult Children, *Developmental Disabilities, *Fathers/px [Psychology], *Parenting/px [Psychology], 2018, 2023 SE4 - Parent Perspectives, Adult, Eatough, Virginia, Humans, Journal Of Applied Research In Intellectual Disabilities, Male, Middle Aged, Qualitative Research, Thackeray, Lisa A, Young Adult

Referring a patient and family to high-quality palliative care at the close of life: "We met a new personality... with this level of compassion and empathy"

Palliative care services are increasingly available to primary care physicians for both expert consultations and services to seriously ill patients. The United States now has more than 1400 hospital-based palliative care teams and more than 4700…

Tags: 2009, Backlog, Connor SR, Empathy, Family Relations, Hospices, Humans, Journal Article, Journal Of The American Medical Association, Male, Middle Aged, Neoplasms, Palliative Care/standards, Patient Care Team, Primary Health Care, Quality Of Health Care, Referral And Consultation, Social Support, Teno JM

Early palliative care for patients with metastatic non-small-cell lung cancer

BACKGROUND: Patients with metastatic non-small-cell lung cancer have a substantial symptom burden and may receive aggressive care at the end of life. We examined the effect of introducing palliative care early after diagnosis on patient-reported…

Toward family-centered inpatient medical care: The role of parents as participants in medical decisions.

OBJECTIVES: To determine parental participation in medical decision-making (MDM) during hospitalization and its association with parental self-efficacy and to explore other factors associated with participation. STUDY DESIGN: We surveyed parents of…

Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy.

OBJECTIVE: To assess the benefit of proactive palliative medicine consultation for delineation of goals of care and quality-of-life preferences before implantation of left ventricular assist devices as destination therapy (DT)., PATIENTS AND METHODS:…

Guidelines for an acceptable euthanasia procedure

The Netherlands is one of the very few countries that has guidelines for the practice of euthanasia. Each year there are about 9700 explicit requests for euthanasia or physician-assisted suicide (EAS), of which approximately 3600 patients are agreed…

How adult specialists deal with the principles of a successful transition

OBJECTIVES: To evaluate whether adult specialists comply with the basic principles for a successful transition of adolescents with chronic disorders, and to determine whether the characteristics of the adult specialists have an influence on applying…

HIV/AIDS symptom management in Southern Africa

We describe self-reported strategies used by persons living with HIV/AIDS in Botswana, Lesotho, South Africa, and Swaziland to manage common HIV-related symptoms. A questionnaire asked participants to list three to six symptoms they had recently…

Conflict in the care of patients with prolonged stay in the ICU: types, sources, and predictors

OBJECTIVE: To determine types, sources, and predictors of conflicts among patients with prolonged stay in the ICU. DESIGN AND SETTING: We prospectively identified conflicts by interviewing treating physicians and nurses at two stages during the…

Paediatric Palliative Care: A Survey Of Paediatricians And Family Practitioners

BACKGROUND: Paediatric palliative care focuses on the enhancement of the quality of life for a child and family through a combination of active and compassionate therapies intended to comfort and support the child and family who are living with a…

Experience in the use of the palliative care outcome scale.

GOALS OF WORK: The objective of the study is to assess the Palliative Care Outcome Scale (POS) as a potential audit tool within a specialist cancer centre. It also aims to answer the following questions: does the tool identify problem areas and…

Sources of stress for family caregivers of institutionalized dementia patients

Although many caregivers place their relative in a nursing home in an attempt to reduce their own burden, caregiving stress often continues after institutionalization. This research examined sources of stress for 66 caregivers who cared for their…

Stressors and well-being among caregivers to older adults with dementia: the in-home versus nursing home experience

We examined differences in stressors and well-being for caregivers who care for a relative with dementia at home and those who had placed their relative in a nursing home. The groups did not differ in depression or somatic complaints, but nursing…

Local analgesic effect of endogenous opioid peptides

Opioids produce analgesia by interacting with local opioid receptors in peripheral inflamed tissue. This study investigated whether endogenous ligands of these receptors are present in synovia and whether such opioid peptides can inhibit pain by…

Impact of research participation on parents of seriously ill children.

BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns…

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…

Intravenous fentanyl for cancer pain: a "fast titration" protocol for the emergency room

Patients with cancer sometimes are admitted to the emergency room due to severe pain. Despite the fact that morphine's hydrophilicity can delay its peak effects after intravenous administration up to 30 minutes, it is still the most commonly used…

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…

Sibling Mortality Burden in Low-Income Countries: A Descriptive Analysis of Sibling Death in Africa, Asia, and Latin America and the Caribbean

In high-income countries, emerging research suggests sibling bereavement can have significant health and life course consequences for young people. Yet, we know far less about its burden in lower-income countries. Due to higher fertility and…

Coping, self-efficacy and psychiatric history in patients with both chronic widespread pain and chronic fatigue

OBJECTIVE: To investigate the relationship of coping style and self-efficacy to functional impairment in a group of patients with both chronic widespread pain (CWP) and chronic fatigue, as well as the possible mediating role of psychiatric diagnosis.…

Contrasting emotional approach coping with passive coping for chronic myofascial pain

Passive or emotion-focused coping strategies are typically related to worse pain and adjustment among chronic pain patients. Emotional approach coping (EAC), however, is a type of emotion-focused coping that appears to be adaptive in some nonpain…

Managing end-of-life care: comparing the experiences of terminally Ill patients in managed care and fee for service

There have been no published empirical studies comparing the experiences of terminally ill patients in managed care organizations (MCOs) and those in fee for service (FFS). This investigation represents the first empirical study to systematically…

Mapping the journey of cancer patients through the health care system. Part 2: Methodological approaches and basic findings

This is the second in a series of articles from a line of research whose intent was to construct a complete history of interactions with the health care system. This paper provides details of the methods developed to collect and collate the scattered…

Disappearance of morphine-induced hyperalgesia after discontinuing or substituting morphine with other opioid agonists

Hyperalgesia and allodynia in 4 cancer patients treated with morphine disappeared after discontinuing or substituting morphine with other opioid agonists. The first case describes a young female who developed hyperalgesia and myoclonus during…

Basic neonatal resuscitation skills of midwives and nurses in Eastern Ethiopia are not well retained: An observational study

BACKGROUND: Neonatal resuscitation is a life-saving intervention for birth asphyxia, a leading cause of neonatal mortality. Worldwide, four million neonate deaths happen annually, and birth asphyxia accounts for one million deaths. Improving…

Informed dissent: the views of some mothers of severely mentally handicapped young adults

Much of the discussion since the Arthur case has centred round the rights of handicapped infants to medical treatment. Little has centred round the question of how far one person can rightly be required to sacrifice her life for another, when she has…

Sleep features in Tourette's syndrome, neuroacanthocytosis and Huntington's chorea

Twenty-one patients affected by extrapyramidal disorders were polygraphically recorded during spontaneous nocturnal sleep for two consecutive nights to assess their sleep and movement patterns. The patients (pts) sample included: Gilles de La…

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…

Methadone is safe for treating hospitalized patients with severe pain

PURPOSE: Methadone is still regarded as a second line opioid for patients suffering from severe pain, and is rarely used in hospitalized patients. The infrequent use of methadone is probably due to its long plasma half-life that could lead to…

Recruitment and retention in a longitudinal palliative care study.

A longitudinal feasibility study regarding quality of life and interventions for patients with advanced cancer or AIDS and their family caregivers was conducted to determine issues related to their recruitment and retention and to obtain pilot data…

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

Non-invasive ventilation and palliation: experience in a district general hospital and a review

Non-invasive ventilation (NIV) is increasingly being used in hospitals to treat respiratory failure. The use of NIV with palliative intent in a district general hospital is described and ten illustrative cases where NIV was used in an attempt to…

Development and preliminary validation of the 'Mind the Gap' scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis

BACKGROUND: To develop a scale to assess satisfaction with transitional health care among adolescents with a chronic illness and their parents. METHODS: The 'Mind the Gap' scale was developed using evidence from a previous needs assessment, in three…

Endogenous opioid activity in clinical hemorrhagic shock

Plasma beta-endorphin, cortisol and total opioid-like activities were measured upon arrival at the hospital in ten patients with extensive trauma and in a state of shock and 11 patients with minor injury. Patients in a state of shock had…

What influences parents' decisions to limit or withdraw life support?

OBJECTIVE: Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the…

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