Browse Items (346 total)

Background: Providing long-term care for a family member can be a source of severe stress for the untrained caregiver, and is known to cause depression, poor overall health, and lower quality of life for the caregiver. This burden may lead to poorer…

Background: Pain is one of the most common symptoms in children and young people (CYP) with life-limiting conditions (LLCs) which include a wide range of diagnoses including cancer. The current literature indicates that pain is not well managed,…

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Background: Advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents' perceive, understand and engage with the process. Aim(s): To understand parents'…

Pediatric palliative care (PPC) focuses on children and adolescents with life-limiting diseases. It may be initiated at various points of the disease trajectory, if possible early enough to support living with the best possible quality of life…

Little is known about the experience of parents receiving results of quality-of-life research in pediatric advanced cancer. The PediQUEST study participants who indicated interest in results during enrollment were mailed summarized findings and the…

OBJECTIVE: To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease. DESIGN: Cross-sectional multicenter survey study of bereaved parents. SETTING: Two tertiary care pediatric hospitals. SUBJECTS:…

Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at…

Despite vast improvements in disease-based treatments, many children live with life-threatening disorders that cause distressing symptoms. These symptoms can be difficult to comprehensively assess and manage. Yet, frequent and accurate symptom…

One hundred fifty-nine young adults in the 17-18 year old age group suffering from chronic disease or handicap participated in this study which examined their attitudes towards enforced treatment and euthanasia in terminal patients. The comparison…

BACKGROUND: Children with medical complexity need complex assistance, that considerably affects caregivers' quality of life. They often need multiple medications, with a consequent relevant risk of errors or poor compliance. Galenic (or compounded)…

BACKGROUND: This study is a pilot experience aiming to investigate the compliance of an institutional cohort of Italian children treated for a malignant disease and their families in completing the health utilities index2, (HUI2) and the…

Background: Cancer remains the leading medical cause of death in children. Ensuring quality of life should be a priority, but it may be difficult to stop treatments, particularly in settings where palliative care is scarce. Little is known about how…

The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. At least in part, these deficiencies exist because of a lack of solid evidence on which to…

BACKGROUND: There is currently no published, validated measures available that comprehensively capture quality of life (QoL) symptoms for children with poor-prognosis malignancies. The pediatric advanced care-quality of life scale (PAC-QoL) has been…

Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is…

Introduction: Family conferences between parents of critically ill children and health care providers in the pediatric intensive care unit (PICU) serve an important role in family centered care. Many family conferences include palliative care…

Background: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. Aim: To identify resources on…

This study was carried out in eight palliative care services in four Canadian cities. A revised version of The McGill Quality of Life Questionnaire (MQOL) is compared to a single-item scale measuring overall quality of life (SIS), and the…

This is the first report on the McGill Quality of Life Questionnaire (MQOL), a questionnaire relevant to all phases of the disease trajectory for people with a life-threatening illness. This questionnaire differs from most others in three ways: the…

BACKGROUND:
The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care.
AIM:
To…

BACKGROUND AND OBJECTIVE: Although there are general guidelines for adolescents with chronic illnesses making the transition from paediatric to adult health care, there are few studies which evaluate transition programs. This cross-sectional study…

Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet,…

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…

Pediatric phase I clinical oncology trials represent a unique cohort of patients who have not responded to standard therapies and remain highly vulnerable to treatment toxicity and/or disease burden. Incorporating a palliative care consultation into…

CONTEXT: Early palliative care (PC) has been shown to improve the quality of life of children with cancer, yet referral practices by pediatric oncology providers remains inconsistent and few patients receive a formal PC consult. OBJECTIVE(S): We…

Cachexia is a syndrome and therefore does not have a specific definition. Patients are characterized by the presence of anorexia, early satiety, weight loss, weakness, anaemia and oedema. These features occur to a variable extent in different…

The debate on limiting futile therapy in the aspect of End of Life (EoL) care has been going on in Poland over the last decade. The growing demand for EoL care resulting from the aging of societies corresponds to the expectation of a satisfactory…

In the complex patient—doctor relationship, the principle of personal autonomy has gradually acquired more weight against medical paternalism, both in clinical practice and in bioethical thinking. 1 In many countries, this change has been…

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