Browse Items (221 total)

In this study, we analyzed the relationships among clinical, emotional, social, and spiritual dimensions of patients with advanced illness. It was a cross-sectional study, with a sample of 108 patients in an advanced illness situation attended by…

OBJECTIVES: Adolescents and young adults with life-limiting or life-threatening conditions are often socially isolated because of the demands of their illness. Although adolescents and young adults have a noticeable online and social media presence,…

AIM: In childhood, severe psychomotor impairment (SPMI) is associated with profound sleep disturbances. With the help of newly developed and validated measures, we systematically assessed how much a child's sleep disturbance affects parental sleep…

Abstract Background: The experiences of young people who have siblings with life-limiting illnesses are not well understood. Aim: The study proposed to identify the concerns of siblings of pediatric palliative care (PPC) patients. Design and…

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…

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…

BACKGROUND:
Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.

OBJECTIVE:
To explore alternative short break and…

Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to…

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…

Photovoice is a participatory research methodology in which individuals photograph their everyday realities. The present study used photovoice to understand the impact of cancer on a sample of six young adult survivors of childhood cancer (YACS) and…

Adolescents and young adults (AYAs) with cancer are a heterogeneous group. Nevertheless, there are sufficient unifying characteristics to form a distinct clinical entity. Management of this special group requires a broad-based interdisciplinary…

BACKGROUND:
The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system…

BACKGROUND: Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the…

BACKGROUND AND OBJECTIVES: Very little information exists on the number of resources utilized by individuals living with and dying of pediatric life-threatening diseases (LTDs). This study quantifies end of life (EOL) resource utilization among the…

OBJECTIVE: Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when their conditions are severe and impact their quality of life and stress. This includes not only expert medical care but…

AIM: The aim of the study was to determine survival probabilities and life expectancies for individuals with cerebral palsy based on data collected over a 28-year period in California. METHOD: We identified all individuals with cerebral palsy, aged 4…

Introduction About 4% of all cancers occur in adolescent and young adults (AYA) population in Japan. Quality and intensity of end-of-life (EOL) care in this population vary among different nationalities or cultures. Objectives We aimed to evaluate…

PURPOSE: Synovial sarcoma (SS) often metastasizes to the lung; however, the indications for and outcomes of pulmonary metastasectomy have not been evaluated in pediatric/adolescent patients. METHODS: The records of pediatric patients (age

The authors examined psychosocial outcomes following the first year of bereavement, for 51 family caregivers, including both spouses and offspring. Researchers assessed caregivers during palliative care and again during the second year of…

BACKGROUND: Promoting resilience is an aspect of psychosocial care that affects patient and whole-family well-being. There is little consensus about how to define or promote resilience during and after pediatric cancer. OBJECTIVES: The aims of this…

BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by…

IMPORTANCE: Children, adolescents, and young adults with life-limiting conditions experience various challenges that may make them more vulnerable to mental health problems, such as anxiety and depression. However, the prevalence and incidence of…

BACKGROUND: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. OBJECTIVE: To…

When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into…

CONTEXT: Polypharmacy is often appropriate for children with life-limiting conditions but is associated with an increase in hospitalisations and inappropriate prescribing, and can affect the quality of life of children and their families as they…

Objective To assess trends in place of death for children with a life-limiting condition and the factors associated with death at home or hospice rather than hospital. Design Observational cohort study using linked routinely collected data. Setting…

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…

This paper describes Mexican American family members' descriptions of perceived discrimination by pediatric health care providers (HCPs) and the families' reactions to the HCPs' discriminatory conduct. A retrospective, grounded theory design guided…

OBJECTIVES: To examine the relationship between pediatric primary care involvement and hospice and home health care use at end of life. METHODS: California Medicaid data were used to estimate the relationship between pediatric primary care…

Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life,…
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