Browse Items (404 total)

OBJECTIVE: To examine the association between care coordination experiences of family caregivers of children with medical complexity (CMC) and caregivers' health-related quality of life (HR-QOL). METHODS: From July 2018 to July 2019, family…

Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC…

INTRODUCTION: Most children with medical complexity have to live with home mechanical ventilation (HMV). Undertaking the care of a child with HMV creates a psychosocial burden on parents. This study investigated the impact of selected potential…

BACKGROUND: The aim of this study was to explore and clarify the healthcare service utilization of children dependent on medical technology (CMT), and the parental health-related quality of life (HRQOL). METHODS: Participants recruited the primary…

Families caring for children with disabilities face particular challenges and demands compared to those caring for children without disabilities. Evidence suggests that there is considerable variation in how caregivers of children with disabilities…

There is growing consensus that centering lived experience is needed to meaningfully transform the burdensome systems of care for children with medical complexity (CMC) and their families. The Collaborative Improvement and Innovation Network to…

A recent measure was developed to assess the Quality of Life (QoL) of young people with advanced cancer and is available for parents and professionals (Advance QoL). The present study aimed to elaborate self-reported versions for children and…

Objectives: This study aimed to examine the symptomatology of patients with advanced cancer at admittance to palliative care services and to investigate how the symptomatology changed during the first month, and whether these changes were associated…

Background: Palliative care in the Philippines is categorized as 3A, considered to have localized hospice care provision; however, lack of education and awareness are dismal and accounted as the biggest challenges for the health care providers and…

Objectives This study aims to validate the Palliative and Complex Chronic Pediatric Patients QoL Inventory (PACOPED QL), a new quality-of-life (QoL) assessment tool for pediatric palliative patients with complex chronic conditions. The goal is to…

Abstract Palliative care for children with neurological conditions is essential to improve their quality of life and that of their family, given their uncontrollable symptoms and associated disabilities. These conditions include genetic diseases,…

Abstract Shared decision making is a concept essential to establishing meaningful goals of care that reflect one's preferences, values, beliefs, culture, and quality of life. This rapid review considered shared decision making from the perspective of…

Abstract Introduction: Hospital-based supports for families following the death of a child are rare. Virtual interventions may address key barriers to providing bereavement care, but little is known about their acceptability, feasibility, and…

OBJECTIVES: This study aimed to explore the multifaceted experiences of families with children and adolescents enrolled in the pediatric palliative care (PPC) program, with a particular emphasis on understanding their perspectives regarding the…

Introduction: This study focused on understanding the experiences of forced migrant families and the health care professionals who care for them within palliative care. Palliative care for children requires an active, holistic approach to care, with…

Introduction: Voicing My CHOiCES (VMC) is an advance care planning (ACP) guide designed to assist adolescents and young adults (AYAs) with serious illness in communicating their care preferences to others. This study evaluated a revised version of…

Duchenne muscular dystrophy (DMD) is a severe genetic neuromuscular disease that causes progressive loss of muscle function. As life expectancy in DMD has gradually increased to a current median of 21-39 years, the disease serves as an example of…

Pediatric neurodegenerative disorders (PNDs), such as juvenile neuronal ceroid lipofuscinosis (CLN3 disease, also called Batten disease) and juvenile Huntington disease, are devastating conditions that result in progressive neurological dysfunction…

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Background: The role of pediatric palliative care (PPC) is well described in oncology, however, its involvement in children with congenital heart disease (CHD) is not well explored. Method(s): This prospective interventional study was conducted on…

Life-limiting conditions often cause children to be overlooked as participants in everyday activities. For parents child development should lead to independence in daily living activity. For parents of children who are disabled, independence is a…

Trisomy 18 syndrome, also known as Edwards syndrome, is the second most common autosomal chromosome syndrome after Down syndrome. Trisomy 18 is a serious medical disorder due to the increased occurrence of structural defects, the high neonatal and…

Background: Perinatal Palliative Care (PPC) is individualized medical-nursing care aimed at improving the quality of life of newborns with life-limiting conditions and to support their families. This study draws on the analysis of the experience…

INTRODUCTION: Caring for children living with life-threatening and life-limiting illnesses can be challenging for families. Parents' roles as primary caregivers can be complex, with extensive responsibilities. METHOD(S): A mixed-design study was…

Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each…

Background: Children with medical complexity (CMC) often require multiple medications, leading to polypharmacy, which seems to be linked to adverse effects, administration errors, and increased caregiver burden. This study aimed to describe the…

BACKGROUND: Dialysis-dependent pediatric patients and their families face significant biopsychosocial burdens and low health-related quality of life. Palliative care consultations can alleviate some degree of suffering for patients and families but…

Pediatric neurocritical care teams care for patients and families facing the potential for significant neurologic impairment and high mortality. Such admissions are often marked by significant prognostic uncertainty, high levels of parental emotional…

Background: Paediatric palliative and hospice care aims to improve the quality of life of children with life-limiting and life-threatening conditions and their families. The number of these patients has risen significantly in recent years, resulting…

Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a…

Background: Children with complex and chronic conditions receiving palliative care will likely experience many transitions during their life and their treatments. Transition periods for children with life-limiting conditions and their families can be…

While many experts in pediatric cardiology have emphasized the importance of palliative care involvement, very few studies have assessed the influence of specialty pediatric palliative care (SPPC) involvement for children with heart disease. We…

Introduction: Most neonatal deaths in industrialized countries follow a process of redirection of care. The objectives of this study were to describe how neonates die in a middle-income country, whether there was redirection of care, and the reason…

Purpose: This study aimed to clarify the concept of pediatric hospice and palliative care through conceptual analysis. It also sought to identify the differences between related concepts such as pediatric death care and pediatric spiritual care, in…
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