Browse Items (896 total)

Although we know that families of seriously ill children experience spiritual distress, especially at the end of the child's life, there is little information on the specific spiritual needs of families. In order to develop further training for…

Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of…

Aims:
A systematic review was conducted to appraise and classify evidence related to the life transitions of adolescents and young adults with life-limiting conditions.

Methods:
The databases searched were MEDLINE, CINAHL, PsycINFO, CancerLit, and…

OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose…

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,…

BACKGROUND:
In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care…

Abstract
Patient and public involvement in healthcare is important to ensure services meet their needs and priorities. Increasingly, patient experiences are being used to educate healthcare professionals. The potential contribution to medical…

BACKGROUND:
With improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This…

Background

Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision-making regarding the utilisation of out-of-home respite is dependent on many interlinking factors including the…

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
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe…

IMPORTANCE:
For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. While clinicians should respect and help…

The goal of this study was to explore nurse experiences in communication with children about spiritual topics in order to develop training in this area.
BACKGROUND:
Although spiritual care is essential in pediatric palliative care, few providers…

As the field of Pediatric Palliative Care continues to develop, it is important to consider the scope of practice and the utility of collaboration with other specialties, including child and adolescent psychiatry. The integration of psychiatry and…

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…

BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile,…

Children and adolescents with complex chronic conditions often receive pediatric palliative care (PPC) from health care professionals. However, children's needs exist both in a health care context and in the community where children interact with…

Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes…

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…

Adolescence, the transition between childhood and adulthood, represents a time of rapid biological, neurocognitive, and psychosocial changes. These changes have important implications for the development and evolution of adolescent spirituality,…

Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with…

OBJECTIVE: To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. METHOD: Cross-sectional survey using a web-based questionnaire. SETTING: UK specialist paediatric…

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…

Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and…

OBJECTIVE: We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice.…

OBJECTIVES: to understand the family's experience of the child and/or teenager in palliative care and building a representative theoretical model of the process experienced by the family. METHODOLOGY: for this purpose the Symbolic Interactionism and…

Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how…

PURPOSE OF REVIEW: An up-to-date summary of the literature on children's and adolescents' understanding of their own terminal illness and death. RECENT FINDINGS: Clinicians still find it difficult to speak with pediatric patients about death even…

The purpose of this article is to analyze the resilience of the nursing staff in providing care for children and adolescents with chronic diseases, including coping with their deaths. The participants of this qualitative research were nursing…

The principles of the right to informed consent and informed refusal are quite clear for competent adult patients. The right of a competent adult patient to give his informed consent before medical treatment can be started, is a patients' right that…

The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships,…

Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and…

Cystic fibrosis (CF) is one of the most common life-limiting genetic conditions. Ellen Bolton (not her real name) is a teenager with one of the rarer presentations of CF. This case study explores the experiences of Ellen and her family. It discusses…

Children who require palliative care are being 'short changed or ignored', according to a survey of services in England by the charity Together for Short Lives.
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