Browse Items (1278 total)

Respiratory distress is one of the most common and frightening symptoms of children with life-limiting conditions. Because treatment of the underlying cause is frequently impossible or insufficient, in many children, symptomatic treatment is…

INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their…

BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, which means they must make the transition from children's to adult services. This has proved a challenging process for…

Decisions about whether to withdraw or withhold life-sustaining medical treatment from children give rise to complex and value-laden judgments. While recourse to the courts is uncommon, judicial decisions provide an important source of guidance for…

While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care…

Introduction: In order to develop such a relatively new type of medical care in Ukraine, as pediatric palliative care, first of all, qualified medical workers are needed. The aim: to assess the awareness of pediatric palliative care among healthcare…

Description: Purpose: The Little Lights program is a novel, collaborative, nursing-led bereavement photography service created as a solution to the challenge of providing consistent high-quality bereavement photography for families and their dying…

Background: Families caring for a child with a life limiting condition not only provide 24 hour complex care but also must care for siblings and cope with everyday tasks. Research suggests families could benefit from 'domestic support' (Fraser et al,…

Introduction: In Italy there are approximately 12000 children affected by life-limiting illnesses, which require palliative care services. The national reality, however, confirms the lack of a proper palliative care services network to ensure relief…

Research aim: The main aim was to describe the needs of parents caring for a terminally ill child during the course of the illness, the time of dying, and after the death of the child. Secondary aim was to identify the risk factors occurring during…

Description: Improving Familiarity with Pediatric Palliative Care Among Pediatric and Internal Medicine-Pediatric Residents. Objectives: To increase familiarity with and comfort level in providing pediatric palliative care in inpatient and outpatient…

Background/aims: Undertaking research with children and young people (CYP) with life-limiting conditions (LLC) and life threatening illnesses (LTI) is challenging. Previous research has highlighted barriers, such as obtaining ethics approval and…

Introduction: Advancement in medical science and better health care has led to increased survival of children with complex neurodisability (cerebral palsy, neuromuscular, neuro-metabolic, and genetic disorders). Paediatric palliative care has…

Description: Background: Pediatric palliative care is an interdisciplinary service that works to enhance the quality of life for children with serious illness. Unfortunately, the need for palliative care is difficult to ascertain and is often…

Background: Approximately, 300 children die in Denmark every year. In order to support future implementation of specialized pediatric palliative care the aim of this study was to investigate the needs, quality of life and severity of distress of…

Introduction To discuss the extended family support that is required in children's palliative care, focusing on Grandparents, who sometimes may be seen as the 'forgotten mourners'. Objectives Utilizing art psychotherapy in a group setting to…

Background: Inpatient hospice care (IHC) for adults in Germany is used in the last weeks of life. Children, adolescents and young adults (ACA) with life-limiting diseases are entitled to 28 days/year of IHC during their lifetime. We explored various…

Description: The Affordable Healthcare Act Section 2302 is a provision that changed the eligibility of children with life-limiting conditions to receive hospice-like services and thus created concurrent care programs. In California, there was…

Music can play an important role in the lives of many young children in Australia, however the ways in which music is used, understood and engaged with can vary significantly from child to child, and family to family, dependent upon factors such as…

Background/aim: Pediatric Palliative Care (PPC) in hospitals mainly focuses on the parents and siblings of children suffering from a life limiting disease. However, most grandparents are also highly involved in the caring of the child and require…

AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family.…

PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses…

Description: Thousands of children in the United States die each year and many more live with illnesses which reduce their quality of life and contribute to suffering. Pediatric palliative care is the specialized medical care of children living with…

Background: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element to successful pediatric advance care planning (pACP). Yet, they are considered as challenging…

In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in…

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…

An advance care plan (ACP) is the record of a discussion between an individual (where possible), their professional care givers and those close to them about their future care. When performed well, the process provides all those involved with the…

Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control.…

Social media is an important access point for engagement of children and adolescents. For individuals with a life-limiting illness or serving as the caregiver for an ill child, social media can be a helpful outlet for support and information…

OBJECTIVE: Because children with medical complexity (CMC) display very different health trajectories, needs, and resource utilization than other children, it is unclear how well traditional conceptions of population health apply to CMC. We sought to…

This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and…

AIM: To understand parents' experiences and needs during a child's end-of-life care at home and to identify systemic factors that influence its provision. BACKGROUND: A child's end-of-life phase is an extremely difficult time for the whole family.…

Terror Management Theory (TMT), derived from Ernest Becker’s The Denial of Death (1974), maintains that humans are motivated by the desire to overcome our fear of death by constructing meaning and significance in our lives in various ways, including…

OBJECTIVE: We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children's…
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