OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent…
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care…
BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. OBJECTIVE: The aim of the study was to understand and describe the meaning of…
BACKGROUND: Perinatal grief is a process that affects families in biological, psychological, social and spiritual terms. It is estimated that every year there are 2.7 million perinatal deaths worldwide and 4.43 deaths for every 1000 births in Spain.…
Fathers are under-represented in pediatric palliative care research despite frequently playing a key role in the lives of their children. The purpose of this study was to identify factors that affected paternal study invitation and participation. A…
BACKGROUND: The increased life expectancy of persons with profound intellectual and multiple disabilities (PIMD) raises questions regarding the medical decisions related to life and death, made on their behalf during their later lives. However,…
BACKGROUND: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are…
BACKGROUND: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes.…
Background: Consultation of specialty palliative care remains uncommon in pediatric stem cell transplant (SCT) despite growing evidence that early integration of palliative care improves outcomes in patients with advanced cancers or undergoing SCT.…
BACKGROUND: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these…
Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more…
OBJECTIVE: Pediatric health systems are increasingly screening caregivers for unmet social needs. However, it remains unclear how best to connect families with unmet needs to available and appropriate community resources. We aimed to explore…
BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification…
CONTEXTS: Inadequate pain management in community paediatric palliative care is common. Evidence to inform improved pain management in this population is limited. OBJECTIVES: To explore the barriers and facilitators to paediatric community-based pain…
This study elicited the experiences of nurses caring for children with life-limiting conditions and their family, within a community based intellectual disability service. A qualitative descriptive research approach was adopted where purposeful…
BACKGROUND: Understanding what makes a 'good death' in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found…
Background: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based…
OBJECTIVE: To metasynthesize the results of qualitative studies on the factors that affect parents' participation in pain management for their infants during procedures in the NICU. DATA SOURCES: We conducted a literature search for articles…
OBJECTIVE: To understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members. DESIGN: Focus groups with children's palliative care…
CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing…
PURPOSE: The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters. DESIGN AND METHODS: A purposive sample of 10…
OBJECTIVE: To systematically review and synthesise qualitative research exploring parents/carers' experiences of seeking online information and support for long-term physical childhood conditions. DESIGN: Systematic review and thematic synthesis of…
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely…
OBJECTIVE: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health…
We tested the hypothesis that a narrative approach may enhance a bio-psycho-social model (BPS) in caring for chronically ill children. Forty-eight narratives were collected from 12 children with six different medical conditions, their mothers,…
OBJECTIVE: Breaking bad news about life-threatening and possibly terminal conditions is a crucial part of paediatric care for children in this situation. Little is known about how the parents of children with life-threatening conditions experience…
Problem The negative implications of perinatal death on mothers’ mental health are documented, however little is known about their experience of hope. Background Within the broader literature, hope has contributed to better mental health and…
Background: Fetal malformations are diagnosed prenatally in nearly 3% of pregnancies, and ~1.2% are major malformations. After prenatal diagnosis, it is imperative to consider families' values and to support their decision-making process. Prenatal…
BACKGROUND: Although international guidelines recommend discussions about goals of care and treatment options for children with severe and life-limiting conditions, there are still few structured models of paediatric advance care planning. AIM: The…
Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss…
Introduction: For children with cancer, early integration of pediatric palliative care in conjunction with curative treatments is recommended. In Switzerland, pediatric palliative care is mostly provided by an interdisciplinary primary oncology team…
OBJECTIVE: To understand the existential experience of children with cancer under Palliative Care from the Humanistic Nursing Theory's point of view. METHOD: This is a field and qualitative research, in which eleven children participated, supported…
Purpose: To analyse the preference of end of life care place in paediatric oncology patients, and to understand the end of life care needs and regrets among the care givers. Method(s): This was an observational qualitative study. Parents of…
The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand…
Objective: Quality of Life (QoL) is the core of pediatric palliative care (PPC). The evaluation of QoL allows the adjustment of patient care. However, it remains difficult for clinicians to measure it in this population because there is very little…
BACKGROUND: Urea cycle disorders (UCD) are rare inherited metabolic disorders caused by deficiencies of enzymes and transporters required to convert neurotoxic ammonia into urea. These deficiencies cause elevated blood ammonia, which if untreated may…
BACKGROUND: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about…
OBJECTIVE: This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement.…
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care…
The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this…
