Parents' experiences of waiting for their child's transplant: A focus on how healthcare providers can impact the waiting process.

Waiting for a child transplant is a form of suffering for parents, yet little research has explored how parents experience waiting and how healthcare providers can impact their waiting experiences. The purpose of this article is to investigate how parents experienced the process of waiting for their child's transplant with a specific focus on the impact of healthcare providers on parents' experience of waiting. Six parents from four different families participated in interviews and observations.

Examining emotional and behavioural trajectories in siblings of children with life-limiting conditions.

Background: Healthy siblings of children with life-limiting conditions often experience emotional and behavioural struggles over the course of the ill child's condition(s). Resources to support these siblings are limited due to a lack of understanding about their needs. Therefore, this study was designed to characterize the emotional and behavioural trajectories among siblings of children with progressive, life-limiting genetic, metabolic, or neurological conditions over a 12-month observation period.

The Home-Based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of Psychometric Properties.

Context: Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the provision and quality of home-based PPHC in the U.S.

Validation of Patient-Reported Outcome Measure in Pediatric CKD (PRO-Kid).

Key Points: PRO-Kid is a patient-reported outcome measure of the frequency and burden of symptoms. Higher PRO-Kid scores are associated with lower Pediatric Quality of Life Inventory scores.

Background: Measuring the burden of symptoms that matter most to children and adolescents with CKD is essential for optimizing patient-centered care.

Learning to Trust Yourself: Decision-Making Skills Among Parents of Children With Medical Complexity.

Context: Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they develop that facilitate this engagement.

Objectives: To describe the skills that caregivers developed as they gained experience making medical decisions.

Recurrent Intensive Care Episodes and Mortality Among Children With Severe Neurologic Impairment.

Importance: Children requiring care in a pediatric intensive care unit (PICU) are known to have increased risk of subsequent mortality. Children with severe neurologic impairment (SNI)-who carry neurologic or genetic diagnoses with functional impairments and medical complexity-are frequently admitted to PICUs. Although recurrent PICU critical illness episodes (PICU-CIEs) are assumed to indicate a poor prognosis, the association between recurrent PICU-CIEs and mortality in this patient population is poorly understood.

Specialty Palliative Care and Symptom Severity and Control in Adolescents and Young Adults With Cancer.

Importance: Adolescents and young adults (AYAs) with cancer experience substantial symptom burden. Specialty palliative care (SPC) is recommended but often not involved or involved late.

Objectives: To determine whether patient-reported symptom severity was associated with subsequent SPC involvement and whether SPC was associated with symptom improvement in AYAs with cancer.

Experience of Care Among Adults With Acute Leukemia Near the End of Life: A Scoping Review.

Acute leukemia is a cancer of the blood and bone marrow with a high symptom burden and a high mortality rate in adults. The quality of end-of-life care among this patient population is deemed to be low based on health care administrative data, though the patient experience is not included in this evaluation. This scoping review aims at exploring and mapping the current research literature on the experience of care among adults with incurable acute leukemia near the end of life.

Prevalence and Risk Factors for Moral Distress in Pediatric Oncology Health Care Professionals.

Purpose: Moral distress (MoD) is prevalent among health care professionals (HCPs) in oncology and is associated with burnout. The objectives of this study were to quantify MoD among pediatric oncology healthcare professionals (HCPs) at a Canadian quaternary care hospital, identify root causes, and evaluate change over time.

Methods: Eligible pediatric oncology HCPs were identified, and consenting participants completed the Measure of Moral Distress-Healthcare Professionals (MMD-HP) and MoD Thermometer (MDT) at baseline, followed by biweekly MDTs over 12 weeks.

Morbidity and healthcare use among mothers of children with cancer: A population-based study.

Background: The impact of a child's cancer diagnosis on subsequent maternal physical health is unclear.

Methods: We identified all Ontario children diagnosed less than 18 years with cancer between 1992 and 2017. Linkage to administrative databases identified mothers who were matched to population controls.

Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study.

Background: Children with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age, disease type, socioeconomic status, and distance that the child lives from a tertiary hospital. We examined: 1) the prevalence of indicators of high intensity end-of-life care (e.

The Sensory Experience of Waiting for Parents of Children Awaiting Transplant: A Narrative Ethnography.

Despite the senses being a valuable source of knowledge, little research has explored the sensory process of medical experiences. This narrative ethnographic study investigated how the senses shaped parents' experiences of waiting for their child to receive a solid organ, stem cell, or bone marrow transplant. Six parents from four different families primarily participated in sensory interviews as well as observations that explored the question: How do parents experience waiting using the five senses? Our narrative analysis suggested that parents' bodies stored sense memories, and they re-experienced stories of waiting through the senses and 'felt realities'.

Location of death among children with life-threatening conditions: a national population-based observational study using the Canadian Vital Statistics Database (2008-2014).

Background: Patterns in location of death among children with life-threatening conditions (e.g., cancer, genetic disorders, neurologic conditions) may reveal important inequities in access to hospital and community support services.

Measuring Pediatric Palliative Care Quality: Challenges and Opportunities.

Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their families requires measuring care quality, ensuring that quality measurement is embedded into day-to-day clinical practice, and aligning quality measurement with healthcare policy priorities. Yet, numerous challenges exist in measuring PPC quality.

The Effect of Specialized Palliative Care on End-of-Life Care Intensity in AYAs with Cancer.

Context: Many adolescents and young adults (AYAs; 15-39 years) with cancer receive high intensity (HI) care at the end of life (EOL). Palliative care (PC) involvement in this population is associated with lower risk of HI-EOL care. Whether this association differs by specialized vs.

Exploring Pediatric Nurses' Perspectives on Their Work Environment, Work Attitudes, and Experience of Burnout: What Really Matters?

Background: Pediatric nurses care for some of the most vulnerable patients in our healthcare system and are vulnerable to the impact of the stress of their work on their well-being. Burnout is a potential response to chronic interpersonal stressors and a negative work outcome linked to personal and professional consequences. A thorough understanding of the experience and factors associated with burnout in this population is an important part of developing interventions to mitigate or prevent this workplace outcome.

The Relationships Amongst Pediatric Nurses' Work Environments, Work Attitudes, and Experiences of Burnout.

Pediatric nurses care for some of the most vulnerable patients in our healthcare system. Research on health care provider organizational behavior shows that the quality of care nurses provide is directly related to their well-being, influenced by Burnout and job stress, in the workplace. However, most of the research conducted on nursing populations neglects to separately study nurses who care for children.

Children's Health Care Utilization and Cost in the Last Year of Life: A Cohort Comparison with and without Regional Specialist Pediatric Palliative Care.

Research remains inconclusive regarding the impact of specialist pediatric palliative care (SPPC) on health care utilization and cost. To better understand and quantify the impact of regional SPPC services on children's health care utilization and cost near end of life. A retrospective cohort study used administrative databases to compare outcomes for child decedents (age 31 days to 19 years) from two similar regions in Ontario, Canada between 2010 and 2014, wherein one region had SPPC services (SPPC+) and the other did not (SPPC-).

Education in Palliative and End-of-Life Care-Pediatrics: Curriculum Use and Dissemination.

Context: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide.

Development of a patient-reported outcome measure for the assessment of symptom burden in pediatric chronic kidney disease (PRO-Kid).

Background: Chronic kidney disease (CKD) and kidney failure in childhood are associated with significant and life-altering morbidities and lower quality of life. Emerging evidence suggests that management should be guided in part by symptom burden; however, there is currently no standardized assessment tool for quantifying symptom burden in this pediatric population. This study aimed to develop and refine a patient-reported symptom assessment tool for children with CKD/kidney failure (PRO-Kid), to evaluate the frequency and impact of symptoms.

Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children.

Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs.