Kimberley Widger

University of Toronto | U of T · Bloomberg Faculty of Nursing

Abstract 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...

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 familie...

e24127 Background: Adolescents and young adults (AYA) with cancer can suffer from substantial symptom burdens. Specialty palliative care (SPC) is recommended but often uninvolved or involved late. In a population-based AYA cohort, we determined: 1) whether symptom severity measured by routine patient report was associated with subsequent SPC involv...

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. We aimed to identify demographic, socioeconomic and geographic factors associated with variations in location of dea...

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...

Objective: The aim of this study is to extrapolate the clinical features of children with severe neurologic impairment (SNI) based on the functional characteristics and comorbidities described in published studies. Methods: Four databases were searched. We included studies that describe clinical features of a group of children with SNI (≥20 subj...

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 versus generalist PC (SPC, GPC) is unknown. Objectives (1) To evaluate...

Outcomes 1. Explain the impact of specialized palliative care on reducing high-intensity end-of-life care in adolescents and young adults with cancer 2. Identify subpopulations among adolescents and young adults with cancer who are at highest risk for reduced access to specialized palliative care Original Research Background A high proportion of a...

Outcomes 1. Describe the existing literature that supports a “good day, bad day” approach to research and clinical practice with patients and families 2. Describe a “good day, bad day” cognitive interview approach for eliciting research participants’ perspectives on their care experiences 3. Explain how a “good day, bad day” interview approach can...

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...

Background: Research remains inconclusive regarding the impact of specialist pediatric palliative care (SPPC) on health care utilization and cost. Objective: To better understand and quantify the impact of regional SPPC services on children's health care utilization and cost near end of life. Design: A retrospective cohort study used administrative...

Background: 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 nursin...

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. Sin...

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 ped...

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...

Objective To assess the performance of previously published high-intensity neurologic impairment (NI) diagnosis codes in identification of hospitalized children with clinical NI. Methods Retrospective study of 500 randomly selected discharges in 2019 from a freestanding children's hospital. All charts were reviewed for 1) NI discharge diagnosis co...

In this chapter, we outline why research in paediatric palliative care (PPC) is essential, describe the challenges to conducting research in children and families affected by life-threatening conditions (LTCs), and propose strategies for overcoming these obstacles in order to advance the field and ensure provision of optimal and scientifically soun...

The importance of palliative care for children facing life-threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child’s illness and at the end of life. The new edition of the Oxford Textbook of Palliative Care for Children brings togeth...

Sibling relationships are one of the most long-lasting and influential relationships in a human’s life. Living with a child who has a life-threatening condition changes healthy siblings’ experience. This scoping review summarized and mapped research examining healthy siblings’ experience of living with a child with a life-threatening condition to i...

PURPOSE Evidence suggests that adolescents and young adults (AYAs) with cancer (defined as age 15-39 years) receive high-intensity (HI) medical care at the end-of-life (EOL). Previous population-level studies are limited and lack information on the impact of palliative care (PC) provision. We evaluated prevalence and predictors of HI-EOL care in AY...

Pediatric palliative and hospice care (PPC) is now firmly established as a clinical discipline across multiple countries. The evidence base to support PPC practice has grown considerably over the past two decades, but many gaps in knowledge persist. In this chapter, the authors briefly review the history of foundational PPC research that began more...

Background Sleep concerns are commonly reported by children and youth with cystic fibrosis (CF). Understanding normative sleep in the home environment and as reported from the perspective of patients and parents is a first step in responding to an important clinical concern and developing a sleep intervention strategy. This systematic review aimed...

Context: Children with incurable cancer may participate in research studies at the end of life (EOL). These studies create knowledge that can improve the care of future patients. Objective: To describe stakeholder perspectives regarding research studies involving children with cancer at the EOL by conduct of a systematic review. Data sources:...

Background Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measures exist to evaluate whether PPHC@Home provided in the U.S. meets the needs and priorities of children and their families. Methods...

Background: Health care providers (HCPs) require ongoing training and mentorship to fully appreciate the palliative care needs of children. Project ECHO® (Extension for Community Healthcare Outcomes) is a model for delivering technology-enabled interprofessional education and cultivating a community of practice among HCPs who care for children with...

Background: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service develo...

Context Children with life-shortening serious illnesses and medically complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting ([email protected]) families value the most. Objective To explore how parents rate and prioritize domains o...

Objective The aim of this study is to assess the impact of specialized pediatric palliative care (PPC) on neonates with life-limiting conditions compared to standard care. Study design MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September...

Aim To identify and assess the quality of decision aids that align the decision, values and information provided for parents making end‐of‐life or palliative care decisions for children with life‐threatening conditions. Methods Six databases and the grey literature were searched in December 2018. Two reviewers independently reviewed database citat...

Burnout in healthcare providers has impacts at the level of the individual provider, patient, and organization. While there is a substantial body of literature on burnout in healthcare providers, burnout in pediatric nurses has received less attention. This subpopulation may be unique from adult care nurses because of the specialized nature of prov...

Background Advance Care Planning (ACP) helps parents of children with chronic health conditions understand their child’s diagnosis and prognosis and use that knowledge to anticipate and discuss future health and developmental states. Although the Canadian Paediatric Society views early discussions about ACP as the standard of care for any child wit...

To ensure a safe transition of mental health patients from hospital to community settings, greater attention is being given to discharge planning. However, assessing the quality of discharge planning has been challenging due to wide variations in its definition. To facilitate evaluation of discharge planning, its meaning in the mental health litera...

Background Currently available indicators of quality pediatric palliative care tend to focus on care provided during the end-of-life period rather than care provided throughout the disease trajectory. We adapted a previously developed instrument focused on mothers’ perspectives on the quality of end-of-life care and assessed its psychometric proper...

Objective: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. Methods: Our search strategy covered MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase through Sept...

Background: Specialized pediatric palliative care programs aim to improve quality of life and ease distress of patients and their families across the illness trajectory. These programs require further development, which should be based on how they improve outcomes for patients, families, health care professionals, and the health care system. Obje...

Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC®-Pediatrics) curriculum on the following: (1) knowledge dissemination; (2)...

Given the broad focus of pediatric palliative care (PPC) on the physical, emotional, and spiritual needs of children with potentially life-limiting illnesses and their families, PPC research requires creative methodological approaches. This manuscript, written by experienced PPC researchers, describes issues encountered in our own areas of research...

Background: Orally administered sucrose is effective and safe in reducing pain intensity during single, tissue-damaging procedures in neonates, and is commonly recommended in neonatal pain guidelines. However, there is wide variability in sucrose doses examined in research, and more than a 20-fold variation across neonatal care settings. The aim o...

Purpose The impact of specialized pediatric palliative care (SPPC) teams on patterns of end-of-life care is unknown. We sought to determine (1) which children with cancer access SPPC and (2) the impact of accessing SPPC on the risk of experiencing high-intensity end-of-life care (intensive care unit admission, mechanical ventilation, or in-hospital...

Despite improvements in survival, children with cancer experience physical, emotional, social, and spiritual suffering throughout their cancer treatments, regardless of disease outcome. For those with advanced cancer, suffering intensifies with higher symptom burden and lower quality of life over the last few months of life. Parents and siblings al...

Background: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown. Objective: To determine the validity of using such data to identify the involvement of specialized pediatric PC teams among children with cancer. D...

Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal qualitative study over two years using interpretive descriptive methodology to understand siblings’ perspectives when a brother or sister was dying at home or in hospital. T...

10573 Background: Children with cancer are at risk of receiving high-intensity (HI) care at the end-of-life (EOL) and associated high symptom burden. The impact of palliative care (PC) delivered by generalists or of specialized pediatric palliative care (SPPC) on patterns of EOL care is unknown, with previous studies limited by small sample sizes o...

Objective To retrospectively review trends of general paediatric inpatient deaths at a tertiary care children’s hospital over a 15-year period. Methods Data were collected for all patients who died on the general paediatric wards or paediatric intensive care unit (PICU) during 1998, 2005 or 2012 and had a ‘general paediatric condition’—an underlyi...

Background and objectives: Heath care use and cost for children at the end of life is not well documented across the multiple sectors where children receive care. The study objective was to examine demographics, location, cause of death, and health care use and costs over the last year of life for children aged 1 month to 19 years who died in Onta...

Purpose Children with cancer often receive high-intensity (HI) medical care at the end-of-life (EOL). Previous studies have been limited to single centers or lacked detailed clinical data. We determined predictors of and trends in HI-EOL care by linking population-based clinical and health-services databases. Methods A retrospective decedent cohor...

Identifying how nursing care directly affects patients is essential to improving care quality, reducing costs, and determining nursingʼs contribution to overall organizational performance. This scoping review examined methods used for developing nursing process health care indicators. Key concepts and sources of evidence were identified to lay a fo...

Background: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of ch...

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 suboptimal care. In order to address these gaps, we will implement and evaluate a national roll-out of Education in P...

BACKGROUND Historically, most paediatric deaths have occurred in a hospital setting with up to 85% of these in the Paediatric Intensive Care Unit (PICU). The increase of children with chronic complex conditions (CCC) cared for at paediatric tertiary institutions, who often have shortened-life spans, has also come with an increase in the proportion...

The aim of this systematic review was to evaluate the effectiveness of toolkits as a knowledge translation (KT) strategy for facilitating the implementation of evidence into clinical care. Toolkits include multiple resources for educating and/or facilitating behaviour change. Systematic review of the literature on toolkits. A search was conducted o...

It is now widely endorsed that palliative care (PC) principles should be integrated into the routine care of all children diagnosed with cancer, not only those at end of life (1). However, paediatric health professionals report receiving little training in PC (2), and bereaved parents continue to report suboptimal care throughout the disease course...

Background: The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care. Methods: The study purpose was to develop and test an instrument to measure mothers’ perspectives on the quality of care received before, at the time of, and following a child’s deat...

Canada is a vast country in terms of size but with a relatively small population. It is home to North America's first free-standing children's hospice and to the first multicentre, pediatric palliative care (PPC) research team. Over the past 20 years, extensive growth has occurred across Canada in clinical services, research, education, advocacy, a...

Given the role nurse faculty have in educating nurses, little is known about what influences their intention to remain employed (ITR) in academic settings. Findings from a nurse faculty survey administered to test a conceptual model of factors hypothesized as influencing nurse faculty ITR are reported. A cross-sectional survey design was employed....

Advanced Practice Nurses (APNs) need research skills to develop and advance their practice and, yet, many have limited access to research training and support following completion of their advanced degree. In this paper we report on the development, delivery, and evaluation of an innovative pilot program that combined research training and one-to-o...

Shortage of nurses is a major concern across health-care systems. One contributing factor that has re-ceived little attention is the shortage of adequately prepared nurse faculty. The nurse shortage will be exacerbated if the supply of adequately prepared nurse faculty is insufficient. Little is known about the factors that influence nurse faculty...

Les infirmieres en pratique avancee (IPA) doivent posseder des competences en recherche afin de bien developper et faire progresser leur pratique, mais beaucoup d’entre elles ont un acces limite a la formation et au soutien en matiere de recherche une fois qu’elles ont obtenu leur diplome de cycle superieur. Dans le present article, nous examinons...

Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology...

In this study, Outcomes are described for patients receiving 'slow stream' rehabilitation care (called low tolerance long duration rehabilitation in Ontario, Canada consisting of approximately 5  h of rehabilitation weekly) for patients recovering from stroke in Ontario complex continuing care (CCC) (chronic) healthcare settings. In 2006-2007, 81 p...

This study aimed to learn about experiences of Mexican American and Chinese American families who require pediatric palliative care. This article describes parents' perceptions of information-sharing by health care providers during their child's hospitalizations and at their child's death. The study used a retrospective design of grounded theory an...

The fit between the Supportive Care Model and existing research on parent perspectives about pediatric palliative care was explored following a review of the literature. An electronic search of Medline and CINAHL from 2004 to January 2009 resulted in 49 articles on 38 studies that sought parent perspectives on care provided by health professionals...

Background: Structures and processes of care such as work environments and care provider responses to work environments have been shown to influence organizational outcomes. To improve health care quality, structures, processes, and outcomes of care should be considered. There is almost no literature reporting on the structural characteristics of...

To explore generational differences in job satisfaction. Effective retention strategies are required to mitigate the international nursing shortage. Job satisfaction, a strong and consistent predictor of retention, may differ across generations. Understanding job satisfaction generational differences may lead to increasing clarity about generation-...

The purpose of this study was to describe the quality of care provided before, at the time of, and following the death of an infant, child, or adolescent from the perspective of the parent, using a newly developed survey. Parents were asked to participate in this study if they experienced a stillbirth or death of an infant/child/youth between 12 an...