To understand more about final conversations (communication between loved ones from the point of terminal diagnosis until death), 49 children/adolescents provided final conversation advice for other youth and for the dying person. Advice for fellow…
This study explored parental self-identity at 6, 12, and 18 months following the death of a child to cancer. Semi-structured interviews were analyzed using qualitative methodology. Two patterns of parental self-identity emerged: identity…
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 paper reports how…
This article explores the grief process of parents following the death of a child due to a life-limiting illness, putting particular focus on dyadic coping. Participants included 46 married parents (23 couples). A mixed methods design was used with…
Objective: Social support has been linked to beneficial effects on health directly (main effect) and as a buffer to stress. Most research, however, has examined these relationships using global and retrospective assessments of health and stress,…
It has been recognized that families of children with life-limiting health conditions struggle with significant financial demands, yet may not have awareness of resources available to them. Additionally, health care providers may not be aware of the…
Purpose: Self-perceived resilience may enable coping and mitigate poor psychosocial outcomes among adolescent and young adult (AYA) patients with cancer. In order to inform the development of resilience-promoting interventions, we aimed to: (1)…
BACKGROUND: 8,600 children are eligible for palliative care services each day in the US, yet many pediatric residents and pediatricians do not feel comfortable providing palliative/end of life care. OBJECTIVE: To evaluate the impact of a palliative…
BACKGROUND: Pediatric medical experiences are potentially traumatic but may lead to psychological growth. OBJECTIVE: The study objective was to synthesize the published literature regarding posttraumatic growth (PTG) in parents and patients with…
BACKGROUND: Pediatric palliative care (PPC) aims to promote quality of life for children and their families through prevention and relief of physical and psychosocial symptoms. Little is known about how PPC/hospice services impact health care…
Abstract Background: There is increasing recognition of the value of advance care planning for children with life-limiting conditions. It is important that we acknowledge and reflect on the challenges that this work presents in order to optimize…
Abstract Background: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of…
Abstract Background: Despite parent and physician reports of inadequate skill development, there are few guidelines for training the pediatric care team in sharing life-altering information (SLAI), i.e., "breaking bad news." The necessary skills for…
Abstract Background: Missing data is a common phenomenon with survey-based research; patterns of missing data may elucidate why participants decline to answer certain questions. Objective: To describe patterns of missing data in the Pediatric Quality…
Abstract Background: The majority of young people in need of palliative care live in low- and middle-income countries, where curative treatment is less available. Objective: We systematically reviewed published data describing palliative care…
Abstract Background: Pediatric palliative care is a distinct specialty that requires input from pediatric and palliative medicine specialists to provide comprehensive high-quality care. Consultations undertaken early in a child's illness trajectory,…
Abstract Background: Outpatient palliative care services can improve patient outcomes, yet little is known about their structure and characteristics. Objective: To describe the structure and characteristics of outpatient palliative care services…
Abstract Background: The American Academy of Pediatrics recommends that palliative care be available to seriously ill hospitalized children, yet little is known about how these services are structured. Objective: The study's aim is to report the…
Abstract Background: Little is known about how physician and parent perspectives compare regarding the prognosis and end-of-life (EOL) experience of children with advanced heart disease (AHD). Objective: The study's objective was to describe and…
OBJECTIVE: End-of-life discussions with patients can be one of the most difficult and stressful tasks for the oncologist. However, little is known about the discussions that healthcare providers have with patients in such situations and the…
OBJECTIVE: The primary endpoints of this study were: (1) to explore the distressing experiences of parents of patients with intractable pediatric cancer in Japan from disclosure of poor prognosis to the present and (2) to explore support they…
OBJECTIVE: The role of coping in chronic pain management is well established. One challenge to the coping approach, however, is in identifying forms of coping that reliably lead to better functioning. An emerging approach to coping is based on the…
Moral distress has been identified in multiple clinical settings especially in critical care areas. The neonatal intensive care unit (NICU) has frequent situations in which moral distress may occur including providing palliative care. The purpose of…
OBJECTIVE: To estimate the association between birth weight percentile and the risk of perinatal death at term in relation to the cause of death. METHODS: We performed a retrospective cohort study of all term singleton births in delivery units in…
OBJECTIVE: To determine the epidemiology of death in PICUs at 5 geographically diverse teaching hospitals across the United States. DESIGN: Prospective case series. SETTING: Five U.S. teaching hospitals. SUBJECTS: We concurrently identified 192…
no abstract Key Points * Assemble an interdisplinary team to design the mobile app to meet the needs of clinical users. * Plan for marketing, “keeping it fresh,” and large data volumes when implementing a mobile app. * See beyond the current…
PURPOSE: The current study was undertaken (1) to capture a clinically relevant, systematically collected series of patients with metastatic cancer and transfusion-associated vaginal bleeding and (2) to provide insight into how best to palliate this…
BACKGROUND: Late-onset sepsis (LOS) in very low birth weight (VLBW) infants is associated with significant morbidity and mortality. The ability to predict mortality in infants with LOS based on clinical and laboratory factors at presentation of…
Nonpharmacologic, mind-body interventions are used to reduce anxiety in pediatric patients. Anti-ganglioside GD2 monoclonal antibody (anti-GD2 MoAb 3F8) therapy is the standard of care for high-risk neuroblastoma and pain is its major side effect. We…
OBJECTIVE:: This position statement from the Canadian Task Force on Adolescents and Young Adults with cancer aims to (1) conceptualize the numerous transition experiences encountered by adolescents and young adults (AYA) with cancer; and (2) provide…
A 15-year-old girl with combined immune deficiency syndrome, diagnosed with metastatic squamous cell cancer of the anus, had significant pain secondary to vulvar-perianal condyloma. Conventional treatment with oral and intravenous analgesics was…
BACKGROUND: There is a positive relationship between parent and young child distress during cancer treatment. Dimensions of parent/child distress are multifaceted and associated with family function and quality of life outcomes. A critical…
BACKGROUND:: This is the first study to use meta-analysis as a scientific technique to provide an integrated analysis of the effectiveness of music intervention in cancer patients. OBJECTIVES:: The purpose of this study was, using the meta-analysis…
BACKGROUND:: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may…
School nurses are a source of support for teachers who have students with life-threatening conditions, and they provide support to school staff, families, and children. However, little is known regarding the questions they encounter and their desired…
PURPOSE: To evaluate the impact of the introduction of a new pediatric palliative care program on the pattern of moral distress in pediatric healthcare providers (HCPs). STUDY DESIGN AND METHODS: We used a before and after cross-sectional survey…
Integral to the care of medically fragile infants and children is the sobering reality that not all will survive. Supporting children and families through the dying process requires knowledge, skill, compassion, and a willingness to be present to the…
OBJECTIVE: To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease. DESIGN: Cross-sectional multicenter survey study of bereaved parents. SETTING: Two tertiary care pediatric hospitals. SUBJECTS:…
