Browse Items · Pediatric Palliative Care Library

Shared Spiritual Beliefs between Adolescents with Cancer and Their Families

BACKGROUND: FAmily CEntered (FACE) Advance Care Planning helps family decision makers to understand and honor patients' preferences for future health care, if patients cannot communicate. Spiritual well-being is a key domain of pediatric oncology…

Identifying the Know-Do Gap in Evidence-Based Neonatal Care Practices among Informal Health Care Providers-A Cross-Sectional Study from Ujjain, India

BACKGROUND: More than a quarter of global neonatal deaths are reported from India, and a large proportion of these deaths are preventable. However, in the absence of robust public health care systems in several states in India, informal health care…

Vaccine Preventable Diseases in Pediatric Palliative Care - A Multicenter Cross-Sectional Study

Context: Vaccine preventable diseases lead to distressful symptoms and complications among pediatric patients receiving specialized home palliative care. There was no data on the vaccination compliance.Objective: The objective was to determine the…

Tags: 2023, Berthold D, Cesarean Section, Cross-sectional Studies, Hagenguth A, Hauch H, Journal of Pain and Symptom Management, Kaestner J, Kimmig A, Kriwy P, March List 2023, Meinhardt A, Palliative Care, Scheer M, Tretiakova I, Vaccination, Vaccines, Vaillant V, Wolff J

Neonatal Palliative Care: Assessing the Nurses Educational Needs for Terminally Ill Patients

BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative…

Limitation of Futile Therapy in the Opinion of Nursing Staff Employed in Polish Hospitals-Results of a Cross-Sectional Study

The debate on limiting futile therapy in the aspect of End of Life (EoL) care has been going on in Poland over the last decade. The growing demand for EoL care resulting from the aging of societies corresponds to the expectation of a satisfactory…

Tags: 2022, Adult, Attitude Of Health Personnel, Cesarean Section, Child, Cross-sectional Studies, Damps M, Gajda M, Human, International Journal of Environmental Research and Public Health, Kowalska M, Kucewicz-Czech E, March List 2023, Medical Futility, Nursing Staff, Poland, Quality Of Life, Surveys And Questionnaires

Patient and Family Participation in Medication Decisions on Discharge to Hospice Care

Background: High-quality hospice care is characterized by patient-centered care and shared decision making between patients, families, and health care workers. However, little is known regarding the frequency and characteristics of patient and family…

Tags: 2022, Adolescent, Cross-sectional Studies, Decision Making, Family, February List 2023, Furuno JAO, Hospice Care, Humans, Izumi S, Journal of Palliative Medicine, Kadoyama KL, Ku IY, McPherson ML, Noble BN, NOTNLM, PMC9784578 OTO, Shared Oregon PMC, Tjia J

Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement

OBJECTIVE: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research…

Demographic and Clinical Differences Between Applied Definitions of Medical Complexity

OBJECTIVES: To identify the degree of concordance and characterize demographic and clinical differences between commonly used definitions of multisystem medical complexity in children hospitalized in children's hospitals. METHODS: We conducted a…

Tags: 2022, Child, Chronic Disease, Cross-sectional Studies, Demography, Goodman DM, Heneghan JA, Hospital Pediatrics, Hospitalization, Hospitals, Humans, Infant, October 2022 List, Pediatric, Ramgopal S, Retrospective, Studies

Racial and Ethnic Disparities in Medical Complexity and In-Hospital Death Among US-Born VLBW Infants

BACKGROUND AND OBJECTIVE: To assess the racial and ethnic disparity in the prevalence of complex chronic conditions (CCC) and/or in-hospital death among US-born very low birth weight (VLBW,

Tags: 2022, August 2022 List, Birth Weight, Bourque SL, Cross-sectional Studies, Ethnicity, Hannan KE, Hospital Mortality, Hospital Pediatrics, Humans, Hwang SS, Infant, Palmer C, Retrospective Studies, Tong S

Assessment of an Instrument to Measure Interdisciplinary Staff Perceptions of Quality of Dying and Death in a Pediatric Cardiac Intensive Care Unit

IMPORTANCE: Lack of pediatric end-of-life care quality indicators and challenges ascertaining family perspectives make staff perceptions valuable. Cardiac intensive care unit (CICU) interdisciplinary staff play an integral role supporting children…

Impact of COVID-19 on Admissions and Outcomes for Children With Complex Chronic Conditions

BACKGROUND: Although pediatric health care use declined during the coronavirus disease 2019 (COVID-19) pandemic, the impact on children with complex chronic conditions (CCCs) has not been well reported. OBJECTIVE: To describe the impact of the…

Experience of Pediatric Patient Death, Moral Distress, and Turnover Intention among Pediatric Nurses at a Tertiary Hospital in South Korea: A Cross-Sectional Study

Background: Pediatric nurses are particularly vulnerable to moral distress and turnover due to frequent experiences with patient death combined with limited pediatric palliative resources and related support. Objective(s): This study examined…

Tags: 2022, April 2022 List, Cross-sectional Studies, Death, Jang SG, Journal of Palliative Medicine, Kim S, Min A, Moral Distress, Pediatric, Pediatric nurses, South Korea, Turnover intention

Multidisciplinary Health Care Professionals' Perceptions About Pediatric End of Life Discussions: A Cross-Sectional Survey and Needs Analysis

BACKGROUND: Pediatric end of life (EOL) care involves complex coordination of providers from multiple disciplines. Many of these providers' experiences have not been completely described. AIM: This study aims to explicate the alignment and divergence…

Tags: 2022, American Journal Of Hospice And Palliative Care, April 2022 List, Chu TC, Cross-sectional Studies, Education, Georgadarellis AG, Interprofessional Relations, Mason KE, Medical, Palliative Medicine, Pediatrics

Complexity of Medication Regimens for Children With Neurological Impairment

IMPORTANCE: Parents of children with severe neurological impairment (SNI) manage complex medication regimens (CMRs) at home, and clinicians can help support parents and simplify CMRs. OBJECTIVE: To measure the complexity and potentially modifiable…

Tags: 2021, Blackmer AB, children with neurologic impairment, complex medication regimens, Cross-sectional Studies, Feinstein JA, Feudtner C, Friedman H, JAMA Network Open, Kempe A, October 2021 List, Orth LE, parent support, Samay S

The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions

BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room…

Parent engagement in perinatal mortality reviews: an online survey of clinicians from six high-income countries

OBJECTIVE: Parent engagement in perinatal mortality review meetings following stillbirth may benefit parents and improve patient safety. We investigated perinatal mortality review meeting practices, including the extent of parent engagement, based on…

Moral Distress of Clinicians in Canadian Pediatric and Neonatal ICUs

OBJECTIVE: To quantify moral distress in neonatal ICU and PICU clinicians and to identify associated factors. DESIGN: A national cross-sectional survey of clinicians working in an neonatal ICU or PICU. Moral distress was assessed with the Moral…

Basic neonatal resuscitation skills of midwives and nurses in Eastern Ethiopia are not well retained: An observational study

BACKGROUND: Neonatal resuscitation is a life-saving intervention for birth asphyxia, a leading cause of neonatal mortality. Worldwide, four million neonate deaths happen annually, and birth asphyxia accounts for one million deaths. Improving…

Evaluation of Comfort and Confidence of Neonatal Clinicians in Providing Palliative Care

BACKGROUND: Research found that low levels of professional confidence and personal comfort among neonatal clinicians regarding palliative care may indicate a lack of competence and hesitancy to offer neonatal palliative care services. PURPOSE: This…

Disorders of Upper Limb Movements in Ataxia-Telangiectasia

Ataxia-telangiectasia is known for cerebellar degeneration, but clinical descriptions of abnormal tone, posture, and movements suggest involvement of the network between cerebellum and basal ganglia. We quantitatively assessed the nature of…

Quantifying physical decline in juvenile neuronal ceroid lipofuscinosis (Batten disease)

OBJECTIVE: To use the Unified Batten Disease Rating Scale (UBDRS) to measure the rate of decline in physical and functional capability domains in patients with juvenile neuronal ceroid lipofuscinosis (JNCL) or Batten disease, a neurodegenerative…

Level of purposeful hand function as a marker of clinical severity in Rett syndrome

AIM: We investigated relationships between hand function and genotype and aspects of phenotype in Rett syndrome. METHOD: Video assessment in naturalistic settings was supplemented by parent-reported data in a cross-sectional study of 144 females with…

Clinical rating scale for pantothenate kinase-associated neurodegeneration: A pilot study

BACKGROUND: Pantothenate kinase-associated neurodegeneration is a progressive neurological disorder occurring in both childhood and adulthood. The objective of this study was to design and pilot-test a disease-specific clinical rating scale for the…

Tags: 2017, Adolescent, Adult, Aged, Aguilera-Albesa S, Behavior, Castro C A, Child, Coelho M, Cognitive Dysfunction/di [Diagnosis], Cognitive Dysfunction/et [Etiology], Correia G L, Costa C, Cross-sectional Studies, Cuadras P D, Darling A, Disabled Persons, dystonia/di [Diagnosis], Dystonia/et [Etiology], Espinos C, Ferreira J, Garcia P J, Garrido C, Gaston I, Gavilan I T, Gonzalez G L, Gutierrez F, Hernandez L C, Humans, IND, Lin J P, Lorenzo S G, Lupo V, Madruga M, Magalhaes M, Marti M J, Marti S L, Martinez-Martin P, Martorell L, Mental Disorders/di [Diagnosis], Mental Disorders/et [Etiology], Middle Aged, Moreira F, Movement Disorders, Nardocci N, Ocular Motility Disorders/di [Diagnosis], Ocular Motility Disorders/et [Etiology], Ortigoza E J D, Pantothenate Kinase-Associated Neurodegeneration/co [Complications], Pantothenate Kinase-Associated Neurodegeneration/di [Diagnosis], Pantothenate Kinase-Associated Neurodegeneration/ge [Genetics], Parkinsonian Disorders/di [Diagnosis], Parkinsonian Disorders/et [Etiology], Perez D B, Pilot Projects, Pires P, PKANDRS, Pons R, Pujol M, Ramos L J, Rego P, Reproducibility of Results, Rodriguez-Blazquez C, scale development, Severity Of Illness Index, Stamelou M, Stefanis L, Tello C, Temudo T, Tomas V M, tone and motor problems, tool development, Tustin K, Vela L, Young Adult, Zorzi G

Respiratory events and obstructive sleep apnea in children with achondroplasia: investigation and treatment outcomes

PURPOSE: We report aspects of sleep-disordered breathing in a cohort of achondroplastic children who attended our hospital. METHODS: A retrospective chart review was conducted for a 15-year period to further evaluate the diagnosis and treatment of…

Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review

OBJECTIVE: Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality…

Provider Perspectives on Use of Medical Marijuana in Children With Cancer

BACKGROUND: Although medical marijuana (MM) may have utility in the supportive care of children with serious illness, it remains controversial. We investigated interdisciplinary provider perspectives on legal MM use in children with cancer.METHODS:…

Hospitalizations for mitochondrial disease across the lifespan in the U.S

IMPORTANCE: Mitochondrial disease is being diagnosed with increasing frequency. Although children with mitochondrial disease often have severe, life-limiting illnesses, many survive into adulthood. There is, however, limited information about the…

A cross-sectional study on prevalence of pain and breakthrough pain among an unselected group of outpatients in a tertiary cancer clinic

PURPOSE: Systematic knowledge about the prevalence and the treatment effects of cancer pain in patients attending a general oncology outpatient department is limited. The purpose of this study was to investigate the prevalence of pain in a large…

Parents' experiences of pediatric palliative care and the impact on long-term parental grief.

CONTEXT: Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems. OBJECTIVES: To explore parents' perceptions of the interaction with health care…

Assessment of the need for palliative care for children in South Africa

UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries'…

Pediatric advance directives: parents' knowledge, experience, and preferences

OBJECTIVES: To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. METHODS: We conducted a prospective, cross-sectional survey of parents and caregivers of…

Parent perceptions of the quality of information received about a child's cancer

BACKGROUND: Parents' perceptions of the quality of information communicated by their child's oncologist about the child's cancer are not well understood. PROCEDURE: We conducted a cross-sectional survey of 194 parents of children with cancer…

Satisfaction with information provided to Danish cancer patients: validation and survey results

OBJECTIVES: To validate five items (CPWQ-inf) regarding satisfaction with information provided to cancer patients from health care staff, assess the prevalence of dissatisfaction with this information, and identify factors predicting dissatisfaction.…

Bereaved Jewish mothers of children who died of cancer: the relationship between the mother and the deceased child and the mother's perceived functioning

BACKGROUND: Coping with grief after a child's death is a complex and dynamic process. The Two-Track Model of Bereavement, which served as the theoretical framework for this study, examines biopsychosocial reactions to bereavement (track I) and…

The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan

The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and…

Neuropathic cancer pain: prevalence, severity, analgesics and impact from the European Palliative Care Research Collaborative-Computerised Symptom Assessment study

BACKGROUND: Neuropathic pain causes greater pain intensity and worse quality of life than nociceptive pain. There are no published data that confirm this in the cancer population. AIM: We hypothesised that patients with neuropathic cancer pain had…

Opinions of members of the National Civil (Family Proceedings) and Criminal Courts in withholding or withdrawing of life support situations in pediatrics

INTRODUCTION: The possibility of sustaining life functions makes it difficult to distinguish between a dying patient and a patient with chances of survival, raising a dilemma for everyone around them. On the one side, continuing with life support…

Development and validation of the Communicating with Family about Brain Death Scale

This study reports development of a scale assessing communication with family about brain-dead organ donation. Two cross-sectional studies demonstrated scale validity. Tests of internal, external, and predictive validity were conducted using…

Good-parent beliefs of parents of seriously ill children

IMPORTANCE: Parents' beliefs about what they need to do to be a good parent when their children are seriously ill influence their medical decisions, and better understanding of these beliefs may improve decision support. OBJECTIVE: To assess parents'…

Mental Health Services for Parents Who Lost a Child to Cancer: If We Build Them, Will They Come?

PURPOSE: To examine bereavement mental health service use, barriers to use, and factors associated with use in parents bereaved by cancer. PATIENTS AND METHODS: A multicenter, cross-sectional study of 120 parents bereaved by cancer between 6 months…

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