Browse Items · Pediatric Palliative Care Library

Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot Study

BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and…

Utilization of Parallel Resources and Sociodemographic Factors in Treating Children with Complex Chronic Diseases: A Cross-Sectional Study

Children with complex chronic conditions have a high need for health and social care resources. Many parents explore parallel resources such as alternative therapies, associations, psychological support, private medical consultations, and other…

Putting drug use in context. Life-lines of African American women who smoke crack.

Seeing the Same Doctor: Determinants of Satisfaction with Specialty Care for Disabled Children

Comorbidity patterns and socioeconomic inequalities in children under 15 with medical complexity: a population-based study

BACKGROUND: Children with medical complexity (CMC) denotes the profile of a child with diverse acute and chronic conditions, making intensive use of the healthcare services and with special health and social needs. Previous studies show that CMC are…

Tags: 2020, Administrative data, Bmc Pediatrics, Carrilero N, Child, Comorbidity, Dalmau-Bueno A, García-Altés A, Health inequalities, Latent Class Analysis, Medical Complexity, September 2020 List, Socioeconomic Factors

Family function in families of children with Duchenne muscular dystrophy

This article investigates the relationships of child- and family-related variables with family function in families with children who have Duchenne muscular dystrophy. Child-related variables included level of disability (indicator: Barthel Index)…

Sibling death and death fear in relation to depressive symptomatology in older adults

Previously overlooked factors in elders' depressive symptomatology were examined, including death fear, sibling death, and sibling closeness. Participants were 150 elders (61 men, 89 women) aged 65-97 years with at least one sibling. Measures were…

Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario

OBJECTIVE: To describe the use of formal respite services among caregivers of children with cerebral palsy in Ontario and discuss the factors that may contribute to respite use and non-use. METHODS: A total of 468 caregivers were interviewed about…

Parental presence during invasive procedures and resuscitation: attitudes of health care professionals in Turkey

OBJECTIVES: An agreement among physician, nurse, and family on the issue and a solution developed by all will improve the quality of work. The aims of this study were to determine health care professionals' (physicians and nurses) attitude toward…

Non-compliance in children post-liver transplant. Who are the culprits?

Although non-compliance in pediatric liver transplants is known to be a major cause of late graft loss and patient mortality, follow-up seems inconsistent. As liver transplant becomes a luxury because of the shortage of organs, the need to maximize…

Parents' evaluation of developmental status: how well do parents' concerns identify children with behavioral and emotional problems?

This study was undertaken to determine which parental concerns are most associated with significant behavioral/emotional problems and the extent to which parents' concerns can be depended on in the detection of mental health problems. An additional…

Social and economic consequences of overweight in adolescence and young adulthood

BACKGROUND AND METHODS: Overweight in adolescents may have deleterious effects on their subsequent self-esteem, social and economic characteristics, and physical health. We studied the relation between overweight and subsequent educational…

Grandma's hands: parental perceptions of the importance of grandparents as secondary caregivers in families of children with disabilities

This study examines parental perceptions of the importance of grandparents as providers of routine care to children with disabilities and the impact of such assistance on parental well-being. Data are drawn from a survey and follow-up interactive…

Economic and psychologic costs for maternal caregivers of gastrostomy-dependent children

OBJECTIVE: To examine the economic and psychologic costs of care provided by maternal caregivers to children with gastrostomy tube (GT) feedings. STUDY DESIGN: We conducted a 3-site study of primary maternal caregivers of 101 chronically ill…

Relationship between three palliative care outcome scales

BACKGROUND: Various scales have been used to assess palliative outcomes. But measurement can still be problematic and core components of measures have not been identified. This study aimed to determine the relationships between, and factorial…

Association between religious and socio-economic background of parents of children with solid tumors and DNR orders

BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who…

Factors Influencing The Uptake Of Neonatal Bereavement Support Services – Findings From Two Tertiary Neonatal Centres In The Uk

Background

Research on perinatal bereavement services is limited. The aim of the study was to compare the uptake of bereavement support services between two tertiary neonatal units (NNU), and to investigate influencing factors.

Method

The medical…

End-of-Life Intensity for Adolescents and Young Adults With Cancer: A Californian Population-Based Study That Shows Disparities

Purpose Cancer is the leading cause of nonaccidental death among adolescents and young adults (AYAs). High-intensity end-of-life care is expensive and may not be consistent with patient goals. However,the intensity of end-of-life care forAYAdecedents…

Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment

Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial…

The use of the Impact on Sibling scale with families of children with chronic illness and developmental disability

OBJECTIVE: This study evaluated the Impact on Sibling scale, a six-item measure of parents' perception of the effects of a child's illness on healthy siblings. METHODS: Participants were 122 parents of a child with chronic illness, developmental…

Adolescent girls' and boys' preferences for provider gender and confidentiality in their health care

PURPOSE: To assess the influence of demographic variables and health risk status on adolescents' preferences and actual receipt of services regarding provider gender, sharing a physician with parents, and private examinations. METHODS: Data from…

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…

The use of mental health services in Ontario: epidemiologic findings

OBJECTIVE: To describe the distribution and predictors of mental health service use for a survey of Ontario household residents aged 15 to 64 years. METHOD: Service use was defined as any past-year contact with formal or informal health care…

Who are the children using hospice care?

PURPOSE: The purpose was to examine the characteristics of children who use hospice care. DESIGN AND METHODS: Using the Andersen Model of Health Services Use, California Medicaid administrative databases were analyzed to describe the characteristics…

What accounts for differences or disparities in pediatric palliative and end-of-life care? A systematic review focusing on possible multilevel mechanisms

OBJECTIVE: The goal was to clarify potential mechanisms underlying differences/disparities in pediatric palliative and end-of-life care. METHODS: We systematically searched online databases to identify articles relating to differences/disparities in…

Tags: 2008, Backlog, Child, Feudtner C, Humans, Journal Article, Linton JM, Outcome and Process Assessment (Health Care)/methods, Palliative Care/methods/standards, Pediatrics, Quality Of Health Care, Socioeconomic Factors, Terminal Care/methods/standards, United States

Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs

OBJECTIVE: To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care-related factors are associated with receiving transition…

The impact of consent on observational research: a comparison of outcomes from consenters and non consenters to an observational study

BACKGROUND: Public health benefits from research often rely on the use of data from personal medical records. When neither patient consent nor anonymisation is possible, the case for accessing such records for research purposes depends on an…

Tags: 2008, Backlog, Bmc Medical Research Methodology, Breast Neoplasms/pathology/therapy, Female, Humans, Informed Consent, Journal Article, Macleod U, Medical Records, Neoplasm Staging, Observation/methods, Questionnaires, Socioeconomic Factors, Watt GC

Early mortality in children with acute lymphoblastic leukemia in a developing country: the role of malnutrition at diagnosis. A multicenter cohort MIGICCL study

Tags: 2017, Adolescent, Age Factors, Alvarez-Rodriguez FJ, Amador-Sanchez R, Body Weights and Measures, Bolea-Murga V, Cardenas-Cardos R, Child, Child Preschool, Children, Comorbidity, de Diego Flores-Chapa J, Developing Countries, Developing World 2018 List, Dorantes-Acosta EM, Duarte-Rodriguez DA, Espinosa-Elizondo RM, Fajardo-Gutierrez A, Female, Flores-Lujano J, Flores-Villegas LV, Gil-Hernandez AE, Gonzalez-Bonilla CR, Humans, Infant, Infant Newborn, Jimenez-Hernandez E, Leukemia, Leukemia & Lymphoma, Male, malnutrition, Malnutrition/diagnosis/epidemiology, Martin-Trejo JA, Martinez-Avalos A, Medina-Sanson A, Mejia-Arangure JM, Mexico/epidemiology, Mortality, Nunez-Enriquez JC, Nunez-Villegas NN, Paredes-Aguilera R, Penaloza-Gonzalez JG, Perez-Saldivar ML, Population Surveillance, Precursor Cell Lymphoblastic Leukemia-Lymphoma/epidemiology/ mortality/therapy, Prevalence, Prognosis, Proportional Hazards Models, Rangel-Lopez A, Remission Induction, Reyes-Zepeda NC, Rivera-Luna R, Rodriguez-Zepeda MD, Socioeconomic Factors, Torres-Nava JR, Velazquez-Avina MM

Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study

PURPOSE: At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been…

Socioeconomic Status and Health Services Utilization for Children With Complex Chronic Conditions Liable to Receive Nurse-Led Services: A Cross-Sectional Study

AIM: To analyze the use of health services for children with severe chronic diseases, seeking to identify patterns of use according to sociodemographic and clinical conditions, and to identify unmet needs of care coordination that could benefit from…

Tags: 2019, Case Management, Child Health Services, Chronic Disease, Garcia-Pinero JM, Healthcare Disparities, Hospice And Palliative Care Nursing, Journal Of Nursing Scholarship, Kaknani-Uttumchandani S, Lupianez-Perez I, Morales-Asencio JM, Morales-Gil IM, multimorbidity, Pediatric Nursing, Perez-Ardanaz B, September 2019 List, Socioeconomic Factors

Socioeconomic differences in childhood hospital inpatient service utilisation and costs: prospective cohort study

STUDY OBJECTIVE: To examine the association between socioeconomic position at the time of birth and the use and cost of hospital inpatient services during the first 10 years of life. DESIGN: Analysis of a database of linked birth registrations,…

The impact of parental status on the risk of completed suicide.

BACKGROUND: Although some studies suggest that parenthood is associated with a reduced suicide risk, the impact of children on parental suicide has rarely been documented. METHODS: This study investigates the impact of parental status on the risk of…

Buffers for the bereaved: the impact of social factors on the emotional health of bereaving parents

Emotional health of bereaving parents (N = 62; control N = 56) were explored 5 years after the death of a child (age 0-12) in Israel. The Symptom Check List-90 was utilized as the primary measurement instrument. Comparisons to controls according to…

Addressing transition to adult health care for adolescents with special health care needs

OBJECTIVE: To determine the factors associated with addressing the transition from pediatric to adult-oriented health care among US adolescents with special health care needs. METHODS: Data for 4332 adolescents, 14 to 17 years of age, from the…

Period prevalence of epilepsy in children in BC: a population-based study

BACKGROUND: Most estimates of the prevalence of seizure disorders in Canada derive from national surveys which differ in sampling and case-finding methods. This study used health care utilization data to make a population-based estimate of the…

Chronic abdominal pain in children: an update

Despite the fact that chronic abdominal pain is a common complaint in children and adolescents, the complexity of this condition only recently has begun to be understood. This article summarizes new advances in the diagnosis, conceptualization, and…

Gender-specific factors in the utilization of medical services during adolescence

Although adolescents suffer from a variety of complaints, they do not often consult a doctor. Following a high rate of medical consultation during infancy and childhood, the rate dramatically decreases at the age of 10 and increases again around the…

Contrasting emotional approach coping with passive coping for chronic myofascial pain

Passive or emotion-focused coping strategies are typically related to worse pain and adjustment among chronic pain patients. Emotional approach coping (EAC), however, is a type of emotion-focused coping that appears to be adaptive in some nonpain…

Sibling Mortality Burden in Low-Income Countries: A Descriptive Analysis of Sibling Death in Africa, Asia, and Latin America and the Caribbean

In high-income countries, emerging research suggests sibling bereavement can have significant health and life course consequences for young people. Yet, we know far less about its burden in lower-income countries. Due to higher fertility and…

Use of health services by chronically ill and disabled children

Hospitalization and use of outpatient health care services during a 1-year period by 369 pediatric patients with cystic fibrosis, cerebral palsy, myelodysplasia, or multiple physical handicaps and 456 randomly selected children without congenital…

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