Browse Items · Pediatric Palliative Care Library

Comparison of actigraphy with a sleep protocol maintained by professional caregivers and questionnaire-based parental judgment in children and adolescents with life-limiting conditions

Background: Actigraphy offers a promising way to objectively assess pediatric sleep. Aim of the study was investigating the extent to which actigraphy used in children and adolescents with life-limiting conditions is consistent with two other…

Complex palliative care and transition: a case review

This case study assesses the effect that health and social care had on the chronic life-limiting condition of a young man going through transition from children's to adult services. He was taken into foster care at 16 years old and placed with his…

Tags: 2007, Adolescent, Adult, Backlog, Bowen M, Child, Chronic Disease, Continuity Of Patient Care, Humans, Journal Article, Male, Paediatric Nursing, Palliative Care

Congenital neurodevelopmental diagnoses and an intensive care unit: defining a population

OBJECTIVE: To identify and describe the population of children with congenital or perinatally acquired neurodevelopmental diagnoses in a pediatric intensive care unit and to assess the nature and extent of their utilization of critical care…

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…

Control beliefs, coping efforts, and adjustment to chronic pain

This study examined factors hypothesized to influence adaptation to chronic pain in 118 patients who were interviewed to gauge adjustment (psychological functioning, medical services utilization, and activity level) and several widely discussed…

Tags: 1991, Adaptation, Backlog, Chronic Disease, Female, Humans, Internal-External Control, Jensen MP, Journal Article, Journal Of Consulting And Clinical Psychology, Karoly P, Male, Middle Aged, Pain, Pain Measurement, Psychological, Sick Role

Coping with chronic pain

Many models of pain give coping an important role in understanding adaptation to chronic pain. Among these, Lazarus and Folkman's cognitive-phenomenological model of stress and coping provides a theoretical framework to conceptualise stress phenomena…

Coping with Dravet syndrome: parental experiences with a catastrophic epilepsy

The aim of this study was to investigate how parents cope with and care for a child with Dravet syndrome, a severe myoclonic epilepsy with three distinct stages. Twenty-four parents of children with Dravet syndrome participated in a semi-structured…

Coping, self-efficacy and psychiatric history in patients with both chronic widespread pain and chronic fatigue

OBJECTIVE: To investigate the relationship of coping style and self-efficacy to functional impairment in a group of patients with both chronic widespread pain (CWP) and chronic fatigue, as well as the possible mediating role of psychiatric diagnosis.…

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

Differences On Psychosocial Outcomes Between Male And Female Caregivers Of Children With Life-limiting Illnesses

This secondary analysis of data examined the psychosocial outcomes of meaning in caregiving, self-esteem, optimism, burden, depression, spirituality, and posttraumatic growth in 273 parents caring for children with life-limiting illnesses to (a)…

Discontinuation of follow-up care for young people with complex chronic conditions: conceptual definitions and operational components

BACKGROUND: A substantial proportion of young people with Complex Chronic Conditions (CCCs) experience some degree of discontinuation of follow-up care, which is an umbrella term to describe a broken chain of follow-up. Discontinuation of follow-up…

Tags: 2021, Adolescent, Aftercare, BMC Health Services Research, Bratt EL, Chronic Disease, Continuity of patient care: patient transfer, Delivery of Health Care, February 2022 List, Goossens E, Health Personnel, Johansson B, Lost to follow-up, Moons P, Skogby S, Young Adult

Efficacy and optimal dose of daily polyethylene glycol 3350 for treatment of constipation and encopresis in children

OBJECTIVE: To determine efficacy, safety, and optimal dose of a laxative, polyethylene glycol (PEG) 3350, in children with chronic constipation. STUDY DESIGN: Children with chronic constipation (n = 24) were treated with PEG for 8 weeks at an initial…

Enabling the transition to hospice through effective palliative care

The end of life has changed dramatically in recent years as life expectancies have increased, chronic disease rates have risen, and families, health care systems, and society have changed. As technology has advanced, death too often has become viewed…

Enhancing the care of children with chronic diseases through the narratives of patient, physician, nurse and carer

We tested the hypothesis that a narrative approach may enhance a bio-psycho-social model (BPS) in caring for chronically ill children. Forty-eight narratives were collected from 12 children with six different medical conditions, their mothers,…

Tags: 2020, bio-psycho-social model, Bruzzese D, Children, Chronic Disease, Continisio GI, Coppola C, Guarino A, January 2021 List, narrative medicine, Nunziata F, Qualitative Research, Scandinavian Journal Of Psychology, Spagnuolo MI

Ensuring that difficult decisions are honored--even in school settings

Evaluating a novel hospital-based online health community to address palliative and psychosocial care factors for chronically ill adolescent and young adult patients

OBJECTIVES: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack…

Evaluating the Cost-Effectiveness of Home-Based Palliative Care for Children with Special Health Care Needs: A Review Study

Introduction: Due to the increased survival of children with chronic and complex diseases, transferring a part of care provision to home and harnessing the family’s potential with the aim of shortening the length of stay and returning the child to…

Tags: 2020, Chronic Disease, cost effectiveness, Eshaghian-dorcheh A, Esmaielzadeh F, home care services, International Journal of Pediatrics, May 2020 List, Pediatric Palliative Care, Rasouli M, Tahmasebi M, Zandi M

Exploring the Palliative Care Needs of Children in Refugee Settlements in Uganda

Background/aims: Palliative care for children should be provided wherever the child is who needs care, whether that be at home, at school, in a clinic, in a hospital, in a hospice, as well as including in humanitarian settings. It should be provided…

Factors related to the quality of life in adolescents with chronic pain

OBJECTIVE: This study examined the relationships between pain characteristics, psychosocial factors, and quality of life among adolescents with chronic pain that existed for at least 3 months, either recurrently (ie, pain with pain-free intervals) or…

Financial effects for families after the death of a disabled or chronically ill child: a neglected dimension of bereavement

AIM: To investigate the financial circumstances of families whose child had died after a long-term illness and the factors contributing to financial difficulties. RESEARCH METHODS: Qualitative exploration involved semi-structured interviews with a…

Tags: 2002, Backlog, Bereavement, Child, Child: Care, Health and Development, Chronic Disease, Corden A, Disabled Children, Employment, Family, Humans, Income, Journal Article, Parent caregivers, Sainsbury R, Sloper P

Functional electrical stimulation therapy for recovery of reaching and grasping in severe chronic pediatric stroke patients

Stroke affects 2.7 children per 100,000 annually, leaving many of them with lifelong residual impairments despite intensive rehabilitation. In the present study the authors evaluated the effectiveness of 48 hours of transcutaneous functional…

Gabapentin Successfully Manages Chronic Unexplained Irritability in Children With Severe Neurologic Impairment

Neurologically impaired children have an increased frequency of recurrent pain and irritability that persist in some despite comprehensive evaluation and management of possible pain sources. We hypothesized that visceral hyperalgesia was a source of…

Goal-Concordance in Children with Complex Chronic Conditions

Abstract Objectives: To characterize delivery of goal-concordant end-of-life (EOL) care among children with complex chronic conditions and to determine factors associated with goal-concordance. Study design: This was a retrospective review of goals…

Goals of Care Among Parents of Children Receiving Palliative Care

Importance: While knowing the goals of care (GOCs) for children receiving pediatric palliative care (PPC) are crucial for guiding the care they receive, how parents prioritize these goals and how their priorities may change over time is not known.…

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'…

Healthcare Utilization and Spending for Constipation in Children With Versus Without Complex Chronic Conditions

OBJECTIVES: The aim of the study was to examine the prevalence of diagnosis and treatment for constipation among children receiving Medicaid and to compare healthcare utilization and spending for constipation among children based on number of complex…

Hidden consequences of success in pediatrics: parental health-related quality of life--results from the Care Project

CONTEXT: The number of parents who care for a chronically ill child is increasing. Because of advances in medical care, parental caring tasks are changing. A detailed description of parental health-related quality of life will add to the…

Home care needs of paediatric palliative patients perceived by professionals: A grounded theory

Tags: 2023, Atenci—n Domiciliaria de Salud, Chronic Disease, Continuidad de la Atenci—n al Paciente, Continuity Of Patient Care, Cuidados paliativos, Enfermedad Cr—nica, Enfermeria Clinica, home care services, Home Nursing, Investigaci—n cualitativa, June 2022 List, Paediatrics, Palliative Care, Pediatr’a, Qualitative Research, Rodr’guez-Su‡rez CA, Santana-Medina J

How Do Children Die in PICUs Nowadays? A Multicenter Study From Spain

OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses. DESIGN: Prospective multicenter observational study. SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI…

Tags: 2020, Agra-Tunas C, brain dead, Chronic Disease, Critically Ill, Death, July 2020 List, Neuromuscular Disease, Pediatric Critical Care Medicine, Pediatric Intensive Care Unit, Picu, respiratory disease, Rodriguez Merino E, Rodriguez-Ruiz E

How Do Children With Medical Complexity Die? A Scoping Review

Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is…

How do teens view the physical and social impact of asthma compared to other chronic diseases?

We surveyed cognitively normal teens with and without chronic illness regarding the perceived physical and social impact of various chronic diseases including asthma. The overall physical impact of asthma was perceived equivalently to diabetes and…

Tags: 2006, Adolescent, Adolescent Transitions, Asthma/psychology, Backlog, Cheung C, Chronic Disease, Female, Humans, Journal Article, Male, Motor Activity, Questionnaires, Social Adjustment, Spier S, The Journal Of Asthma : Official Journal Of The Association For The Care Of Asthma, Wirrell E

I am not the kind of woman who complains of everything': illness stories on self and shame in women with chronic pain

In this study, we explore issues of self and shame in illness accounts from women with chronic pain. We focused on how these issues within their stories were shaped according to cultural discourses of gender and disease. A qualitative study was…

Tags: 2004, Adult, Attitude To Health, Backlog, Chronic Disease, Female, Feminism, Humans, Isaksen LW, Journal Article, Malterud K, Middle Aged, Narration, Pain/psychology, Social science & medicine, Werner A

Impact of a chronic illness in childhood: siblings' perceptions

This project investigated siblings' perceptions of family disruption when a brother or sister had cystic fibrosis (CF) or asthma. Data were gathered by phone interviews and questionnaires. Phone interviews were conducted with siblings of chronically…

Tags: 1996, Adolescent, Attitude To Health, Backlog, Child, Chronic Disease, Cystic Fibrosis, Derouin D, Female, Humans, Issues In Comprehensive Pediatric Nursing, Jessee PO, Journal Article, Male, Nursing Methodology Research, Pediatric Nursing, Questionnaires, sibling bereavement, Sibling Relations

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…

Implementation of an Innovative Palliative Care Screening Tool in the Pediatric Intensive Care Unit: A Pilot Study

Background: Pediatric palliative care (PPC) can improve the quality of care provided to critically ill children with a high risk of morbidity and mortality. Early identification of patients admitted to the pediatric intensive care unit (PICU) who may…

Initial experiences with medicinal extracts of cannabis for chronic pain: results from 34 'N of 1' studies

Three Cannabis Based Medicinal Extracts (CBMEs) for sublingual use became available in 2000. A total of 34 'N of 1' studies were undertaken using this novel therapy for patients with chronic, mainly neuropathic, pain and associated symptoms to…

Is there any evidence to support the use of anti-depressants in painful rheumatological conditions? Systematic review of pharmacological and clinical studies

The aim of this study was to review the evidence supporting the use of anti-depressants in painful rheumatological conditions. A systematic review of papers published between 1966 and 2007, in five European languages, on anti-depressants in…

Ketamine in chronic pain management: an evidence-based review

Ketamine has diverse effects that may be of relevance to chronic pain including: N-methyl-D-aspartic acid, alpha-amino-3-hydroxy-5-methyl-4-isoxazolepropionic acid, kainate, gamma-aminobutyric acid(A) receptors; inhibition of voltage gated Na(+) and…

Tags: 2003, Anesthesia & Analgesia, Backlog, Chronic Disease, Cousins MJ, Evidence-based Medicine, Excitatory Amino Acid Antagonists/therapeutic use, Hocking G, Humans, Journal Article, Ketamine/pharmacology/therapeutic use, Methadone, Pain/drug therapy/etiology

Life-Limiting Conditions at a University Pediatric Tertiary Care Center: A Cross-Sectional Study

BACKGROUND: The increasing number of children with life-threatening and life-limiting conditions requires an individualized approach and additional supportive care in hospitals. However, these patients' characteristics and their prevalence in a…

Tags: 2018, Bosch A, Chronic Disease, End-of-life Care, Frenzel H, Hospitals, January 2018 List, Journal of Palliative Medicine, Krude H, Life-limiting Conditions, Palliative Care, Pediatrics, Reindl T, Thalemann R, Wager J, Zernikow B

Low prevalence of palliative care and ethics consultations for children with chronic critical illness

Medical advances over the past two decades have increased the numbers of children who survive serious conditions. Mortality from premature birth and genetic syndromes has improved such that more clinicians offer, and more families request,…

Browse Items (170 total)