Browse Items · Pediatric Palliative Care Library

Intrathecal baclofen therapy as treatment for spasticity and dystonia: Review of cases in a pediatric palliative care unit

Introduction: Patients managed in the Pediatric Palliative Care Integral Unit (PPCIU) have serious neurological conditions that involve significant damage at central nervous system level. The movement disorder is a very common clinical problem and…

Tags: 2024, Adolescent, Adult, Alba RM, alert, antibiotic agent/dt [Drug Therapy], antibiotic agent/iv [Intravenous Drug Administration], Article, Baclofen/dt [drug Therapy], baclofen/po [Oral Drug Administration], baclofen/pv [Special Situation for Pharmacovigilance], baclofen/tl [Intrathecal Drug Administration], benzodiazepine derivative/dt [Drug Therapy], benzodiazepine derivative/po [Oral Drug Administration], benzodiazepine derivative/pv [Special Situation for Pharmacovigilance], botulinum toxin/dt [Drug Therapy], Brain Damage, catheter, Cerebral Palsy, Child, Clinical Article, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], Congenital Malformation, continuous infusion, de Noriega Echevarria I, Descriptive Research, diazepam/dt [Drug Therapy], disease classification, drug dose increase, drug dose reduction, dystonia/dt [Drug Therapy], enzyme deficiency, Errasti VI, Female, glutaric aciduria, glutaric aciduria type 1, Gross Motor Function Measure, Human, implantation, intrathecal baclofen pump/am [Adverse Device Effect], intrathecal pump, Male, medical device malfunction/co [Complication], meningitis/dt [Drug Therapy], nerve degeneration, Neurologia, November List 2024, Palliative Therapy, pantothenate kinase/ec [Endogenous Compound], Pediatrics, Perez MMA, poly malformative syndrome, Preschool Child, Puertas MV, reservoir, Retrospective Study, School Child, spasticity/dt [Drug Therapy], STATA v16.0, Syndrome, tizanidine/dt [Drug Therapy], tizanidine/po [Oral Drug Administration], tizanidine/pv [Special Situation for Pharmacovigilance], trihexyphenidyl/dt [Drug Therapy], trihexyphenidyl/po [Oral Drug Administration], trihexyphenidyl/pv [Special Situation for Pharmacovigilance], Young Adult

A Nationwide Study to Evaluate Accessibility to Specialized Pediatric Palliative Care in Italy-Patients, Needs, and Critical Issues: The PalliPed Study

Background: PalliPed is the first Italian nationwide project aimed at describing the characteristics of patients accessing specialized pediatric palliative care (PPC) and their families, in the main care settings (hospice, home care, and hospital).…

Tags: 2024, Adolescent, Agosto C, Albanesi B, Amarri S, Article, Avagnina I, Barbugian E, Basile R, Bellagamba O, Bellini F, Beltrami C, Benini F, Bignamini E, Bolognani M, Campagna M, Carraro C, Catalano G, Catalano I, Celentano L, Child, Controlled Study, De Marinis MG, De Tommasi V, De Zen L, Di Nunzio S, Diagnosis, Divisic A, Dolcini A, family support, Fasson A, Franchi F, Ghiraldo G, Giacomelli L, Grigolon E, Health Care Personnel, Home Care, Human, Iadelica A, Infant, Italy, Journal of Palliative Medicine, Lazzarin P, Maghini I, Manfredini L, Marinetto A, Maternal care, Mazzoni E, Mercante A, Michelotto E, Mirone R, Molinaro G, Moliterni P, Moro N, October List 2024, Orofino R, Palliative Therapy, Paone G, Papa S, Patient Referral, Pediatrician, Pellegatta F, Peruselli C, Piccolruaz UV, Prenatal Care, Raspi M, Roverato B, Salata M, Santini A, Schiavon B, Soffritti S, Taucar V, terminal disease, Thaler M, Therapy, Tornesello A, Uez F, Vaccher S, Vezzoli C, Young Adult, Zanin A, Ziggiotto S

PAEDIATRIC TO ADULT PALLIATIVE CARE - IS THERE A PRESCRIPTION FOR TRANSITION?

Objectives The number of children in the UK living with a life-limiting condition is rising year-on-year.1 The average life expectancy associated with many of these conditions also continues to increase and, consequently, more children are surviving…

Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review

Background: The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a…

Non-invasive respiratory support in children and young adults with complex medical conditions in pediatric palliative care

Objective: Dyspnoea and sleep-disordered breathing (SDB) are common in children with life-limiting conditions but studies on treatment with non-invasive ventilation (NIV) or continuous positive airway pressure (CPAP) are scarce. The aim of the study…

Feasibility of a Serious Illness Communication Program for Pediatric Advance Care Planning

Importance: Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon. Objectives: To determine the…

The impact of specialized pediatric palliative care on advance care planning and healthcare utilization in children and young adults: a retrospective analysis of medical records of in-hospital deaths

Background: Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC)…

Development of Specialty-Based Pediatric Palliative Care Clinics

Outcomes: 1. Utilizing a case-based approach, participants will be able to identify three different models to develop pediatric palliative care clinics. 2. Utilizing the examples and framework from this presentation, participants will be able to…

National characteristics of emergency care for children with neurologic complex chronic conditions

Abstract Introduction: Most pediatric emergency care occurs in general emergency departments (GED), where less pediatric experience and lower pediatric emergency readiness may compromise care. Medically vulnerable pediatric patients, such as those…

Psychiatry and interdisciplinary pediatric palliative care: a scoping review

BACKGROUND: Current literature highlights the need for psychological support of adolescents and young adults (AYAs) with serious illness, for which pediatric palliative care (PPC) teams are often responsible. This scoping review aims to inventory the…

Tags: 2024, Adolescent, adolescents and young adults (AYAs), Advance Care Planning, Annals Of Palliative Medicine, Child, Cress AE, Humans, Interdisciplinary palliative care (interdisciplinary PC), May List 2024, Medical Oncology, Neoplasmspsychology, Palliative Care, Palliative Caremethods, Pediatric Palliative Care (ppc), Psychiatry, Psychology, Young Adult

Investigation of the impact of paediatric hospices on the quality of care of paediatric nurses

BACKGROUND: The establishment of paediatric hospices improves the quality of care of paediatric nurses. AIM: To examine the effect of establishing paediatric hospices on the quality of care of paediatric nurses. METHOD(S): Data was collected between…

Tags: 2024, Adult, April List 2024, Bor NA, Child, Female, Hayli CM, Hospice, Hospice Care, Hospices, Human, International Journal of Palliative Nursing, Kosem DD, Male, Nurse, pediatric nurse, Pediatric Nursing, Questionnaire, Young Adult

Use of paclitaxel to successfully treat children, adolescents, and young adults with Kaposi sarcoma in southwestern Tanzania

Treating Kaposi sarcoma (KS) in children, adolescents, and young adults (AYA) remains a challenge in low-and middle-income countries (LMIC) where chemotherapy options and availability are limited. We describe a retrospective cohort review of…

Tags: 2021, 2023 SE5 - Low Resource Setting, Adinani H, Adolescent, Adult, antiretroviral therapy, antiretrovirus agent/dt [Drug Therapy], Article, Bacha J, bleomycin/cb [Drug Combination], bleomycin/dt [Drug Therapy], bleomycin/iv [Intravenous Drug Administration], Campbell L, cancer combination chemotherapy, Cancer Palliative Therapy, Cancer Recurrence, Cancer Survival, Child, Children, Cohort Analysis, dexamethasone/dt [Drug Therapy], doxorubicin/cb [Drug Combination], doxorubicin/dt [Drug Therapy], drug contraindication, El-Mallawany NK, Female, Follow Up, Human, Human immunodeficiency virus infection/dt [Drug Therapy], Kaposi sarcoma/dt [Drug Therapy], lack of drug effect, long term survival, Major Clinical Study, Male, Mehta P, multiple cycle treatment, Paclitaxel, paclitaxel/dt [Drug Therapy], Quality Of Life, Retrospective Study, Slone J, Tanzania, treatment duration, Treatment Outcome, Treatment Planning, trend study, vincristine/cb [Drug Combination], vincristine/dt [Drug Therapy], vincristine/iv [Intravenous Drug Administration], virus load, Young Adult

Shutting the World Out': An Interpretative Phenomenological Analysis Exploring the Paternal Experience of Parenting a Young Adult with a Developmental Disability.

BACKGROUND: An in-depth exploration of the experience of midlife fathers of developmentally disabled young adults (aged 19-32 years) was motivated by a dearth of research in this area (McKnight, PsyPAG Quarterly, 94, 2015, 10)., METHOD: Five fathers…

Tags: *Adult Children, *Developmental Disabilities, *Fathers/px [Psychology], *Parenting/px [Psychology], 2018, 2023 SE4 - Parent Perspectives, Adult, Eatough, Virginia, Humans, Journal Of Applied Research In Intellectual Disabilities, Male, Middle Aged, Qualitative Research, Thackeray, Lisa A, Young Adult

"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions

BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known…

Sharing care at the End of life for adolescent patients with neuro-disability: A case series

Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to…

Are we on the same page? Exploring pediatric patients' involvement with advance care planning

[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]

INTRODUCTION: The Pediatric Palliative Screening Scale (PaPaS Scale) was designed to help professionals to identify life-limiting or life-threatening children/young people with complex chronic conditions who would benefit from pediatric palliative…

Tags: 2023, Acta Médica Portuguesa, Adolescent, Child, Chronic Disease, Humans, July List 2023, Machado MdC, Needs Assessment, Portugal, Psychometrics, Reproducibility of Results, Simoes MJP, Surveys And Questionnaires, Tavares F, Translations, Young Adult

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…

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…

The Marital Implications of Bereavement: Child Death and Intimate Partner Violence in West and Central Africa

In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13…

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…

Teetering On a Cliff Edge: Transitioning Between Paediatric and Adult Hospice Services

Background The transition process from paediatric to adult hospice care is uniquely challenging for young adults living with non-malignant life-limiting conditions as they are often declining in health with increasing dependence on their families for…

Transforming Care for Young Adults with Complex and Life-Limiting Conditions

Background More young people with complex life-limiting conditions are living into adulthood, generating greater demand for appropriate care (Fraser, Gibson-Smith, Jarvis, et al., 2021. Palliat Med. 35:1641). We implemented Project ECHO (Extension of…

Tags: 2022, Adult, BMJ Supportive and Palliative Care, Child, conference abstract, Horsley A, Human, immersion, James C, Learning, Logic, March List 2023, Peer Group, quantitative analysis, Shouls S, Young Adult

“It’s brilliant! It’s working! It’s needed!” A Hospice Short Break Innovation for Young Adults

Background More young adults with life-limiting conditions are surviving into adulthood needing adult palliative care (Gibson- Smith, Jarvis, Norman et al., 2021). The evidence on appropriate service models is sparse (Clark & Fasciano, 2015. Am J…

Young People and Transition at a Hospice for Adults

Background The hospice recognised a gap in services for patients, relatives and carers aged 18-30 and that services should be more age appropriate (Smith, Mooney, Cable, & Taylor (eds.). Teenage Cancer Trust, 2016). In addition, young people are…

Tags: 2022, Adult, BMJ Supportive and Palliative Care, Child, conference abstract, Finch F, Hospice, Human, March List 2023, relative, Skill, Voice, worker, Young Adult

Factors Affecting Hospice Use Among Adolescents and Young Adult Cancer Patients

Background/Objective: Compared to existing studies on end-of-life care of mid- to older-aged patients diagnosed with cancer, there is a paucity of research on adolescents and young adult (AYA) patients. Guided by the Anderson's Behavioral Model for…

Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer

Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We…

Patient, Family, and Clinician Perspectives on Location of Death for Adolescents and Young Adults With Cancer

PURPOSE: Adolescents and young adults (AYAs) with cancer have high rates of hospital deaths. It is not clear if this reflects their preferences or barriers to dying at home. METHODS: Between December 2018 and January 2021, we conducted in-depth…

Location of death and hospice use in children with cancer varies by type of health insurance

BACKGROUND: Disparities in end-of-life (EOL) care for children with cancer remain understudied. We addressed this gap by examining patterns of EOL care, with a focus on location of death and hospice utilization. METHODS: We used MarketScan - a…

The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility

BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that…

Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer

For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established,…

Family experience in a regional participant contact registry for research on intellectual disability

Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather…

What constitutes meaningful engagement for patients and families as partners on research teams?

Objective There is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have…

Relationships and Resources Supporting Children With Serious Illness and Their Parents

OBJECTIVE: Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when their conditions are severe and impact their quality of life and stress. This includes not only expert medical care but…

Tags: Adolescent, Child, Chronic Disease, Palliative Care, Parents, Quality of Life, 2022, Bogetz JF, DeCourcey DD, Health Personnel, Hospital Pediatrics, Humans, November 2022 List, Partin L, Revette A, Young Adult

From Pediatric to Adult Palliative Care Service: The Continuity of Care

Background/aims: Define a gradual transition from pediatric to adult palliative care able to support adolescent patients (pts) with chronic and progressive diseases and their family.

Tags: 2022, Adolescent, Adult, Amarri S, Child, conference abstract, Donati CM, Mazzoni E, Mengoli F, Palliative Medicine, Paone G, Psychologist, Ronchi L, September 2022 List, Social Worker, Valenti D, Young Adult

The DIGNITAL Study

Background: Dignity Therapy (DT) is a validated psycho-therapeutic intervention designed to influence a sense of meaning and purpose for individuals and their families. DT is well received by patients and family members, with research identifying…

Tags: 2022, Adult, Child, Clinical Trial, conference abstract, Consultation care, Kellehear A, LanFranchi V, McSherry W, Palliative Medicine, Rodriguez A, September 2022 List, Smith J, Tatterton M, Villa-Uriol MC, Watts L, Yaziji N, Young Adult

Polypharmacy in children and young people with life-limiting conditions from 2000-2015: a repeated cross-sectional study in England

CONTEXT: Polypharmacy is often appropriate for children with life-limiting conditions but is associated with an increase in hospitalisations and inappropriate prescribing, and can affect the quality of life of children and their families as they…

Experience of Perinatal Death From the Father's Perspective

BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. OBJECTIVE: The aim of the study was to understand and describe the meaning of…

Tags: 2019, 2022 Special Edition 1 - Parent Perspectives, Adolescent, Colombia, Emotions, Fathers, Grief, Infant, Lizcano PLDM, Male, Middle Aged, Moreno Fergusson ME, Newborn, Nursing Research, Palacios AM, Perinatal Death, Qualitative Research, Young Adult

Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals

OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December…

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

Browse Items (231 total)