Browse Items · Pediatric Palliative Care Library

Youth and young adults with cerebral palsy: their use of physician and hospital services

OBJECTIVES: To examine patterns of health care utilization among youth and young adults who have cerebral palsy (CP) and to provide information to guide the development of health services for adults who have CP. DESIGN: This study analyzed health…

Young people's satisfaction of transitional care in adolescent rheumatology in the UK

BACKGROUND: To examine the quality of transitional health care from the perspectives of young people with juvenile idiopathic arthritis (JIA) and their parents. METHODS: Adolescents with JIA and their parents were recruited from 10 major UK…

Young people with chronic illness: the approach to transition

As increasing numbers of young people with chronic illness reach adulthood, their ongoing medical care must evolve to be delivered in an adult rather than paediatric setting, a process known as transition. Towards this goal, increasing numbers of…

Tags: 2007, Adolescent, Adolescent Transitions, Adult, Age Factors, Australia, Backlog, Chronic Disease, Continuity Of Patient Care/organization & Administration, Delivery of Health Care/organization & administration, Douglass JA, Humans, Internal Medicine Journal, Journal Article, Kennedy A, Pediatrics, Sawyer SM, Self Care, Sloman F

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

Young adults as users of adult healthcare: experiences of young adults with complex or life-limiting conditions

Awareness is growing that young adults may have distinctive experiences of adult healthcare and that their needs may differ from those of other adult users. In addition, the role of adult health teams in supporting positive transitions from…

Tags: 2014, Adult, Attitude Of Health Personnel, Backlog, Beresford B, Clinical Medicine (london, England), Female, Great Britain, Health Services, Humans, Inpatients, Journal Article, Male, Minority Groups, Parents, Stuttard L, Young Adult

Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood

PURPOSE: To assess the course of life of young adults who grew up with a chronic or life-threatening disease, and to compare their course of life with that of peers from the general population. Optimal transition from pediatric to adult health care…

Withholding nutrition from seriously ill newborn infants: a parent's perspective

Wilson's disease: a longitudinal study of psychiatric symptoms

One hundred and twenty-nine cases of Wilson's disease (WD) were assessed at index admission and two follow-ups (F1 and F2) on a range of clinical and biochemical variables. The commonest psychiatric symptoms throughout were incongruous behavior,…

Widespread pain in fibromyalgia is related to a deficit of endogenous pain inhibition

A deficit of endogenous pain inhibitory systems has been suggested to contribute to some chronic pain conditions, one of them being fibromyalgia. The aim of the investigation was to test whether endogenous pain inhibitory systems were activated by a…

Who Will Speak for Me? Disparities in Palliative Care Research with "unbefriended" Adolescents Living with HIV/AIDS

Objective: To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study. Method: A longitudinal, single-blinded, multisite randomized controlled trial, conducted…

What's Missing in Missing Data? Omissions in Survey Responses among Parents of Children with Advanced Cancer

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…

What works for therapists conducting family meetings: treatment integrity in family-focused grief therapy during palliative care and bereavement

The purpose of this study was to evaluate the treatment integrity of Family-Focused Grief Therapy (FFGT), a preventive intervention designed for families at high risk of poor functioning during palliative care and bereavement. From the 81 families…

What influences parents' decisions to limit or withdraw life support?

OBJECTIVE: Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the…

What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida

OBJECTIVES: To address the lack of synthesis regarding the factors, processes, and outcomes specific to the transition from child-centered to adult-centered health care for people with cerebral palsy (CP) and spina bifida (SB); more specifically, to…

Tags: 2007, Adult, Archives Of Physical Medicine And Rehabilitation, Backlog, Barden WS, Binks JA, Burke TA, Cerebral Palsy/rehabilitation, Health Services for the Aged, Humans, Journal Article, Patient Transfer/organization & administration, Spinal Dysraphism/rehabilitation, United States, Young NL

What do transplant physicians think about palliative care? A national survey study

Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT).…

What do plasma beta-endorphin levels reveal about endogenous opioid analgesic function?

What Are Palliative Care Physicians For Adults Taught On Palliative Care For Children? Paediatric Aspects In Palliative Care Curricula For Adults.

BACKGROUND:
Children suffering from life limiting diseases are frequently cared for by adult palliative care teams due to missing paediatric structures in that field. However it is questionable whether palliative care curricula for physicians…

Tags: 2016, Adult, Child, Curriculum, Education Medical Continuing, Germany, Gottschling S, Gronwald BM, Humans, Klinische Pädiatrie, May 2016 List, Neoplasms/psychology, Neoplasms/therapy, Palliative Care, Patient Care Team, Pediatrics/education, Schiessl C

Welcoming expertise: Bereaved parents' perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit

BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new…

We would have missed out so much had we terminated': What fathers of a child with Down syndrome think about current non-invasive prenatal testing for Down syndrome.

Non-invasive prenatal testing (NIPT) allows early, accurate diagnosis of Down syndrome that has resulted in increased terminations. This qualitative study involved in-depth interviews of fathers of children with Down syndrome about their views on the…

Tags: *Choice Behavior, *Down Syndrome/di [Diagnosis], *Father-Child Relations, *Fathers, *Health Knowledge, Attitudes, Practice, *Noninvasive Prenatal Testing, 2019, 2023 SE4 - Parent Perspectives, Adult, Barton, Rebecca, Child, How, Bethea, Humans, Journal of Intellectual Disabilities, Male, Qualitative Research, Smidt, Andy, Valentin, Chelsea, Wilson, Nathan J

Vulnerable Populations Receiving Palliative Radiation in a Children's Hospital: Reporting on the Underreported

Purpose/Objective(s): Few studies have examined the use of palliative radiation therapy (RT) in the pediatric population. This single institution study is one of the largest series reported of palliative RT practice patterns prior to and within the…

Vulnerability and resilience to combat exposure: can stress have lifelong effects?

The purpose of this study was to examine whether appraisals of desirable and undesirable effects of military service mediated the effect of combat stress on posttraumatic stress disorder (PTSD) symptoms in later life in 1,287 male veterans, aged…

Vulnerability and Agency across Treatment-Seeking Journeys for Acutely Ill Children: How Family Members Navigate Complex Healthcare Before, During and After Hospitalisation in A Rural Kenyan Setting

BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations…

Volunteer Activity In Specialist Paediatric Palliative Care: A National Survey

OBJECTIVE: To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. METHOD: Cross-sectional survey using a web-based questionnaire. SETTING: UK specialist paediatric…

Views of adolescents and parents on pediatric research without the potential for clinical benefit

View through a window may influence recovery from surgery

Records on recovery after cholecystectomy of patients in a suburban Pennsylvania hospital between 1972 and 1981 were examined to determine whether assignment to a room with a window view of a natural setting might have restorative influences.…

Variations in adult congenital heart disease training in adult and pediatric cardiology fellowship programs

OBJECTIVES: The purpose of this study was to evaluate adult congenital heart disease (CHD) training among U.S. cardiology fellowship programs. BACKGROUND: Although training recommendations for caring for adults with CHD exist, the educational…

Variations among Institutional Review Board reviews in a multisite health services research study

OBJECTIVE: To document the Institutional Review Board (IRB) review process and to explore the impact of different patient notification procedures. DATA SOURCES/STUDY SETTING: Review of IRB application and correspondence records prospectively…

Variables influencing end-of-life care in children and adolescents with cancer

BACKGROUND: The purpose of this study was to describe the variables influencing end-of-life care in children and adolescents dying of cancer. MATERIALS AND METHODS: Records of 146 children with cancer who died at Children's Hospital were reviewed for…

Utilizing a collaborative learning activity to sensitize interprofessional students to palliative care scopes of practice with adolescent and young adults

Adolescent and young adults diagnosed with cancer represent a vulnerable population needing careful collaborative care from interprofessional teams. Healthcare providers must understand and appreciate the respective scopes of practice of palliative…

Using videotelephony to support paediatric oncology-related palliative care in the home: from abandoned RCT to acceptability study

Videotelephony (real-time audio-visual communication) has been used successfully in adult palliative home care. This paper describes two attempts to complete an RCT (both of which were abandoned following difficulties with family recruitment),…

Using high-dose morphine to relieve cancer pain

For cancer patients, the question of how much morphine is too much may be irrelevant-they need as much as it takes to relieve their pain. Discover the principles of administering high doses of morphine, including which routes to use, how to convert…

Tags: 1993, Adult, Backlog, Fulton JS, Humans, Infusions, Intravenous, Johnson GB, Journal Article, Male, Morphine/administration & dosage/adverse effects, Neoplasms/physiopathology, Nursing, Oncologic Nursing/methods, Pain/drug therapy/nursing

Using drugs to end life without an explicit request of the patient

A small proportion of deaths result from the use of drugs with the intention to hasten death without an explicit request of the patient. Additional insight into its characteristics is needed for evaluating this practice. In the Netherlands in 2001,…

Usefulness of consecutive biomarkers measurement in the management of community-acquired pneumonia.

The aim of this study was to investigate whether procalcitonin (PCT), neopterin,

Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study

Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom…

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

Use of melatonin in the treatment of paediatric sleep disorders

A group of Vancouver health professionals, including the authors, have studied the use of oral melatonin in the treatment of chronic sleep disorders in children with disabilities since the Fall of 1991. This review article is based on the first 100…

Tags: 1996, Administration, Adolescence, Adult, Backlog, Child, Chronic Disease, Disabled Persons, Human, Infant, Jan JE, Journal Article, Journal Of Pineal Research, Melatonin/ae [Adverse Effects], Melatonin/tu [Therapeutic Use], O'Donnell ME, Oral, Preschool, Sleep Disorders/dt [Drug Therapy]

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