December 2018 List
Title
December 2018 List
Collection Items
A possibility for strengthening family life and health: Family members' lived experience when a sick child recieves home care in sweden
Background/Objectives: Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to…
Speaking a different language: Communication patterns of palliative care and pediatric intensive care unit providers during family conferences
Introduction: Family conferences between parents of critically ill children and health care providers in the pediatric intensive care unit (PICU) serve an important role in family centered care. Many family conferences include palliative care…
'We didn't tell everybody because everybody didn't need to know': An examination of parental disability-disclosure of spina bifida
This qualitative study sheds light on the process that parents go through as they learn of a spina bifida diagnosis and the communication strategies that are used to discuss an expected disability diagnosis with others. Interviews with 30…
Advance Care Planning and Parent-Reported End-of-Life Outcomes in Children, Adolescents, and Young Adults With Complex Chronic Conditions
Objectives: For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance care planning outcomes research has previously focused on seriously ill adults and…
Primary palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members
Background: "Primary" palliative care (PC) skills for CF care teams are not clearly defined, but in general for serious illness include managing basic physical and emotional symptoms, and having basic discussions about prognosis, goals, suffering,…
Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review
Background: Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric…
Parental Personal Sense of Duty as a Foundation of Pediatric Medical Decision-making
We describe a model of parental (or more broadly, surrogate) decision-making that includes 5 aspects of decision-making that other models simplify or omit. First, we describe problem structuring recognizing that parents often face multiple potential…
Youth With Chronic Conditions and Risky Behaviors: An Indirect Path
Purpose: To compare risk behaviors between youths living with a chronic condition (CC) and their healthy peers, controlling for condition severity. Methods: Data were drawn from the baseline wave of the GenerationFRee study (students aged 15-24 years…
Barriers to the use of buccal and intranasal fentanyl for breakthrough pain in paediatric palliative care: an exploratory survey
We recently administered a survey to investigate the prescribing of buccal and intranasal fentanyl for breakthrough pain in paediatric palliative care in the UK.
Outpatient appointment non-attendance and unplanned health care for children and young people with neurological conditions: a retrospective cohort study
Aim To test the hypothesis that children and young people with neurological conditions who missed outpatient appointments have more emergency inpatient admissions and Accident and Emergency centre (A&E) visits than those who missed none. Method…
Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses
Context Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs. Objective To determine the levels…
An economic examination of private insurance claims among adolescents and young adults who were enrolled in hospice during the last year of life
Purpose: The purpose of this study was to generate baseline data on the health characteristics, health care utilization, and health care spending among privately insured adolescents and young adults (AYA), who were enrolled in hospice care during…
Facilitating transition from children's to adult services for young adults with life-limiting conditions (TASYL): Programme theory developed from a mixed methods realist evaluation
DESIGN: A realist evaluation using mixed methods with four phases of data collection in the island of Ireland. Phase one: a questionnaire survey of statutory and non-statutory organisations providing health, social and educational services to young…
Children With Intellectual Disability and Hospice Utilization: The Moderating Effect of Residential Care
BACKGROUND: Children with intellectual disability commonly lack access to pediatric hospice care services. Residential care may be a critical component in providing access to hospice care for children with intellectual disability.…
Managing Ambiguity: Nurses Caring for the Mother of a Stillborn Baby
Purpose: The aim of this study was to describe and conceptualize the experiences and processes involved when labor and delivery nurses provide care to women experiencing a stillbirth. Background: The care of a woman experiencing a stillbirth is an…
Palliative care professional's perceptions of barriers and challenges to accessing children's hospice and palliative care services in South East London: A preliminary study
Objectives: Several barriers have been identified as preventing or delaying access to children's palliative care services. The aim of this study is to further explore such barriers from palliative care professionals' perspective from two London…
Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences
Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital.…
Care of the Bereaved Mother
Purpose: Caring for the bereaved mother can be a challenging undertaking for healthcare professionals who unless have suffered a similar loss, can find it difficult to relate with bereaved parents. The purpose of this DNP project is to research grief…
A new kind of language barrier: Examining disparities in medical teams' referrals of palliative care patients to Pediatric psychology
Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study…
Modes of Death Within a Children's Hospital
BACKGROUND: Knowledge about how children die in pediatric hospitals is limited, and this hinders improvement in hospital-based end-of-life care. METHODS: We conducted a retrospective chart review of all the patients who died in a children's hospital…
Using the Young Children's Participation and Environment Measure (YC-PEM) to Describe Young Children's Participation and Relationship to Disability and Complexity
Minimal research exists on the participation of young children who are five years and younger. The purpose of this study is to describe the participation of young children who use a large children's treatment centre in Ontario, Canada in relation to…
Development and Implementation of an End-of-Life Curriculum for Pediatric Residents
BACKGROUND: Caring for a child near the end of life (EOL) can be a stressful experience. Resident physicians are often the frontline providers responsible for managing symptoms, communicating difficult information, and pronouncing death, yet they…
Specialist palliative care service for children with life-threatening conditions in Japan: A nationwide survey of resources and utilization
Background/Objectives: To clarify the availability and utilization of specialist palliative care services among children with life-threatening conditions in Japan. Design/Methods: A questionnaire was administered to assess the availability of…