Browse Items · Pediatric Palliative Care Library

Prioritisation of future research topics in paediatric palliative care in Ireland: a Delphi study

This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving…

Resource Utilization Among Individuals Dying Of Pediatric Life-threatening Diseases

BACKGROUND AND OBJECTIVES: Very little information exists on the number of resources utilized by individuals living with and dying of pediatric life-threatening diseases (LTDs). This study quantifies end of life (EOL) resource utilization among the…

Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…

Tags: 2008, Cadell S, Canada, Child, Davies B, Derman S, Health Planning, Health Services Needs And Demand, Hospices/organization & administration, Humans, International Journal of Palliative Nursing, Palliative Care, Pediatrics, Pilot Projects, Siden H, Steele R, Straatman L

Human suffering: the need for relationship-based research in pediatric end-of-life care

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must…

Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups

The objective of this qualitative study was to explore the perceptions and needs of families who care for a child with a life-limiting disease. Considering the heterogeneity of life-limiting diseases in childhood, three diagnostic groups were…

The needs of professionals in the palliative care of children and adolescents

UNLABELLED: The main objectives of this qualitative study were to describe the perceptions and needs of pediatric health care professionals (HCPs) taking care of children with palliative care needs and to develop a concept for the first Center of…

Tags: 2013, Abbruzzese R, Adolescent, Adolescent Health Services/ma [Manpower], Bergstraesser E, Child, Child Care/ma [Manpower], European Journal of Pediatrics, Health Services Needs And Demand, Hornung R, Hosek M, Humans, Inglin S, January 2018 List, Marfurt-Russenberger K, Palliative Care/ma [manpower], Qualitative Research, Surveys And Questionnaires, Switzerland

The experiences and needs of healthcare professionals facing perinatal death: A scoping review

BACKGROUND: Globally, perinatal death is on a decline. However, its impact on the healthcare profession is huge. The existing literature focuses on examining perinatal death from parents' perspectives and patient death from the perspectives of nurses…

Tags: 2017, Andre B, Experiences, February 2018 List, Female, Health Personnel/ psychology, Health Services Needs And Demand, Healthcare Professionals, Humans, International Journal Of Nursing Studies, Lopez V, Maternal Health Services/ manpower, Maternity care, Needs, Perinatal Death, Pregnancy, Scoping review, Shorey S, Stillbirth

Palliative care in adolescents and young adults with cancer

Adolescents and young adults (AYA) with advanced or terminal cancer have distinctive medical and psychosocial needs that may not have been adequately provided by either pediatric or adult palliative care services. A discussion group, as part of a…

Community resources for children with special healthcare needs

1997

Tags: 1997, Backlog, Blasco PA, Child, Chronic Disease, Community Health Services, Family/psychology, Health Services Needs And Demand, Humans, Information Services, Johnson CP, Journal Article, Pediatric Annals, Pediatrics/organization & Administration, Physician's Role, Social Support, United States

The need for palliative care for patients with non-cancer diseases: a review of the evidence

The palliative care needs of patients with cancer are understood and managed well by specialist palliative care services. Patients dying of non-cancer diseases are rarely offered these services. A literature review was conducted to determine the…

Tags: 2001, Backlog, Cox S, Health Services Needs And Demand, Higginson I, Humans, International Journal of Palliative Nursing, Journal Article, Livesley B, Luddington L, Palliative Care/psychology, Patient Education as Topic, Psychological, Research Design, Stress, Terminal Care/psychology

Focus group interview with parents of children with medically complex needs: an intimate look at their perceptions and feelings.

The purpose of this paper was to identify the needs of parents of children with medically complex needs from their own perception. In order to provide in-depth information, the focus group interview technique was used. Several strong recurrent themes…

Health-related, help-seeking behaviors in female Mexican-American adolescents

PURPOSE: To explore and describe the health-related, help-seeking behaviors of young female Mexican-American adolescents. DESIGN: Qualitative exploratory-descriptive design using focus groups. SETTING: Community recreation centers. PARTICIPANTS: 18…

Tags: 1997, Adolescent, Adolescent Health Services, Backlog, Child, Female, Focus Groups, Health Behavior, Health Promotion, Health Services Needs And Demand, Hispanic Americans, Humans, Journal Article, Journal Of The Society Of Pediatric Nurses, Mexico/ethnology, Pregnancy, Rew L, Sex Education, United States

Assessment of need for a children's hospice program

Canuck Place, North America's first free-standing pediatric hospice of its kind, opened in 1995 in British Columbia, Canada. The province-wide program encompasses a broad spectrum of services intended to support community-based care and provide…

Tags: 1996, Adolescent, Backlog, Canada, Child, Child Health Services, Davies B, Death, Death studies, Grief, Health Services Needs And Demand, Hospice Care, Humans, Journal Article, PPC Book Chapter 2011 (Kim Widger), Preschool, Program Development

Meeting the bereavement needs of kids in patient/families--not just playing around

Children grieve differently than adults. Although the unit of care in hospice is the patient and family, emphasis is often on the grown members of the family and the anticipatory grief and bereavement needs of children and adolescents are sometimes…

Frequent school-based clinic utilization: a comparative profile of problems and service needs

The purpose of this study is to compare frequent users of school-based clinic services with students who have an average rate of utilization. SAMPLE: Of the 1413 students enrolled in a Denver school-based clinic (DSBC) during the 1989-1990 school…

Human suffering: the need for relationship-based research in pediatric end-of-life care

Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must…

Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs

OBJECTIVE: To examine unmet needs among families of children with chronic health conditions treated in primary care settings and to identify predictors of these needs. METHOD: Primary care physicians referred 83 caregivers of children with chronic…

Developing the Liverpool Care Pathway for the dying child

In most western societies the death of a child is a rare occurrence. When it does occur, it typically takes place after a period of intensive and often prolonged treatment. In light of the relative infrequency of these events in clinical practice,…

Emotion work in the palliative nursing care of children and young people

The nurse's role in supporting and caring for children and young people with life-limiting illness/conditions and their families requires specialist expertise. This domain can be one of the most emotionally challenging areas of practice. The concept…

Constipation in paediatric oncology

Constipation is a common problem encountered by many children during treatment for childhood cancer. It can be distressing and impact on the quality of life for the child. However, the advice and information they and their families receive can vary…

Paediatric fever management: continuing education for clinical nurses

PURPOSE: This study examined the influence of level of practice, additional paediatric education and length of paediatric and current experience on nurses' knowledge of and beliefs about fever and fever management. METHOD: Fifty-one nurses from…

Helping families raise children with special health care needs at home

One goal of Healthy People 2010 is to reduce the number of people with disabilities in congregate care facilities, consistent with permanency-planning principles, to 0 by 2010 for persons aged 21 years and under (objective 6-7). Congregate care, in…

Tags: 2005, Adolescent, American Academy of Pediatrics Committee/Section on Children With Disabilities, Backlog, Child, Community Health Services, Disabled Children/legislation & jurisprudence/rehabilitation, Family, Health Services Needs And Demand, Healthy People Programs, Home Nursing, Humans, Infant, Johnson CP, Journal Article, Kastner TA, Pediatrics, Respite Care

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…

The moral experience of parents regarding life-support decisions for their critically-ill children: a preliminary study in France

The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear…

Evidence for healing interventions with perinatal bereavement

The purpose of this article is to explore the concept of perinatal grief and evidence-based healing interventions for it. The loss of a pregnancy or death of an infant causes profound grief, yet society has long minimized or ignored this grief, which…

Comparing research priorities for pediatric oncology from two panels of experts

2005

Tags: 2005, Attitude Of Health Personnel, Backlog, Child, Congresses, Hare ML, Health Priorities, Health Services Needs And Demand, Humans, Journal Article, National Institutes of Health (U.S.)/organization & administration, Nursing Research/organization & administration, Oncologic Nursing, Pediatric Nursing, Professional Staff Committees/organization & administration, Research Support, Seminars In Oncology Nursing, United States

Mothers' recollections of the Paediatric Intensive Care Unit: associations with psychopathology and views on follow up

The aim of this study was to establish rates of posttraumatic stress symptoms in mothers after a child's admission to a Paediatric Intensive Care Unit (PICU) and their views on the potential value of a follow up appointment with PICU staff.…

Transition care for young people with chronic illness

Young people with a chronic illness or disability originating in childhood ultimately need transition to adult care. The process of leaving a familiar paediatric service and effectively engaging in appropriate adult health care can be challenging and…

Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…

The reflections you get': an exploration of body image and cachexia.

BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people…

What we know (and do not know) about raising children with complex continuing care needs

Exploring the experiences and perspectives of families using a children's hospice and professionals providing hospice care to identify future research priorities for children's hospice care

The main objective of this study is to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using…

A home for medically complex children: the role of hospital programs

The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care…

Tags: 2008, Adams S, Backlog, Child, Cohen E, Continuity Of Patient Care, Disease Management, Friedman J, Health Services Needs And Demand, home care services, Hospital-Based, Hospitalized, Humans, Journal Article, Journal For Healthcare Quality, Models, Nicholas DB, Organizational, Rosenbaum P

The experiences of Chinese family members of terminally ill patients - a qualitative study

AIM: To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. BACKGROUND: Palliative care aims to provide care to dying patients and their family…

Transition of care from child to adult mental health services: the great divide

PURPOSE OF REVIEW: Adolescents with mental health problems often require transition of care from child and adolescent to adult mental health services. This review is a synthesis of current research and policy literature on transition to describe the…

Improving end-of-life care for children

2007

Tags: 2007, Backlog, Child, Health Services Needs And Demand, Hospice Care, Humans, Infant, Intensive Care Units, Journal Article, Lancet, Palliative Care/organization & Administration, Pediatric/utilization, Preschool

Psychosocial and spiritual needs of children living with a life-limiting illness

Quality end-of-life care includes the management of distressing symptoms; provisions of care, including the assessment and management of psychosocial and spiritual needs; and respite from diagnosis through death and bereavement. Meeting the…

Implementation of transition programs can prevent another lost generation of patients with congenital heart disease

Congenital heart disease is the most frequently occurring birth defect. To date, more than 90% of the children born with a heart defect reach adulthood. Since many patients are prone to residua and sequelae, lifelong specialized care is required.…

Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families

Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and…

Meeting the needs of siblings of children with life-limiting illnesses

Siblings of children with life-threatening or life-limiting illnesses can face a number of challenges, yet this is a group that is often unacknowledged as needing specific support. It is essential that the needs of siblings are recognised and…

Tags: 2014, Adaptation, Backlog, Child, Health Services Needs And Demand, Humans, Journal Article, Lane C, Mason J, Nursing Children and Young People, Patient-centered Care, Professional-family Relations, Psychological, Siblings, Social Support, Terminal Care

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