Browse Items · Pediatric Palliative Care Library

Listen to our voice!' using co-creation and art-based methods to explore the welfare and wellbeing of siblings of children with life-limiting conditions

Sibling of children with a life-limiting condition (LLC) face challenge. Yet there is relatively little research specifically investigating the psychosocial impact on siblings living with a child with an LLC. A qualitative participatory methodology…

DIVERSITY IN ETHNICITY AND MAIN SPOKEN LANGUAGE OF CHILDREN REFERRED TO A SPECIALIST PAEDIATRIC PALLIATIVE CARE SERVICE

Objectives To evaluate the diversity in ethnicity and main language spoken by children formally referred to a specialist paediatric palliative care service, and to compare this to both local and regional population demographics. Methods A…

A protocol for neoWONDER: Neonatal whole population data linkage to improve long-term health and wellbeing of preterm and sick babies

Introduction Early-life medical and surgical interventions in babies born preterm and/or with surgical conditions influence later life health and educational outcomes. Obtaining long-term outcomes post-discharge to evaluate the impact of…

Tags: 2024, Adult, Article, attention deficit hyperactivity disorder, Aveline A, Battersby C, behavior change, breast feeding, breast milk, Cause Of Death, Cohort Analysis, community mental health, congenital diaphragm hernia, Databases Factual, date of birth, Developmental delay, Educational Status, England, Epidemiology, esophagus atresia, factual database, Female, gastroschisis, Gestational Age, Health Care Utilization, Hirschsprung disease, hospital discharge, hospital readmission, Human, Humans, Infant Newborn, Infant Premature, information retrieval, Information Storage and Retrieval, Length Of Stay, Major Clinical Study, Male, Mortality Rate, Necrotizing Enterocolitis, Newborn, newborn assessment, Newborn Care, newborn surgery, Pediatric Intensive Care Unit, place of birth, PLoS One, premature labor, Prematurity, Propensity Score, routinely collected health data, school attendance, September List 2024, van Blankenstein E, Wales, Wellbeing

Parental Ethical Decision Making and Implications for Advance Care Planning: A Systematic Review and Secondary Analysis of Qualitative Literature from England and Wales, Germany, and the Netherlands

Background: Clinicians and parents are expected to make medical treatment decisions in the child's best interests. To reach their decisions, clinicians typically apply a principled approach outlined by Beauchamp and Childress. How parents make…

Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit

Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the…

Data-driven approach to understanding neonatal palliative care needs in England and Wales: a population-based study 2015-2020

Abstract Objective To quantify admissions to neonatal units in England and Wales with potential need for palliative care. Design, setting and patients Diagnoses and clinical attributes indicating a high likelihood of requiring palliative care were…

What are virtual wards and how do they work?: primary care nursing roles are being reinvented as virtual ward and hospital at home services evolve

Virtual wards are expanding in many parts of the UK, with the aim of allowing patients to get the care they need at home, rather than in hospital.

Local Paediatric Death Data for Barnet 2015- 2021: Which Children are Potentially Eligible for Hospice Care?

Background Estimating the local population needs for children's palliative care services can prove challenging. Data has shown that most children die in hospital and not all children with life-limiting conditions (LLC) are known to local hospices at…

Sudden Unexpected Death in Childhood in Greater Manchester (United Kingdom): A Five-Year Review (2015–2020)

The sudden, unexpected death of a child (SUDC) is a devastating experience. It is vital that supportive and investigative services are effective and promote the best outcomes for families. Analysis of 5 years of data from 309 SUDC cases in Greater…

I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child

Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s,…

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…

Developing a nursing dependency scoring tool for children's palliative care: the impact on hospice care

BACKGROUND: Occupancy is commonly used to measure bed management in hospices. However, the increasing complexity of children and young people and growing dependence on technology mean that this is no longer effective. AIM: To develop a dependency…

GPs' role in caring for children and young people with life-limiting conditions: a retrospective cohort study

Background GPs are rarely actively involved in healthcare provision for children and young people (CYP) with life-limiting conditions (LLCs). This raises problems when these children develop minor illness or require management of other chronic…

An Objective Approach to Decisions to Withdraw or Withhold Life-sustaining Medical Treatment

Courts in England and Wales, Australia, and New Zealand have insisted the question of when it is acceptable to withdraw or withhold life-sustaining medical treatment from a child must be considered on a case-by-case basis. Over the last 40 years a…

Tags: 2019, Australia, best interests, Cameron J, Child, Decision Making, England, Futility, Humans, January 2020 List, Journal of law and medicine, life-sustaining treatment, New Zealand, parens patriae, Preschool, Savulescu J, Wales, Withdrawing Treatment, Withholding Treatment

Juggling amidst complexity' – Hospice staff's experience of providing palliative care for infants referred from a neonatal unit

Hospice has been pivotal to children's palliative care provision in the United Kingdom (UK) for more than 3 decades. Some hospices have recently expanded to include care of infants transferred from neonatal units as well as antenatal referrals.…

Tags: 2019, Attitude of Health Personnel -- Evaluation, England, Focus Groups, Hospice Care -- In Infancy and Childhood, Hospital Units, Human, Infant, Infant Care, Journal of Neonatal Nursing, Mendizabal-Espinosa R M, Neonatal Nursing, October 2019 List, Palliative Care -- In Infancy and Childhood, Price J E, Qualitative Studies, Referral And Consultation, Thematic Analysis, Work Experiences

The chameleon project: A children's end of life care quality improvement project: Preliminary results

Background As there was no specialist paediatric palliative care team in the region, we made a successful bid to NHS England's Marginal rate Emergency Threshold (MRET) and Readmission Fund for the Chameleon Project1 in 2018. The project has been…

A three pronged approach to improving advance care planning and end of life decision making for patients with life limiting conditions admitted to picu

Aims & Objectives: To develop three linked projects to enumerate, reflect upon and identify ways to improve the experience of children with life limiting conditions (LLC) admitted to PICU without previous contact with palliative care services or…

A qualitative study of health care professionals’ views and experiences of paediatric advance care planning

Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health…

Prevalence and management of dystonia in a paediatric palliative care cohort

Objectives: Dystonia and seizures can be common, unpredictable and distressing neurological symptoms in paediatric palliative care. Emergency seizure management is increasingly under joint neurology and palliative care, often incorporated into…

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…

Evaluation of transition services for young people with cystic fibrosis in Southeast London

We report a project being launched to evaluate transition services for young people with Cystic Fibrosis (CF) living in Southeast London, UK, and attending either King's College Hospital (KCH) or University Hospital Lewisham (UHL).

Tags: 2005, Adolescent Transitions, Adult, Backlog, Carmel S, Child, Continuity Of Patient Care/organization & Administration, Cystic Fibrosis/therapy, England, Humans, Journal Article, Journal Of Interprofessional Care, Lowton K, Luce P, Mathes L, Patient Care Team/organization & administration, Program Evaluation, While A, Wyatt H

Socioeconomic differences in childhood hospital inpatient service utilisation and costs: prospective cohort study

STUDY OBJECTIVE: To examine the association between socioeconomic position at the time of birth and the use and cost of hospital inpatient services during the first 10 years of life. DESIGN: Analysis of a database of linked birth registrations,…

Consultation with children in hospital: children, parents' and nurses' perspectives

AIMS AND OBJECTIVES: To explore children's, parents' and nurses' views on participation in care in the healthcare setting. BACKGROUND: Children have a right to be consulted and involved in their care. DESIGN: The grounded theory method was used and…

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,…

CAMHS liaison: supporting care in general paediatric settings

Increasing numbers of children and young people with mental health problems are being cared for in general paediatric settings, presenting a challenge to nurses who do not have mental health nursing qualification and experience. A survey of nurses in…

Hospital for the children

2006

Tags: 2006, Attitude Of Health Personnel, Backlog, Cancer Care Facilities/organization & administration, Child, England, Hospital Planning/organization & administration, Hospital/organization & administration/psychology, Hospitals, Houlston A, Humans, Journal Article, Nurse's Role, Nursing Staff, Nursing Standard, Oncologic Nursing/organization & administration, Pediatric Nursing/organization & administration, Pediatric/organization & Administration, PedPal Lit

Douglas House: a 'respice' for young people

2003

Tags: 2003, Adolescent, Adult, Backlog, Cancer Care Facilities, Dominica FS, England, European Journal Of Cancer, Health Facility Environment, Hospice Care, Humans, Journal Article, Neoplasms/therapy, Respite Care

Providing a seamless service for children with life-limiting illness: experiences and recommendations of professional staff at the Diana Princess of Wales Children's Community Service

The Diana Children's Community Teams (DCCTs), a new nurse-led service funded by the Department of Health, were established to provide care in the community as an alternative to hospital for children with life-threatening/life-limiting illnesses and…

Parental stress and burden following traumatic brain injury amongst children and adolescents.

PRIMARY OBJECTIVES: To assess parental stress following paediatric traumatic brain injury (TBI), and examine the relationship between self-reported problems, parental stress and general health. RESEARCH DESIGN: Parents of 97 children admitted with a…

Relationship between three palliative care outcome scales

BACKGROUND: Various scales have been used to assess palliative outcomes. But measurement can still be problematic and core components of measures have not been identified. This study aimed to determine the relationships between, and factorial…

The development of an interdisciplinary outpatient clinic in specialist palliative care

The interdisciplinary team approach is essential in the assessment and management of the palliative care of patients and their families. An innovative approach has been developed to allow the interdisciplinary team to see patients and their families…

Helen House--a hospice for children: analysis of the first year

Helen House, a hospice for children, opened in Oxford in November 1982. From then until December 1983 care was provided for 52 children with terminal illness, progressive and incurable illness, and very severe handicap. The children came from a wide…

The importance of 'knowing the patient': community nurses' constructions of quality in providing palliative care

This paper reports findings from a study conducted in one community health care trust where 62 members of the district nursing team (grades B-H) were interviewed. An adaptation of the critical incident technique was used to determine factors which…

Tags: 2000, Austin L, Backlog, Caress A, Community Health Nursing, Death and Euthanasia, Empirical Approach, England, Hallett CE, Health Care Reform, Humans, Journal Article, Journal Of Advanced Nursing, Luker KA, Nurse-patient Relations, Palliative Care/standards, Quality Of Health Care, Questionnaires

Establishing a district palliative care team for children

The children's palliative care team aims to ensure a high standard of care and support for children with life-threatening illnesses and their families. The team works through primary care teams and with hospital staff to ensure consistency and…

Tags: 1995, Backlog, Child, Child: Care, Health and Development, Critical Illness, England, Humans, Jackson S, Journal Article, Palliative Care, Patient Care Team/organization & administration, Wallace AC

Audit of deaths in general practice: pilot study of the critical incident technique

OBJECTIVE--To develop and pilot a method for conducting an audit of deaths in general practice by the critical incident technique. DESIGN--Prospective use of the technique within a primary health care team, with the aid of a facilitator, to analyse…

Issues in research: Formative evaluation and its relevance to palliative care

1998

Tags: 1998, Backlog, Clark D, Data Collection, England, Field D, Health Care, Ingleton C, Journal Article, Palliative Care/standards, Palliative Medicine, Program Evaluation, Quality Indicators, Quality Of Health Care

Impact of holding the baby following stillbirth on maternal mental health and well-being: findings from a national survey

OBJECTIVES: To compare mental health and well-being outcomes at 3 and 9 months after the stillbirth among women who held or did not hold their baby, adjusting for demographic and clinical differences. DESIGN: Secondary analyses of data from a postal…

Children with life-shortening conditions are denied the support they need, says charity

Children who require palliative care are being 'short changed or ignored', according to a survey of services in England by the charity Together for Short Lives.

Tags: [No authors listed], 2016, Adolescent, August 2017 List, Charities, Child, Child Preschool, England, Healthcare Financing, Hospice And Palliative Care Nursing, Humans, Infant, Infant Newborn, Nursing Children and Young People, Palliative Care, Respite Care, State Medicine, Young Adult

A Study Into The Educational Needs Of Children's Hospice Doctors: A Descriptive Quantitative And Qualitative Survey

OBJECTIVES: To identify and explore the educational needs of children's hospice doctors in England. DESIGN: A descriptive quantitative and qualitative survey. SETTING: Children's hospices in England. PARTICIPANTS: All children's hospice…

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…

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