Browse Items · Pediatric Palliative Care Library

Grieving the Loss of a Child and the Use of Online Social Support: An Exploratory Survey Study

PURPOSE: To describe social media online grief supports, accessing behaviors, psychosocial variables, and feelings of support among individuals grieving the loss of a child aged

Tags: 2024, Adult, Anxiety/psychology, Child, Clarkson G, Depression/psychology, Female, Grief, Humans, Internet, Johnson LA, Journal of Psychosocial Nursing and Mental Health Services, Male, October List 2024, Self Efficacy, Sheikh NS, social media, Social Support, Surveys And Questionnaires

The impact, perceptions and needs of parents of children with epidermolysis bullosa

Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a…

Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study

Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured…

Internet Health Resources on Nocturnal Enuresis - A Readability, Quality and Accuracy Analysis

Introduction Nocturnal enuresis is a common yet quality-of-life-limiting paediatric condition. There is an increasing trend for parents to obtain information on the disease's nature and treatment options via the internet. However, the quality of…

Living With Loss: Study Protocol for a Randomized Controlled Trial Evaluating an Internet-Based Perinatal Bereavement Program for Parents Following Stillbirth and Neonatal Death

Background: Stillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and…

Approaches to community-based palliative care provision by children's hospices in the UK

The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by…

Newborn genetic screening for spinal muscular atrophy in the UK: The views of the general population

BACKGROUND: Spinal muscular atrophy (SMA) is an inherited neuromuscular disorder and a leading genetic cause of infant death worldwide. However, there is no routine screening program for SMA in the UK. Lack of treatments and the inability of…

Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences

BACKGROUND:: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may…

Growing a professional network to over 3000 members in less than 4 years: evaluation of InspireNet, British Columbia's virtual nursing health services research network

BACKGROUND: Use of Web 2.0 and social media technologies has become a new area of research among health professionals. Much of this work has focused on the use of technologies for health self-management and the ways technologies support communication…

Decision aids for advance care planning: an overview of the state of the science.

Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have…

Tags: 2014, Advance Care Planning, Annals Of Internal Medicine, Backlog, Butler M, Decision Support Techniques, Humans, Internet, Journal Article, Kane RL, McCreedy E, Prognosis, Ratner E, Shippee N, Terminally Ill

Neonatologist training to guide family decision making for critically ill infants

OBJECTIVES: To assess neonatology fellow training in guiding family decision making for high-risk newborns and in several critical communication skills for physicians in these scenarios. DESIGN: A Web-based national survey. SETTING:…

Metadata-driven Delphi rating on the Internet

Paper-based data collection and analysis for consensus development is inefficient and error-prone. Computerized techniques that could improve efficiency, however, have been criticized as costly, inconvenient and difficult to use. We designed and…

Tags: 2005, Backlog, Computer Methods And Programs In Biomedicine, Delphi Technique, Deshpande AM, Guidelines, Internet, Journal Article, Nadkarni PM, P.H.S., Research Support, Shiffman RN, Software, U.S. Gov't

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…

Creation of a neonatal end-of-life palliative care protocol

OBJECTIVE: To create a protocol delineating the needs of patients, families, and staff necessary to provide a pain-free, dignified, family-, and staff-supported death for newborns who cannot benefit from intensive, life-extending, technological…

Paediatric palliative home care with Internet-based video-phones: lessons learnt

We have designed and tested an Internet-based video-phone suitable for use in the homes of families in need of paediatric palliative care services. The equipment uses an ordinary telephone line and includes a PC, Web camera and modem housed in a…

Tags: 2004, Armfield N, Backlog, Bensink M, Child, Child Health Services/organization & administration, home care services, Hospital-Based/organization & administration, Humans, Internet, Irving H, Journal Article, Journal Of Telemedicine And Telecare, Palliative Care/organization & Administration, PPC Book Chapter 2011 (Kim Widger), Queensland, Remote Consultation/organization & administration, Russell TG, Wootton R

Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease

Pediatric providers can expect that 1 of every 10 patients they see will have a chronic, activity-limiting health condition. Thanks to earlier diagnosis and improved therapies, most of these children will live well into adulthood. This means that…

Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis

BACKGROUND: End-of-life and bereavement care is an important consideration in intensive care. This study describes the type of bereavement care provided in intensive care units across Australia and New Zealand. DESIGN: Inductive qualitative content…

Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions

BACKGROUND: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical…

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…

[parental Mourning After A Perinatal Loss]

The loss of a close friend or relative is always an ordeal. When this loved one is a baby, born or even unborn, a number of specific aspects have been reported by parents and researchers. The specificities of perinatal mourning have been…

Tags: 2017, Archives de Pediatrie, Caeymaex L, de Mezerac I, Family, Human, Infant, Internet, Neonatologist, Non Profit Organization, October 2017 List, Palliative Therapy

Families' Priorities In Life-limiting Illness: Improving Quality With Online Empowerment

OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose…

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