Background Objective was to determine whether prophylactic low level laser therapy (LLLT) reduces the risk of severe mucositis as compared to placebo or no therapy. Methods MEDLINE, EMBASE, and Cochrane Central Register of Controlled Trials were…
Child life specialists provide family-centered, developmentally supportive care for infants in the NICU. However, there is limited research concerning this role. Using an online survey, this study explores child life specialists’ responsibilities in…
Wish-granting organizations have provided wishes to families of children with serious illnesses for years, yet scant research has examined their benefits. This mixed-method investigation of 682 households explored the benefits of granted wishes to…
This paper describes a collaborative partnership in developing a children and young persons’ bereavement group. The course consists of a series of four sessions which encourage children to share and express feelings. The group uses a partnership…
One in seven US households cannot reliably afford food. Food budgets are more frequently exhausted at the end of a month than at other points in time. We postulated that this monthly pattern influenced health outcomes, such as risk for hypoglycemia…
There’s still a lack of investment in palliative care research, according to a new report from the Institute of Medicine (IOM). The panel notes that from 2006 to 2010, only a fraction
Editor’s note: This new recurring feature will showcase novel hospital-based programs, innovations, and outreach initiatives that are meeting children’s health care needs in
Children’s nurse education is experiencing increases in recruitment targets at the same time that clinical placements are decreasing. With regard to end-of-life care, it is has become a challenge to ensure that all students come into contact with a…
Mucopolysaccharidoses (MPS) and Batten disease are rare life-limiting conditions (LLCs) characterised by progressive and permanent physical and cognitive decline. The impact of such conditions on families, and notably on siblings, has not yet been…
Background: The utilization of pediatric hospice care remains unclear in Taiwan. Methods: Data were analyzed from the claims of hospice admissions in patients aged 18 years or younger using the National Health Insurance Research Database from 2005 to…
Background Research shows that palliative care for children requires special attention and a coordinated approach to support the child and its entire family. In June 2012 a project was started in the Women’s and Children’s Clinic, Academic Medical…
Introduction Health professionals in neonatal intensive care units (NICUs) are regularly confronted with an infant’s imminent death. The death of a child is unnatural to parents and intensely affects them. Providing end-of-life care and follow-up…
Objective To describe the attitudes at the end-of-life decision (EOLD) making among Slovene paediatricians. Design A cross-sectional survey using questionnaire and case scenario. Setting Paediatric Health Care Institutions in Slovenia. Participants…
Background and aims Many sources of conflict exist in intensive care units between family’s members, team–family, or within the ICU team. These conflicts are frequents (48%) in adults ICU, and most are in relation to end-of-life decisions especially…
Background and aims Recent audit found common practice in the UK is to restrict visitors on PICU to 2 adults, including parents, to ensure staff’s safe patient access. This requires nurses to take responsibility for bed space visitors, however, this…
Background and aims Demise of a baby has profound consequences on the parents and providing appropriate support is the responsibility of multi-disciplinary team.1 Aim To compare the uptake of bereavement services between two tertiary neonatal units…
Background and aim Not all babies from whom neonatal intensive care (IC) is withdrawn die swiftly. We reviewed cases, characteristics, and outcomes of babies who unexpectedly survived for ≥1 week following IC withdrawal. Methods Retrospective review…
Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis,…
Objective Advance Care Planning (ACP) is nationally a core element of adult and paediatric palliative care strategies. It is defined as a process of discussion between an individual, their care providers and those close to them, about future care.…
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…
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…
An increasing number of children and young people require end of life care, and providing them and their families with optimum support at this time is crucial. This article describes how nurses working with children and families in home, hospital and…
This study outlines an innovative, English hospice-based service that provides 24/7 care for children with life-limiting conditions and their families. Operational objectives were: symptom management; open access to families and professionals; choice…
Caring for a dying child and the family is one of the greatest nursing challenges. The way in which care is delivered will shape the experience they are about to face. Hope plays a crucial role in helping people cope, and healthcare professionals can…
THE GAP between children's and adult palliative care services is too wide to negotiate for some young people, according to a study of the experiences of young people with life-limiting conditions and their families.
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…
In this article, the American Cancer Society provides estimates of the number of new cancer cases and deaths for children and adolescents in the United States and summarizes the most recent and comprehensive data on cancer incidence, mortality, and…
BACKGROUND: Grief following child loss is profoundly destabilizing with serious long-term repercussions for bereaved parents. Employed parents may need time away from work to deal with this loss.OBJECTIVE: The purpose of this study was to reflect…
Malignant rhabdoid tumors (MRT) of soft tissues are aggressive tumors, which can be detected in almost any part of the body. MRT are rare, and very few cases have been reported in the literature. Prognosis of these tumors is extremely poor despite…
Secondary analysis using data from a clinical trial was performed to evaluate the stability of individual items of the Mobility and Self-Care functional skills scales of the Pediatric Evaluation of Disability Inventory (PEDI). Parents of 113 children…
Parents of a child with a disability are often asked about their child's functioning in daily activities. One way to gather this information is through parent-report functional questionnaires such as the Pediatric Evaluation of Disability Inventory…
The purpose of this study was to examine the relationship between goal achievement measured by the Canadian Occupational Performance Measure (COPM) and child, goal, and intervention factors. Participants were 41 preschool children with cerebral palsy…
BACKGROUND: This article reports the results of a service evaluation designed to assess children's dream fulfillment charity, Dreams Come True. AIMS AND OBJECTIVES: With the objective to gain the opinions of those who have used and are involved with…
BACKGROUND: Pain that occurs both within and outside of the hospital setting is a common and distressing problem for adolescents with cancer. The use of smartphone technology may facilitate rapid, in-the-moment pain support for this population. To…
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…
The death of a child can be an overwhelming experience for parents. Hospitals are often the first place to get information or to seek services, yet little is known about what types of bereavement services, information, or support are typically…
Barth syndrome (BTHS) is a genetic, X-linked, rare but often fatal, pediatric skeletal- and cardiomyopathy occurring due to mutations in the tafazzin gene (TAZ). TAZ encodes a transacylase involved in phospholipid biosynthesis, also called tafazzin,…
Chronic diseases are diseases of long duration and slow progression. Major NCDs (cardiovascular diseases, cancer, chronic respiratory diseases, diabetes, rheumatologic diseases and mental health) represent the predominant health problem of the…
