Browse Items · Pediatric Palliative Care Library

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 Infants in the Neonatal Intensive Care Unit: A Scoping Review

This scoping review aimed to explore the characteristics of neonatal palliative care in the neonatal intensive care unit, including the features, contents, and experiences of infants, parents, and nurses during palliative care. Five databases…

Tags: 2024, Ahn SY, Child Parent Relation, Hospice Care, Human, Infant, Infant Newborn, Intensive Care Units, Journal of Hospice and Palliative Nursing, Kim ES, Kim S, Lee H, March List 2024, Neonatal Intensive Care Unit, Newborn, Nursing Care, Palliative Care, Palliative Therapy, Psychology

Palliative care management of a child with juvenile onset Huntington's disease

Ethical, Cultural, Social, and Individual Considerations Prior to Transition to Limitation or Withdrawal of Life-Sustaining Therapies

As part of the invited supplement on Death and Dying in the PICU, we reviewed ethical, cultural, and social considerations for the bedside healthcare practitioner prior to engaging with children and families in decisions about limiting therapies,…

Exploring NICU Nurses' Affective Responses to End-of-Life Care

BACKGROUND: The survival rate for infants born with life-threatening problems has improved greatly over the last few decades. Nevertheless, infants still die in neonatal intensive care units (NICUs) every day. Despite existing standards of care, some…

When a Child Dies in the PICU Despite Ongoing Life Support

OBJECTIVES: To examine the circumstance of death in the PICU in the setting of ongoing curative or life-prolonging goals. DATA SOURCES: Multidisciplinary author group, international expert opinion, and use of current literature. DATA SYNTHESIS: We…

Quantitative Evaluation of the Clinical Efficacy of Attention Bias Modification Treatment for Anxiety Disorders

Attention bias modification treatment (ABMT) is a novel treatment for anxiety disorders. Although a number of other meta-analytic reviews exist, the purpose of the present meta-analysis is to examine issues unaddressed in prior reviews. Specifically,…

Experiences Of Healthcare Professionals In The Community Dealing With The Spiritual Needs Of Children And Young People With Life-threatening And Life-limiting Conditions And Their Families: Report Of A Workshop

OBJECTIVE: We sought to understand how healthcare professionals (HCP) conceptualise spirituality among seriously ill children and young people (CYP) and their families, and their experiences in dealing with spiritual issues that emerge in practice.…

Psychosocial Health Outcomes for Family Caregivers Following the First Year of Bereavement

The authors examined psychosocial outcomes following the first year of bereavement, for 51 family caregivers, including both spouses and offspring. Researchers assessed caregivers during palliative care and again during the second year of…

The perceived benefit scales: measuring perceived positive life changes after negative events

The article focuses on a study that introduced measures of self-reported positive life changes after negative events. The study of the psychosocial consequences of negative events has been conducted largely using a deficit approach. In the past three…

Tags: 1998, anxiety, Backlog, Depression, Factor Analysis, Fisher R, Journal Article, Life Change Events, McMillen JC, Psychological, Psychology, Social Work Research, statistical, Stress

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…

Factors related to the quality of life in adolescents with chronic pain

OBJECTIVE: This study examined the relationships between pain characteristics, psychosocial factors, and quality of life among adolescents with chronic pain that existed for at least 3 months, either recurrently (ie, pain with pain-free intervals) or…

The Rett Syndrome Behaviour Questionnaire (RSBQ): refining the behavioural phenotype of Rett syndrome

Background: Although physical features, including loss of hand skills, deceleration of head growth, spasticity and scoliosis, are cardinal features of Rett syndrome (RS), a number of behavioural features are also associated with the disorder,…

Parents' perspectives on conflict in paediatric healthcare: A scoping review

Background: Conflict in paediatric healthcare is becoming increasingly prevalent, in particular relation to paediatric end of life. This is damaging to patients, families, professionals and healthcare resources. Current research has begun to explore…

Tags: 2021, Archives of Disease in Childhood, Conflict, Darlington AS, May 2021 List, Paediatric, Palliative Care, parent perspectives, Parsons E, Psychology

Content specificity of attention bias to threat in anxiety disorders: A meta-analysis

Despite the established evidence for threat-related attention bias in anxiety, the mechanisms underlying this bias remain unclear. One important unresolved question is whether disorder-congruent threats capture attention to a greater extent than do…

Diversity of Parent Emotions and Physician Responses During End-of-Life Conversations

BACKGROUND AND OBJECTIVES: To provide support to parents of critically ill children, it is important that physicians adequately respond to parents' emotions. In this study, we investigated emotions expressed by parents, physicians' responses to these…

Two Futures: Financial and Practical Realities for Parents of Living With a Life Limited Child

Today more and more children are living with complex health care needs, many of these children are living with life limiting and/or threatening conditions, some are medically fragile. To live a childhood these children must live in communities and…

Psychosocial adjustment in siblings of young people with Duchenne muscular dystrophy

Duchenne muscular dystrophy (DMD) is a progressive, impairing, life-limiting disorder of childhood. Little is known about how siblings adapt to this. The aim of this study is to document psychosocial adjustment in siblings of patients with DMD.…

Tags: 2010, Adaptation Psychological, Adolescent, Child, December 2017 List, European Journal of Paediatric Neurology, Female, Garralda ME, Humans, Kinali M, Male, Mental Health, Muntoni F, Muscular Dystrophy Duchenne/px [psychology], Psychiatric Status Rating Scales, Psychology, Read J, Siblings/px [psychology], Surveys And Questionnaires

Short-term Focused Feedback: A Model to Enhance Patient Engagement in Research and Intervention Delivery

BACKGROUND: Our grant from the Patient-Centered Outcomes Research Institute (PCORI) focused on the use of nurse home visits postdischarge for primarily pediatric hospital medicine patients. While our team recognized the importance of engaging parents…

Chronic abdominal pain in children: an update

Despite the fact that chronic abdominal pain is a common complaint in children and adolescents, the complexity of this condition only recently has begun to be understood. This article summarizes new advances in the diagnosis, conceptualization, and…

Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer

Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We…

Comparing PECS and VOCA to promote communication opportunities and to reduce stereotyped behaviors by three girls with Rett syndrome

We compared PECS and VOCA intervention strategies to promote communication opportunities for three girls with Rett syndrome and severe to profound developmental disabilities. The first aim of the study was to assess the effectiveness of both…

Depression and anxiety symptoms in children and adolescents with autism spectrum disorders without intellectual disability

Recent studies have shown that rates of depression and anxiety symptoms are elevated among individuals with autism spectrum disorders (ASDs) of various ages and IQs and that depression/anxiety symptoms are associated with higher IQ and fewer ASD…

Fifteen-minute consultation: How to communicate with parents who have a child on life support with no hope of recovery

A child on life support with no hope of recovery is the worst nightmare for parents and for paediatricians. Unfortunately, some children have illnesses or injuries that are not compatible with life. Being in a vegetative state with no meaningful…

Tags: 2022, Archives of Disease in Childhood, Article, August 2022 List, Child, Child Psychiatry, Consultation, counter transference, court, Ethics, Human, motivational interviewing, Palliative Therapy, Psychology, Swanepoel A, transference, Trust

The palliative care nurse's role in supporting the adolescent child of a dying patient

The aim of this article was to critically evaluate the author's role as a hospital-based palliative care nurse in supporting the adolescent child of a dying parent. The approach taken and the resources that were available have been reflected upon.…

Tags: 2005, Adaptation, Adolescent Psychology/ethics Adult Attitude to Death Bereavement Female Helping Behavior Humans Information Services Internet Life Change Events Neoplasms/nursing/psychology Nurse's Role/, Backlog, International Journal of Palliative Nursing, Journal Article, Methods, PedPal Lit, Professional-Family Relations/ethics Prognosis Social Support Truth Disclosure/ethics, Psychological/ethics Adolescent, Psychology, psychology Palliative Care/ethics/, Sweetland C

Psychologists as Pivotal Members of the Pediatric Palliative Care Team

Context: Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists…

Incompatible with Care: Examining Trisomy 18 Medical Discourse and Families' Counter-discourse for Recuperative Ethos

Parents whose child is diagnosed with a serious disease such as trisomy 18 first rely on the medical community for an accurate description and prognosis. In the case of trisomy 18, however, many families are told the disease is "incompatible with…

Tags: 2018, Blogging, Child Parent Relation, Copeland A J, Edwards syndrome, Human, March 2019 List, Psychology, The Journal of medical humanities, Thorvilson M J, Treatment Outcome

Parent reports of quality of life for pediatric patients with cancer with no realistic chance of cure

PURPOSE: To compare quality of life of children with cancer with no reasonable chance of cure reported by parents 6 months or fewer versus more than 6 months before death. PATIENTS AND METHODS: This cross-sectional study included children between the…

Chinese Neonatal Nurses' Lived Experiences of Providing End-of-Life Care in the NICU: A Descriptive Phenomenological Study

Background: Although end-of-life care (EOLC) has been well-studied, the experience of neonatal intensive care unit (NICU) nurses in China, where little EOLC training is provided, requires further investigation. Purpose: To explore the lived…

Tags: 2023, Advances in Neonatal Care, East Asian, Emotion, February List 2024, Guo-Qin Y, Human, Infant, Li-Ping W, Lin W, Neonatal Intensive Care Unit, Neonatal Nurse, Newborn, Psychology, Qi L, Terminal Care, Tong-Hui S, Xiao-Li R

Listening To Parents: The Role Of Symptom Perception In Pediatric Palliative Home Care

RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures…

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