Browse Items · Pediatric Palliative Care Library

Sibling involvement at the end of life

When a child is diagnosed with a life-threatening illness, such as cancer, there is much disruption to the family. It is a struggle for parents to divide their time between the hospital, home, and other healthy siblings. Nurses strive to provide…

Tags: 2005, Attitude To Death, Attitude to DeathBereavement Child Emotions HumansNeoplasms/nursing/psychology Oncologic NursingSibling Relations Siblings/psychology Terminal Care/psychology, Backlog, Bereavement, Child, Emotions, Giovanola J, Humans, Journal Article, Journal Of Pediatric Oncology Nursing, Neoplasms, Oncology Nursing, PedPal Lit, sibling bereavement, Sibling Relations, Siblings, Terminal Care

Changes In Parents After The Death Of A Child From Cancer

CONTEXT: Few studies have compared multiple perspectives of changes experienced by parents after a child's death. OBJECTIVES: This study used interviews with bereaved parents and siblings to examine changes in parents during the first year after the…

Experiences of fathers of children with a life-limiting condition: a systematic review and qualitative synthesis

BACKGROUND: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the…

Tags: *Fathers, *Neoplasms, 2023, 2023 SE4 - Parent Perspectives, BMJ Supportive and Palliative Care, Child, Emotions, Fathers/px [Psychology], Female, Fisher, Victoria, Fraser, Lorna, Humans, Male, Mothers/px [Psychology], Parents/px [psychology], Qualitative Research, Taylor, Johanna

After the child dies

The parents of a child who dies feel the emotions of shock, mourning, and confusion as they slowly come to accept the finality of the child's death. In contemporary America they frequently feel isolated and abandoned. The individuals and institutions…

Tags: 1976, Attitude To Death, Backlog, Child, Death, Emotions, Female, Fischhoff J, Humans, Journal Article, Male, O'Brien N, Parents, Professional-family Relations, Self-Help Groups, The Journal Of Pediatrics

Medical adherence and childhood chronic illness: family daily management skills and emotional climate as emerging contributors

PURPOSE OF REVIEW: To describe recent research that examines family factors that promote or derail adherence to medical regimens for children with chronic health conditions, primarily asthma, diabetes, and cystic fibrosis. From the past 2 years,…

Tags: 2006, Adolescent Transitions, Asthma/therapy, Backlog, Child, Chronic Disease, Current Opinion In Pediatrics, Cystic Fibrosis/therapy, Diabetes Mellitus/therapy, Emotions, Everhart RS, Family/psychology, Fiese BH, Home Nursing, Humans, Journal Article, Patient Compliance

Perceptions Of Palliative Care In The Nicu.

BACKGROUND AND PURPOSE:
The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study…

The interaction of physical function and emotional well-being in rheumatoid arthritis--what is the impact on disease activity and coping?

OBJECTIVE: To evaluate the impact of the interaction of physical function and emotional well-being on disease-related parameters and coping with rheumatoid arthritis. METHODS: A cross-sectional survey among 177 RA patients included demographic and…

Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review

Background: Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric…

Coping with chronic pain

Many models of pain give coping an important role in understanding adaptation to chronic pain. Among these, Lazarus and Folkman's cognitive-phenomenological model of stress and coping provides a theoretical framework to conceptualise stress phenomena…

Occupational goals of mothers of children with disabilities: influence of temporal, social, and emotional contexts

“have No Regrets:” Parents’ Experiences And Developmental Tasks In Pregnancy With A Lethal Fetal Diagnosis.

SIGNIFICANCE:
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological…

Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media

Background: Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. Aim: To identify resources on…

The nature of suffering and the goals of medicine

The question of suffering and its relation to organic illness has rarely been addressed in the medical literature. This article offers a description of the nature and causes of suffering in patients undergoing medical treatment. A distinction based…

Tags: 1982, Backlog, Cassel EJ, Disease, Emotions, Holistic Health, Humans, Journal Article, Medical, Non-P.H.S., Pain/psychology, Patients/psychology, Philosophy, Research Support, Sick Role, The New England Journal Of Medicine, Therapeutics, U.S. Gov't

The ethics of withholding/withdrawing nutrition in the newborn

The provision of nutrition and hydration to newborn infants is considered fundamental care. For premature and critically ill newborns, similar considerations generally hold true. Nutrition may be provided for these infants using assisted measures…

Resolving disputes between clinicians and family about "futility" of treatment

Family resistance to withdrawal of life support from children presents difficult issues of clinical practice and of principle. Legal recognition of unilateral physician authority for withdrawal on grounds of clinical "futility"-even in the most…

Tags: 2003, Backlog, Brain Death, Burt RA, Emotions, Family, Humans, ICU Decision Making, Journal Article, Life Support Care, Medical Futility/ethics/psychology, Pediatrics, Physician's Role, Physicians, Seminars in Perinatology

Loss, trauma, and human resilience: have we underestimated the human capacity to thrive after extremely aversive events?

Many people are exposed to loss or potentially traumatic events at some point in their lives, and yet they continue to have positive emotional experiences and show only minor and transient disruptions in their ability to function. Unfortunately,…

Tags: 2004, Adaptation, Adult, Backlog, Bonanno GA, Emotions, Grief, Humans, Journal Article, Laughter, Models, Psychological, Repression, The American Psychologist, Wounds and Injuries/psychology

Children's perspectives on the benefits and burdens of research participation

BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their…

Coping through emotional approach: a new look at emotion, coping, and health-related outcomes

Researchers studying stress and coping processes have attempted to identify which coping strategies are most adaptive in stressful encounters. A generally accepted conclusion has been that emotion-focused coping processes are associated with…

Tags: 2004, Adaptation, Adult, Austenfeld Jennifer L, Backlog, Emotions, Health Status, Humans, Journal Article, Journal Of Personality, Outcome Assessment (health Care), Psychological, Psychometrics, Stanton AL, Stress

Interactive Processes in Grief and Couples' Adjustment After the Death of a Child

The death of a child is an individual process of grief but also a context of significant relational processes, which have been only rarely considered in research. The aim of this study was to examine the interactive processes within bereaved parents.…

Tags: 2019, Albuquerque S, Bereavement, Emotions, Empathy, Ferreira L C, Grief, Grounded Theory, Human, Infant Death -- Psychosocial Factors, Interpersonal Relations, Journal Of Family Issues, May 2019 List, Narciso I, Parents -- Psychosocial Factors, Pereira M, Semi-Structured Interview, Support Psychosocial

Navigator-Based Intervention to Support Communication in the Pediatric Intensive Care Unit: A Pilot Study

BACKGROUND: Communication in the pediatric intensive care unit (PICU) between families and the health care team affects the family experience, caregiver psychological morbidity, and patient outcomes. OBJECTIVE: To test the feasibility of studying and…

Caregiver-Child Discrepancies in Reports of Child Emotional Symptoms in Pediatric Chronic Pain

OBJECTIVE: Pediatric chronic pain evaluation includes self-reports and/or caregiver proxy-reports across biopsychosocial domains. Limited data exist on the effects of caregiver-child discrepancies in pediatric pain assessment. In children with…

Experience of Perinatal Death From the Father's Perspective

BACKGROUND: Although perinatal deaths are still a common pregnancy outcome in developing countries, little is known about the effect perinatal death has on fathers. OBJECTIVE: The aim of the study was to understand and describe the meaning of…

Tags: 2019, 2022 Special Edition 1 - Parent Perspectives, Adolescent, Colombia, Emotions, Fathers, Grief, Infant, Lizcano PLDM, Male, Middle Aged, Moreno Fergusson ME, Newborn, Nursing Research, Palacios AM, Perinatal Death, Qualitative Research, Young Adult

The Phenomenon of Bereaved Parenting: An Integrative Review of Literature

Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial…

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