Browse Items (273 total)
- Tags: Parents
Ethical Issues In Neonatal Intensive Care Units.
Can Parents Refuse A Potentially Lifesaving Transplant For Severe Combined Immunodeficiency?
Families' Priorities In Life-limiting Illness: Improving Quality With Online Empowerment
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…
Tags: 2016, Adolescent, Archives of Disease in Childhood, Beringer A, Child, Child Preschool, Disabled Children/psychology, Family, Female, Fletcher M, Harris N, Hospice, Humans, Infant, Internet, July 2016 List, Longitudinal Studies, Male, Outcome, Palliative Care, Parents, Parents/psychology, Power (psychology), Quality Of Life, Quality Of Life/psychology, Social Support, Surveys And Questionnaires, United Kingdom, Young Adult
End-of-life Care Patterns Associated With Pediatric Palliative Care Among Children Who Underwent Hematopoietic Stem Cell Transplant.
Tags: 2016, Advanced Cancer, Biology of Blood and Marrow Transplantation, Bone-marrow-transplantation Hematology, Chemotherapy, End Of Life, End Of Life Care, Guo D, Immunology, Index Medicus, Integration, June 2016 List, Koch R, Lehmann L, London WB, Multicenter, Oncology Care, Outcomes, Palliative Care, Parents, Pediatrics, Perspectives, Psychological Distress, Sridharan M, Stem Cell Transplant, Transplantation, Ullrich C, Wolfe J
Helping Parents Live With The Hole In Their Heart: The Role Of Health Care Providers And Institutions In The Bereaved Parents’ Grief Journeys.
Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with…
Tags: 2016, Analysis, Baker J, Bereaved Parent, Bereavement, Bereavement Program, Cancer, Child, Communication, Death, End Of Life, Gibson DV, Grief, Health Care Provider, Kaye EC, May 2016 List, Palliative Care, Parent And Child, Parents, Pediatric Oncology, Psychological Aspects, Snaman J, Torres C
Parental Decision-making On
Utilisation Of Out-of- Home Respite In Children’s Palliative Care: Findings Of
Qualitative Case Study Research - A Proposed New Model.
Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision-making regarding the utilisation of out-of-home respite is dependent on many interlinking factors including the…
Tags: 2016, Adolescent, Adult, Child, Child Preschool, Child: Care, Health and Development, Children, Connaire K, Decision Making, Female, Humans, Ireland/epidemiology, Ling J, Longitudinal Studies, Male, May 2016 List, McCarron M, Palliative Care, Palliative Care/psychology, Parents, Parents/psychology, Payne S, Pediatrics, Qualitative Research, Quality Of Health Care, Respite, Respite Care, Social Support, Terminally Ill/psychology
Adequacy Of Palliative Care In A Single Tertiary Neonatal Unit
Little is…
End-of-life Decision-making For Children With Severe Developmental Disabilities: The Parental Perspective.
The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors…
Tags: 2016, Critical Treatment Decision, de Vos MA, Decision Making, Decision-making, Developmental-disabilities, End Of Life, Ewals FV, Humans, Integrative Review, October 2016 List, Parents, Quality Of Life, Research in Developmental Disabilities, Severe Developmental Disorder, Severity Of Illness Index, Terminal Care, To Advocate, van Goudoever JB, Willems DL, Zaal-Schuller IH
Ethics, Emotions, And The Skills Of Talking About Progressing Disease With Terminally Ill Adolescents: A Review.
For clinicians caring for adolescent patients living with progressive, life-threatening illness, discussions regarding prognosis, goals of care, and treatment options can be extremely challenging. While clinicians should respect and help…
Tags: 2016, Adolescent, Advanced Cancer, Analysis, Bad-news, Child, Communication, Emotions, End, Ethics, Feudtner C, JAMA Pediatrics, Lyon M, October 2016 List, Of-life Care, Parents, Pediatric Palliative Care, Pediatrics, Prognostic Disclosure, Psychological Aspects, Rosenberg AR, Teenagers, Wiener L, Wolfe J, Young Adult, Youth
Measuring And Communicating Meaningful Outcomes In Neonatology: A Family Perspective
Medium- and long-term outcomes have been collected and described among survivors of neonatal intensive care units for decades, for a number of purposes: (1) quality control within units, (2) comparisons of outcomes between NICUs, (3)…
Tags: 2016, Annie Janviera, Barbara Farlow, Birth, Child, Communication, Composite End-points, Congenital Anomalies, Disability, Down-syndrome, Empathy, End-of-life Decision Making, Extreme Prematurity, Extremely Preterm Infants, Family-centered Care, Gestational Age, Jason Baardsnesf, Keith J Barringtona, Life-sustaining Interventions, Neonatal Intensive Care Unit, Neurodevelopmental Outcomes, Obstetrics & Gynecology, October 2016 List, Of-life Decisions, Palliative Care, Parents, Pediatrics, Rebecca Pearceg, Screening, Seminars in Perinatology
How Parents And Physicians Experience End-of-life Decision-making For Children With Profound Intellectual And Multiple Disabilities.
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research…
Tags: 2016, Adolescent, Adult, Attitude Of Health Personnel, Attitude To Health, Caregiver, Cerebral Palsy, Child, Child Preschool, de Vos MA, Decision Making, Disabled Children, Dissent And Disputes, End Of Life, Ewals FV, Female, Healthcare Professional, Humans, Infant, Infant Newborn, Intellectual Disability, Male, Middle Aged, Neurologists, Palliative Care, Parents, Pediatricians, Professional-family Relations, Qualitative Research, Research in Developmental Disabilities, Resuscitation Orders, Retrospective Studies, September 2016 List, Severity Of Illness Index, Shared Decision-making, Terminal Care, van Goudoever JB, Willems DL, Young Adult, Zaal-Schuller IH
Keeping All Options Open: Parents' Approaches To Advance Care Planning
Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or…
Parental Involvement In Neonatal Critical Care Decision-making.
Tags: 2016, Aladangady N, Analysis, Biomedical, Communication, Consultation, Conversation, Conversation Analysis, Conversational Analysis, Cooperation, Decision Making, Decision-making, Decisions, End, End Of Life, End Of Life Care, Ethics, Gallagher K, Infant, Infants (newborn), Intensive Care, Interrogatives, Life, Marlow N, Medical Authority, Medicine, Neonatal, Palliative Care, Palliative Treatment, Parent And Child, Parental Involvement, Parenting, Parents, Participation, Physicians, Public, Public Environmental & Occupational Health, Recommendations, Resistance, September 2016 List, Shared Decision, Shaw C, Social Sciences, Sociology, Sociology of Health & Illness, Stokoe E, Training
Palliative Care In The Nicu And Why Education Matters
Tags: 2017, Discenza D, Emotional Intelligence, Humans, Infant Newborn, Intensive Care Units Neonatal/og [organization & Administration], Neonatal Network - Journal of Neonatal Nursing, Palliative Care, Palliative Care/mt [methods], Palliative Care/px [psychology], Parents, Parents/ed [education], Parents/px [psychology], September 2017 List, Social Support
"it Scares Me To Know That We Might Not Have Been There!": A Qualitative Study Into The Experiences Of Parents Of Seriously Ill Children Participating In Ethical Case Discussions
Exploring perinatal death with midwifery students' using a collaborative art project
Tags: 2017, Affective Learning, Artist, Atkinson S, August 2017 List, Barry M, Bradshaw C, Brett M, Collaborative Artwork, Education Nursing, Female, Grief, Humans, Infant Newborn, Ireland, Midwifery Students, Midwifery/ Education, Mothers/psychology, New C, Noonan M, Nurse Education Today, Parents, Perinatal Death, Pregnancy, Quinn C, Students Nursing
Prioritisation of future research topics in paediatric palliative care in Ireland: a Delphi study
Tags: 2017, August 2017 List, Children, Databases Factual, Delphi Study, Delphi Technique, Devins M, Health Services Needs And Demand, Hospice Care, Humans, International Journal of Palliative Nursing, Ireland, Life-limiting Conditions, Ling J, McCarthy S, O'Reilly M, Palliative Care, Parents, Pediatrics, Quality Of Life, Quinn C, Research, Research Priorities, Siblings, Terminal Care, Twomey M
Seeking the best training model for difficult conversations in neonatology
Tags: 2016, August 2017 List, Bender GJ, Communication, Computer Simulation, Curriculum, Fellowships And Scholarships, Female, Humans, Infant Newborn, Journal Of Perinatal Medicine, Lechner BE, Male, Models Educational, Neonatology/education, Parents, Pregnancy, Professional-patient Relations, Shields R, Terminal Care, Tucker R
Parents spend an average of nine hours a day providing palliative care for children at home and need to maintain an average of five life-saving devices
Grief reactions of couples to perinatal loss: a one-year prospective follow-up
Parents' Perception of Their Relationship Following the Loss of a Child.
Tags: 2017, Bereavement, Child Loss, Child Mortality, Communication, Communication Barriers, December 2017 List, Dyregrov A, Dyregrov K, Family Conflict, Interpersonal Relations, Marital Closeness, Men, Norway, Omega: Journal Of Death & Dying, Parent Attitudes, Parental Relationship, Parents, Perception, Questionnaires, Respect, Satisfaction, Women
Informing social work practice through research with parent caregivers of a child with a life-limiting illness
Tags: 2012, Adaptation, Adult, Attitude To Health, Cadell S, Caregivers, Child, Female, Focus Groups, Hemsworth D, Humans, Journal of Social Work in End-of-Life & Palliative Care, Kennedy K, Male, Middle Aged, Palliative Care, Parent-child Relations, Parents, Professional-family Relations, Psychological, Social Support, Social Work, Stress, Terminal Care
A gap between the intention of the Swedish law and interactions between nurses and children of patients in the field of palliative oncology - The perspective of nurses
Tags: 2016, Adolescent, Adult, Akesson H, Attitude Of Health Personnel, Child, Child Of Impaired Parents/lj [legislation & Jurisprudence], European Journal Of Oncology Nursing, Glasdam S, Hospice And Palliative Care Nursing, Humans, Intention, Karidar H, Neoplasms/nu [nursing], Oncology 2017 List, Oncology Nursing, Parents, Professional-family Relations, Sweden
Prolonged Grief, Autobiographical Memory, and Its Interaction With Value Orientations in China and Switzerland
Perinatal palliative care after a stillbirth - Midwives experiences of using Cubitus baby
Tags: 2017, Bmc Pregnancy And Childbirth, Cold, Cold Temperature, Content Analysis, cooling, February 2018 List, Female, Human, Human Dignity, Infant, Listermar KH, Major Clinical Study, Male, midwife, Midwifery, Palliative Care, Palliative Therapy, Parents, Questionnaire, Rådestad I, Refrigeration, Stillbirth, Sweden
Continuing Bonds with the Living: Bereaved Parents’ Narratives of their Emotional Relationship with their Children
The death of a child can be seen as one of the most devastating experiences for parents which can result in a unique and enduring grief. Parents with surviving children face the task of navigating their own grief while continuing to parent.…
Supporting the family after the death of a child.
Tags: 2012, Adolescent, AIM, Backlog, Child, Chronic Disease, Counseling, Death, Disabled Children, Grief, Guidelines As Topic, Guilt, HEALTH COMMITTEE ON PSYCHOSOCIAL ASPECTS OF CHILD AND FAMILY, Humans, IM, Infant, Journal Article, Mortality, Parenting, Parents, Pediatrics, Physician's Role, Premature, Preschool, Professional-family Relations, sibling bereavement, Siblings, Social Support, Substance-Related Disorders, Sudden, Sudden Infant Death, Suicide, Wender E
Changes in siblings after the death of a child from cancer.
Tags: 2012, Adaptation, Adolescent, Adult, Backlog, Barrera M, Bereavement, Cancer Nursing, Child, Cross-sectional Studies, Davies B, Death, Dietrich MS, Fairclough DL, Female, Foster TL, Gerhardt CA, Gilmer MJ, Humans, IM, Journal Article, Male, Middle Aged, N, Neoplasms, Nursing Methodology Research, Parents, Psychological, Qualitative Research, sibling bereavement, Siblings, Time Factors, Vannatta K
Research participation experiences of parents of children with cancer who were asked about their child's prognosis
Indicators of family resilience after the death of a child
Tags: 2011, Adaptation, Adult, Anecdotes as Topic, Attitude To Death, Backlog, Belgium, Child, Female, Greeff AP, Grief, Herbiest T, Humans, Infant, Journal Article, Male, Middle Aged, Newborn, Object Attachment, Omega, Parent-child Relations, Parents, Preschool, Psychological, Resilience, Self Concept, Self-Help Groups, sibling bereavement, Social Adjustment, Social Support, Survivors, Vansteenwegen A
Approaches to the difficult patient/parent encounter
Parent reports of quality of life for pediatric patients with cancer with no realistic chance of cure
Transdermal fentanyl for pain relief in a paediatric palliative care population
Tags: 2001, Administration, Adolescent, Analgesics, Backlog, Child, Cutaneous, Devine T, Female, Fentanyl/administration & dosage, Goldman A, Human, Hunt A, Journal Article, Male, Non-U.S. Gov't, Opioid/administration & dosage, Pain Measurement, Pain/drug Therapy, Palliative Care, Palliative Medicine, Parents, Patient Satisfaction, Phillips M, Preschool, Support, Terminally Ill, Treatment Outcome
Childhood bereavement after the death of a sibling.
Symptoms and Suffering at the End of Life in Children with Cancer
Tags: 2000, Anorexia/etiology/therapy, Backlog, Boston, Child, Children's Hospital (Boston), Clodronate, Constipation/etiology/therapy, Dana-Farber Cancer Institute (Boston), Death and Euthanasia, Diarrhea/etiology/therapy, Dyspnea/etiology/therapy, Ellenbogen JM, Emanuel EJ, Empirical Approach, Fatigue/etiology/therapy, Grier Holcombe E, Health Care Surveys, home care services, Humans, Journal Article, Klar Neil, Levin SB, Logistic Models, Longitudinal Studies, Neoplasms/complications/therapy, New England Journal Of Medicine, Non-U.S. Gov't, Oncology at EOL, P.H.S., Pain/etiology/therapy, Palliative Care/standards/statistics & Numerical Data, Parents, Physicians, Professional Patient Relationship, Psychological, Quality Of Health Care, Quality Of Life, Questionnaires, Research Support, Salem-Schatz S, Stress, Terminal Care, U.S. Gov't, Weeks Jane C, Withholding Treatment, Wolfe J
Posttraumatic stress and general distress among parents of children surviving a brain tumor.
Behaviour in mucopolysaccharide disorders
Tags: 1995, Aggression, Archives of Disease in Childhood, Backlog, Bax MC, Child, Child Behavior Disorders/complications, Colville GA, Data Collection, Family Health, Female, Humans, Journal Article, Male, Mucopolysaccharidoses/complications, Mucopolysaccharidosis II/psychology, Mucopolysaccharidosis III/psychology, Parents, Preschool, Prevalence, Q3 Scoping Review Results, Self-Help Groups, Sleep Disorders/complications
Oral methadone for the treatment of severe pain in hospitalized children: a report of five cases
Tags: 1998, Administration, Analgesia, Analgesics, Backlog, Burns/therapy, Case Report, Child, Clinical Journal of Pain, Davidson EM, Female, Hospitalization, Human, Journal Article, Male, Methadone/therapeutic use, Neoplasms/therapy, Nonpenetrating/therapy, Opioid/therapeutic use, Oral, Osteopetrosis/therapy, Pain/physiopathology, Palliative Care/methods, Parents, Patient-Controlled, Preschool, Rosen G, Shavelson V, Shenkman Z, Shir Y, Treatment Outcome, Wounds