Browse Items (45 total)
- Tags: Interviews As Topic
The Experiences Of Families Living With The Anticipatory Loss Of A School-age Child With Spinal Muscular Atrophy – The Parents’ Perspectives
To probe into parents’ anticipatory loss of school-age children with Type I or II spinal muscular atrophy.
Background
Spinal muscular atrophy is a rare disorder that causes death. Children die early due to either gradual atrophy…
Tags: 2016, Adult, Anticipatory Loss, Child, Female, Grief, Humans, Interviews As Topic, Journal of Clinical Nursing, July 2016 List, Male, Middle Aged, Muscular Atrophy Spinal/nursing, Muscular Atrophy Spinal/psychology, Nurse's Role, Parents/psychology, School-age Children, Spinal Muscular Atrophy, Taiwan, Yang
Dying At Lifes Beginning: Experiences Of Parents And Health Professionals In Switzerland When An ’in Utero' Diagnosis Incompatible With Life Is Made.
The disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of…
Tags: 2016, Attitude Of Health Personnel, Decision Making, Female, Fetal Congenital Malformation, Fetus/abnormalities, Fleming V, Gaps, Genetic Counseling/psychology, Humans, Iljuschin I, Interviews As Topic, Male, March 2016 List, Maurer F, Midwifery, Parents/psychology, Parpan F, Pehlke-Milde J, Pregnancy, Prenatal-diagnosis, Surveys And Questionnaires, Switzerland, Temporality, Thematic Analysis
Perceptions Of Palliative Care In The Nicu.
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…
Tags: 2016, Advances in Neonatal Care, Communication, Continuity Of Patient Care, Emotions, Falck AJ, Female, Humans, Hussey-Gardner B, Infant Newborn, Intensive Care Units Neonatal, Interviews As Topic, Male, May 2016 List, Moorthy S, Mothers/psychology, Palliative Care/utilization, Privacy, Qualitative Research, Social Support
Short Break And Emergency Respite Care: What Options For Young People With Life-limiting Conditions?
Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.
OBJECTIVE:
To explore alternative short break and…
Tags: 2016, Adolescent, Adult, Emergency Medical Services, Focus Groups, Humans, International Journal of Palliative Nursing, Interviews As Topic, Jack BA, Knighting K, Life-limiting Conditions, May 2016 List, Mitchell TK, O’Brien MR, Palliative Care, Respite Care, Short Breaks, Terminally Ill, Transition, Young Adult, Young People
Family And Healthcare Professionals’ Perceptions Of A Pilot Hospice At Home Programme For Children: A Qualitative Study
Parents commonly report a significant improvement in quality of life following the provision of hospice and supportive care and have identified a need for such a service in the home. The purpose of this study was to understand the…
Tags: 2016, Adaptation Psychological, Attitude Of Health Personnel, BMC Palliative Care, Child, Child Family Qualitative Research, Child Health Services, Claire Quinn, Critical Illness/psychology, Des Cawley, Disabled Children, Family/psychology, Female, Frances Howlin, Hospice And Palliative Care Nursing, Hospice Care/psychology, Humans, Interviews As Topic, Jay Berry, Male, Maria Brenner, Michael Connolly, Nurses/psychology, October 2016 List, Pilot Projects
Exhaust All Measures: Ethical Issues In Pediatric End-of-life Care
Tags: 2016, Cimino AN, Decision Making, Family, Health Personnel/px [psychology], Humans, Interviews As Topic, Journal of Social Work in End-of-Life & Palliative Care, Parents/px [psychology], Pediatrics, Professional-family Relations, Rueda HA, September 2017 List, Social Workers/px [psychology], Terminal Care/es [ethics], Terminal Care/px [psychology], Terminal Care/st [standards], Thieleman KJ, Wallace C, Withholding Treatment/es [ethics]
Parent Perspectives of Neonatal Intensive Care at the End-of-Life
Tags: 2016, Adaptation Psychological, Adult, Bereavement, Christian BJ, Currie ER, Day S, Decision Making, Female, Hinds PS, Humans, Infant Newborn, Intensive Care Neonatal/st [standards], Intensive Care Neonatal/td [trends], Intensive Care Units Neonatal, Interviews As Topic, Journal of Pediatric Nursing, Male, Meneses K, November 2017 List, Palliative Care/mt [methods], Palliative Care/px [psychology], Parents/px [psychology], Perception, Perna SJ, Professional-family Relations, Qualitative Research, Robinson C, Stress Psychological, Terminal Care/mt [methods], Terminal Care/px [psychology], United States
Palliative care for children and adolescents in Switzerland: a needs analysis across three diagnostic groups
Tags: 2011, Adolescent, Bergstraesser E, Child, Child Preschool, Communication, European Journal of Pediatrics, Health Services Needs And Demand, Hornung R, Hospice Care, Humans, Inglin S, Interviews As Topic, January 2018 List, Needs Assessment, Palliative Care, Parents/px [psychology], Professional-patient Relations, Qualitative Research, Switzerland
Challenging symptoms in children with rare life-limiting conditions: findings from a prospective diary and interview study with families
Tags: 2012, Acta Paediatrica, Adams S, Adolescent, Anderson G, Backlog, Child, Disease Progression, Family Health, Female, Forbat L, Gibson F, Hain R, Humans, Interviews As Topic, Journal Article, Malcolm C, Male, Medical Records, Mucopolysaccharidoses/diagnosis/psychology/therapy, Mucopolysaccharidosis I/diagnosis/therapy, Mucopolysaccharidosis III/diagnosis/therapy, Neuronal Ceroid-Lipofuscinoses/diagnosis/psychology/therapy, Preschool, Prospective Studies, Psychological, Stress, Young Adult
Equivalence reliability of the functional independence measure for children (WeeFIM) administration methods.
Tags: 1997, Activities of Daily Living, Backlog, Braun SL, Cerebral Palsy/rehabilitation, Child, Developmental Disabilities/rehabilitation, Disability Evaluation, Down Syndrome/rehabilitation, Female, Humans, Infant, Interviews As Topic, Journal Article, Lane SJ, Longitudinal Studies, Male, Nochajski S, Observer Variation, Ottenbacher KJ, Preschool, Psychometrics, Reproducibility of Results, Sperle PA, The American Journal Of Occupational Therapy.: Official Publication Of The American Occupational Therapy Association
Your child is dead
Tags: 1991, Attitude Of Health Personnel, Attitude To Death, Backlog, Bereavement, Bmj (clinical Research Ed.), Cause Of Death, Child, Communication, Dallimore D, Female, Finlay I, France, Great Britain, Humans, Infant, Interviews As Topic, Journal Article, Male, Newborn, Nurses, Parents/psychology, Physicians, Police, Preschool, Professional-family Relations, Questionnaires, Tissue and Organ Procurement, Tissue Donors
Spiritual aspects of loss at the time of a partner's death from AIDS
Subjective health complaints in adolescence--reliability and validity of survey methods
Strategies for improving transition to adult cystic fibrosis care, based on patient and parent views
Tags: 2001, Adolescent, Adolescent Health Services/organization & administration, Adolescent Transitions, Adult, Backlog, Boyle MP, Continuity Of Patient Care, Cystic Fibrosis/therapy, Farukhi Z, Female, Health Care Surveys, Humans, Interviews As Topic, Journal Article, Male, Middle Aged, Nosky ML, Patient Satisfaction/statistics & Numerical Data, Pediatric Pulmonology, Questionnaires
Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care
Tags: 2004, Adolescent, Adolescent Health Services/organization & administration, Adolescent Psychology, Adolescent Transitions, Adult, Age Factors, Attitude To Health, Backlog, Chronic Disease/psychology/therapy, Continuity Of Patient Care, Female, Great Britain, Humans, Interviews As Topic, Journal Article, Journal Of Child Health Care, Male, Patient Transfer, Professional-patient Relations, Qualitative Research, Soanes C, Social Support, Timmons S
Oregon physicians' responses to requests for assisted suicide: a qualitative study.
Tags: 2004, Assisted/es [Ethics], Assisted/lj [Legislation & Jurisprudence], Assisted/px [Psychology], Attitude Of Health Personnel, Backlog, Dobscha SK, Female, Ganzini L, Heintz RT, Humans, Interviews As Topic, Journal Article, Journal of Palliative Medicine, Male, Oregon, Physician Assisted Dying PAD, Physician-patient Relations, Physicians/px [Psychology], Press Nancy, Qualitative Research, Right to Die/lj [Legislation & Jurisprudence], Suicide
Patterns of functional decline at the end of life
Tags: 2003, Activities of Daily Living, Aged, Backlog, Cohort Studies, Death, Epidemiologic Methods, Female, Foley DJ, Frail Elderly, Guralnik JM, Humans, Interviews As Topic, JAMA, Journal Article, Lipson S, Lunney JR, Lynn J, Male, Multiple Organ Failure/physiopathology, Neoplasms/physiopathology, Sudden, Terminally Ill
Siblings' needs and issues when a brother or sister dies of cancer.
Tags: 2005, Adolescent, Adolescent AdultAttitude to Death Child FemaleGrief Humans Interviews MaleNeoplasms/psychology Qualitative Research Research Support, Adult, Attitude To Death, Backlog, Child, Female, Grief, Hellstrom AL, Humans, IM, Interviews As Topic, Journal Article, Journal Of Pediatric Oncology Nursing, Male, N, Neoplasms, Nolbris M, Non-U.S. Gov'tSibling Relations Siblings/psychology, PedPal Lit, Qualitative Research, sibling bereavement, Sibling Relations, Siblings
The economic burden of home care for children with HIV and other chronic illnesses
Tags: 2005, Acree M, American Journal Of Public Health, Backlog, California, Caregivers/economics, Child, Chronic Disease/economics, Cost Of Illness, Disabled Children, Female, Ferrando SJ, Folkman S, Harmatz P, Health Care Costs, Heyman MB, HIV Infections/economics/nursing, Home Care Services/economics, Home Nursing/economics, Humans, Interviews As Topic, Journal Article, Male, Moskowitz JT, New York City, San Francisco, Wilson L
Pediatric advance care planning.
Tags: 2005, 7 died at home and 2 died at a hospital. Eight of the children's advance directives were followed during the dying process, 9 are deceased, Advance Care Planning/og [Organization & Administration], Advance Care Planning/organization & Administration, Backlog, Child, DNAR, DNAR Outcomes, Female, Hammes BJ, Humans, including preserving their child's quality of life and avoiding unnecessary suffering., individuals in the community raised concerns about the child's advance directive. CONCLUSIONS: Even though the topic of their child's death is difficult, Infant, Interviews As Topic, Journal Article, Journal of Palliative Medicine, Kempf M, Klevan J, Male, Newborn, Parents/psychology, Parents/px [psychology], Pediatrics, PedPal Lit, Preschool, the majority of the interviewed parents found the advance care planning process for the child helpful because it assured the best care for the child, while 1 was not. Th irteen parents were interviewed. Twelve stated that the process of advance care planning benefited their children and their family. Rarely, Williams MS, Wisconsin
Disease trajectories and ACT/RCPCH categories in paediatric palliative care
Tags: 2010, Attitude To Health, Backlog, Barnes E, Caregivers, Caregivers/psychology, Child, Disease Progression, Family, Family/psychology, Female, Focus Groups, Hain R, Humans, Interviews As Topic, Journal Article, Male, Palliative Care, Palliative Care/psychology, Palliative Medicine, PEDI Study, Professional-family Relations, Qualitative Research, Simpson S, Wales, Wood F
Paradoxes in advance care planning: the complex relationship of oncology patients, their physicians, and advance medical directives.
Tags: 2010, 80 And Over, Adult, Advance Care Planning, Advance Directives, Aged, Backlog, DNAR, Dow LA, Family, Female, Humans, Interviews As Topic, Journal Article, Journal Of Clinical Oncology, Kuhn L, Lamont EB, Lyckholm L, Male, Matsuyama RK, Medical Oncology, Middle Aged, Neoplasms/px [psychology], Palliative Care, Patient Preference, Physician-patient Relations, Physicians, Ramakrishnan V, Smith TJ, Terminal Care, Young Adult
Missed opportunities-adolescents with a chronic condition (insulin-dependent diabetes mellitus) describe their cigarette-smoking trajectories and consider health risks
Tags: 2007, Acta Paediatrica, Adolescent, Adolescent Behavior/psychology, Adolescent Transitions, Adult, Attitude To Health, Backlog, Chronic Disease, Diabetes Mellitus, Female, Humans, Interviews As Topic, Journal Article, Kelly KB, Male, Parents, Peer Group, Regber S, Smoking Cessation/psychology, Smoking/adverse effects/prevention & control/psychology, Tobacco Use Disorder/psychology, Type 1/psychology
Transition in chronic illness: Who is going where?
Tags: 2008, Adolescent, Adolescent Medicine, Adolescent Transitions, Backlog, Brodie L, Child, Chronic Disease/epidemiology/therapy, Continuity Of Patient Care/organization & Administration, Delivery of Health Care/organization & administration, Hospitals, Humans, Interviews As Topic, Journal Article, Journal of Paediatrics and Child Health, New South Wales/epidemiology, Pediatric, Steinbeck KS, Towns SJ
Exploring parents' environmental needs at the time of a child's death in the pediatric intensive care unit
Parents' perspectives on physician-parent communication near the time of a child's death in the pediatric intensive care unit
Tags: 2008, Adult, Anand KJ, Backlog, Bereavement, Carcillo J, Child, Communication, Dean JM, Death, Eggly S, Female, Hospital Mortality, Hospitals, Human Development Collaborative Pediatric Critical Care Research Network, Humans, Intensive Care Units, Interviews As Topic, Journal Article, Male, Meert KL, Middle Aged, National Institute of Child Health, Newth CJ, Nicholson C, Parents/psychology, Pediatric, Pediatric Critical Care Medicine, Physician's Role, Pollack M, Preschool, Professional-family Relations, Prognosis, Truth Disclosure, United States, Willson DF, Zimmerman J
Mind the child: using interactive technology to improve child involvement in decision making about life-limiting illness.
Tags: 2010, Advance Care Planning/es [Ethics], Advance Directives/es [Ethics], Attitude To Death, Backlog, Barfield RC, Brandon D, Child, Communication, Computer-Assisted, Decision Making, DNAR, Docherty S, Harris N, Humans, Interviews As Topic, Journal Article, Patient Participation/mt [Methods], Patient Participation/td [Trends], Personal Autonomy, Qualitative Research, Schmidt M, Terminal Care, Terminal Care/es [ethics], Terminal Care/td [trends], The American Journal Of Bioethics, Thompson J
End of living: maintaining a lifeworld during terminal illness
Tags: 2009, Acquired Immunodeficiency Syndrome/psychology, Acree M, Adult, Aged, Attitude To Death, Backlog, Female, Folkman S, Goodman S, Humans, Interviews As Topic, Journal Article, Male, Middle Aged, Neoplasms/psychology, New York City, Psychology & Health, Questionnaires, San Francisco, Terminally Ill/psychology, Wrubel J
Mitochondrial disease: needs and problems of children, their parents and family. A systematic review and pilot study into the need for information of parents during the diagnostic phase.
Tags: 2007, Adult, Backlog, Child, Goverde W, Hermans-Peters M, Humans, Interviews As Topic, Journal Article, Journal Of Inherited Metabolic Disease, Kemps H, Longitudinal Studies, Mitochondrial Diseases/diagnosis/psychology, Noorda G, Parent-child Relations, Parents/education, Patient Selection, Pilot Projects, Questionnaires, Reproducibility of Results, Research Design, Schoonhoven L, Smeitink JA, van Achterberg T
Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families
Tags: 2015, Adolescent, Backlog, Brown E, Chambers L, Chesworth B, Child, Child Health Services, Children’s participation, Coad J, Disabled Children, Family, Focus Groups, Hacking S, Health Services Needs And Demand, Health Services Research, Humans, Hunt A, Interviews As Topic, Journal Article, Journal Of Child Health Care, Palliative Care, Quality Of Care, Referral And Consultation, Staniszewska S
Satisfaction with information provided to Danish cancer patients: validation and survey results
Tags: 2013, 80 And Over, Adolescent, Adult, Aged, Backlog, Cross-sectional Studies, Denmark, Female, Groenvold M, Humans, Interviews As Topic, Johnsen AT, Journal Article, Lundstrøm LH, Male, Middle Aged, Neoplasms, Patient Education and Counseling, Patient Education as Topic, Patient Satisfaction, Petersen MA, Questionnaires, Ross L
Suffering indicators in terminally ill children from the parental perspective
Tags: 2013, Adaptation, Adult, Attitude To Death, Backlog, Campos-Calderón C, Child, Cruz-Quintana F, European Journal Of Oncology Nursing: The Official Journal Of European Oncology Nursing Society, Female, García-Caro MP, Humans, Interviews As Topic, Journal Article, Male, Montoya-Juárez R, Neoplasms, Parent-child Relations, Parents, Psychological, Qualitative Research, Quality Of Life, Sánchez-García R, Schmidt-Rio-Valle J, Sorroche-Navarro C, Spain, Stress, Terminal Care, Terminally Ill
Death of One Twin during the Perinatal Period: An Interpretative Phenomenological Analysis
Tags: 2017, April 2018 List, Bereavement, congenital abnormality, Corcoran P, Female, Humans, Infant, Interviews As Topic, Journal of Palliative Medicine, Male, Meaney S, Newborn, O'Donoghue K, Palliative Care, Parents, Parents/ Psychology, Perinatal Death, Pregnancy, Qualitative, Qualitative Research, Twins
Experts' Perspectives Toward a Population Health Approach for Children With Medical Complexity
Tags: 2017, Academic Pediatrics, Attitude Of Health Personnel, Barnert ES, Chan V, Child, Child Health Services/organization & administration, Chung P J, Coller R J, Disabled Children/psychology, Female, Health Personnel/psychology, Humans, Interviews As Topic, July 2018 List, Klitzner TS, Male, Needs Assessment, Nelson BB, Padilla C, Patient-centered Care, Population Health, Preschool, Szilagyi M, Thompson LR, Treatment Outcome
Withdrawal of artificial nutrition and hydration in neonatal intensive care: parents' and healthcare practitioners' views
Tags: 2017, Belghiti E, Brunet L, Decision Making/es [Ethics], Fournier V, France, Health Personnel/es [Ethics], Health Personnel/px [psychology], Humans, Infant, Intensive Care Units, Interviews As Topic, Medicine, Health Care & Philosophy, Morals, Neonatal/es [Ethics], Newborn, October 2018 List, Parents/px [psychology], September 2018 List, Spranzi M, Withholding Treatment/es [ethics]
When and Why Do Neonatal and Pediatric Critical Care Physicians Consult Palliative Care?
Tags: 2018, American Journal Of Hospice And Palliative Care, Bourget E, Care coordination, Communication, Complex Chronic Conditions, Critical Care, Critical Care/organization & Administration, Doorenbos AZ, Family, Female, Hays R, Health Care Quality, Humans, Intensive Care Units, Interviews As Topic, Length Of Stay, Lindhorst T, Male, Neonatal/organization & administration, November 2018 List, O'Connor MR, Palliative Care, Palliative Care/organization & Administration, Patient Care Planning/organization & administration, Pediatric Intensive Care Unit, Pediatric/organization & Administration, Pediatricians/psychology, Professional Family Relations, Qualitative Research, Richards CA, Starks H
"They Say I Should not Think About It:": A Qualitative Study Exploring the Experience of Infant Loss for Bereaved Mothers in Kumasi, Ghana
Tags: 2018, Adaptation Psychological, Adult, Bereavement, Death and Dying, Developing World 2018 List, Female, Ghana, Gold K J, Grief, Humans, Infant, Infant Newborn, infant loss, Infant Mortality, Interviews As Topic, low-resource country, Male, Medically Underserved Area, Meyer AC, Mothers/ Psychology, Omega (Westport), Opoku C, Perinatal Death, Qualitative Research, Young Adult
Development of student competencies for palliative care
Tags: 2019, Adolescent, Adult, Baccalaureate, Carreno S P, Carrillo G M, Clinical Competence, Colombia, Diaz L C, Education, February 2020 List, Female, Gomez O J, Hospice and Palliative Care Nursing/ed [Education], Humans, International Journal of Palliative Nursing, Interviews As Topic, Male, Nursing, Students, Surveys And Questionnaires, Young Adult
Welcoming expertise: Bereaved parents' perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit
Tags: 2019, Adult, Australian Critical Care, Bereavement, Butler A E, Child, child and family wishes, Copnell B, Critical Illness -- Singapore, Death, Female, Grounded Theory, Hall H, Health Personnel Attitude, Hospital Mortality, Hospitalized, Humans, Intensive care unit-paediatric, Intensive Care Units Pediatric, Interviews As Topic, June 2020 List, Male, Nurse, Parents, Parents/*psychology, Pediatric, Professional-family Relations, Victoria