1
40
7
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Title
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March 2024 List
Text
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March List 2024
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Title
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Family-Centered Culture Care: Touched by an Angel
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Journal of Clinical Ethics
Date
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2019
Subject
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ethics; mental stress; morality; psychology; religion; attitude to death; child; cultural anthropology; empathy; ethnology; family nursing; Hinduism; human; human relation; Impatiens; infant; newborn; nursing staff; Touch; treatment refusal
Creator
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Hernandez JA
Description
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An Asian Indian Hindu family chose no intervention and hospice care for their newborn with hypoplastic right heart syndrome as an ethical option, and the newborn expired after five days. Professional nursing integrates values-based practice and evidence-based care with cultural humility when providing culturally responsive family-centered culture care. Each person's worldview is unique as influenced by culture, language, and religion, among other factors. The Nursing Team sought to understand this family's collective Indian Hindu worldview and end-of-life beliefs, values, and practices, in view of the unique aspects of the situation while the team integrated evidence-based strategies to provide family-centered culture care. Parental care choices conflicted with those of the Nursing Team, and some nurses experienced moral distress and cultural dissonance when negotiating their deeply held cultural and religious views to advocate for the family. The inability to reconcile and integrate a stressful or traumatic experience impacts nurses' well-being and contributes to compassion fatigue. Nurses need to be intentional in accessing interventions that promote coping and healing and moral resilience. Reflection and cultural humility, assessment, and knowledge in context, increase evidence-based culture care and positive outcomes. U.S. society's views on ethical behavior continue to evolve, and some may argue that the law should place more limits on parents' right to choose or to refuse treatment for their infants and children. Moral distress can lead to moral resilience and satisfaction of compassion when nurses provide family-centered culture care with cultural responsiveness and integrate values-based practice with evidence-based care, and aim to first do no harm.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Attitude To Death
Child
cultural anthropology
Empathy
Ethics
ethnology
Family Nursing
Hernandez JA
Hinduism
Human
Human Relation
Impatiens
Infant
Journal of Clinical Ethics
March List 2024
Mental Stress
Morality
Newborn
Nursing Staff
Psychology
Religion
touch
Treatment Refusal
-
Dublin Core
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Title
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June 2023 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2022 List
URL Address
<a href="https://spcare.bmj.com/content/early/2023/04/03/spcare-2023-004301">https://spcare.bmj.com/content/early/2023/04/03/spcare-2023-004301</a>
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Title
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Psychological distress and social support among community paediatric palliative care programme caregivers: longitudinal analysis
Publisher
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BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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Palliative Care; child; human; palliative therapy; pediatrics; home care; Social Support; social support; caregiver; distress syndrome; mental stress; letter
Creator
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Wong ECY; Au-Doung PLW; Chu YYL; Wong SSY; Li CK; Cheung YT
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Identifier
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<a href="https://spcare.bmj.com/content/early/2023/04/03/spcare-2023-004301">10.1136/spcare-2023-004301</a>
2023
Au-Doung PLW
BMJ Supportive and Palliative Care
Caregiver
Cheung YT
Child
Chu YYL
Distress Syndrome
Home Care
Human
June 2022 List
Letter
Li CK
Mental Stress
Palliative Care
Palliative Therapy
Pediatrics
Social Support
Wong ECY
Wong SSY
-
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Title
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2019 Oncology List
Text
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Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1016/j.ijrobp.2019.06.1497" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijrobp.2019.06.1497</a>
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Vulnerable Populations Receiving Palliative Radiation in a Children's Hospital: Reporting on the Underreported
Publisher
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International Journal of Radiation Oncology Biology Physics
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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adult; anesthesia; Asia; cancer radiotherapy; central nervous system tumor; child; conference abstract; controlled study; death; electronic medical record; employer; female; follow up; fraud; housing; human; immigration; lowest income group; major clinical study; male; medical record review; mental stress; neuroblastoma; organization; pain; poverty; race; radiation oncologist; radiotherapy; retrospective study; rhabdomyosarcoma; school child; South and Central America; terminal care; vulnerable population; young adult
Creator
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Wong K; Hwang L; Liu K X; Lee H J; Olch A J
Description
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Purpose/Objective(s): Few studies have examined the use of palliative radiation therapy (RT) in the pediatric population. This single institution study is one of the largest series reported of palliative RT practice patterns prior to and within the last month of life with a focus on vulnerable and underserved pediatric patients. Materials/Methods: A retrospective chart review of patients treated from 2008-2017 identified patients treated with radiotherapy with palliative intent. Demographic, diagnosis, and treatment parameters were collected from the electronic medical records. Vital status was recorded at date of death or last follow-up. Vulnerable patients were defined as belonging to a minority, adolescent and young adult (AYA), special needs, or low income population. Result(s): Of the 1092 patients treated with RT, 108 were identified as having received 227 treatments with palliative intent. Forty-five patients (42%) were female and 63 (58%) were male. The median age at the time of the first course of radiation was 11 years (range 0-25). Central nervous system (CNS) disturbance was the most common indication (n=50, 46%) followed by pain (n=44, 41%). Top primary diagnoses included CNS neoplasm (n=30, 37%), neuroblastoma (n=20, 19%), and rhabdomyosarcoma or other sarcoma (n=11, 10%). Forty-four percent were treated with anesthesia for at least one course of radiation. The median time from last course of RT to date of last follow-up was 3 months (range 0-105), and 25 patients (23%) received radiation in the last month of life. Eighty-two (76%) patients were deceased at time of review. The vulnerable constituted the overwhelming majority of the 108, only 13 (11.5%) were not. Patients were classified in the following individual categories: minority (n=90, 83.3%), AYA (n=34, 30%), special needs (n=10, 8.8%), or low income (n=70, 62%). Eight patients initially came seeking cancer treatment not available in Asia or Latin America. Latinos (n=66, 61%) were numerous and diverse, 12% were mixed race, and 18% had employer-based coverage. The most common vulnerable patients were Latin children from low income families (n=40, 35%). Obstacles to care included the immigration system, limited English, discrimination, cultural barriers, and poverty with job, transportation, and housing insecurity. Safety net and charitable organizations had scarce resources and rules intended to reduce fraud and abuse further limited access. Parents reported these challenges amplified the great psychological distress felt after the death of a child. Conclusion(s): This is the first report to document the vulnerable pediatric and AYA population receiving palliative radiation therapy at a large urban hospital. Almost a quarter of patients received treatment in the last month of life. Most commonly, a vulnerable child was Latinx from a low income family. Further investigation is needed to guide radiation oncologists on the delivery of optimal end-of-life care and address barriers to care in this population. Copyright © 2019
Identifier
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<a href="http://doi.org/10.1016/j.ijrobp.2019.06.1497" target="_blank" rel="noreferrer noopener">10.1016/j.ijrobp.2019.06.1497</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Adult
Anesthesia
Asia
cancer radiotherapy
Central Nervous System Tumor
Child
conference abstract
Controlled Study
Death
electronic medical record
employer
Female
Follow Up
fraud
housing
Human
Hwang L
immigration
International Journal Of Radiation Oncology Biology Physics
Lee H J
Liu K X
lowest income group
Major Clinical Study
Male
Medical Record Review
Mental Stress
Neuroblastoma
Olch A J
Oncology 2019 List
Organization
Pain
Poverty
race
radiation oncologist
Radiotherapy
Retrospective Study
Rhabdomyosarcoma
School Child
South and Central America
Terminal Care
vulnerable population
Wong K
Young Adult
-
Dublin Core
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Title
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November 2019 List
Text
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November 2019 List
URL Address
<a href="http://doi.org/10.1038/s41372-019-0490-y" target="_blank" rel="noreferrer noopener">http://doi.org/10.1038/s41372-019-0490-y</a>
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Title
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Early palliative care reduces stress in parents of neonates with congenital heart disease: validation of the "Baby, Attachment, Comfort Interventions"
Publisher
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Journal of perinatology : official journal of the California Perinatal Association.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
comfort; congenital heart disease; mental stress; palliative therapy; anxiety; article; child parent relation; cohort analysis; controlled study; emotional attachment; female; health care quality; human; infant; male; newborn; prospective study
Creator
An entity primarily responsible for making the resource
Callahan K; Steinwurtzel R; Brumarie L; Schechter S; Parravicini E
Description
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OBJECTIVE: To test our hypothesis that an innovative method of early palliative care called "Baby, Attachment, Comfort Interventions" reduces psychological distress in parents of neonates with congenital heart disease. STUDY DESIGN: Prospective cohort study of parents of neonates with congenital heart disease. Distress was evaluated at admission and discharge using Neonatal Unit Parental Stressor Scale and Depression Anxiety Stress Index-21. Control parents received standard of care. Intervention parents received interdisciplinary interventions aimed at improving neonatal comfort and parenting experience.
Identifier
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<a href="http://doi.org/10.1038/s41372-019-0490-y" target="_blank" rel="noreferrer noopener">10.1038/s41372-019-0490-y</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
anxiety
Article
Brumarie L
Callahan K
Child Parent Relation
Cohort Analysis
Comfort
Congenital Heart Disease
Controlled Study
emotional attachment
Female
Health Care Quality
Human
Infant
Journal of perinatology : official journal of the California Perinatal Association.
Male
Mental Stress
Newborn
November 2019 List
Palliative Therapy
Parravicini E
Prospective Study
Schechter S
Steinwurtzel R
-
Dublin Core
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Title
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October 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2019 List
URL Address
<a href="https://adc.bmj.com/content/104/Suppl_3/A321.1" target="_blank" rel="noreferrer noopener">https://adc.bmj.com/content/104/Suppl_3/A321.1</a>
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Title
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The agony of the child with complexity: Exploring the psychological impact on parents caring for children with complex healthcare needs
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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Medline; child; female; human; male; qualitative research; conference abstract; caregiver; systematic review; meta analysis; publication; social support; depression; sample size; disease exacerbation; North America; health care need; Ireland; medical leave; mental stress; parental stress; prevention; psychological well-being; social isolation
Creator
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Crothers E; Bradbury M; Lewis S; O'Gorman C; Murphy A M
Description
An account of the resource
Aims: Medical advances and improved neonatal care have led to increased survival of children with complex healthcare needs. The aim of this literature review was to explore what is known about the psychological impact on parents of caring for children with complex healthcare needs across North America and Europe, and more specifically within Ireland. Method(s): A comprehensive search of the literature published within the last ten years was performed using PubMed and PyschINFO databases. Ten papers, consisting of qualitative studies and meta-analyses, which varied in sample size and methodology, were selected for detailed review. Result(s): Recent publications emphasise that caring for a child with complex care needs has a significant negative impact on the psychological wellbeing of parents. Several qualitative studies have shown that caregivers of children with life-limiting illness are up to twice as likely to report higher levels of parenting stress and depressive symptoms than parents of healthy children. The literature suggests that women experience greater parenting stress in caring for severely ill children than men, with one study noting an increase in maternal sick leave for psychological distress. However, women were more likely to report being the predominant caregiver, which could account for this discrepancy. Social isolation was a recurring factor contributing to the perceived burden of stress experienced by caregivers. Similar themes were evident across North America and Europe publications. We noted a paucity of research in the Irish context. Conclusion(s): Further research is needed to evaluate the psychological impact of caring for a child with complex healthcare needs and to guide management and prevention of parental stress and psychological illness, particularly in Ireland. Additional studies are needed to determine if increased social support reduces psychological stress and to investigate the effects of parental stress on disease progression in children with complex heathcare needs.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Archives of Disease in Childhood
Bradbury M
Caregiver
Child
conference abstract
Crothers E
Depression
disease exacerbation
Female
health care need
Human
Ireland
Lewis S
Male
medical leave
Medline
Mental Stress
meta analysis
Murphy A M
North America
O'Gorman C
October 2019 List
Parental Stress
Prevention
Psychological Well-being
publication
Qualitative Research
Sample Size
Social Isolation
Social Support
Systematic Review
-
Dublin Core
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Title
A name given to the resource
June 2018 List
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2018 List
URL Address
<a href="http://doi.org/10.1080/24694193.2017.1376360" target="_blank" rel="noreferrer noopener">http://doi.org/10.1080/24694193.2017.1376360</a>
Dublin Core
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Title
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Two Futures: Financial and Practical Realities for Parents of Living With a Life Limited Child
Publisher
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Comprehensive child and adolescent nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
economics; empathy; nursing; psychology; adult; climacterium; complication; coping behavior; critical illness; etiology; female; human; male; mental stress; parent; pediatric intensive care unit; qualitative research; social support
Creator
An entity primarily responsible for making the resource
Randall DC
Description
An account of the resource
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 with their families. In most cases this means the child's carers, their parents, most often their mothers, are required to undertake a great deal of the child's care. During a project on parental coping I became aware of the ways in which parents were restructuring their working lives in order to meet the demands of the nursing and medical care needs of their children. In this paper I relate the stories we discovered in this qualitative study and discuss the tensions between parental and state's responsibility for children, carers and the political and cultural rights and responsibilities pertaining to children's care. I use Margret Urban Walker's ideas of expressive collaborative morality to argue that the care of life limited and life threatened children should be framed in a negotiation between the state and the carers, both informal and professional. That such an agreement should include a covenant to assist parents and siblings when a child dies to recover and adjust to their loss, in recognition of the work they have performed in caring for the child during their child's life and their death.
Identifier
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<a href="http://doi.org/10.1080/24694193.2017.1376360" target="_blank" rel="noreferrer noopener">10.1080/24694193.2017.1376360</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adult
climacterium
Complication
Comprehensive Child and Adolescent Nursing
Coping Behavior
Critical Illness
economics
Empathy
etiology
Female
Human
June 2018 List
Male
Mental Stress
Nursing
Parent
Pediatric Intensive Care Unit
Psychology
Qualitative Research
Social Support
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
December 2017 List
URL Address
<a href="http://doi.org/10.1097/ANC.0000000000000355" target="_blank" rel="noreferrer">http://doi.org/10.1097/ANC.0000000000000355</a>
Notes
<p>Using Smart Source Parsing<br />( (pp Date of Publication: 01 Apr 2017</p>
Dublin Core
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Title
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Exploring NICU Nurses' Affective Responses to End-of-Life Care
Publisher
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Advances In Neonatal Care : Official Journal Of The National Association Of Neonatal Nurses
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Affect; Newborn Intensive Care; Psychology; Verbal Communication; Adult; Aged; Anger; Coping Behavior; Female; Guilt; Human; Identity; Mental Stress; Middle Aged; Neonatal Intensive Care Unit; Neonatal Nurse; Qualitative Research; Terminal Care
Creator
An entity primarily responsible for making the resource
Lewis SL
Description
An account of the resource
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 aspects of end-of-life care (EOLC) are still not delivered consistently. Little is known about how NICU nurses' individual experiences affect EOLC. PURPOSE: The purpose of this study was to explore, through lived and told stories, the affective, interactional, and meaning-related responses that NICU nurses have while caring for dying infants and their families. Coping strategies and changes in practice were also explored. METHODS: Thirty-six members of the National Association of Neonatal Nurses submitted written narratives about an EOLC experience during which the nurse experienced strong emotions. FINDINGS: Narrative analysis revealed many affective responses, but 3 were the most frequent: responsibility, moral distress, and identification. Coping methods included healthy and less healthy strategies, such as colleague support, informal and formal debriefing, practicing intentional gratefulness, avoidance, and compartmentalization. Changes in practice identified were universally described as professional growth through the use of reflective practice. IMPLICATIONS FOR PRACTICE & RESEARCH: Educators should discuss the range of emotions experienced by caregivers related to EOLC and healthy coping strategies and encourage the use of reflective practice as a facilitator of professional growth. Nurse leaders should promote supportive environments in NICUs and ensure debriefing opportunities for nurses who have recently cared for a dying infant. Future research should focus on formulating interventions to utilize debriefing with NICU nurses and perhaps the development of EOLC mentors.
Identifier
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<a href="http://doi.org/10.1097/ANC.0000000000000355" target="_blank" rel="noreferrer">10.1097/ANC.0000000000000355</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Adult
Advances In Neonatal Care : Official Journal Of The National Association Of Neonatal Nurses
Affect
Aged
Anger
Coping Behavior
December 2017 List
Female
Guilt
Human
Identity
Lewis SL
Mental Stress
Middle Aged
Neonatal Intensive Care Unit
Neonatal Nurse
Newborn Intensive Care
Psychology
Qualitative Research
Terminal Care
Verbal Communication