A Spiritual Prescription to Bereaved Parents of Children Died Due to Coronavirus Disease 2019
Bereavement; Coronavirus Disease 2019; Spiritual Care; Bereavement; Coronavirus 19; Parent; Child; Child Death; Dying; Editorial; Financial Management; Grief; Healing; Health Care Personnel; Hopelessness; Human; Life History; Medical Care; Palliative Therapy; Psychosocial Care; Religion; Sudden Cardiac Death
Çaksen H
Journal of Child Science
2022
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).
<a href="http://doi.org/10.1055/s-0042-1757146" target="_blank" rel="noreferrer noopener">10.1055/s-0042-1757146</a>
Adaptational process of parents of pediatric oncology patients
Child; Female; Humans; Male; Adult; Data Collection; Aged; Middle Aged; Family Relations; Religion; Family Health; adolescent; Preschool; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Caregivers/psychology; infant; Parents/psychology; Psychological; Stress; social support; Neoplasms/psychology; Taiwan/ethnology
This study, based on grounded theory, explores the adaptational process of parents of pediatric oncology patients. Thirty-two Taiwanese parents (26 mothers and 6 fathers) were interviewed. Data were collected through individual in-depth and focus group interviews, observations, medical chart review, nurses' note, and researchers' reflexive journals. The findings suggest that parents adapt to their children's cancer by a dynamic process; i.e., they modify their coping tasks and related strategies as clinical events (e.g., diagnosis, side effects, relapses, or death) occur. This adaptational process consisted of five components: confronting treatment, maintaining family integrity, establishing support, maintaining emotional well-being, and searching for spiritual meaning. Related factors such as coping tasks are described.
2000
Yeh CH; Lee TT; Chen ML; Li W
Pediatric Hematology And Oncology
2000
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).
Journal Article
<a href="http://doi.org/10.1080/088800100276479" target="_blank" rel="noreferrer">10.1080/088800100276479</a>
An Overview of Ethical Issues Raised by Medicolegal Challenges to Death by Neurologic Criteria in the United Kingdom and a Comparison to Management of These Challenges in the USA
Brain injury; end-of-life issues; Great Britain; law; neurology; Pediatric; religion
Although medicolegal challenges to the use of neurologic criteria to declare death in the USA have been well-described, the management of court cases in the United Kingdom about objections to the use of neurologic criteria to declare death has not been explored in the bioethics or medical literature. This article (1) reviews conceptual, medical and legal differences between death by neurologic criteria (DNC) in the United Kingdom and the rest of the world to contextualize medicolegal challenges to DNC; (2) summarizes highly publicized legal cases related to DNC in the United Kingdom, including the nuanced 2022 case of Archie Battersbee, who was transiently considered dead by neurologic criteria, but ultimately determined to be in a vegetative state/unresponsive-wakeful state; and (3) provides an overview of ethical issues raised by medicolegal challenges to DNC in the United Kingdom and a comparison to the management of these challenges in the USA.
Lewis A
American Journal of Bioethics
2023
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).
<a href="http://doi.org/10.1080/15265161.2022.2160516" target="_blank" rel="noreferrer noopener">10.1080/15265161.2022.2160516</a>
Assessment Of The Spiritual Needs Of Primary Caregivers Of Children With Life-limiting Illnesses Is Valuable Yet Inconsistently Performed In The Hospital.
Quality Of Life; Pediatric Palliative Care; Religion; Cancer-patients; Health Care Sciences & Services Associations
BACKGROUND:
Religion and spirituality influence how many patients and families experience illness, but knowledge of the level of spiritual care provided to caregivers of pediatric patients within the hospital is limited.
OBJECTIVE:
We evaluated patient caregivers' perceptions of the extent to which their religious and spiritual (R/S) needs were assessed and addressed in the hospital.
METHODS:
We surveyed primary caregivers of children referred to palliative care <1 year prior at an urban, pediatric academic medical center. Participants completed a structured questionnaire with quantitative and qualitative measures of the provision of spiritual care in the hospital. Nonparametric tests were used to compare various measures of perceived and desired R/S support.
RESULTS:
The majority (16/24) of caregivers desired inquiry about R/S needs by the medical team. Fewer than half (12/25) had these needs assessed. No subjects were uncomfortable with questions regarding R/S needs. Only 35% (8/23) specifically wanted a physician to inquire about R/S needs. Subjects whose R/S needs were assessed perceived higher levels of support from the medical team (4.40 versus 3.08, p = 0.02). A significant correlation existed between number of hospital-based R/S resources used and reported R/S-related comfort (rs = 0.438, p = 0.043).
CONCLUSIONS:
Assessment of R/S needs of caregivers of pediatric palliative care patients is performed less often than desired, even though it can improve perceptions of support from medical teams. Use of hospital-based R/S resources can increase spiritual comfort. Standardizing assessment of caregivers' R/S needs and referral to appropriate resources is a target for quality improvement in pediatric palliative medicine.
Kelly JA; May CS; Maurer SH
Journal Of Palliative Medicine
2016
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Association between religious and socio-economic background of parents of children with solid tumors and DNR orders
adolescent; Child; Female; Humans; infant; Male; retrospective studies; Survival Rate; Young Adult; Neoplasms; decision making; Adult; Parents; Education; Prognosis; Follow-Up Studies; Socioeconomic Factors; Resuscitation Orders; Religion; Medical Records; Preschool
BACKGROUND: The influence of socio-economic and religious background on decisions made by parents of children with incurable cancer regarding DNR orders is not fully understood. PROCEDURE: A retrospective analysis of medical charts of patients who died between January 2000 and January 2011 was performed. The following data were sought: written evidence of DNR discussion with parents, religious background, educational level, monthly income. RESULTS: There was evidence of a discussion on DNR in 73/90 charts. DNR consent was obtained in 14/17 (82.4%) cases where at least one parent had >15 years of education versus in only 24/45 (53.3%) cases where both parents had ≤15 years education as determined by univariate analysis (P = 0.03). DNR consent was also more likely to be obtained among parents of children with income >10,000 NIS (24/30, 80.0% vs. 20/38, 52.6%, P = 0.013). Parents of Jewish (22/30, 73.3%), Islamic (16/26, 61.5%), and Christian (8/9, 88.9%) background were equally likely to provide DNR consent. However, Druze families were less likely to do so (2/8, 25.0%, P = 0.036). CONCLUSIONS: The process of decision-making to a DNR request was associated with parents' educational level and monthly family income, and not by religious background, with the exception of Druze families.
2014-02
Hileli I; Weyl Ben Arush M; Hakim F; Postovsky S
Pediatric Blood & Cancer
2014
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Journal Article
<a href="http://doi.org/10.1002/pbc.24712" target="_blank" rel="noreferrer">10.1002/pbc.24712</a>
Children's understanding of dying and death: A multinational grounded theory study
Child; child; adult; article; controlled study; female; human; male; palliative therapy; sibling; clinical article; interview; Only Child; multicenter study; adolescent; thinking; qualitative research; religion; grounded theory; genetic transcription; Uganda; Haiti; altruism; vocabulary
OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which children directly involved with life-limiting conditions understand dying and death. <br/>METHOD(S): This qualitative study obtained interview data from N = 44 5-18-year-old children in the USA, Haiti, and Uganda who were pediatric palliative care patients or siblings of patients. Of these, 32 were children with a serious condition and 12 were siblings of a child with a serious condition. Interviews were recorded, transcribed, verified, and analyzed using grounded theory methodology. <br/>RESULT(S): Loss of normalcy and of relationships emerged as central themes described by both ill children and siblings. Resilience, altruism, and spirituality had a bidirectional relationship with loss, being strategies to manage both losses and anticipated death, but also being affected by losses. Resiliency and spirituality, but not altruism, had a bidirectional relationship with anticipating death. Themes were consistent across the 3 samples, although the beliefs and behaviors expressing them varied by country. SIGNIFICANCE OF RESULTS: This study partially fills an identified gap in research knowledge about ways in which children in 3 nations understand dying and death. While children often lack an adult vocabulary to express thoughts about dying and death, results show that they are thinking about these topics. A proactive approach to address issues is warranted, and the data identify themes of concern to children.
McPoland P; Grossoehme DH; Sheehan DC; Stephenson P; Downing J; Deshommes T; Gassant PYH; Friebert S
Palliative and Supportive Care
2023
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<a href="http://doi.org/10.1017/S1478951523000287" target="_blank" rel="noreferrer noopener">10.1017/S1478951523000287</a>
Complementary and alternative therapy use in pediatric oncology patients with failure of frontline chemotherapy
Child; Female; Humans; infant; Male; Survival Rate; Young Adult; Adult; Questionnaires; Treatment Outcome; Religion; Complementary Therapies; Treatment Failure; adolescent; Preschool; infant; Newborn; Neoplasms/therapy; Antineoplastic Agents/therapeutic use; Salvage Therapy
BACKGROUND: The use of CAM by the relapsed pediatric oncology population has largely gone unstudied. The main objective of this study was to describe the prevalence of and change in CAM use in oncology patients for whom frontline therapy had failed. Secondary objectives included describing patient/family objectives for using CAM, satisfaction with CAM, financial and time expenditures on CAM, and patient desire for physician involvement in CAM use. PROCEDURE: Fifty-four patients 0-25 years of age, for whom frontline therapy had failed, were enrolled. The subjects completed an anonymous one-time self-administered questionnaire. RESULTS: Eighty-two percent of respondents reported using CAM, 52% of which reported initiating or increasing CAM use after failure of frontline therapy. The most commonly used CAM categories were prayer/spiritual healing (83%) and oral/dietary supplements (31%). Prayer/spiritual healing was most commonly used to cure or slow the progression of cancer (59%). Oral/dietary supplements were used to improve overall health and well-being (65%). Estimates of money and time spent ranged from $0 to >$1,275 (median $225) and 1 to > 700 hr (median 10 hr). Sixty percent of CAM users reported their oncologist was unaware of their use. Most participants who used non-spiritual/prayer CAM continued use while hospitalized or while receiving chemotherapy. CONCLUSIONS: Understanding usage patterns may better help pediatric oncologists and palliative-care specialists address the needs of this population, and protect against potentially dangerous drug interactions or side effects from combined CAM and chemotherapy use.
Paisley MA; Kang T; Insogna IG; Rheingold SR
Pediatric Blood & Cancer
2011
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Journal Article
<a href="http://doi.org/10.1002/pbc.22939" target="_blank" rel="noreferrer">10.1002/pbc.22939</a>
Constructions of Mexican American family grief after the death of a child: an exploratory study
Child; Humans; Family Relations; Religion; Case-Control Studies; bereavement; Family/psychology; Attitude to Death/ethnology; SSHRC CURA; Dreams; Mexican Americans/psychology
Using a collective case study ethnographic approach, nine individuals comprising three Mexican American families were interviewed about their family bereavement experiences after the death of a child. All families were Catholic, had surviving siblings, and had had three or more years to grieve their loss when interviewed. The deceased children ranged in age from 3 to 14, and all experienced sudden, traumatic, nonsuicide deaths. To provide a broader, contextual picture of their grief experiences, four individuals who supported these family members after the loss were also interviewed. Unique grief experiences were identified, and eight common themes emerged, reflecting the ways in which family members maintained their bond to the deceased: dreams, storytelling, keepsakes, sense of presence, faith-based connections, proximity connections, ongoing rituals, and pictorial remembrances. The cultural implications of family bereavement are highlighted.
2006
Doran G; Downing HN
Cultural Diversity & Ethnic Minority Psychology
2006
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Journal Article
<a href="http://doi.org/10.1037/1099-9809.12.2.199" target="_blank" rel="noreferrer">10.1037/1099-9809.12.2.199</a>
Decision-making at the limit of viability: Differing perceptions and opinions between neonatal physicians and nurses
infant mortality; medical decision making; nurse attitude; physician attitude; adult; article; assisted ventilation; controlled study; enteric feeding; female; hospital policy; human; legal aspect; male; medical practice; neonatal intensive care unit; neonatal nurse; neonatologist; patient participation; prematurity; questionnaire; religion; Switzerland; terminal care; work experience
Background: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants. Methods: All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between neonatologists and NICU nurses and between language regions were explored. Results: Ninety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given. Conclusions: Physicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability.Copyright © 2018 The Author(s).
Bucher HU; Klein SD; Hendriks MJ; Baumann-Holzle R; Berger TM; Streuli JC; Fauchere JC; Philipp M; Roland N; Renate I; Mathias N; Liliane S; Brigitte S; Kai R; Riccardo P; Matthias R; Magali C; Ulrike S; Gudrun J; Ruth D; Jean-Claude F; Barbara D
BMC Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1186/s12887-018-1040-z" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1040-z</a>
End-of-life decisions in perinatal care: A view from health-care providers in Mexico
Attitude Of Health Personnel;decision Making;perinatal Care;terminal Care/psychology; Abortion; Adult; Aged; Attitude To Death; Euthanasia; Female; Fetal Diseases; Humans; Induced/psychology; Infant; Male; Mexico; Middle Aged; Newborn; Nurses/psychology; Palliative Care/psychology; Passive/psychology; Perinatal Death; Physicians/psychology; Pregnancy; Religion; Social Workers/psychology; Young Adult
OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers, and nurses in perinatal care. Differences were evaluated using the chi square and Student's t tests. RESULTS: When considering severely ill fetuses and newborns, 82% and 93% of participants, respectively, opted for providing palliative care, whereas 18% considered feticide as an alternative. Those who opted for palliative care aimed to diminish suffering and those who opted for intensive care intended to protect life or sanctity of life. There was poor knowledge about the laws that regulate these decisions. CONCLUSIONS: Although there is no consensus on what decisions should be taken with severely ill fetuses or neonates, most participants considered palliative care as the first option, but feticide or induced neonatal death was not ruled out.
Grether P; Lisker R; Loria A; Alvarez-del-Rio A
Salud Publica De Mexico
2015
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<a href="https://www.ncbi.nlm.nih.gov/pubmed/26679311" target="_blank" rel="noreferrer">26679311</a>
Ethical dilemmas encountered by a palliative care team at a Pediatric cancer center in guatemala
adolescent; poverty; intensive care; blood transfusion; palliative therapy; major clinical study; retrospective study; cancer patient; patient autonomy; sound; treatment withdrawal; religion; pregnancy; case study; physician; cancer therapy; childhood cancer; conference abstract; justice; medical record review; human; child; female; adult; patient care; surgery; drug withdrawal; multidisciplinary team; cancer center; Guatemala; bioethics; brain death; cancer surgery; substance abuse; treatment refusal
Bustamante Tuchez LM; Rivas S; Paz G; Valverde P; Zaidi A; Close P
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
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
Health Personnel Attitude; Psychology; Religion; Adolescent; Adult; Child; Health Care Personnel; Human; Human Relation; Palliative Therapy; Young Adult
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. METHOD: We analysed thematically presentations and small group discussions with HCP that took place as part of a day-long workshop exploring the place of spirituality in paediatric healthcare. RESULTS: (1) HCP conceptualised spirituality as highly individualised searches for meaning, hope and connectedness to self, others and the world. They saw spirituality within a developmental context. (2) HCP described spiritual concerns that were tied to their own conceptualisations of spirituality, centring on ideas of loss, including loss of hope or meaning. (3) HCP approached spiritual concerns of CYP and families by 'being there' and supporting spiritual enquiry. (4) Challenges to their work included managing hopes of CYP and families in the face of poor prognoses, discussions about miracles and issues with their own faith. Spiritual care was seen as different to other areas of care which HCP felt had a greater prescription in delivery. CONCLUSIONS: The findings underscore the complexity of spirituality in times of illness and the challenges faced in its management. HCP should be alerted to the myriad ways spirituality emerges in serious illness and opportunities for developing confidence in attending to spiritual issues with CYP and families through training. Research should explore with patients, families and HCP how tensions among CYP, autonomy, the maintenance of hope and miracle beliefs are best approached within care.
Llewellyn H; Jones L; Kelly P; Barnes J; O'Gorman B; Craig F; Bluebond-Langner M
Bmj Supportive & Palliative Care
2015
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<a href="https://doi.org/10.1136/bmjspcare-2012-000437" target="_blank" rel="noreferrer"><span class="highlight">10.1136</span>/bmjspcare-2012-000437</a>
Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study
child; Palliative Care; adult; article; female; human; male; palliative therapy; aged; coping; knowledge; Spain; personal experience; terminal disease; parent; qualitative research; health care personnel; decision making; interview; pediatric hospital; clinician; religion; philosophy; religiosity; Southern European
Background: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents' own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs. Methods: Qualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis. Results: The three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents' decision-making, and how the onset of their child's serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one's own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations). Conclusions: Inflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents' spirituality in an individualized way that responds to the uniqueness of their experiential process.
Miquel P; Clemente I; Ciccorossi M
BMC Palliative Care
2024
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).
<a href="http://doi.org/10.1186/s12904-024-01345-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01345-2</a>
Exploring the vagueness of Religion & Spirituality in complex pediatric decision-making: A qualitative study
decision making;intensive care;life sustaining treatment;neonatology;Palliative therapy;qualitative research;religion;treatment withdrawal;article;Child;father;genetic transcription;health care personnel;Human;human tissue;interview;major clinical study;Male;medical record;mother;narrative;prognosis;thematic analysis
Background: Medical advances have led to new challenges in decision-making for parents of seriously ill children. Many parents say religion and spirituality (R&S) influence their decisions, but the mechanism and outcomes of this influence are unknown. Health care providers (HCPs) often feel unprepared to discuss R&S with parents or address conflicts between R&S beliefs and clinical recommendations. Our study sought to illuminate the influence of R&S on parental decision-making and explore how HCPs interact with parents for whom R&S are important. Methods: A longitudinal, qualitative, descriptive design was used to (1) identify R&S factors affecting parental decision-making, (2) observe changes in R&S themes over time, and (3) learn about HCP perspectives on parental R&S. The study sample included 16 cases featuring children with complex life-threatening conditions. The length of study for each case varied, ranging in duration from 8 to 531 days (median = 380, mean = 324, SD = 174). Data from each case included medical records and sets of interviews conducted at least monthly with mothers (n = 16), fathers (n = 12), and HCPs (n = 108). Thematic analysis was performed on 363 narrative interviews to identify R&S themes and content related to decision-making. Results: Parents from 13 cases reported R&S directly influenced decision-making. Most HCPs were unaware of this influence. Fifteen R&S themes appeared in parent and HCP transcripts. Themes most often associated with decision-making were Hope & Faith, God is in Control, Miracles, and Prayer. Despite instability in the child's condition, these themes remained consistently relevant across the trajectory of illness. R&S influenced decisions about treatment initiation, procedures, and life-sustaining therapy, but the variance in effect of R&S on parents' choices ultimately depended upon other medical & non-medical factors. Conclusions: Parents consider R&S fundamental to decision-making, but apply R&S concepts in vague ways, suggesting R&S impact how decisions are made more than what decisions are made. Lack of clarity in parental expressions of R&S does not necessarily indicate insincerity or underestimation of the seriousness of the child's prognosis; R&S can be applied to decision-making in both functional and dysfunctional ways. We present three models of how religious and spiritual vagueness functions in parental decision-making and suggest clinical applications.
Superdock AK;Barfield RC;Brandon DH;Docherty SL
BMC Palliative Care
2018
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).
<a href="http://doi.org/10.1186/s12904-018-0360-y" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0360-y</a>
Facilitators and barriers perceptions to early referral to pediatric palliative care perceived
child; Palliative Care; adult; article; controlled study; female; human; major clinical study; male; palliative therapy; Referral and Consultation; patient referral; pediatrician; clinical practice; multicenter study; religion; perception; demography; professional practice
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of children with cancer. Methods: A 36-question survey based on preliminary, single-institution data was electronically distributed to pediatric oncology physicians, nurse practitioners, nurses, and social workers nationally. The principal outcomes measured included perceived barriers and facilitators to early integration of pediatric palliative care. Data were analyzed using Rv3.1.2 statistical software. Results: Most respondents agreed that the PCT does not negatively impact the role of the oncologist; however, there were concerns that optimal patient care may be limited by pediatric oncologists' need to control all aspects of patient care (P < 0.001). Furthermore, oncologists, more than any provider group, identified that the emotional relationship they form with the patients and families they care for, influences what treatment options are offered and how these options are conveyed (P < 0.01). Education and evidence-based research remain important to all providers. Respondents reached consensus that early integration of a PCT would provide more potential benefits than risks and most would not limit access to palliative care based on prognosis. Conclusions: Overall, providers endorse early integration of the PCT for children with cancer. There remains a continued emphasis on provider and patient education. Palliative care is generally accepted as providing a benefit to children with cancer, though barriers persist and vary among provider groups.
Ceballos-Yanez D; Patricio AP; Eugenin-Soto MI
Andes Pediatrica
2023
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).
<a href="http://doi.org/10.32641/andespediatr.v94i3.4382" target="_blank" rel="noreferrer noopener">10.32641/andespediatr.v94i3.4382</a>
Family-Centered Culture Care: Touched by an Angel
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
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.
Hernandez JA
Journal of Clinical Ethics
2019
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).
Fathers' experiences in the neonatal intensive care unit: a search for control.
Humans; Infant, Newborn; Critical Illness; Male; Professional-Family Relations; Communication; Qualitative Research; Interviews as Topic; Religion; Stress, Psychological; Infant, Premature; Father-Child Relations; *Intensive Care Units, Neonatal; *Fathers/px [Psychology]; Intensive Care Units, Neonatal/og [Organization & Administration]; *Internal-External Control
OBJECTIVE: This qualitative study aimed at understanding the experiences of fathers of very ill neonates in the NICU., METHODS: Sixteen fathers of very ill and/or very preterm infants who had been in the NICU for >30 days were interviewed by a male physician. Fathers were asked about their level of comfort with or concerns about staff communication regarding their infant, about accessing information, and about more general perceptions of their experience in the neonatal intensive care unit. Interviews were audiotaped and transcribed for analysis. Coding used content analysis with construction of themes by 3 researchers., RESULTS: The overarching theme for fathers was a sense of lack of control. Their world view, as a "backdrop" theme, provided context for all of the themes. Four other interrelated subthemes were identified, including information; communication, particularly with the health care team; fathers' various roles; and external activities. Fathers reported that relationships with friends/family/health care team, receiving information consistently, and receiving short written materials on common conditions were ways of giving them support. The fathers said that speaking to a male physician was a positive and useful experience., CONCLUSIONS: Fathers experience a sense of lack of control when they have an extremely ill infant in the NICU. Specific activities help fathers regain a sense of control and help them fulfill their various roles of protectors, fathers, partners, and breadwinners. Understanding these experiences helps the health care team offer targeted supports for fathers in the NICU.
Arockiasamy, Vincent; Holsti, Liisa; Albersheim, Susan
Pediatrics
2008
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).
<a href="http://doi.org/10.1542/peds.2007-1005" target="_blank" rel="noreferrer noopener">10.1542/peds.2007-1005</a>
Flourishing, religion, and burnout among caregivers working in pediatric palliative care
child; Palliative Care; article; controlled study; female; human; male; palliative therapy; coping; dying; South Africa; qualitative analysis; caregiver; cross-sectional study; prevalence; adolescent; multidisciplinary team; convenience sample; job satisfaction; religion; work environment; life satisfaction; terminally ill patient; burnout; job stress
Introduction: Providers working with children who are dying are especially prone to burnout. Encouraging models of human flourishing may mitigate burnout and improve quality of care. However, models of job satisfaction and human flourishing have not been well-described. This project explores factors that promote human flourishing among caregivers working with children in pediatric palliative care in South Africa. Methods: A convenience sample of caregivers working in pediatric palliative care were invited to complete an anonymous, confidential survey comprised of validated instruments. The survey also included open-ended questions to explore opinions and attitudes about satisfaction, struggles, and coping. Results: Twenty-nine people from a variety of occupations and work environments completed the survey. The prevalence of burnout was 3/29 (10%). Life satisfaction was associated with private religious activities (P = .38, P < .05), and carrying religion into all aspects of life (P = .44, P < .05). Burnout was not associated with life satisfaction. Qualitative analysis of the open-ended questions revealed the following themes as factors contributing to their joy in work: being able to make a difference, finding meaning and purpose, having a relationship with the children and their families, and with the multi-disciplinary team. The greatest challenges in their work were identified as the lack of resources, challenges within their team, and emotional demands. Conclusions: Despite job stress and working with terminally ill children, several factors were associated with flourishing. These findings are particularly relevant to enhance caregiving in the resource-challenged setting of pediatric palliative care in South Africa.
Oberholzer AE; Doolittle BR
International Journal of Psychiatry in Medicine
2024
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).
<a href="http://doi.org/10.1177/00912174241229926" target="_blank" rel="noreferrer noopener">10.1177/00912174241229926</a>
Health-Care Provider Personal Religious Preferences and Their Perspectives on Advance Care Planning With Patients
Spirituality; advance care planning; Terminal Care/psychology; Middle Aged; Male; Young Adult; Humans; Adult; Female; Decision Making; Attitude of Health Personnel; Religion; advance directives; hospital-specific palliative care issues; spirituality; religion; Health Personnel/psychology; Advance Care Planning/statistics & numerical data; attitude of health personnel; Clergy/psychology; living wills; Living Wills/psychology/statistics & numerical data; physician patient communication
OBJECTIVE:: To understand how health-care providers' (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP's involvement. METHODS:: Online anonymous survey distributed to HCPs in hospital, ambulatory offices, and hospice settings in Dayton, Ohio. We evaluated the associations of HCP religion with their personal ACP, willingness to facilitate ACP, and acceptance of other HCPs' ACP participation. RESULTS:: 704 respondents: nurses (66.2%), physicians (18.8%), other HCPs (15.0%), white (88.9%), and primarily Catholic (23.3%) or Protestant (32.0%). "No religion" was marked by 13.9%. Respondents were favorable to ACP with patients. Religious respondents were more likely to have a living will ( P = .035) and health-care power of attorney ( P = .007) and more accepting of clergy as ACP decision coaches ( P = .030). HCP's religion was not associated with willingness to facilitate ACP discussions. There were minor differences between Catholics and Protestants. CONCLUSIONS:: Personal religious preference is associated with HCP's own ACP but had little relationship with their willingness to facilitate ACP conversations with patients or acceptance of other professional types of HCPs involvement in ACP conversations. Regardless of religious affiliation, HCPs have interest in undertaking ACP and endorse other HCPs ACP involvement. As results of this study suggest that personal religious affiliation is not a barrier for HCPs engaging in ACP with patients, attempts to overcome barriers to increasing ACP should be directed to other factors.
Bowman M; St Cyr S; Stolf I A
American journal of hospice & palliative care
2018
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).
<a href="http://doi.org/10.1177/1049909118785891" target="_blank" rel="noreferrer noopener">10.1177/1049909118785891</a>
In every detail: spiritual care in pediatric palliative care perceived by healthcare providers
child; article; controlled study; human; palliative therapy; China; interview; health care personnel; qualitative research; social worker; therapy; thematic analysis; religion; nurse; spiritual care; developing country
Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. Objectives: To identify spiritual care in pediatric palliative care services in mainland China from the perspective of healthcare professionals. Methods: A qualitative descriptive interview study was conducted individually with 27 participants: 14 physicians, seven nurses, and six social workers. The data were analyzed using thematic analysis. Results: Participants described that the essence of spiritual support was provided "in every detail" throughout pediatric palliative care. Four major themes and eleven subthemes were identified. 1) Assessing spiritual needs: paying attention to different perspectives; considering religion, tradition, and culture; discovering spiritual needs behind other needs. 2) Facilitating spiritual exploration: being with the family; providing resources; guiding by providers' own faith; 3) Supporting connections: encouraging the building of personal bonds; facilitating the establishment of spiritual connections. 4) Relieving spiritual suffering: facilitating a family review of child's life; supporting building meaning in daily life; assisting in leaving a legacy for the child. Conclusion: This study illustrated that current spiritual support, though not formally organized, is provided individually in pediatric palliative care services in mainland China. Strategies for a practice guide, education and training for professionals, and cultural building need to be rationally developed to strengthen and structure spiritual support integrated into pediatric palliative care.
Cheng L; Cai S; Zhou X; Zhai X
Journal of Pain and Symptom Management
2023
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2023.11.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.11.005</a>
Inter-religious perspectives on hope and limits in cancer treatment: one Buddhist chaplain's response to the case
Humans; Prognosis; Family Health; PedPal Lit; decision making; Palliative Care; Religion; Buddhism; Mother-Child Relations; Neoplasms/drug therapy/pathology/psychology
2005
Corbett-Hemeyer J
Journal Of Clinical Oncology
2005
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).
Journal Article
Neonatal end-of-life care: A single-center NICU experience in Israel over a decade
newborn care; newborn mortality; adrenal insufficiency/ep [Epidemiology]; anemia/ep [Epidemiology]; Article; brain edema/ep [Epidemiology]; brain hemorrhage/ep [Epidemiology]; cause of death; child parent relation; congenital malformation/ep [Epidemiology]; gestational age; Human; Incidence; Israel; Jerusalem; kidney failure/ep [Epidemiology]; Medical Decision Making; Middle East; necrotizing enterocolitis/ep [Epidemiology]; Newborn; newborn death; newborn hypoxia/ep [Epidemiology]; Newborn Intensive Care; newborn sepsis/ep [Epidemiology]; practice guideline; prematurity; priority journal; quality of life; Religion; respiratory failure/ep [Epidemiology]; sepsis/ep [Epidemiology]; shock/ep [Epidemiology]; treatment duration
OBJECTIVES: To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and redirection of intensive care, including limitation of care and withdrawal of life-sustaining treatment); and to assess the parental role in the decision-making process given that the majority of the population is religious. METHODS: All neonates who died between 2000 and 2009 were identified. The causes and circumstances of death were Abstract: ed from the medical records. Trends in end-of-life decisions were compared between 2 time periods: 2000-2004 versus 2005-2009. RESULTS: Overall, 239 neonates died. The leading cause of death in both study periods was prematurity and its complications (76%). Among term infants, the leading cause of death was congenital anomalies (48%). Fifty-six percent of the infants received maximal intensive care; 28% had redirection of intensive care, of whom 10% had withdrawal of life-sustaining treatment; and 16% had primary nonintervention care. Over the years, maximal intensive care decreased from 65% to 46% (P < .02), whereas redirection of care increased from 19.2% to 37.5% (P < .0005). An active parental role in the end-of-life decision process increased from 38% to 84%. CONCLUSIONS: Even among religious families of extremely sick neonates, redirection of care is a feasible treatment option, suggesting that apart from survival, quality-of-life considerations emerge as an important factor in the decision-making process for the infant, parents, and caregivers.
2013-06
Eventov-Friedman S; Kanevsky H; Bar-Oz B
Pediatrics
2013
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).
<a href="http://doi.org/10.1542/peds.2012-0981" target="_blank" rel="noreferrer">10.1542/peds.2012-0981</a>
Opinions of Israeli neonatologists about life and death decisions in neonates
Israeli;medical decision making;neonatologist;physician attitude;terminal care;adult;age;article;demography;disabled person;disease severity;dying;ethnicity;family attitude;Female;health care cost;human;Israel;Male;medical ethics;medicolegal aspect;middle aged;neonatal intensive care unit;normal human;personal experience;prospective study;psychological well being;questionnaire;religion;sex difference;simulation
Background:: In 2005, the Israeli parliament passed the "law of dying patients" legalizing life and death decisions (do not resuscitate) in patients with life expectancy less than 6 months. Objective:: To determine whether ethnic and religious backgrounds (both religion and religiosity) influence neonatologists' attitudes in simulated clinical situations and opinions about the new law. Design/Methods:: Prospective design, using standard questionnaire sent to all 155 board-certified practising Israeli Neonatologists. The questionnaire sought demographic and descriptive data, personal opinions regarding four simulated cases, and opinions about five statements regarding variables that may influence decision-making. Statistical analyses were by stepwise backward regression analysis, linear regression, and Kruskal-Wallis tests, wherever indicated. Results:: Sixty-nine percent of the neonatologists replied, representing 27 NICUs out of the 29 NICUs in Israel. Most neonatologists would respect the wish of the family as long as it would be within the limits of the law or their personal beliefs. In stepwise regression analysis, religion, religiosity, age, gender, experience, or country of training did not influence significantly the neonatologists' opinions or their decisions in simulated practice. Most neonatologists felt that Ethical Committees had no role in NICUs and were seldom consulted. Most felt that likelihood of severe handicap was critical in decision-making. Issues related to treatment cost of a handicapped or dying infant, as well as impact of a handicapped infant on family's well-being, were not deemed critical. Conclusion:: Israeli neonatologists appear to be a relatively homogeneous group in end-of-life decisions, regardless of their ethnic, religious, or religiosity background.
Kasirer MY;Mimouni FB;Bin-nun A;Schimmel MS
Journal of Perinatology
2018
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).
<a href="http://doi.org/10.1038/s41372-018-0102-2" target="_blank" rel="noreferrer noopener">10.1038/s41372-018-0102-2</a>
Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care
artificial feeding; concept formation; hydration; Terminal Care; Article; Child care; child death; clinical practice; Controlled Study; decision making; Female; Human; Male; parental attitude; personal experience; priority journal; Qualitative Research; quality of life; Religion; satisfaction
BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. METHODS: This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. RESULTS: All parents were satisfi ed with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. CONCLUSIONS: FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option. Copyright _ 2013 by the American Academy of Pediatrics.
2013
Rapoport A; Shaheed J; Newman C; Rugg M; Steele R
Pediatrics
2013
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).
<a href="http://doi.org/10.1542/peds.2012-1916" target="_blank" rel="noreferrer">10.1542/peds.2012-1916</a>
Parents with a child throughout the end-of-course: A qualitative study
Taiwan; death; personal experience; qualitative research; religion; conference abstract; human; child; interview; palliative therapy
Background/Objectives: The purpose of the current study was to describe the lived experience of parents with a child with incurable cancer at the end of life (EOL). Design/Methods: A qualitative study was conducted following a phenomenological approach. Ten parents of children with incurable cancer were recruited from a medical center in southern Taiwan from May 2014 to June 2015. Data were collected through in-depth interviews and analyzed using Giorgi's four-step procedure. Results: Two major themes emerged: keep fighting and acceptance of death. Keep fighting was divided into three sub-themes: trying as hope, being alive as hope, and waiting for a miracle. Acceptance of death included four sub-themes: an end to suffering, living in the moment, discussion of death, and letting go. Love was the core value used for making decisions regardless of whether aggressive treatment or palliative care was chosen. Conclusions: Parents had difficulty adapting to a palliative care perspective due to a misconception that this meant giving up on their child. It is critical, however that parents move towards an acceptance of impending death. Religion and belief systems play a varied and important role in the lived experience of parents of a child with incurable cancer.
Wu LM
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Pediatric Palliative Care
Child; Humans; Grief; Religion; Death and Euthanasia; Terminally Ill/psychology; hospice care; Pediatrics/methods; Palliative Care/ethics/methods/psychology
Each year in the United States, approximately 50,000 children die and 500,000 children cope with life-threatening conditions. Worldwide these numbers are in the millions.1,2 Such children and their families require comprehensive, compassionate, and developmentally appropriate palliative care. Palliative care is a philosophy of care that evolved from the hospice philosophy to meet the gaps in care for seriously ill and dying patients. The aims of pediatric palliative care should best intersect with the aims of curing and healing, and this approach should be instituted when diagnosis, intervention, and treatment are not limited to a disease process, but rather become . . .
2004-04
Himelstein BP; Hilden JM; Boldt AM; Weissman DE
New England Journal Of Medicine
2004
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Journal Article
<a href="http://doi.org/10.1056/NEJMra030334" target="_blank" rel="noreferrer">10.1056/NEJMra030334</a>
Pediatric Palliative Care in the Multi-Cultural Context: Findings from a workshop conference
culture; palliative care; Pediatric; family; religion; health disparity; race/ethnicity
CONTEXT: In our increasingly multicultural society, providing sensitive and respectful pediatric palliative care is vital. OBJECTIVES: We held a one-day workshop conference with stakeholders and pediatric clinicians to identify suggestions for navigating conflict when cultural differences are present and for informing standard care-delivery. METHODS: Participants explored cases in one of four workshops focused on differences based on either race/ethnicity, economic disparity, religion/spirituality, or family-values. Each workshop was facilitated by two authors; separate transcriptionists recorded workshop discussions in real-time. We used content analyses to qualitatively evaluate the texts and generate recommendations. RESULTS: Participants included 142 individuals representing over 6 unique disciplines, 25 of the United States, and 3 nations. Whereas the conference focused on pediatric palliative care, findings were broadly generalizable to most medical settings. Participants identified key reasons cultural differences may create tension and then provided frameworks for communication, training, and clinical care. Specifically, recommendations included phrases to navigate emotional conflict, broken trust, unfamiliar family values, and conflict. Suggested approaches to training and clinical care included the development of core competencies in communication, history taking, needs assessment, and emotional intelligence. Important opportunities for scholarship included qualitative studies exploring diverse patient- and family-experiences, quantitative studies examining health disparities, and randomized clinical trials testing interventions designed to improve community partnerships, communication, or child health outcomes. CONCLUSION: Taken together, findings provide a foundation for collaboration between patients, families, and clinicians of all cultures.
Rosenberg A R; Bona K; Coker T; Feudtner C; Houston K; Ibrahim A; Macauley R; Wolfe J; Hays R
Journal of Pain and Symptom Management
2019
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2019.01.005" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2019.01.005</a>
Pediatricians' attitudes affecting decision-making in defective newborns
Female; Humans; infant; Male; Parental Consent; Adult; Attitude of Health Personnel; Withholding Treatment; Questionnaires; Middle Aged; Age Factors; Sex Factors; Religion; Ethics; Medical; Empirical Approach; decision making; Newborn; ICU Decision Making; Pediatrics/standards; Abnormalities/therapy
A questionnaire designed to identify the factors that influence the resolution of ethical dilemmas was returned by 230 (57% of the total) Massachusetts pediatricians. The decision to recommend surgery for an infant with Down's syndrome with duodenal atresia when the parents had refused surgery was influenced by religious affiliation (P less than .01), religious activity (P less than .04), and sex (P=.05). Of those favoring surgery, 40.2% would pursue a court order. The decision to recommend surgery for an infant with severe meningomyelocele when the parents' position was not stated was influenced by age (P less than .01), religious activity (P less than .02), and specialization (P less than .008). When the parents' wishes were expressed, the majority of the pediatricians modified their decision in accord with these wishes. In response to general ethical questions, 79.6% of all pediatricians thought that parents should have the right to withold consent for surgery. Equal numbers thought that psychosocial reasons justified witholding lifesaving procedures. Among a variety of factors, they thought that willingness of the parents to care for the child would influence the decision to take heroic measures. There were 90.4% who thought that ethics should be part of medical education; 55.7% indicated this need throughout their careers.
1977
Todres ID; Krane D; Howell MC; Shannon DC
Pediatrics
1977
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).
Journal Article
<a href="http://doi.org/10.1097/00006254-197804000-00013" target="_blank" rel="noreferrer">10.1097/00006254-197804000-00013</a>
Religious and cultural challenges in paediatrics palliative care: A review of literature
cultural anthropology; palliative therapy; pediatrics; religion; autopsy; caregiver; coping behavior; data base; decision making; human; interpersonal communication; life; organ donor; Palliative Care; review; software; systematic review; terminal care; terminally ill patient
Introduction: Paediatric palliative care aims to improve the quality of life of both the patients and their families when facing life-threatening illnesses. However, regions with strong religious and cultural practices made caring for ill children even more challenging due to the various, and at times, contrasting expectations from the families and the healthcare providers. Objective(s): This article aimed to discover the challenges of paediatric palliative care delivery in the context of culture and religion. Method(s): A systematic review was conducted through an online search of three databases for free open access articles and book chapters published between 2000 and 2018: Medline, Scopus and Google Scholar. Search key terms included: culture, custom, spiritual, ethnic, or religion [AND] end-of-life, palliative care, cancer, hospice, [AND] children or paediatrics. Result(s): Thirty-two (32) articles met the eligibility criteria. Out of these, five distinct themes emerged on the basis of implications for paediatrics palliative care. These include the (i) role of religion and culture in decision-making, (ii) the involvement of clerics towards the end-of-life, (iii) specific communication with the children and their caregivers about imminent death, (iv) the acceptance of autopsy and organ donation, and (v) spiritual coping strategies. Discussion(s): This review paper provided an insight into the impact of religion and topographical culture to the paediatrics end-of-life care. Cultural and religious traditions are dynamic and cannot be generalized to all families, hence a guided framework is recommended for clinicians working in diverse ethnic population in dealing with culturally sensitive, end-of-life care.Copyright © 2019 Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics
Khalid K; Ku Md Saad S; Abd Ghani NA; Mohamed Abdul Kadher AN
Journal of Pediatric Hematology/Oncology
2019
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).
<a href="http://doi.org/10.1016/j.phoj.2019.11.001" target="_blank" rel="noreferrer noopener">10.1016/j.phoj.2019.11.001</a>
Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study
article; bereavement support; child; China; comfort; controlled study; death education; hematology; human; palliative therapy; pediatrics; qualitative research; religion; spiritual care; support group; terminally ill patient
Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss death with their terminally ill children in mainland China. Design: Qualitative study. Setting/participants: This study was conducted in the hematology oncology center at Beijing Children’s Hospital. Participants in this study included 16 bereaved parents. Results: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents’ spiritual needs. Parents’ spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism. Conclusion: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient’s personal belief in death should be assessed before discussing death with them.
Cai S; Guo Q; Luo Y; Zhou Y; Abbas A; Zhou X; Peng X
Palliative Medicine
2020
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).
<a href="http://doi.org/10.1177/0269216319896747" target="_blank" rel="noreferrer noopener">10.1177/0269216319896747</a>
Spirituality among parents of children with cancer at AUBMC
spiritual care; semi structured interview; caregiver; cancer center; childhood cancer; health care personnel; powerlessness; genetic transcription; conference abstract; human; child; female; male; clinical article; palliative therapy; religion; fear; Lebanon; social needs
Doumit MA; Majdalani M; Saab R; Rahi A
Cancer Nursing
2016
<a href="http://doi.org/10.1097/NCC.0000000000000441" target="_blank" rel="noreferrer noopener">10.1097/NCC.0000000000000441</a>
Spirituality in patients with advanced illness: The role of symptom control, resilience and social network
psychological resilience; psychology; Religion; Social Support; adolescent; Adult; Aged; clinical trial; Cross-Sectional Studies; cross sectional study; emotion; Female; Human; Male; Middle Aged; multicenter study; Palliative therapy; social support; Terminal Care; terminally ill patient; very elderly; Young Adult
In this study, we analyzed the relationships among clinical, emotional, social, and spiritual dimensions of patients with advanced illness. It was a cross-sectional study, with a sample of 108 patients in an advanced illness situation attended by palliative care teams. Statistically significant correlations were found between some dimensions of spirituality and poor symptomatic control, resiliency, and social support. In the structural model, three variables predicted spirituality: having physical symptoms as the main source of discomfort, resiliency, and social support. This work highlights the relevance of the relationships among spirituality and other aspects of the patient at the end of life.
Fombuena M; Galiana L; Barreto P; Oliver A; Pascual A; Soto-Rubio A
Journal Of Health Psychology
2016
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).
<a href="http://doi.org/10.1177/1359105315586213" target="_blank" rel="noreferrer">10.1177/1359105315586213</a>
The 2002 Schering Lecture. Children's cancer symptom experiences: keeping the spirit alive in children and their families
Child; Humans; Palliative Care; Nurse's Role; Motivation; Non-U.S. Gov't; Research Support; PedPal Lit; social support; Emotions; Attitude; Child welfare; Family Health; Religion; Neoplasms/complications/nursing/psychology
Despite the finding that each child and family experienced cancer in their own unique way, they all shared the need to maintain a sense of spirit. Just as the suffering united the families, so too did their sense of spirit. Talk of the spirit is not foreign in the pediatric oncology literature. Statements such as "the children's responses suggest a resolute spirit that accepts cancer and goes on with life" (Hockenberry-Eaton & Minick, 1994, p.1030) are dispersed throughout the literature and reinforce the importance of the spirit in children and families experiencing childhood cancer. Yet despite this, the spirit in children with cancer has received minimal attention from researchers (Woodgate, 2001). The focus has been solely directed at studying the sense of self in children. In fact, some would even argue that the spirit can be equated with one's sense of self. There is also the feeling that the spirit is something that does not exist. How could it be "real" when it has never been seen or even measured in research? However, just because something cannot be seen or measured, does not mean that it does not exist. As was revealed by the families participating in my study, there was a spirit within them that got them through the cancer experience, especially during times of increased symptom distress. Research that seeks to describe the "spirit within" of children and families who are going through many of life's challenges is warranted. This includes understanding the conceptualization of the spirit from the perspectives of children experiencing illness. Although understanding spirituality and spiritual distress is beginning to be studied in children experiencing illness (Pehler, 1997), children's perspectives are usually not accessed. By developing a deeper understanding of the "spirit within," oncology nurses and other professionals caring for children with cancer may be able to provide more sensitive and comprehensive care. They will have a better understanding to nursing the spirit. So to conclude, let us as oncology nurses continue to help families maintain their sense of spirit. And yes, let us maintain a sense of spirit within ourselves. We could learn from the families we care for with respect to how to nurture our spirits and the spirits of those close to us. Taking care, holding on to the belief, taking one day at a time, and so on, are all strategies that we could learn to incorporate more frequently into our daily lives. May a part of the spirits of those we care for be with us and live on in us forever, because their lingering spirits are sources of hope and strength, as this mother reinforced.
2003
Woodgate RL
Canadian Oncology Nursing Journal
2003
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Journal Article
The Role of Child Life Specialists in Providing Culturally Responsive Palliative Care to the Mexican Origin Community
human; palliative therapy; pediatric patient; coping behavior; terminal care; bereavement; grief; medical specialist; health care system; bereavement support; breathing exercise; child life specialist; communication skill; cultural anthropology; family centered care; guided imagery; health care delivery; health personnel attitude; letter; medical procedures; Mexican; relaxation training; religion; scope of practice
Petkus J M
Journal of Palliative Medicine
2019
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).
<a href="http://doi.org/10.1089/jpm.2019.0203" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0203</a>
The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review
Child; child; female; human; male; palliative therapy; Medline; pediatrics; systematic review; review; attention; Cinahl; Only Child; child parent relation; Embase; PsycINFO; religion; data source; empiricism
Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential questions, which are easily overlooked by healthcare professionals. Aim: We explored how the spiritual dimension becomes manifest in parents of children in pediatric palliative care. Design: A mixed-methods systematic review was conducted, registered in Prospero (2021 CRD42021285318). Data sources: PubMed, CINAHL, Embase, PsycInfo, and Cochrane were searched for articles published between January 1, 2015 and January 1, 2023. We included original empirical studies that reported on spirituality of parents of seriously ill children, from parents' perspectives. Results: Sixty-three studies were included: 22 North-American, 19 Asian, 13 European, 9 other. Studies varied in defining spirituality. We identified five different aspects of spirituality: religion, hope, parental identity, personal development, and feeling connected with others. All aspects could function as source of spirituality or cause of spiritual concern. Sources of spirituality helped parents to give meaning to their experiences and made them feel supported. However, parents also reported struggling with spiritual concerns. Several parents highlighted their need for professional support. Conclusions: Although studies vary in defining spirituality, reports on spirituality focus on how parents connect to their faith, others, and themselves as parents. Healthcare professionals can support parents by paying attention to the spiritual process parents are going through. More research is needed into how healthcare professionals can support parents of seriously ill children in this process.
Engel M; Brouwer MA; Jansen N; Leget C; Teunissen SCCM; Kars MC
Palliative Medicine
2023
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).
<a href="http://doi.org/10.1177/02692163231186173" target="_blank" rel="noreferrer noopener">10.1177/02692163231186173</a>
Values clarification: Eliciting the values that inform and influence parents' treatment decisions for periviable birth
Attitude to Health; Decision Making; Fetal Viability; Financial Stress; Parents; periviable delivery; Pilot Projects; Pregnancy; Premature Birth; Qualitative Research; Quality of Life; Religion; Resuscitation Orders; Second Trimester Pregnancy; shared decision making; Social Support; values clarification
BACKGROUND: Values clarification can assist families facing the threat of periviable delivery in navigating the complexity of competing values related to death, disability, and quality of life (QOL). OBJECTIVE: We piloted values clarification exercises to inform resuscitation decision making and qualitatively assess perceptions of QOL. METHODS: We conducted a mixed-method study of women with threatened periviable delivery (22 0/7-24 6/7 weeks) and their important others (IOs). Participants engaged in three values clarification activities as part of a semi-structured interview-(a) Card sorting nine conditions as an acceptable/unacceptable QOL for a child; (b) Rating/ranking seven common concerns in periviable decision making (scale 0-10, not at all to extremely important); and (c) "Agreed/disagreed" with six statements regarding end-of-life treatment, disability, and QOL. Participants were also asked to define "QOL" and describe their perceptions of a good and poor QOL for their child. Analysis was conducted using SAS version 9.4 and NVivo 12. RESULTS: All mild disabilities were an acceptable QOL, while two-thirds of participants considered long-term mechanical ventilation unacceptable. Although pregnant women rated "Impact on Your Physical/Mental Health" (average 5.6) and IOs rated "Financial Concerns" the highest (average 6.6), both groups ranked "Financial Concerns" as the most important concern (median 5.0 and 6.0, respectively). Most participants agreed that "Any amount of life is better than no life at all" (pregnant women 62.1%; IOs 75.0%) and disagreed that resuscitation would cause "Too much suffering" for their child (pregnant women 71.4%; IOs 80.0%). Half were familiar with the phrase "QOL". Although the majority described a good QOL in terms of emotional well-being (eg "loved", "happy", "supported"), a poor QOL was described in terms of functionality (eg "dependent" and "confined"). Additionally, financial stability emerged as a distinctive theme when IOs discussed poor QOL. CONCLUSION: The study offers important insights on parental perspectives in periviable decision making and potential values clarification tools for decision support.
Tucker EB; Hoffman SM; Laitano T; Bhamidipalli SS; Jeffries E; Fadel W; Kavanaugh K
Paediatric and Perinatal Epidemiology
2020
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).
<a href="http://doi.org/10.1111/ppe.12590" target="_blank" rel="noreferrer noopener">10.1111/ppe.12590</a>