Influence of Genetic Information on Neonatologists' Decisions: A Psychological Experiment
Attitude of health personnel; Decision making; Infants; Neonatologists; Physicians
BACKGROUND AND OBJECTIVES: Genetic testing is expanding among ill neonates, yet the influence of genetic results on medical decision-making is not clear. With this study, we sought to determine how different types of genetic information with uncertain implications for prognosis influence clinicians' decisions to recommend intensive versus palliative care. METHODS: We conducted a national study of neonatologists using a split sample experimental design. The questionnaire contained 4 clinical vignettes. Participants were randomly assigned to see one of 2 versions that varied only regarding whether they included the following genetic findings: (1) a variant of uncertain significance; (2) a genetic diagnosis that affects neurodevelopment but not acute survival; (3) a genetic versus nongenetic etiology of equally severe pathology; (4) a pending genetic testing result. Physicians answered questions about recommendations they would make for the patient described in each vignette. RESULTS: Vignette versions that included a variant of uncertain significance, a diagnosis foreshadowing neurodevelopmental impairment, or a genetic etiology of disease were all associated with an increased likelihood of recommending palliative rather than intensive care. A pending genetic test result did not have a significant effect on care recommendations. CONCLUSIONS: Findings from this study of hypothetical cases suggest neonatologists apply uncertain genetic findings or those that herald neurodevelopmental disability in problematic ways. As genetic testing expands, understanding how it is used in decision-making and educating clinicians regarding appropriate use are paramount.
Callahan KP; Flibotte J; Skraban C; Wild KT; Joffe S; Munson D; Feudtner C
Pediatrics
2022
<a href="http://doi.org/10.1542/peds.2021-052130" target="_blank" rel="noreferrer noopener">10.1542/peds.2021-052130</a>
End-of-Life Healthcare Service Needs Among Children With Neurological Conditions: A Latent Class Analysis
concurrent hospice care; healthcare services; infants; latent class analysis; neurological conditions; nursing; pediatric hospice care; pediatrics
BACKGROUND: At the end of life, children with neurological conditions have complex healthcare needs that can be met by providing care of their life-limiting conditions concurrently with hospice care (ie, concurrent care). Given the limited literature on concurrent care for children with neurologic conditions, this investigation aimed to identify patterns of nonhospice, healthcare service needs and to assess characteristics of children within each group. METHODS: A nationally representative sample children with neurological conditions enrolled in concurrent hospice care was used. Latent class analysis and descriptive statistics were calculated to identify patterns of healthcare needs and characteristics of children within the groups. A subgroup analysis of infants was conducted. RESULTS: Among the 1601 children, the most common types of services were inpatient hospitals, durable medical equipment, and home health. Two classes of service needs were identified: moderate intensity (58%) and high intensity (42%). Children in the moderate-intensity group were predominantly between 1 and 5 years old, male, White, and non-Hispanic. The most common neurological condition was central nervous system degeneration. They also had significant comorbidities, mental/behavioral health conditions, and technology dependence. They commonly resided in urban areas in the South. Children in the high-intensity group had a wide range of neurological conditions and high acuity. The subgroup analysis of infants indicated a different neurological profile. CONCLUSIONS: Two distinct classes of nonhospice, healthcare service needs emerged among children with neurological conditions at the end of life. The groups had unique demographic profiles.
Lindley LC; Svynarenko R; Mooney-Doyle K; Mendola A; Naumann WC; Fortney CA
Journal of Neuroscience Nursing
2021
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/10.1097/jnn.0000000000000615" target="_blank" rel="noreferrer noopener">10.1097/jnn.0000000000000615</a>
Implementing music therapy in a Norwegian neonatal intensive care unit
clinical; neonatal; intensive care; child health; critical care; medicines; infants; research; families; patients; child development; parents; music therapy; professional; complementary therapies; maternal bonding
BACKGROUND: Neonatal intensive care unit (NICU) music therapy is an emerging discipline. There is a growing evidence base supporting its use, with an emphasis on the immediate and short-term positive effects on infants' physiological responses and parents' experiences. AIM: To explore the implementation of music therapy aligned with standards of neonatal care and as an integral part of the care routinely provided in a Norwegian NICU. METHOD: Parents of infants hospitalised in the NICU were offered music therapy sessions based on the First Sounds: Rhythm, Breath and Lullaby model. Before discharge from the NICU, parents were asked to complete an electronic survey about their experiences of music therapy. Nurses' feedback and observations were also elicited and collected. FINDINGS: A total of 16 parents completed the survey. Overall, their experiences of music therapy were positive, and they noted several benefits for themselves and their infant. In addition, nurses observed that parents' interactions with their infant increased after participation in music therapy. However, nurses reported it was challenging to invite parents to participate in music therapy at a time of uncertainty, anxiety and grief. Nurses also found it challenging to disseminate information about music therapy to parents from other cultures. Furthermore, it was identified that most parents learned about the music therapy sessions from the music therapist, rather than from NICU medical or nursing staff, which indicates that music therapy was not fully integrated among the unit's multidisciplinary team. CONCLUSION: Music therapy can reinforce family-centred care and promote parent-infant bonding, but additional efforts are required to integrate it into the care routinely provided by the NICU multidisciplinary team.
Janner C; Söderström Gaden T; Nakstad B; Solevåg AL
Nursing Children and Young People
2021
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/10.7748/ncyp.2021.e1331" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2021.e1331</a>
Pediatric Complex Chronic Conditions: Evaluating Two Versions of the Classification System
complex chronic conditions; hcup kid; infants; positive predictive value; sensitivity; specificity
The original pediatric complex chronic conditions (CCC) classification system developed in 2000/2001 is the gold standard in classifying children with life-limiting illnesses. It was significantly modified in 2014; yet the two systems have not been evaluated. The objective of this study was to evaluate the agreement and validity of the original versus the modified CCC classification systems. Healthcare Cost and Utilization Project (HCUP) Kids' Inpatient Database (KID) data from 2012 was used with a sample of infant decedents less than 1 years. The agreement (i.e., Cohen's Kappa Statistic) and validity (i.e., sensitivity, specificity, and positive predictive value [PPV]) statistics were calculated. Among the 10,175 infants that were classified, the modified system performed well in identifying infants who had a CCC, and it captured infants that the original classification did not. The modified system represents an improvement over the original, but additional testing is warranted.
Lindley LC; Cozad MJ; Fortney CA
Western journal of nursing research
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/10.1177/0193945919867266" target="_blank" rel="noreferrer noopener">10.1177/0193945919867266</a>
The "lactation after infant death (AID) framework": a guide for online health information provision about lactation after stillbirth and infant death
animals; Chordata; eukaryotes; health; Hominidae; Homo; infant mortality; infants; lactation; mammals; man; primates; stillbirths; vertebrates
This article collated and critically reviewed international evidence-based lactation and bereavement information to devise a comprehensive framework on the diverse options for lactation management after stillbirth and infant death by outlining the development of the 25-point evidence-based Lactation AID Framework intended for use by health organizations that provide written online lactation health information to bereaved parents.
Carroll K; Noble-Carr D; Sweeney L; Waldby C
Journal of Human Lactation
2020
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<a href="http://doi.org/10.1177/0890334420926946" target="_blank" rel="noreferrer noopener">10.1177/0890334420926946</a>
Use of Palliative Care Consultation Services for Infants With Life-Threatening Conditions in a Metropolitan Hospital
consultation; infants; neonatal palliative care; palliative care
BACKGROUND: Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants. PURPOSE: The purpose of this study was to describe the use of an established pediatric palliative care team for seriously ill infants in a metropolitan hospital. METHODS: This was a retrospective medical record review. FINDINGS: The population included 64 infants who were admitted to a level IV neonatal intensive care unit (NICU) and then died during hospitalization between January 2015 and December 2016. Most infants died in an ICU (n = 63, 95%), and only 20 infants (31%) received palliative care consultation. Most common reasons for consultation were care coordination, defining goals of care and end-of-life planning, and symptom management. IMPLICATIONS FOR PRACTICE: Palliative care consultation at this institution did not change the course of end-of-life care. Interventions provided by the ICU team to infants surrounding end of life were similar to those in infants receiving palliative care services from the specialists. Our findings may be useful for developing guidelines regarding how to best utilize palliative care services for infants with life-threatening conditions who are admitted to an ICU. IMPLICATIONS FOR RESEARCH: These finding support continued research in neonatal palliative care, more specifically the impact of palliative care guidelines and algorithms.
McLaughlin S N; Song M K; Hertzberg V; Piazza A J
Advances in Neonatal Care
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/10.1097/anc.0000000000000698" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000698</a>
Sleep-disordered breathing in children with achondroplasia
Pediatrics; death; unexpected; apnea; cervicomedullary compression; decompression; infants; obstruction; respiratory complications; breathing difficulties; achondroplasia; trajectory; characteristics; obstructive sleep apnea; central apnea
Objective: Our objective was to characterize sleep-disordered breathing in 88 children with achondroplasia aged 1 month to 12.6 years. Results: At the time of their initial polysomnography, five children had previously undergone tracheostomy, and seven children required supplemental oxygen. Initial polysomnography demonstrated a median obstructive apnea index of 0 (range, 0 to 19.2 apneas/hr). The median number of central apneas with desaturation per study was 0.5 (0 to 49), the median oxygen saturation nadir was 91% (50% to 99%), and the median peak end-tidal pCO(2) was 47 mm Hg (36 to 87 mm Hg). Forty-two children (47.7%) had abnormal initial study results, usually caused by hypoxemia. Two children with severe obstructive sleep apnea eventually required continuous positive airway pressure therapy, and three additional children required tracheostomies. Conclusions: (1) Children with achondroplasia often have sleep-related respiratory disturbances, primarily hypoxemia. (2) The majority do not have significant obstructive or central apnea; however, a substantial minority are severely affected. (3) Tonsillectomy and adenoidectomy decreases the degree of upper airway obstruction in most but not all children with achondroplasia and obstructive sleep apnea. (4) Restrictive lung disease can present at a young age in children with achondroplasia.
Mogayzel P J; Carroll J L; Loughlin G M; Hurko O; Francomano C A; Marcus C L
Journal of Pediatrics
1998
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/s0022-3476(98)70358-0" target="_blank" rel="noreferrer noopener">10.1016/s0022-3476(98)70358-0</a>
Functional Evaluation of Eating Difficulties Scale to predict oral motor skills in infants with neurodevelopmental disorders: a longitudinal study
eating difficulties; functional evaluation; infants; longitudinal study; neurodevelopmental disabilities; neurodevelopmental disorders; neurodevelopmental impairment; oral motor skills
Aim To assess the predictive validity of the Functional Evaluation of Eating Difficulties Scale (FEEDS) on long-term eating developmental outcomes in infants with neurodevelopmental disorders. Method In total, 144 infants (69 females, 75 males) aged 0 to 12 months (mean [SD] 5.34mo [3.42]) with neurodevelopmental disorders and requiring enteral nutrition support, hospitalized between January 2004 and December 2017, were included. The FEEDS was administered at the onset of hospitalization. Follow-up evaluations of feeding modalities occurred at discharge and at 6 months, 12 months, and 24 months after discharge. FEEDS score was tested as a predictor of infants’ feeding modality (percutaneous endoscopic gastrostomy, nasogastric tube, mixed, oral feeding) and time to autonomous oral feeding. Percentages of false-positive and negative cases were checked. Results Lower FEEDS scores significantly predicted infants’ feeding modality (0.40≤R2≤0.61). A 1-point increase in FEEDS score was associated with increased risk (6%–14%; p<0.05) of being non-autonomous feeders at the different follow-up points in infants who had a FEEDS score above the clinical cut-off. Interpretation The FEEDS appears to be a clinically valid assessment to predict the presence of eating difficulties in infants with neurodevelopmental disabilities. What this paper adds Functional Evaluation of Eating Difficulties Scale (FEEDS) significantly predicted eating difficulties in infants with neurodevelopmental disabilities. Lower FEEDS score is significantly associated with autonomous feeding at the 24-month follow-up. FEEDS cut-off identified infants at low-risk and high-risk for eating disorder.
Cavallini A; Provenzi L; Minico GSD; Sacchi D; Gavazzi L; Amorelli V; Borgatti R
Developmental Medicine & Child Neurology
2019
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<a href="http://doi.org/10.1111/dmcn.14154" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14154</a>
Pediatric Complex Chronic Conditions: Does the Classification System Work for Infants?
infant; complex chronic conditions; chronic disease; hospital patient; end-of-life; Caucasian; health care cost; serious illness; human; article; child; controlled study; attention; comorbidity; palliative therapy; prevalence; infants; African American; hcup kid; insurance; neonates; regression analysis
BACKGROUND:: One widely accepted approach to identify children with life-limiting health problems is the complex chronic conditions (CCCs) classification system. Although considered the "gold standard" for classifying children with serious illness, little is known about its performance, especially among infants. OBJECTIVE/HYPOTHESIS:: This research examined the prevalence of CCCs and the infant characteristics related to a CCC classification. METHOD(S):: Multivariate regression analysis was conducted with 2012 Kids' Inpatient Database, Healthcare Cost and Utilization Project data files, using a national sample of infant decedents less than 1 year. RESULT(S):: Our findings showed that 40% of the infants were classified with a CCC. African Americans were negatively associated with a CCC classification (adjusted odds ratio [aOR] = 0.63; 95% confidence interval [CI] = 0.543-0.731). When infants had other insurance coverage, they were less likely (aOR = 0.63; 95% CI = 0.537-0.748) to have a CCC classification. Infants who resided in nonurban areas (aOR = 1.21; 95% CI =1.034-1.415) and had comorbidities (aOR = 38.19; 95% CI = 33.12-44.04) had greater odds of having a CCC classification. CONCLUSION(S):: The findings suggested that the infants are not commonly classified with a CCC and highlighted the significant variation in race with African American infants exhibiting different CCC classifications than Caucasian infants. Given the importance of reducing disparities in palliative care, critical attention to using CCC classifications in research is warranted.
Lindley L C; Fortney C A
The American Journal of Hospice & Palliative Care
2019
<a href="http://doi.org/10.1177/1049909119838985" target="_blank" rel="noreferrer noopener">10.1177/1049909119838985</a>
Hospice Use for Infants With Life-Threatening Health Conditions, 2007 to 2010
Pediatric Nurse Practitioners; Andersen model; California; Cardiovascular Diseases; complex chronic conditions; Congenital Abnormalities; end of life; hospice; Hospice Care/statistics & numerical data/ utilization; Humans; infant; Infants; Insurance Claim Review/statistics & numerical data; Length of Stay/economics/ statistics & numerical data; Medicaid; Medicaid/ statistics & numerical data; Nurse-Patient Relations; Nurse's Role; Palliative Care/statistics & numerical data/ utilization; Parents/ psychology; Professional-Family Relations; Respiratory Insufficiency; United States
BACKGROUND: Infant deaths account for a majority of all pediatric deaths. However, little is known about the factors that influence parents to use hospice care for their infant with a life-threatening health condition. METHODS: Data were used from 2007 to 2010 California Medicaid claims files (N = 207). Analyses included logistic and negative binomial multivariate regression models. RESULTS: More than 15% of infants enrolled in hospice care for an average of 5 days. Infant girls and infants with congenital anomalies were more likely to enroll in hospice care and to have longer stays. However, cardiovascular and respiratory conditions were negatively related to hospice enrollment and hospice length of stay. CONCLUSIONS: This study provides insights for nurses and other clinicians who care for infants and their families at end of life and suggests that nurses can assist families in identifying infant hospice providers who may help families understand their options for end-of-life care.
2017-01
Lindley LC; Newnam KM
Journal Of Pediatric Health Care
2017
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<a href="http://doi.org/10.1016/j.pedhc.2016.04.015" target="_blank" rel="noreferrer">10.1016/j.pedhc.2016.04.015</a>
How children die in hospital.
Child; Humans; Death; Palliative Care; symptoms; Euthanasia; Communication; Death; Resuscitation Orders; Longitudinal Studies; Critical Care; Children; Children; Preschool; infant; DNAR; Human; Pediatric intensive care unit; Passive; Hospital Mortality; Infant Mortality; Canuck Place 15 year chart review; dying; Infants; Pediatric intensive care unit
A retrospective analysis was performed to describe the course of terminal care provided to dying hospitalized children in terms of symptom assessment and management, and communication and decision-making, at the end of life. Seventy-seven of 236 infants and children who died after hospital admission in Edmonton, Canada between January 1996 and June 1998 met entry criteria. Only children who died after a minimum hospitalization of 24 hours in the case of chronic illness or after a minimum hospitalization of 7 days following an acute event were included. Unanticipated deaths were excluded. Eighty-three percent of children died in intensive care settings (64/77), and 78 % (60/77) were intubated prior to their death. Symptoms were recorded in narrative progress notes. Five of 77 (6%) charts contained specific pain assessment and treatment records. Opioid analgesia was provided in 84 % of all cases (65/77). Six (8 %) patients had do not resuscitate (DNNR) orders preceding final hospital admission and 56/71 (79%) remaining patients had documented discussion resulting in DNR decision during final hospital admission. Median time from DNR to death was < 1 day. Mode of death was withdrawal of therapy in 33/77 (43 %), no cardiopulmonary resuscitation (CPR) in 26/77 (34 %), andfailed CPR in 13/77 (17%). Five children were declared brain dead. In only one case was there evidence in the medical record of the possibility of death being discussed explicitly with the patient. Decision-making regarding end-of-life issues in this pediatric population was deferred very close to the time of death, and only after no remaining curative therapy was available. Acuity of care was very high prior to death. Children are rarely told that they are dying.
2000
McCallum DE; Byrne P; Bruera E
Journal Of Pain And Symptom Management
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/10.1016/s0885-3924(00)00212-8" target="_blank" rel="noreferrer">10.1016/s0885-3924(00)00212-8</a>
End-of-Life Care for Neonates and Infants: The Experience and Effects of a Palliative Care Consultation Service
Palliative Care; infant; Infants; Terminal Illness; end-of-life care; Death and Dying
Objective. Neonates and infants have the highest death rate in the pediatric population, yet there is a paucity of data about their end-of-life care and whether a palliative care service can have an impact on that care. The objective of this study was to describe end-of-life care for infants, including analysis of palliative care consultations conducted in this population. We hypothesized that the palliative care consultations performed had an impact on the infants' end-of-life care. Design. A retrospective chart review using the “End of Life Chart Review” from the Center to Improve Care for the Dying was conducted. The participants were the patients at Children's Hospital of Wisconsin who died at <1 year of age during the 4-year period between January 1, 1994, and December 31, 1997. The patients' place of death, medical interventions performed, and emotionally supportive services provided to families were analyzed. Results. Among the 196 deaths during the study period, 25 (13%) of these infants and families had palliative care consultations. The rate of consultations increased from 5% of the infant deaths in 1994 to 38% of the infant deaths in 1997. Infants of families that received consultations had fewer days in intensive care units, blood draws, central lines, feeding tubes, vasopressor and paralytic drug use, mechanical ventilation, cardiopulmonary resuscitation, and x-rays, and the families had more frequent referrals for chaplains and social services than families that did not have palliative care consultations. Conclusions. This study describes the end-of-life care that infants and their families received. Fewer medical procedures were performed, and more supportive services were provided to infants and families that had a palliative care consultation. This suggests that palliative care consultation may enhance end-of-life care for newborns.
2001-09
Pierucci R; Kirby RS; Leuthner SR
Pediatrics
2001
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/10.1542/peds.108.3.653" target="_blank" rel="noreferrer">10.1542/peds.108.3.653</a>
Experiences In Palliative Home Care Of Infants With Life-limiting Conditions.
Caregivers; Female; Germany; Home Care Services/statistics & Numerical Data; Hospitals Pediatric; Humans; Infant; Infant Mortality; Infant Newborn; Male; Palliative Care/statistics & Numerical Data; Patient Comfort/statistics & Numerical Data; Terminal Care/statistics & Numerical Data
Home Care; Infants; Life-limiting Conditions; Neonates; Palliative Care
Abstract
The aim of this study was to determine the distinct issues neonates/infants with life-limiting conditions and their families face during palliative home care and to enable physicians/caregivers to carefully address their needs. Data on home-based palliative care of all neonates and infants, who were being taken care of by our paediatric palliative care team between 2007 and 2014, was analysed. A total of 31 patients (pts) were analysed. The majority of patients (n = 17) were diagnosed with congenital malformations or chromosomal abnormalities. Twenty pts died, five of them in hospital. A high percentage of pts presented with swallowing incoordination (83.9%) and was fed either by nasogastric tube or percutaneous endoscopic gastrostomy. Of the pts, 71.0% were treated with analgesics, 45.2% were oxygen dependent, and 9.7% required mechanical ventilation. Highest mortality was seen in pts with perinatal complications (75%). In four (12.9%) pts, palliative home care could come to an end as their conditions substantially improved.
CONCLUSIONS:
Palliative treatment of neonates/very young infants with terminal conditions at home seems to be similar to that of older children and feasible in children even with unstable conditions. The spectrum of diagnoses, signs and symptoms varies from older children with swallowing incoordination and artificial nutrition being of particular importance.
Kuhlen M; Höll J; Sabir H; Borkhardt A; Jansen G
European Journal Of Pediatrics
2015
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DOI: 10.1007/s00431-015-2637-y
‘no Second Chance’ – Junior Neonatal Nurses Experiences Of Caring For An Infant At The End-of-life And Their Family
Anxieties; End-of-life; Infants; Junior Nurses; Neonatal Unit (nnu)
Death of an infant is acutely stressful for parents and professionals. Little is known about junior nurses' experiences providing end-of-life care in Neonatal units (NNU). This study aimed to better understand junior nurses' experiences providing end-of-life care in NNU. Neonatal nurses (n = 12) with less than 3 years experience participated in a focus group. Nominal Group Technique (NGT) was used to build consensus around the challenges faced, alongside suggested developments in improving future care provision. Primary analysis involved successive rounds of ranking and decision-making whilst secondary analysis involved thematic analysis. All issues, whether environmental, professional or social appeared driven by an awareness on the part of nurses, that there was no ‘second chance’ which created a huge pressure to ‘get if right’ for the infants and families. Regarding future care 2 areas of improvement identified were ‘Education and Training’ and Support. This paper unpacks these findings making recommendations for practice.
Nurse Sharon; Price Jayne
Journal Of Neonatal Nursing
2017
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10.1016/j.jnn.2016.04.008
Spiritual Needs Of Families With Bereavement And Loss Of An Infant In The Neonatal Intensive Care Unit: A Qualitative Study
End Of Life Care; Clinical Neurology; Palliative Care; Medicine General & Internal; Health Care Sciences & Services; Providers
Iran; Neonatal Intensive Care Unit; Spiritual Needs; End Of Life; Family; Infants
CONTEXT:
The hospital is a place full of distress and questions about the meaning of life. The death of a child can cause a spiritual struggle and crisis. Therefore, it is necessary for health care providers in the neonatal intensive care unit (NICU) to assess the spiritual needs of families that have lost a child.
OBJECTIVES:
The purpose of this study was to explore the spiritual needs of families in Iran at the end of their baby's life and through bereavement in the NICU.
METHODS:
This study was an exploratory qualitative study performed using purposeful sampling and semi-structured interviews with 24 participants. Inclusion criteria for families, nurses, and physicians included having experienced at least one newborn death in the last six months in the NICU. The research environment was the NICU in Isfahan, one of the largest cities in Iran.
RESULTS:
Data analysis revealed three main themes: spiritual belief in a supernatural power, the need for comfort of the soul, and human dignity for the newborn.
CONCLUSION:
The results of this study created a new vision in addressing spiritual needs of Iranian families who experience the death of a newborn.
N Sadeghi; Hasanpour M; Heidarzadeh M; Alamolhoda A; Waldman E
Journal Of Pain And Symptom Management
2016
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Physician-hastened Death In Young Children: Getting To Underlying Assumptions.
Ethics; Euthanasia; Infants; Physician-assisted Death; Suffering; Worldview
Significant changes are occurring in Canada's health care system regarding physician-hastened death (PHD). In the Netherlands, where the Groningen Protocol is in place, euthanasia in now legal for infants and children. The present article considers whether PHD should be applied to young children in Canada and how these paediatric cases differ from adult cases. The discussion analyzes and critiques the underlying assumptions necessary to believe that PHD is good. The role of worldviews in the deliberation of any moral question and the importance of recognizing personal bias are highlighted. The authors present common issues regarding PHD, including suffering, parental autonomy and future quality of life, and examine the basic assumptions on which these arguments are made. Finally, they conclude that the assumptions required are incorrect and that PHD should not be allowed in the case of children. Instead, policies should continue to strive for the protection and promotion of health in all children.
Liao L; Chan D
Journal Of Paediatrics And Child Health
2016
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PMCID: PMC4934156