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Journal articles on the topic 'Seriously ill child'

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Author: Grafiati

Published: 4 June 2021

Last updated: 10 February 2022

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1

ALLEN, LaRUE, and EDWARD ZIGLER. "Psychological Adjustment of Seriously Ill Children." Journal of the American Academy of Child Psychiatry 25, no. 5 (September 1986): 708–12. http://dx.doi.org/10.1016/s0002-7138(09)60299-5.

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2

Ward, Cynthia, Nel Glass, and Rosemary Ford. "Care in the home for seriously ill children with complex needs." Journal of Child Health Care 19, no. 4 (June 30, 2014): 524–31. http://dx.doi.org/10.1177/1367493514538327.

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This article reviews contemporary literature on home care of the seriously ill child with complex care needs and the sick child/parent dyad. The literature search revealed three major themes, namely the increasing acuity of child illness, the evolving role of the parent as care provider, and the health professional as care provider. While there is much known about the complexity of care of children and the role of family in that care, little is known about what families require in terms of support and sustenance during the long years of care provision.

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3

Hill, Douglas L., Pamela G. Nathanson, Karen W. Carroll, Theodore E. Schall, Victoria A. Miller, and Chris Feudtner. "Changes in Parental Hopes for Seriously Ill Children." Pediatrics 141, no. 4 (March 22, 2018): e20173549. http://dx.doi.org/10.1542/peds.2017-3549.

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4

Davidson, Lindy Grief. "Poems from the Deep." Departures in Critical Qualitative Research 10, no. 3 (2021): 57–64. http://dx.doi.org/10.1525/dcqr.2021.10.3.57.

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Conducting research in a familiar site of crisis brings about feelings of resonance between a researcher and participants. After 11 months of shadowing a pediatric palliative care team and 20 interviews with parents and grandparents of seriously ill children, the author, also the parent of a medically complex child, searched for creative ways to explore her findings. In this exploration of life as the parent of a seriously ill hospitalized child, the researcher reflects on her participants’ and her own collective experiences and frustrations in the form of poetry.

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5

REEVES, J. H., W. B. BUTT, and A. S. SATHE. "A review of venovenous haemofiltration in seriously ill infants." Journal of Paediatrics and Child Health 30, no. 1 (February 1994): 50–54. http://dx.doi.org/10.1111/j.1440-1754.1994.tb00566.x.

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6

Kelly, Katherine P., Kathleen A. Knafl, Susan Keller, and Pamela S. Hinds. "Thematic expansion: A new strategy for theory development." Western Journal of Nursing Research 43, no. 10 (February 3, 2021): 962–71. http://dx.doi.org/10.1177/0193945920984795.

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We developed and applied metasynthesis methods to expand previously reported thematic descriptions of parents’ internal definition of “being a good parent to my seriously ill child” as part of a larger study to examine parenting of children with serious illness. Our systematic approach included: literature search, purposeful selection of grounded theories regarding parenting a seriously ill child, study summaries, mapping evidence of good parent themes onto structural elements of grounded theory, cross-study comparisons, and theoretical memoing to summarize analytic insights. Twenty-five grounded theory studies from 32 reviewed reports reflected multiple conditions (n=5), countries (n=10) and family members (n=386 families). We report a worked example of the processes used to extend the original good parent themes and detail our processes through one good parent theme. The methods we describe are a promising approach to extend thematic analysis findings and advance thematic expansions toward development of more formal theoretical syntheses.

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7

Miraie, Emily D., and Mary B. Mahowald. "Withholding nutrition from seriously ill newborn infants: A parent's perspective." Journal of Pediatrics 113, no. 2 (August 1988): 262–65. http://dx.doi.org/10.1016/s0022-3476(88)80262-2.

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8

Reed, Michael D., Robert M. Kliegman, Joel S. Weiner, Marian Huang, Toyoko S. Yamashita, and Jeffrey L. Blumer. "The Clinical Pharmacology of Vancomycin in Seriously Ill Preterm Infants." Pediatric Research 22, no. 3 (September 1987): 360–63. http://dx.doi.org/10.1203/00006450-198709000-00024.

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9

Siew, Lawrence, Allen Hsiao, Paul McCarthy, Anup Agarwal, Eric Lee, and Lei Chen. "Reliability of Telemedicine in the Assessment of Seriously Ill Children." Pediatrics 137, no. 3 (February 5, 2016): e20150712. http://dx.doi.org/10.1542/peds.2015-0712.

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10

Koivula, Krista, Hannu Kokki, Maija Korhonen, Aarno Laitila, and Kirsi Honkalampi. "Experienced dyadic emotion regulation and coping of parents with a seriously ill child." Couple and Family Psychology: Research and Practice 8, no. 1 (March 2019): 45–61. http://dx.doi.org/10.1037/cfp0000115.

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11

Wool, Jesse, Sharon Y. Irving, Salimah H. Meghani, and Connie M. Ulrich. "Parental Decision-Making in the Pediatric Intensive Care Unit: An Integrative Review." Journal of Family Nursing 27, no. 2 (February 1, 2021): 154–67. http://dx.doi.org/10.1177/1074840720975869.

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Parents are commonly responsible for making health care decisions for their seriously ill children in the pediatric intensive care unit (PICU); however, the factors influencing their decisions may vary. This integrative review examined the empirical literature between 2013 and 2018 to understand factors pertaining to parents’ decision-making about serious illness care of their children in the PICU. Seventeen studies met the inclusion criteria with three key findings. First, parent–clinician communication in the PICU is critical; second, most parents want to be the final decision-maker for their critically ill child; and third, parents’ emotions, support systems, and the child’s clinical status impact decision-making. Parental perspectives are important to consider when discussing serious illness care decisions for critically ill children. Further inquiry is needed into how the parent–clinician encounter impacts the decision-making process and subsequent outcomes in this population.

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12

Hinds, Pamela S., and Katherine Patterson Kelly. "Helping Parents Make and Survive End of Life Decisions for Their Seriously Ill Child." Nursing Clinics of North America 45, no. 3 (September 2010): 465–74. http://dx.doi.org/10.1016/j.cnur.2010.03.006.

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13

Carlson, Karen P., and Matthew Cook. "Challenge by Choice: Adventure-Based Counseling for Seriously Ill Adolescents." Child and Adolescent Psychiatric Clinics of North America 16, no. 4 (October 2007): 909–19. http://dx.doi.org/10.1016/j.chc.2007.05.002.

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14

Byrne, Mary W., Elana Evan, Lorie S. Goshin, Matthew D. Erlich, Jackie H. J. Kim, John M. Saroyan, and Lonnie K. Zeltzer. "Parent self-efficacy for managing pain in seriously ill children and adolescents nearing end of life." Palliative and Supportive Care 9, no. 2 (May 4, 2011): 137–47. http://dx.doi.org/10.1017/s1478951511000010.

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AbstractObjective:Using data from a multi-site study of parent–child symptom reporting concordance, this secondary analysis explored the role of parent self-efficacy related to pain management for seriously ill school-age children and adolescents.Method:In the initial study, 50 children and adolescents who were expected to survive 3 years or less were recruited along with their parent/primary caregiver. Parent self-report data were used in this secondary analysis to describe parent self-efficacy for managing their child's pain, caregiver strain, mood states, and perception of the child's pain; to explore relationships among these variables; and to determine predictors of greater self-efficacy.Results:Parents expressed a wide range of self-efficacy levels (Chronic Pain Self-Efficacy Scale; possible range 10–100, mean 76.2, SD 14.7) and higher levels on average than reported previously by family caregivers of adult patients. Caregiver Strain Index scores were markedly high (possible range 0–13, mean 8.1, SD 3.8) and inversely correlated with self-efficacy (r = −0.44, p = 0.001). On the Profile of Mood States parents reported more negative moods (t = 4.0, p < 0.001) and less vigor (t = −5.0, p < 0.001) than adults in a normative sample, yet vigor rather than mood disturbance predicted self-efficacy. With the exception of child age, self-efficacy was not associated with demographics (child gender, ethnicity, household income, parent age, education, family size) or with the diagnostic groups (primarily cardiac and oncologic) comprising the sample. Younger child age, less caregiver strain, more parent vigor, and parent perception that child is without pain predicted more than half of the variance in parent self-efficacy (R2 = 0.51).Significance of results:Findings advance knowledge of parent self-efficacy in managing the pain of a child with life-threatening illness. Results can be used to design supportive interventions enhancing parents’ caregiving roles during their child's last stages of life.

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15

Madrigal, Vanessa N., and Katherine Patterson Kelly. "Supporting Family Decision-making for a Child Who Is Seriously Ill: Creating Synchrony and Connection." Pediatrics 142, Supplement 3 (November 2018): S170—S177. http://dx.doi.org/10.1542/peds.2018-0516h.

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16

Sisk, Bryan A., Chris Feudtner, Myra Bluebond-Langner, Barbara Sourkes, Pamela S. Hinds, and Joanne Wolfe. "Response to Suffering of the Seriously Ill Child: A History of Palliative Care for Children." Pediatrics 145, no. 1 (December 5, 2019): e20191741. http://dx.doi.org/10.1542/peds.2019-1741.

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17

Rasmussen, Steen Cnops. "Making sense of the meaningless." Short Film Studies 9, no. 1 (January 1, 2019): 65–68. http://dx.doi.org/10.1386/sfs.9.1.65_1.

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The present analysis shows Paul’s attempt to find meaning in the meaningless in relation to his mother’s illness and death. The analysis exposes mechanisms promoting guilt and shame, power and lack of power that occur when a child takes on the role as carer of a seriously ill relative.

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18

Wyckoff, Patricia M., and Marilyn T. Erickson. "Mediating Factors of Stress on Mothers of Seriously Ill, Hospitalized Children." Children's Health Care 16, no. 1 (June 1987): 4–12. http://dx.doi.org/10.1207/s15326888chc1601_1.

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19

Roberts, Carolyn Sara. "Home Care for Seriously Ill Children. A Manual for Parents (book)." Children's Health Care 17, no. 1 (June 1988): 59–60. http://dx.doi.org/10.1207/s15326888chc1701_11.

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20

Swigonski, Nancy, Eleanor D. Kinney, Deborah A. Freund, and Thomas J. Kniesner. "Unfinished Business: Inadequate Health Coverage for Privately Insured Seriously Ill Children." Children's Health Care 30, no. 3 (September 2001): 219–36. http://dx.doi.org/10.1207/s15326888chc3003_4.

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21

Risley-Curtiss, Christina, Layne K. Stromwall, Debra Truett Hunt, and Jennifer Teska. "Identifying and Reducing Barriers to Reunification for Seriously Mentally Ill Parents Involved in Child Welfare Cases." Families in Society: The Journal of Contemporary Social Services 85, no. 1 (January 2004): 107–18. http://dx.doi.org/10.1606/1044-3894.240.

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22

Neumann, Marie L., Meaghann S. Weaver, Blyth Lord, Lori Wiener, and Pamela S. Hinds. "Care Provider Behaviors That Shape Parent Identity as a “Good Parent” to Their Seriously Ill Child." Palliative Medicine Reports 2, no. 1 (April 1, 2021): 113–21. http://dx.doi.org/10.1089/pmr.2021.0005.

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23

Arutyunyan, Tsovinar, Folafoluwa Odetola, Ryan Swieringa, and Matthew Niedner. "Religion and Spiritual Care in Pediatric Intensive Care Unit: Parental Attitudes Regarding Physician Spiritual and Religious Inquiry." American Journal of Hospice and Palliative Medicine® 35, no. 1 (December 8, 2016): 28–33. http://dx.doi.org/10.1177/1049909116682016.

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Objective: Parents of seriously ill children require attention to their spiritual needs, especially during end-of-life care. The objective of this study was to characterize parental attitudes regarding physician inquiry into their belief system. Materials and Main Results: A total of 162 surveys from parents of children hospitalized for >48 hours in pediatric intensive care unit in a tertiary academic medical center were analyzed. Forty-nine percent of all respondents and 62% of those who identified themselves as moderate to very spiritual or religious stated that their beliefs influenced the decisions they made about their child’s medical care. Although 34% of all respondents would like their physician to ask about their spiritual or religious beliefs, 48% would desire such enquiry if their child was seriously ill. Those who identified themselves as moderate to very spiritual or religious were most likely to welcome the discussion ( P < .001). Two-thirds of the respondents would feel comforted to know that their child’s physician prayed for their child. One-third of all respondents would feel very comfortable discussing their beliefs with a physician, whereas 62% would feel very comfortable having such discussions with a chaplain. Conclusion: The study findings suggest parental ambivalence when it comes to discussing their spiritual or religious beliefs with their child’s physicians. Given that improved understanding of parental spiritual and religious beliefs may be important in the decision-making process, incorporation of the expertise of professional spiritual care providers may provide the optimal context for enhanced parent–physician collaboration in the care of the critically ill child.

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24

Агафонова, Светлана, and Svetlana Agafonova. "Art Pedagogy As a Mean of Psychological Support and Methods of Aesthetic Education of Seriously Ill Child." Primary Education 7, no. 4 (September 10, 2019): 48–50. http://dx.doi.org/10.12737/article_5d63a155cb4559.10151152.

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In the article, written on the basis of practical experience of the author, working in the Separate structural unit “School № 109” on the basis of the National Medical Research Center for Pediatric Hematology, Oncology and Immunology named after Dmitry Rogachev”, discusses the problem of using special methods of art pedagogy in the training and education of children undergoing long-term treatment. The methods proposed by the author positively affect the psychoemotional state of seriously ill children and are considered as an essential component of complex treatment.

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25

Balogun, S., C. Boyd, C. Miller, R. Bowron, and A. F. Mellon. "Audit of triage tools to recognise seriously ill children with fever: should we change?" Archives of Disease in Childhood 96, Supplement 1 (April 1, 2011): A56—A57. http://dx.doi.org/10.1136/adc.2011.212563.129.

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26

Alonso, P. L., Alison Bowman, K. Marsh, and B. M. Greenwood. "The accuracy of the clinical histories given by mothers of seriously ill African children." Annals of Tropical Paediatrics 7, no. 3 (September 1987): 187–89. http://dx.doi.org/10.1080/02724936.1987.11748504.

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27

Vanclooster, Stephanie, Charlotte Benoot, Johan Bilsen, Lieve Peremans, and Anna Jansen. "Stakeholders’ Perspectives on Communication and Collaboration Following School Reintegration of a Seriously Ill Child: A Literature Review." Child & Youth Care Forum 47, no. 4 (February 19, 2018): 583–612. http://dx.doi.org/10.1007/s10566-018-9443-4.

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28

Wilkinson, Dominic. "The Charlie Gard Case, and the Ethics of Obstructing International Transfer of Seriously Ill Children." Pediatrics 146, Supplement 1 (July 31, 2020): S54—S59. http://dx.doi.org/10.1542/peds.2020-0818k.

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29

Cook, Kerry. "Continuing Professional Development: Assessment of the acutely or seriously ill child or young person in the prehospital setting." Journal of Paramedic Practice 2, no. 4 (April 21, 2010): 1–7. http://dx.doi.org/10.12968/jpar.2010.2.4.cpd1.

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30

Demirturk, Orhan, Murat Güvener, Isa Coşkun, and Hüseyin Ali Tünel. "Results From Extrapleural Clipping of a Patent Ductus Arteriosus in Seriously Ill Preterm Infants." Pediatric Cardiology 32, no. 8 (July 14, 2011): 1164–67. http://dx.doi.org/10.1007/s00246-011-0050-5.

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31

Sutter, Camilla, and Thomas Reid. "How Do We Talk to the Children? Child Life Consultation To Support the Children of Seriously Ill Adult Inpatients." Journal of Palliative Medicine 15, no. 12 (December 2012): 1362–68. http://dx.doi.org/10.1089/jpm.2012.0019.

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32

Agafonova, Svetlana. "Implementation of Means of Art Pedagogy: Origami Classes with Long-Term Ill Children." Primary Education 9, no. 3 (July 13, 2021): 15–18. http://dx.doi.org/10.12737/1998-0728-2021-9-3-15-18.

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The article, based on the results of the personal practical experience of the author working with seriously ill children who are in hospitals and deprived of the opportunity to study in ordinary schools, reveals the effectiveness of using such a means of art pedagogy as origami. Classes on the design of various paper figures have a positive effect on child patients: they reduce the state of fear and anxiety, distract from pain, increase self-confidence, and contribute to the establishment of friendships. In the process of folding origami, in addition to the pleasure of getting a new model, children improve their knowledge in the field of geometry, develop spatial abilities, learn new concepts and properties.

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33

Lesko, Samuel M., and Allen A. Mitchell. "Total bilirubin level in relation to excipients in parenteral morphine sulfate administered to seriously ill newborn infants." Paediatric and Perinatal Epidemiology 8, no. 4 (October 1994): 401–10. http://dx.doi.org/10.1111/j.1365-3016.1994.tb00479.x.

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34

Sunseri, Paul A. "Hidden Figures: Is Improving Family Functioning a Key to Better Treatment Outcomes for Seriously Mentally Ill Children?" Residential Treatment for Children & Youth 37, no. 1 (March 21, 2019): 46–64. http://dx.doi.org/10.1080/0886571x.2019.1589405.

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35

Gottardo, Nicholas G. "‘Walking their walk’: reducing conflict between families of ill children and the medical profession." Archives of Disease in Childhood 105, no. 1 (August 20, 2019): 87–89. http://dx.doi.org/10.1136/archdischild-2019-317387.

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In recent years, several high-profile court cases generated headlines across the globe. Notably, they brought conflict between families of seriously ill children and the medical profession to the forefront. These conflicts, especially when the courts become involved, are highly destructive to all parties concerned, as the focus inevitably shifts from the child to the conflict itself. Often, at the heart of conflict, is a lack of effective communication between a patient’s family and their health providers. In order to assist health workers in the prevention, recognition and management of conflict in paediatrics, a Conflict Management Framework (CMF) and a set of guidelines endorsed by the Royal College of Paediatrics and Child Health (RCPCH) have been developed. Here, I review recent high-profile court cases to underscore the changing landscape of conflict and the central role that the media (and social media in particular) can play in fuelling and intensifying conflicts. The CMF and RCPCH-endorsed guidelines are discussed in the context of my own experience utilising some of these, as well as implementing other strategies aimed at reducing conflict in a paediatric oncology and haematology unit.

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36

Johnston, Donna L., Tracy A. Hentz, and Debra L. Friedman. "Pediatric Palliative Care." Journal of Pediatric Pharmacology and Therapeutics 10, no. 4 (October 1, 2005): 200–214. http://dx.doi.org/10.5863/1551-6776-10.4.200.

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Pediatric palliative care provides benefit to children living with life-threatening or terminal conditions. Palliative care should be available to all seriously ill children. Palliative care includes the treatment of symptoms such as pain, nausea, dyspnea, constipation, anorexia, and sialorrhea. This care can occur in a variety of settings, from home to hospice to hospital, and must include bereavement care and follow up after the death of a child. There are many challenges in pediatric palliative care, but continued research into this important area of pediatrics will lead to improvements in the care of children with life-threatening illnesses.

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37

Fahner, Jurrianne C., Thessa W. Thölking, Judith A. C. Rietjens, Agnes van der Heide, Johannes J. M. van Delden, and Marijke C. Kars. "Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child." European Journal of Pediatrics 179, no. 9 (March 19, 2020): 1461–68. http://dx.doi.org/10.1007/s00431-020-03627-2.

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38

Reid, Thomas, and Camilla Sutter. "How Do We Talk To Our Children?: Using Child Life To Support the Children of Seriously Ill Adult Inpatients (789)." Journal of Pain and Symptom Management 43, no. 2 (February 2012): 473–74. http://dx.doi.org/10.1016/j.jpainsymman.2011.12.267.

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39

Meaney, Peter Andrew, Christine Lynn Joyce, Segolame Setlhare, Hannah E. Smith, Janell L. Mensinger, Bingqing Zhang, Kitenge Kalenga, et al. "Knowledge acquisition and retention following Saving Children’s Lives course for healthcare providers in Botswana: a longitudinal cohort study." BMJ Open 9, no. 8 (August 2019): e029575. http://dx.doi.org/10.1136/bmjopen-2019-029575.

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ObjectivesMillions of children die every year from serious childhood illnesses. Most deaths are avertable with access to quality care. Saving Children’s Lives (SCL) includes an abbreviated high-intensity training (SCL-aHIT) for providers who treat serious childhood illnesses. The objective of this study was to examine the impact of SCL-aHIT on knowledge acquisition and retention of providers.Setting76 participating centres who provide primary and secondary care in Kweneng District, Botswana.ParticipantsDoctors and nurses expected by the District Health Management Team to provide initial care to seriously ill children, completed SCL-aHIT between January 2014 and December 2016, submitted demographic data, course characteristics and at least one knowledge assessment.MethodsRetrospective, cohort study. Planned and actual primary outcome was adjusted acquisition (change in total knowledge score immediately after training) and retention (change in score at 1, 3 and 6 months), secondary outcomes were pneumonia and dehydration subscores. Descriptive statistics and linear mixed models with random intercept and slope were conducted. Relevant institutional review boards approved this study.Results211 providers had data for analysis. Cohort was 91% nurses, 61% clinic/health postbased and 45% pretrained in Integrated Management of Childhood Illness (IMCI). A strong effect of SCL-aHIT was seen with knowledge acquisition (+24.56±1.94, p<0.0001), and loss of retention was observed (−1.60±0.67/month, p=0.018). IMCI training demonstrated no significant effect on acquisition (+3.58±2.84, p=0.211 or retention (+0.20±0.91/month, p=0.824) of knowledge. On average, nurses scored lower than physicians (−19.39±3.30, p<0.0001). Lost to follow-up had a significant impact on knowledge retention (−3.03±0.88/month, p=0.0007).ConclusionsaHIT for care of the seriously ill child significantly increased provider knowledge and loss of knowledge occurred over time. IMCI training did not significantly impact overall knowledge acquisition nor retention, while professional status impacted overall score and lost to follow-up impacted retention.

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Alexandrova, Olga V., Alexander E. Tkachenko, and Irina V. Kushnareva. "Cognitive Assessment of Causes of a Child’s Disease by Relatives of the Child (based on a study of children with severe chronic and incurable diseases)." Pediatrician (St. Petersburg) 7, no. 2 (June 15, 2016): 135–39. http://dx.doi.org/10.17816/ped72135-139.

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The article presents the results obtained when testing the hypothesis that the relatives of seriously ill children often feel guilty believing themselves to be responsible for the child’s illness. At the same time, relatives of children with cancer often mystify causes of the disease and relatives of children with other chronic diseases, when assessing causes of the illness, give greater importance to the influence of external impacts, injuries. During the study, a questionnaire was designed to find out basic cognitive mindsets of relatives about the causes of children’s diseases, and using the method of principal components we determined four factors that we have interpreted as the following generalized attitudes toward the causes of disease: “Damage to the body caused by objective factors on the background of their own guilt”, “Fate. Fatalism. Predestination”, “Disease as an accident (trauma)”, and “Illness as an influence of evil forces. Mystic”. As a result of the study, we concluded that the majority of parents of seriously ill children tend to quite realistically consider the child’s disease and claim mainly the environmental negative impact for the cause of the disease, but at the same time they feel to share an essential part of blame for the disease, whatever the nature of illness is. The following differences between parents of children with different diseases were determined: the relatives of children with cancer are less likely to consider a disease as an accident (trauma). Relatives of children in both groups are in the same degree exposed to mystical ideas about the causes of disease.

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41

Bohnhorst, Bettina. "Skin to Skin Care in the Neonatal Intensive Care Unit: More Data Regarding Seriously Ill Infants Are Badly Needed." Neonatology 97, no. 4 (2010): 318–20. http://dx.doi.org/10.1159/000255164.

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42

Hayden, Georgina, Peter H. Hewson, David Eddey, Darren Smith, and Peter J. Vuillermin. "Implementation of a checklist to assist in the rapid identification of seriously ill children in the emergency department: An observational study." Journal of Paediatrics and Child Health 45, no. 5 (May 2009): 274–78. http://dx.doi.org/10.1111/j.1440-1754.2009.01489.x.

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43

Saprai, Prince. "Morality and the market: containing the beast." International Journal of Law in Context 9, no. 2 (June 2013): 279–84. http://dx.doi.org/10.1017/s1744552313000025.

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In his latest book, the renowned political philosopher Michael Sandel asks what has become a pressing question for our age: Is there anything money can't buy? Sandel shows that there are certainly very few. If you've got the money, you can: hunt and kill endangered species like the black rhino; have 24/7 access to a doctor; give your child an elite education; gain a right to pollute the atmosphere; get people to stand in queues for you; place a bet that a particular celebrity will die next year; gain the life insurance policies of people who are seriously ill in the hope of cashing in when they die; and you can even get someone to make an apology on your behalf.

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44

Vettukattil, Joseph J. "Target Oxygen Levels and Critical Care of the Newborn." Current Pediatric Reviews 16, no. 1 (April 9, 2020): 2–5. http://dx.doi.org/10.2174/1573396315666191016094828.

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Despite our growing experience in the medical care of extremely preterm infants and critically ill neonates, there are serious gaps in the understanding and clinical application of the adaptive physiology of the newborn. Neonatal physiology is often misinterpreted and considered similar to that of adult physiology. The human psyche has been seriously influenced, both from an evolutionary and survival point of view, by the cause and effect of hypoxemia which is considered as a warning sign of impending death. Within this context, it is unimaginable for even the highly trained professionals to consider saturation as low as 65% as acceptable. However, all available data suggests that newborns can thrive in a hypoxemic environment as they are conditioned to withstand extreme low saturations in the fetal environment. An approach utilizing the benefits of the hypoxic conditioning would prompt the practice of optimal targeted oxygen saturation range in the clinical management of the newborn. Our current understanding of cyanotic congenital heart disease and the physiology of single ventricle circulation, where oxygen saturation in mid 70s is acceptable, is supported by clinical and animal studies. This article argues the need to challenge our current acceptable target oxygen saturation in the newborn and provides the reasoning behind accepting lower target oxygen levels in the critically ill newborn. Challenging the current practice is expected to open a debate paving the way to understand the risks of high target oxygen levels in the newborn compared with the benefits of permissive hypoxia in avoiding the associated morbidity and mortality of oxygen radical injury.

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Oates, Margaret. "Patients as parents: the risk to children." British Journal of Psychiatry 170, S32 (April 1997): 22–27. http://dx.doi.org/10.1192/s0007125000298681.

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Traditionally adult psychiatrists have been more concerned with their patient's family of origin than with the family of procreation. When considering the management of the seriously mentally ill, the family is regarded as a potential source of stress or care, and little attention is given to the role of the patient as a parent (Rutter, 1966; Bennett, 1996). This position is exemplified by the absence of questions relating to childcare on the Health of the Nation Outcome Scale (HoNOS; Wing et al, 1995). This scale is likely to be widely used in the Care Programme Approach in England and Wales as an indicator of illness severity and outcome. Such questions should include the effect of the illness and disability on the physical and emotional development of the child, and the patients' ability to manage the responsibilities of childcare.

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Margolis, Rachel, Erica Ludi, Maryland Pao, and Lori Wiener. "International Adaptation: Psychosocial and Parenting Experiences of Caregivers Who Travel to the United States to Obtain Acute Medical Care for Their Seriously Ill Child." Social Work in Health Care 52, no. 7 (August 2013): 669–83. http://dx.doi.org/10.1080/00981389.2013.798391.

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Steinhauser, Karen E., Annette Olsen, Kimberly S. Johnson, Linda L. Sanders, Maren Olsen, Natalie Ammarell, and Daniel Grossoehme. "The feasibility and acceptability of a chaplain-led intervention for caregivers of seriously ill patients: A Caregiver Outlook pilot study." Palliative and Supportive Care 14, no. 5 (October 29, 2015): 456–67. http://dx.doi.org/10.1017/s1478951515001248.

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AbstractObjective:When caring for a loved one with a life-limiting illness, a caregiver's own physical, emotional, and spiritual suffering can be profound. While many interventions focus on physical and emotional well-being, few caregiver interventions address existential and spiritual needs and the meaning that caregivers ascribe to their role. To evaluate the feasibility and acceptability of the process and content of Caregiver Outlook, we employed a manualized chaplain-led intervention to improve well-being by exploring role-related meaning among caregivers of patients with a life-limiting illness.Method:We conducted a single-arm pre–post pilot evaluation among caregivers of patients with advanced cancer or amyotrophic lateral sclerosis (ALS). Caregivers completed three chaplain-led intervention sessions focusing on (1) a relationship review, (2) forgiveness, and (3) legacy. Outcomes administered at baseline and at 1 and 2 weeks after the intervention included quality of life, anxiety, depression, spiritual well-being, religious coping, caregiver burden, and grief.Results:The sample (N = 31) included a range of socioeconomic status groups, and the average age was approximately 60 years. A third of them worked full-time. Some 74% of our participants cared for a spouse or partner, and the other quarter of the sample cared for a parent (13%), child (10%), or other close family member (3%). At baseline, participants did not demonstrate clinical threshold levels of anxiety, depression, or other indicators of distress. Outcomes were stable over time. The qualitative results showed the ways in which Caregiver Outlook was assistive: stepping back from day-to-day tasks, the opportunity to process emotions, reflecting on support received, provoking thoughts and emotions between sessions, discussing role changes, stimulating communication with others, and the anonymity of a phone conversation. Both religious and nonreligious participants were pleased with administration of the chaplain intervention.Significance of results:The acceptability and feasibility of Caregiver Outlook were demonstrated among caregivers of patients with an advanced illness. Our pilot findings suggest minor modifications to study participant screening, interventionist guidance, and the study measures.

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Woods, Martin. "Balancing Rights and Duties in ‘Life and Death’ Decision Making Involving Children: a role for nurses?" Nursing Ethics 8, no. 5 (September 2001): 397–408. http://dx.doi.org/10.1177/096973300100800504.

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In recent years, increasing pressures have been brought to bear upon nurses and others more closely to inform, involve and support the rights of parents or guardians when crucial ‘life and death’ ethical decisions are made on behalf of their seriously ill child. Such decisions can be very painful for all involved, and may easily become deadlocked when there is an apparent clash of moral ideals or values between the medical team and the parents or guardians. This article examines a growing number of such cases in New Zealand and analyses the moral parameters, processes, outcomes and ethical responses that must be considered when life and death ethical decisions involving children are made. The article concludes with a recommendation that nurses should be recognized as perhaps the most suitable of all health care personnel when careful mediation is needed to produce an acceptable moral outcome in difficult ethical situations.

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Wong, Tracy, Rodney S. Fowler, Robert Freedom, and Douglas H. Johnston. "Infectious endocarditis in an analysis of fifty-five episodes over a ten-year period." Cardiology in the Young 7, no. 4 (October 1997): 393–401. http://dx.doi.org/10.1017/s1047951100004406.

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AbstractMortality from infectious endocarditis in the general paediatric population had decreased significantly over the last two decades. This is attributable to the increased awareness of the health care team in recognizing the early signs of this once fatal disease such that early antibiotic intervention is possible. Two groups, however, remain at high risk for infectious endocarditis. Advances in cardiac surgery have dramatically improved the prognosis for survival in many children with otherwise fatal congenital heart diseases. This group of children, along with the seriously ill who have central venous catheters in place, are currently at the highest risk for development of infectious endocarditis.1-5

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Tonge, Bruce John, Jill Marie Pullen, Georgina Catherine Hughes, and Jeanette Beaufoy. "Effectiveness of Psychoanalytic Psychotherapy for Adolescents with Serious Mental Illness: 12 Month Naturalistic Follow-Up Study." Australian & New Zealand Journal of Psychiatry 43, no. 5 (January 1, 2009): 467–75. http://dx.doi.org/10.1080/00048670902817679.

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Objective: The aim of this naturalistic longitudinal study was to examine the effectiveness of individual psychoanalytic psychotherapy in reducing symptoms and improving overall functioning for adolescents with severe mental illness beyond the changes observed with treatment as usual. Changes to family functioning were also examined. Method: Participants at 12 month follow up were 55 of an initial group of 80 Child and Adolescent Mental Health Services patients with complex, severe mental illness (32 female, mean age = 15.11 years). At initial assessment 40 participants were offered psychoanalytic psychotherapy when a psychotherapist became available; 23 accepted and received once- or twice-weekly psychoanalytic psychotherapy for 4–12 months. Out of the initial 57 participants who received Child and Adolescent Mental Health Services treatment as usual, 33 were reassessed at 12 months. Self-reported depressive symptoms, parent-reported social and attention problems and researcher-evaluated overall functioning and family functioning were measured at initial assessment and 12 months later. Results: At 12 months, psychotherapy was associated with a greater reduction in depressive, social and attention problems than treatment as usual, alone, if these problems were initially in the clinical range. There was no effect on participant overall functioning or family functioning. Conclusions: This naturally occurring sample of seriously ill adolescents referred to Child and Adolescent Mental Health Services for assessment were suffering complex mental illness and poor mental health. Empirical evidence is presented that psychoanalytic psychotherapy is an effective addition to Child and Adolescent Mental Health Services treatment as usual for mental illness in adolescence, particularly for more severe and complex cases. The naturalistic study design and participant attrition are possible study limitations.

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