Hope Is a Thing with Feathers

Save My Kid ◽  
2020 ◽  
pp. 3-23
Author(s):  
Amanda M. Gengler
Keyword(s):  
Critically Ill ◽  
Family Life ◽  
Healthcare Providers ◽  
Critically Ill Children ◽  
Health Capital ◽  
Life Threatening Illness ◽  
Life Threatening ◽  
Basic Concepts ◽  
Reproduction Of Inequality

Since families with critically ill children have different resources available to them, they take different approaches to managing their child’s life-threatening illness. The author introduces basic concepts that are analyzed over the course of the book, including care-captaining, which involves working hard to influence the course of their child’s treatment, and care-entrusting, which involves deferring to the judgement of their child’s healthcare providers. Additionally, the chapter covers the topic of healthcare inequality and cultural health capital, emotions and the reproduction of inequality in family life, and more.

scholarly journals Parents and nurses telling their stories: the perceived needs of parents caring for critically ill children at the Kilimanjaro Christian Medical Centre in Tanzania

BMC Nursing ◽  
2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Vivian Frank Saria ◽  
Lilian Teddy Mselle ◽  
Birgit Anne Siceloff
Keyword(s):  
Intensive Care ◽  
Critically Ill ◽  
Psychosocial Support ◽  
Qualitative Content Analysis ◽  
Healthcare Providers ◽  
Hospital Setting ◽  
Medical Centre ◽  
Critically Ill Children ◽  
Kilimanjaro Christian Medical Centre ◽  
Centre Hospital

Abstract Background Parents have significant responsibility in the care of their critically ill children who have been admitted to the intensive care unit (ICU). When staying with their children in the hospital, they also have particular needs that should be adequately acknowledged and responded to by healthcare providers. Moreover, when their needs are not identified and addressed, parents may experience stress and anxiety as a result. This study describes the needs of parents caring for hospitalized critically ill children, as perceived by parents and nurses. Methods This study used a descriptive qualitative research design. Five focus group discussions with nurses and parents of critically ill children, who were purposefully recruited, were conducted at the Kilimanjaro Christian Medical Centre Hospital. A qualitative content analysis guided the analysis of the data. Results Two themes emerged from the perceptions of parents and nurses about the needs of parents caring for hospitalized critically ill children. These were: “engaging parents in the care of their children” and “receiving psychosocial support”. Both parents and nurses identified the importance of providing adequate information about their children’s progress, encouraging and involving parents in the care of their children and having flexible visiting time for parents was vital when caring for critically ill children. Conclusions This study provides an in-depth understanding of parents’ needs when caring for critically ill children in the hospital setting. Nurses caring for these children should understand the needs of parents and integrate the parents into the daily care of their children. Nurses should also continuously support, inform and engage parents during child-caring procedures. Finally, visiting times for intensive care units should be flexible and allow more time for parents to connect with their hospitalized children.

The needs of siblings of children with a life-threatening illness, part 1: Conceptualization and development of a measure

2017 ◽  
Vol 15 (6) ◽  
pp. 644-664 ◽  
Author(s):  
Marianne Olivier-D'Avignon ◽  
Serge Dumont ◽  
Pierre Valois ◽  
S. Robin Cohen
Keyword(s):  
Qualitative Methodology ◽  
Critically Ill Children ◽  
Second Phase ◽  
Difficult Situation ◽  
Promising Tool ◽  
Third Phase ◽  
Life Threatening Illness ◽  
Preliminary Version ◽  
Life Threatening ◽  
Selection Of

ABSTRACTObjective:The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved in the conceptualization, development, and content validation of an initial version of the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically ill Children].Method:The first phase of the development of this instrument was conducted using qualitative methodology (focus groups: 6 siblings, 8 parents). The second phase consisted of validating the content of a pool of items developed according to the needs identified in the first phase. Some 21 participants (3 psychometricians, 3 researchers, 9 clinicians, and 6 siblings) evaluated each item for relevance and clarity. Finally, during the third phase, the acceptability and administration procedures of the preliminary version of the instrument were assessed qualitatively by five siblings.Results:The first phase led to production of a typology made up of 43 needs in 10 different environments. The second phase allowed for selection of the items that were clearest and most relevant, based on expert opinion. This procedure gave rise to a first version of the IBesFEMS, which consisted of 48 items.Significance of results:The IBesFEMS appears to be a promising tool for specifically assessing the needs of the adolescent siblings of seriously ill children.

scholarly journals Severe sepsis criteria, PELOD-2, and pSOFA as predictors of mortality in critically ill children with sepsis

2019 ◽  
Vol 59 (6) ◽  
pp. 318-24
Author(s):  
Anindita Wulandari ◽  
Pudjiastuti Pudjiastuti ◽  
Sri Martuti
Keyword(s):  
Severe Sepsis ◽  
Inflammatory Response ◽  
Critically Ill ◽  
Organ Dysfunction ◽  
Pediatric Intensive Care ◽  
Critically Ill Children ◽  
Logistic Organ Dysfunction ◽  
High Care ◽  
Life Threatening ◽  
Physical Examinations

Background Sepsis is one of the main causes of death in infants and children. Currently, it is defined as a life-threatening organ dysfunction, caused by an inflammatory response of infection. Several organ dysfunction assessment methods are available, but they are not uniformly used. Objective To compare the accuracy of three mortality predictor tools: severe sepsis criteria, pediatric logistic organ dysfunction (PELOD)-2, and pediatric sequential organ failure assessment (pSOFA), in critically ill children with sepsis. Methods This prospective cohort study was conducted in the pediatric intensive care unit (PICU) and pediatric high care unit (HCU) of dr. Moewardi Hospital, Surakarta, Central of Java. All patients who met the systemic inflammatory response syndrome (SIRS) criteria were included in our study. The exclusion criteria were congenital anomalies of heart or kidney, malignancy, or hematological abnormalities. The data were taken from laboratory and physical examinations by the physicians on duty. The outcome assessed was mortality. Results Of 30 subjects, the mean age was 22.22 (SD 29.36) months; the most common infection source was the respiratory tract, followed by gastrointestinal tract and central nervous system. Most subjects were treated in the PICU and had a mean length of stay of 8.70 (SD 11.91) days. Severe sepsis and PELOD-2 were not significant predictors of death. However, pSOFA score was a statistically significant predictor of mortality, with odds ratio 10.11 (95%CI 1.054 to 97.002; P=0.039). Conclusion Pediatric SOFA (pSOFA) is a better predictor of mortality compared to PELOD-2 and SIRS-severe sepsis. A pSOFA score ≥ 2 increases the risk of mortality by 10.11-fold.

The critically ill patient

2016 ◽  
Author(s):  
Jerry Nolan
Keyword(s):  
Critically Ill ◽  
Head Injuries ◽  
Anaesthetic Management ◽  
Pelvic Fractures ◽  
Critically Ill Patient ◽  
Abdominal Injuries ◽  
Chest Injuries ◽  
Life Threatening Illness ◽  
Limb Injuries ◽  
Life Threatening

This chapter discusses the anaesthetic management of the critically ill patient suffering from trauma or life-threatening illness. It begins by describing the principles of immediate trauma care, and the primary and secondary surveys. It then goes into more detail about head injuries, chest injuries, abdominal injuries, pelvic fractures, spinal injuries, limb injuries, burns, multiple trauma, post-cardiac arrest resuscitation care, and septic shock. It concludes by describing the transfer of the critically ill patient to the operating theatre or to another unit.

The needs of siblings of children with a life-threatening illness, part 2: Psychometric validation of the IBesFEMS

2016 ◽  
Vol 15 (1) ◽  
pp. 20-31 ◽  
Author(s):  
Marianne Olivier d'avignon ◽  
Serge Dumont ◽  
Pierre Valois ◽  
S. Robin Cohen
Keyword(s):  
Intraclass Correlation ◽  
Temporal Stability ◽  
Psychometric Validation ◽  
Critically Ill Children ◽  
Factorial Structure ◽  
Future Studies ◽  
Life Threatening Illness ◽  
Preliminary Validation ◽  
New Instrument ◽  
Life Threatening

AbstractObjective:Life-threatening illnesses in children have a significant impact on the lives of their brothers and sisters. Consequently, special attention must be paid to the specific needs of these siblings to help them cope with their situations. To address this issue, we developed an inventory of the needs of the adolescent siblings of severely ill children, the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically Ill Children]. The present article describes a preliminary validation study of this new instrument.Method:In a prospective cohort study, the 48-item instrument was administered via a website or paper to 58 siblings.Results:Our study revealed that the measure has an estimated internal consistency of 0.96 and a temporal stability intraclass correlation coefficient (ICC) of 0.86 (p < 0.01). Its convergence validity is also satisfactory.Significance of results:Our findings suggest that the IBesFEMS is highly relevant for pediatric palliative care clinicians and researchers. Future studies should investigate its factorial structure and predictive validities.

Withdrawal of Life-Sustaining Therapy After Sudden, Unexpected Life-Threatening Illness or Injury: Interactions Between Patients’ Families, Healthcare Providers, and the Healthcare System

2006 ◽  
Vol 15 (2) ◽  
pp. 178-187 ◽  
Author(s):  
Debra Lynn-McHale Wiegand
Keyword(s):  
Healthcare System ◽  
Phenomenological Study ◽  
Healthcare Providers ◽  
Family Members ◽  
Future Research ◽  
Coordination Of Care ◽  
Life Threatening Illness ◽  
Care Family ◽  
Life Threatening ◽  
Nurses And Physicians

• Background Withdrawal of life-sustaining therapy in intensive care units is increasing. Patients’ families are intimately involved in this process because the patients are usually unable to participate. Little is known about family members’ interactions with healthcare providers and the healthcare system during this process.• Objective To describe the interactions between patients’ family members, healthcare providers, and the healthcare system during withdrawal of life-sustaining therapy after a sudden, unexpected illness or injury.• Methods The investigation was part of a larger interpretative phenomenological study. Nineteen families (56 family members) who participated in the process of withdrawal of life-sustaining therapy for a family member were interviewed and observed. An inductive approach to data analysis was used to discover units of meaning, clusters, and categories.• Results The families’ experiences involved a variety of dimensions, including issues with healthcare providers (bonds and consistency with nurses and physicians, physicians’ presence, information, coordination of care, family meetings, sensitivity to time, and preparation for the dying process) and issues with the healthcare system (parking, struggles with finding privacy, and transfers of patients).• Conclusions Patients’ families need information, guidance, and support as the families participate in the process of withdrawal of life-sustaining therapy. The results of this study have important implications for clinical practice and future research.

The critically ill patient

2018 ◽  
Author(s):  
Jerry Nolan
Keyword(s):  
Critically Ill ◽  
Head Injuries ◽  
Anaesthetic Management ◽  
Pelvic Fractures ◽  
Critically Ill Patient ◽  
Abdominal Injuries ◽  
Chest Injuries ◽  
Life Threatening Illness ◽  
Limb Injuries ◽  
Life Threatening

This chapter discusses the anaesthetic management of the critically ill patient suffering from trauma or life-threatening illness. It begins by describing the principles of immediate trauma care, and the primary and secondary surveys. It then goes into more detail about head injuries, chest injuries, abdominal injuries, pelvic fractures, spinal injuries, limb injuries, burns, multiple trauma, post-cardiac arrest resuscitation care, and septic shock. It concludes by describing the transfer of the critically ill patient to the operating theatre or to another unit.

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