Goals of Morbidity and Mortality meetings in paediatric acute care. A qualitative case study.

Morbidity and Mortality meetings are conducted in varied clinical contexts including paediatrics. Widely cited as an educational or quality improvement tool, the reality is more complex. In this qualitative study, the aim was to explore the perceived goals of the paediatric acute care Morbidity and Morbidity meeting. This study used semi-structured interviews and observation within a qualitative case study methodology. Data were collected in a large paediatric quaternary hospital. Analysis generated themes related to meeting observations and the participant's interpretation of meeting goals. A total of 44 interviews were conducted with 14 nurses, 29 doctors, and 1 allied health professional. Thirty-two meetings in six clinical departments were observed. Two themes were developed: complex and nuanced goals; and tensions and contest between and within goals. Meeting goals to evaluate care, learn, support, adhere, and change and respond were sometimes in competition and had varied interpretations. Morbidity and Mortality meetings in this setting are valued and occupy a complex role which reaches beyond identification of measurable patient safety interventions. Understanding goals more fully can lead to optimised conduct and meaningful measurement of efficacy. The strength in these meetings may be the way they promote an embedded safety culture, and an informed and skilled workforce.

Immunofluorescence Protocol for Characterization of Platelet and Leukocyte Binding in Extracorporeal Membrane Oxygenation (ECMO) Circuits.

The continuous contact between blood and the foreign surface of the extracorporeal membrane oxygenation (ECMO) circuit contributes to hemostatic, inflammatory, and other physiological disturbances observed during ECMO. Although previous studies have extensively investigated blood samples from patients on ECMO, cell adsorption to the ECMO circuit as an additional factor that could potentially influence clinical outcomes, has largely been overlooked. Here we provide a detailed immunofluorescence (IF) protocol designed to characterize cellular binding on ECMO circuits collected from patients. Extracorporeal membrane oxygenation circuits were collected from three pediatric patients and an albumin primed-only ECMO circuit was used as control. Circuit samples from five different sites within each ECMO circuit were collected and processed for the IF protocol. CD14 and CD42a antibodies were used to identify platelets and leukocytes bound to each ECMO circuit sample and images captured using inverted fluorescence microscopy. The protocol enables the comprehensive characterization of platelet and leukocyte binding to ECMO circuits collected from patients, which could in turn extend our knowledge of the characteristics of circuit binding and may provide guidance for improved ECMO circuit design.

Pediatric invasive device utility and harm: a multi-site point prevalence survey.

BACKGROUND AND AIMS: Invasive devices are widely used in healthcare settings; however, pediatric patients are especially vulnerable to invasive device-associated harm. This study aimed to explore invasive device utility, prevalence, harm, and clinical practice across three Australian pediatric tertiary hospitals. METHODS: In 2022-2023, a multi-center, observational, rolling-point-prevalence survey was conducted. Fifty-per-cent of inpatients were systemically sampled by random allocation. Patients with devices were then followed for up to 3-days for device-related complications/failures and management/removal characteristics. RESULTS: Of the 285 patients audited, 78.2% had an invasive device (n = 412 devices), with a median of 1 device-per-patient (interquartile range 1-2), with a maximum of 13 devices-per-patient. Over half of devices were vascular access devices (n = 223; 54.1%), followed by gastrointestinal devices (n = 112; 27.2%). The point-prevalence of all device complications on Day 0 was 10.7% (44/412 devices) and period-prevalence throughout the audit period was 27.7% (114/412 devices). The period-prevalence of device failure was 13.4% (55/412 devices). CONCLUSIONS: The study highlighted a high prevalence of invasive devices among hospitalized patients. One-in-ten devices failed during the audit period. These findings underscore the need for vigilant monitoring and improved strategies to minimize complications and enhance the safety of invasive devices in pediatric hospital settings. IMPACT: A high prevalence of invasive devices among hospitalized patients was reported. Of the 285 patients audited, almost 80% had an invasive device (total 412 devices), with a median of 1 device-per-patient and a maximum of 13 devices-per-patient. The most common devices used in pediatric healthcare are vascular access devices (n = 223; 54.1%), however, 16% (n = 36) of these devices failed, and one-third had complications. The point prevalence of all device complications at day 0 was 10.7% (44 out of 412 devices), with a period prevalence of 27.7% (114 out of 412 devices) throughout the audit period.

"Their Bodies Just Give It Away": A Qualitative Study of Pain Assessment in the Context of Pediatric Hematopoietic Stem Cell Transplantation Therapy.

BACKGROUND: Children undergoing hematopoietic stem cell transplantation (HSCT) are vulnerable to pain. OBJECTIVE: This study aimed to examine how healthcare providers and parents assessed pain and what contextual factors influenced their pain assessment practices for children hospitalized after allogeneic HSCT therapy. METHODS: A qualitative case study was conducted in a tertiary level pediatric HSCT unit in 2 phases. Semistructured interviews with parents were conducted at 30 and 90 days after HSCT therapy. Healthcare providers participated in naturalistic observations of pain-related care provided to children during their hospitalization for HSCT therapy and a semistructured interview. RESULTS: The assessment of pain after transplantation by healthcare providers and parents was predominantly reliant on the observation of children for behaviors indicative of pain, rather than the application of validated pain assessment tools. Without formal measures of the pain experience, judgments regarding the severity of children's pain were influenced by the context of high acuity of care posttransplantation and the emotional responses of healthcare providers and parents from bearing witness to children's pain. CONCLUSION: Pain assessments mostly reflected children's ability to tolerate pain, rather than a genuine measurement of how significantly pain impacted the child. IMPLICATION FOR PRACTICE: This study has emphasized how the assessment of pain for children hospitalized during HSCT therapy is limited by the complexity of the clinical environment. It is recommended that validated methods of assessing pain by healthcare providers and parents be implemented into clinical practice to ensure children's pain is visible.

Goals of the Morbidity and Mortality meeting in acute care: A scoping review.

OBJECTIVE: The objective of this study was to describe what is known about understandings of the goals of the Morbidity and Mortality meeting. REVIEW METHODS USED: The study utilised scoping review methodology. DATA SOURCES: Papers in English presenting empirical data published in academic journals with Morbidity and Mortality meetings as the central concept of study. Included papers presented data about the perception of stakeholders about goals of the Morbidity and Mortality meeting. Medline, Embase, and CINAHL databases were search conducted from earliest record - October 20th 2021. A manual search of the reference lists of all included papers identified further eligible papers. REVIEW METHODS: Data about the location, participant type, and methods/ methodology were extracted and entered onto a database. Content analysis of the results and discussion sections of qualitative papers yielded broad categories of meeting goal. This provided a framework for the organisation of the quantitative findings, which were subsequently extracted and charted under these categories. RESULTS: Twenty-five papers were included in the review, and six main categories were identified in the qualitative synthesis of findings. These included meeting goals related to quality and safety, education, legal and reputational risk management, professional culture, family/caregivers, and peer support. CONCLUSIONS: There are heterogeneous understandings of key terminologies used to describe Morbidity and Mortality meeting goals, particularly evident within understandings of educational and quality and safety meeting goals. This paper defines and unravels this complexity in a way that researchers and clinicians can define, compare and evaluate their own department's meeting goals.

Device Related Thrombosis and Bleeding in Pediatric Health Care: A Meta-analysis.

CONTEXT: The risk of invasive device-related thrombosis and bleeding contributes to morbidity and mortality, yet their prevalence by device-types is poorly understood. OBJECTIVES: This study aimed to estimate pooled proportions and rates of thrombotic and bleeding complications associated with invasive devices in pediatric health care. DATA SOURCES: Medline, CINAHL, Embase, Web of Science, Scopus, Cochrane CENTRAL, clinical trial registries, and unpublished study databases were searched. STUDY SELECTION: Cohort studies and trials published from January 2011 to June 2022, including (1) indwelling invasive devices, (2) pediatric participants admitted to a hospital, (3) reporting thrombotic and bleeding complications, and (4) published in English, were included. DATA EXTRACTION: Meta-analysis of observational studies in epidemiology guidelines for abstracting and assessing data quality and validity were used. MAIN OUTCOMES AND MEASURES: Device-specific pooled thromboses (symptomatic, asymptomatic, unspecified) and bleeding (major, minor). RESULTS: Of the 107 studies, 71 (66%) focused on central venous access devices. Symptomatic venous thromboembolism in central venous access devices was 4% (95% confidence interval [CI], 3-5; incidence rate 0.03 per 1000 device-days, 95% CI, 0.00-0.07), whereas asymptomatic was 10% (95% CI, 7-13; incidence rate 0.25 per 1000 device-days, 95% CI, 0.14-0.36). Both ventricular assist devices (28%; 95% CI, 19-39) and extracorporeal membrane oxygenation (67%; 95% CI, 52-81) were often associated with major bleeding complications. CONCLUSIONS: This comprehensive estimate of the incidence and prevalence of device-related thrombosis and bleeding complications in children can inform clinical decision-making, guide risk assessment, and surveillance.

The management of pain during pediatric hematopoietic stem cell transplantation: A qualitative study of contextual factors that influenced pain management practices.

BACKGROUND: Children hospitalized following hematopoietic stem cell transplantation (HSCT) experience complex and prolonged pain in response to the intensity of this treatment. OBJECTIVES: To describe how pain was managed for children during HSCT therapy and how contextual factors related to the clinical environment influenced healthcare providers' and parents' pain management practices. METHODS: A qualitative case study was conducted and involved semi-structured interviews at two time points following transplantation (30 and 90 days) with parents (n = 10) and naturalistic observations of pain-related care provided to children (n = 29) during HSCT therapy by their healthcare providers (n = 10). Semi-structured interviews were also conducted with healthcare providers (n = 14). RESULTS: The effectiveness of pain management interventions was hindered by the multifactorial nature of pain children experienced, a gap in the provision of psychosocial interventions for pain and a lack of evidence-based guidelines for the sustained, and often long-term, administration of opioids and adjuvant medications. Misconceptions were demonstrated by healthcare providers about escalating pain management according to pain severity and differentiating between opioid tolerance and addiction. Parents were active in the management of pain for children, especially the provision of nonpharmacological interventions. Collaboration with external pain services and the impact of caring for children in protective isolation delayed timely management of pain. CONCLUSIONS: There is a pressing need to create evidence-based supportive care guidelines for managing pain post transplantation to optimize children's relief from pain. If parents and children are to be involved in managing pain, greater efforts must be directed toward building their capacity to make informed decisions.

Using an electronic medical record patient portal for warfarin self-management: Empowering children and parents.

Background: Many children taking warfarin perform their international normalized ratio (INR) at home, with results phoned to a clinician who instructs warfarin dosing. Data suggest that parents can be supported to make warfarin dosing decisions themselves, a process known as patient self-management (PSM). Objectives: This study aimed to determine the suitability and acceptability of warfarin PSM in children using the Epic Patient Portal. Methods: Children currently performing INR patient self-testing were eligible. Participation involved an individualized education session, adherence to the PSM program, and participation in phone interviews. Clinical outcomes (INR time in therapeutic range and safety outcomes), patient portal functionality, and family experience were assessed. The hospital human research ethics committee approved the study and consent was obtained from parents/guardians. Results: Twenty-four families undertook PSM. The median age of children was 11 years and all children had congenital heart disease. A median of 13 INRs was uploaded to the portal per family (range, 8-47) across a 10-month period. Before PSM, the mean time the INR was in therapeutic range was 71%; this increased to 79.9% during PSM (difference: P < .001). No adverse events were encountered. Eight families participated in a phone interview. The major theme identified was empowerment; minor themes that emerged included "gaining knowledge," "trust and responsibility builds confidence," "saving time," and "resources as a safety net." Conclusion: This study demonstrates that communication via the Epic Patient Portal is satisfactory to families and offers a suitable option for PSM for children. Importantly, PSM empowers and builds confidence in families to facilitate management of their child's health.

Changes in von Willebrand Factor Multimers, Concentration, and Function During Pediatric Extracorporeal Membrane Oxygenation.

OBJECTIVES: To investigate changes in von Willebrand factor (VWF) concentration, function, and multimers during pediatric extracorporeal membrane oxygenation (ECMO) and determine whether routine monitoring of VWF during ECMO would be useful in predicting bleeding. DESIGN: Prospective observational study of pediatric ECMO patients from April 2017 to May 2019. SETTING: The PICU in a large, tertiary referral pediatric ECMO center. PATIENTS: Twenty-five neonates and children (< 18 yr) supported by venoarterial ECMO. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Arterial blood samples were collected within 24 hours pre-ECMO, daily for the first 5 days of ECMO, every second day until decannulation, and 24 hours post-ECMO. The STA R Max analyzer was used to measure VWF antigen (VWF:Ag) and ristocetin cofactor (VWF:RCo) activity. VWF collagen binding (VWF:CB) was measured using an enzyme-linked immunosorbent assay. VWF multimers were measured using the semi-automated Hydragel 11 VWF Multimer assay. Corresponding clinical data for each patient was also recorded. A total of 25 venoarterial ECMO patients were recruited (median age, 73 d; interquartile range [IQR], 3 d to 1 yr). The median ECMO duration was 4 days (IQR, 3-8 d) and 15 patients had at least one major bleed during ECMO. The percentage of high molecular weight multimers (HMWM) decreased and intermediate molecular weight multimers increased while patients were on ECMO, irrespective of a bleeding status. VWF:Ag increased and the VWF:RCo/VWF:Ag and VWF:CB/VWF:Ag ratios decreased while patients were on ECMO compared with the baseline pre-ECMO samples and healthy children. CONCLUSIONS: Neonates and children on ECMO exhibited a loss of HMWM and lower VWF:CB/VWF:Ag and VWF:RCo/VWF:Ag ratios compared with healthy children, irrespective of major bleeding occurring. Therefore, monitoring VWF during ECMO would not be useful in predicting bleeding in these patients and changes to other hemostatic factors should be investigated to further understand bleeding during ECMO.

Exploring the impact of the COVID-19 environment on nursing delivery of family-centred care in a paediatric hospital.

AIMS AND OBJECTIVES: To understand how the pandemic environment impacted the delivery of FCC of children and families from a nursing perspective in a major tertiary paediatric hospital. BACKGROUND: Family-centred care (FCC) is a well-established framework to promote parental involvement in every aspect of a child's hospitalization, however, rules and restrictions in place during the COVID-19 pandemic affected the ways in which Family-centred Care could be delivered in practice. DESIGN: This is a qualitative exploratory descriptive study to elicit the perspective of paediatric nurses delivering care to children in a hospital during the COVID-19 pandemic in Victoria, Australia. METHODS: Nurses from all subspecialties in a tertiary paediatric hospital were invited to participate in virtual focus groups to discuss their experience of delivering FCC during the COVID-19 pandemic. Focus groups were recorded and transcribed, then analysed using Framework Analysis. RESULTS: Nineteen nurses participated across seven focus groups during June and July 2020. The four themes-Advocating with empathy, Enabling communication, Responding with flexibility, and Balancing competing considerations-and the eight subthemes that were generated, outline how nurses deliver FCC, and how these FCC actions were impacted by the COVID-19 environment and the related hospital restrictions. CONCLUSION: This study documents the experiences, resilience and resourcefulness of paediatric nurses in Australia during the COVID-19 pandemic as well as moving Family-centred Care from a theoretical framework into a practical reality. IMPACT: The findings from this study should inform consideration of the impacts of public health policies during infectious disease outbreaks moving forward. In addition by describing the core actions of Family-centred Care, this study has implications for educational interventions on how to translate FCC theory into practice. No public or patient contribution as this study explored nursing perceptions only.

Guiding warfarin self-management in children: development of a warfarin nomogram.

Background: Warfarin therapy in children is impacted by many variables. To support the implementation of a self-management program within a pediatric anticoagulation service, a pediatric-specific warfarin nomogram was needed. A literature review revealed no published pediatric nomograms; therefore, a nomogram was developed drawing upon an evidence-based "Warfarin Information for Clinicians" hospital guideline. Objectives: This study aimed to evaluate the suitability of a pediatric warfarin nomogram. Methods: A retrospective audit of electronic medical records compared the dosing and international normalized ratio (INR) retest decisions made by hematology clinicians to the dosing and retesting recommended by a new warfarin nomogram at a pediatric hospital. Children (aged 6 months-18 years) receiving warfarin therapy for >6 months were included. Data were collected between September 2019 and February 2020. Descriptive data analysis was performed. The study was approved by the hospital's Human Research Ethics Committee. Results: Warfarin dosing and INR retest decisions for 39 children were included, equating to 521 INRs. The nomogram matched 81.4% of clinicians dosing decisions and 30% of INR retest decisions. Moreover, 59% of the clinician-recommended retest dates were earlier than the nomogram recommendation. In the INR 2.0-3.0 group, 84.4% of dosing decisions and 72% of retest decisions matched the nomogram. Conclusions: These results suggest that this pediatric nomogram is a suitable tool for warfarin dosing, as recommended warfarin doses matched the majority of clinicians' decisions. Modification may be needed to nomogram recommendations for the time to retest. This nomogram can be used to support warfarin self-management and may assist clinicians and patients or families in making evidence-based dosing decisions.

Factors XI and XII in extracorporeal membrane oxygenation: longitudinal profile in children.

Background: Extracorporeal membrane oxygenation (ECMO) is used in children with cardiopulmonary failure. While the majority of ECMO centers use unfractionated heparin, other anticoagulants, including factor XI and factor XII inhibitors are emerging, which may prove suitable for ECMO patients. However, before these anticoagulants can be applied in these patients, baseline data of FXI and FXII changes need to be acquired. Objectives: This study aimed to describe the longitudinal profile of FXI and FXII antigenic levels and function before, during, and after ECMO in children. Methods: This is a prospective observational study in neonatal and pediatric patients with ECMO (<18 years). All patients with venoarterial ECMO and with sufficient plasma volume collected before ECMO, on day 1 and day 3, and 24 hours postdecannulation were included. Antigenic levels and functional activity of FXI and FXII were determined in these samples. Longitudinal profiles of these values were created using a linear mixed model. Results: Sixteen patients were included in this study. Mean FXI and FXII antigenic levels (U/mL) changed from 7.9 and 53.2 before ECMO to 6.0 and 34.5 on day 3 and they recovered to 8.8 and 39.4, respectively, after stopping ECMO. Function (%) of FXI and FXII decreased from 59.1 and 59.0 to 49.0 and 50.7 on day 3 and recovered to 66.0 and 54.4, respectively. Conclusion: This study provides the first insights into changes of the contact pathway in children undergoing ECMO. FXI and FXII antigen and function change during ECMO. Results from this study can be used as starting point for future contact pathway anticoagulant studies in pediatric patients with ECMO.

Coagulation in pediatric extracorporeal membrane oxygenation: A systematic review of studies shows lack of standardized reporting.

Objectives: Extracorporeal membrane oxygenation (ECMO) involves complex coagulation management and frequent hemostatic complications. ECMO practice between centers is variable. To compare results between coagulation studies, standardized definitions and clear documentation of ECMO practice is essential. We assessed how study population, outcome definitions, and ECMO-, coagulation-, and transfusion-related parameters were described in pediatric ECMO studies. Data sources: Embase, Medline, Web of Science, Cochrane Library and Google Scholar. Study selection: English original studies of pediatric ECMO patients describing hemostatic tests or outcome. Data extraction: Eligibility was assessed following PRISMA guidelines. Study population, outcome and ECMO-, coagulation, and transfusion parameters were summarized. Data synthesis: A total of 107 of 1312 records were included. Study population parameters most frequently included (gestational) age (79%), gender (60%), and (birth) weight (59%). Outcomes, including definitions of bleeding (29%), thrombosis (15%), and survival (43%), were described using various definitions. Description of pump type, oxygenator and cannulation mode occurred in 49%, 45%, and 36% of studies, respectively. The main coagulation test (53%), its reference ranges (49%), and frequency of testing (24%) were the most prevalent reported coagulation parameters. The transfusion thresholds for platelets, red blood cells, and fibrinogen were described in 27%, 18%, and 18% of studies, respectively. Conclusions: This systematic review demonstrates a widespread lack of detail or standardization of several parameters in coagulation research of pediatric ECMO patients. We suggest several parameters that might be included in future coagulation studies. We encourage the ECMO community to adopt and refine this list of parameters and to use standardized definitions in future research.

Behavioural emergencies in a paediatric hospital environment.

AIM: Aggression and high-risk behaviours triggered by children in paediatric hospitals are increasing globally. There is a paucity of research describing behavioural emergencies in paediatric acute care settings. METHODS: We conducted a 1-year retrospective study of behavioural emergencies that triggered an emergency response team attendance in a quaternary paediatric hospital. RESULTS: In 2018, 218 children triggered 1050 behavioural emergencies, which utilised 386 h of the emergency response team time. Thirty-three (15%) children triggered more than five activations each (range 6-272) and nearly half (16) were children with autism spectrum disorder or intellectual disability. More than 80% of children who triggered an emergency team response also had at least one psychiatric co-morbidity. CONCLUSIONS: Behavioural emergencies, by definition, put staff, children or their families at risk. They occur frequently in hospital with some children repeating these behaviours despite allocation of resources and expertise. New approaches to prevention and amelioration are needed.

Current and emerging technologies for the timely screening and diagnosis of neonatal jaundice.

Neonatal jaundice is one of the most common clinical conditions affecting newborns. For most newborns, jaundice is harmless, however, a proportion of newborns develops severe neonatal jaundice requiring therapeutic interventions, accentuating the need to have reliable and accurate screening tools for timely recognition across different health settings. The gold standard method in diagnosing jaundice involves a blood test and requires specialized hospital-based laboratory instruments. Despite technological advancements in point-of-care laboratory medicine, there is limited accessibility of the specialized devices and sample stability in geographically remote areas. Lack of suitable testing options leads to delays in timely diagnosis and treatment of clinically significant jaundice in developed and developing countries alike. There has been an ever-increasing need for a low-cost, simple to use screening technology to improve timely diagnosis and management of neonatal jaundice. Consequently, several point-of-care (POC) devices have been developed to address this concern. This paper aims to review the literature, focusing on emerging technologies in the screening and diagnosing of neonatal jaundice. We report on the challenges associated with the existing screening tools, followed by an overview of emerging sensors currently in pre-clinical development and the emerging POC devices in clinical trials to advance the screening of neonatal jaundice. The benefits offered by emerging POC devices include their ease of use, low cost, and the accessibility of rapid response test results. However, further clinical trials are required to overcome the current limitations of the emerging POC's before their implementation in clinical settings. Hence, the need for a simple to use, low-cost POC jaundice detection technology for newborns remains an unsolved challenge globally.

Platelet Phenotype and Function Changes With Increasing Duration of Extracorporeal Membrane Oxygenation.

OBJECTIVES: To investigate platelet pathophysiology associated with pediatric extracorporeal membrane oxygenation (ECMO). DESIGN: Prospective observational study of neonatal and pediatric ECMO patients from September 1, 2016, to December 31, 2019. SETTING: The PICU in a large tertiary referral pediatric ECMO center. PATIENTS: Eighty-seven neonates and children (< 18 yr) supported by ECMO. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Arterial blood samples were collected on days 1, 2, and 5 of ECMO and were analyzed by whole blood flow cytometry. Corresponding clinical data for each patient was also recorded. A total of 87 patients were recruited (median age, 65 d; interquartile range [IQR], 7 d to 4 yr). The median duration of ECMO was 5 days (IQR, 3-8 d) with a median length of stay in PICU and hospital of 18 days (IQR, 10-29 d) and 35 days (IQR, 19-75 d), respectively. Forty-two patients (48%) had at least one major bleed according to a priori determined definitions, and 12 patients (14%) had at least one thrombotic event during ECMO. Platelet fibrinogen receptor expression decreased (median fluorescence intensity [MFI], 29,256 vs 26,544; p = 0.0005), while von Willebrand Factor expression increased (MFI: 7,620 vs 8,829; p = 0.0459) from day 2 to day 5 of ECMO. Platelet response to agonist, Thrombin Receptor Activator Peptide 6, also decreased from day 2 to day 5 of ECMO, as measured by binding with anti-P-selectin, PAC-1 (binds activated GPIIb/IIIa), and anti-CD63 monoclonal antibodies (P-selectin area under the curve [AUC]: 63.46 vs 42.82, respectively, p = 0.0022; PAC-1 AUC: 93.75 vs 74.46, p = 0.0191; CD63 AUC: 55.69 vs 41.76, p = 0.0020). CONCLUSIONS: The loss of platelet response over time may contribute to bleeding during ECMO. These novel insights may be useful in understanding mechanisms of bleeding in pediatric ECMO and monitoring platelet markers clinically could allow for prediction or early detection of bleeding and thrombosis.

The influence of contextual factors on children's communication of pain during pediatric Haematopoietic Stem Cell Transplantation: A qualitative case study.

PURPOSE: The aim of this study was to describe how contextual factors related to the clinical setting of a pediatric HSCT unit influenced children's communication of pain to their health-care providers and parents during hospitalization. DESIGN AND METHODS: A qualitative case study design was conducted in two-phases in a tertiary level pediatric HSCT unit. The Social Communication Model of Pain provided the conceptual framework for the study. In phase one participants were parents and phase two participants were health-care providers and children in a pediatric HSCT unit. Parents participated in semi-structured interviews at 30- and 90-days post-transplantation regarding their child's communication of pain. Naturalistic observations of children receiving clinical care were conducted and health-care providers participated in semi-structured interviews. RESULTS: Children extensively denied pain to their parents and health-care providers. When children did communicate pain, they were motivated by a need to seek interventions for their pain. Children's willingness to communicate pain was influenced by the physiological impact of HSCT therapy, their previous experiences of pain, their relationship with parents and health-care providers and parents and an environment of fear and uncertainty. CONCLUSIONS: There is a pressing need for child-centric approaches to support children to communicate their pain experiences to overcome the limitations imposed by the complexity of their medical treatment and the clinical environment in which they receive healthcare. PRACTICE IMPLICATIONS: In the context of HSCT therapy children may not communicate pain until pain is severe, and no longer bearable, or outright deny the presence of pain.

Barriers and Facilitators to Seeking Sleep Solutions for Children With Cerebral Palsy: A Qualitative Study.

Background: Published evidence to date suggests that sleep problems are common in children with cerebral palsy (CP). This qualitative study is a follow up to a previously published quantitative phase on the experience and impact of sleep problems in this population. Aims: The aim of this study was to explore the experience and impact of sleep disturbance and seeking of sleep solutions for parents of school aged children with CP. Materials and Methods: Semi-structured 19 qualitative interviews were conducted with parents of children with CP aged 6-12 years. Interview data were transcribed verbatim and the thematic analysis techniques by Braun and Clarke was used to identify themes. Results: Thematic analysis identified 7 themes: (1) My Child Doesn't Fit into the Box, (2) A Mother's Ears are Always On, (3) Sleep Disturbance is like Water Torture, (4) Sleep is One of Many Spot Fires, I Put it on the Backburner, (5) Luck, Money or Jumping Up and Down, (6) There is Never One Silver Bullet and (7) Help: The Earlier the Better. The key finding was that parents of children with CP often described their child's needs being distinct from what is provided by systems and services. Conclusion: Parents face significant challenges sourcing effective sleep solutions for their child with CP. Sleep is often not a priority for either the parent or the clinician as other health problems take precedence. Parents reflected that early sleep intervention for their child was or would have been helpful. The barriers and facilitators to sleep care identified in this study should be used to inform clinical change in care for children with CP. Sleep needs to be prioritized in healthcare for children.

Experiences of Pain in Hospitalized Children During Hematopoietic Stem Cell Transplantation Therapy.

Children undergoing hematopoietic stem cell transplantation (HSCT) are vulnerable to pain due to the intensity and toxicity of this treatment. An instrumental case study design of two qualitative phases was conducted to examine the pain experiences of hospitalized children during HSCT therapy and how contextual factors related to the pediatric HSCT environment influenced their experience of pain. The Social Communication Model of Pain provided the conceptual framework for the study. In Phase 1, semi-structured interviews were conducted with parents of a child undergoing HSCT therapy at two time points. Phase 2 was conducted as a naturalistic observational study of the clinical care provided to children and semi-structured interviews with health-care providers. Children experienced complex and multifaceted pain with physical, psychological, and contextual contributors. Understanding the many factors contributing to the child's pain experience can inform strategies to improve the management of pain during HSCT therapy.