Lived Experiences of Adolescents Living With Primary Chronic Pain.

BACKGROUND: Primary chronic pain (PCP), a relatively new classification, characterizes pain that is not a secondary response to an underlying primary condition such as trauma or cancer. This study explored the lived experience of adolescents with a diagnosis of PCP. METHOD: A qualitative methodology, Interpretative Description (ID), was used to guide our study. ID uses a constructivist approach and allows for clinician experience to guide a theoretical scaffold of inquiry, which can be refined as the data collection progresses. We interviewed fifteen adolescents (n = 15) living with PCP. RESULTS: All participants in this sample reported struggling with diagnostic uncertainty, depression, and anxiety. Adding to their distress was the fact that our participants perceived that health care professionals did not believe them when they described their pain and its intensity. CONCLUSIONS: While significant research is being conducted on PCP, participants believe there is a lack of knowledge about PCP as a diagnosis and thus there are limited resources and a lack of empathy and understanding for these adolescents.

Time for Action: Understanding Health Care Professionals Views on Pain and Pain Management in a Pediatric Hospital.

BACKGROUND: Children admitted to the hospital experience pain. ChildKind International (CKI) is an organization dedicated to improving the quality of pediatric pain care worldwide. In 2019, BC Children hospital (BCCH) clinicians set out to achieve this certification. A qualitative study was performed in order to fully comprehend the current state of pain assessment and management at BCCH. AIM: The objective of this study is to characterize the perceptions of health care professionals (HCPs) about pediatric pain and pain management in a pediatric hospital. METHODS: We choose a quantitative methodology as it allows us to delve more deeply into the HCPs' personal experience with pain and pain management of children in the hospital. We interviewed 31 pediatric healthcare professionals (N = 31). RESULTS: HCPs believe there is a significant lack of resources, especially educational resources, to adequately assess and treat pain in children. There is a lack of time to evaluate each patient appropriately and use pain tools consistently for both verbal and non-verbal children. HCPs varied in their opinions as to whether a procedure is painful or uncomfortable, and this opinion often differs from the perception of the child. Additionally, staff recognize that cultural diversity of both staff and patients can influence pain assessment and management in children. Therefore, there is a need for increased cultural diversity training for staff. CONCLUSIONS: Pain management and treatment of children in the hospital remain inconsistent and inadequate. ChildKind certification will help hospitals to address this gap in their clinical practice.

Exploring Perceptions of Education for Central Venous Catheter Care at Home.

Pediatric oncology patients with an external central venous catheter (CVC) in situ can be discharged from the hospital. Caregivers are expected to learn how to care for the CVC prior to discharge while also dealing with their child's new cancer diagnosis. This study aimed to evaluate the perceptions of a CVC education program received by caregivers to identify opportunities for improvement. A qualitative study was conducted in 3 stages, using an evidence-based co-design approach, involving caregivers and one adolescent patient discharged from the British Columbia Children's Hospital Oncology/Hematology/BMT inpatient unit. Stage I involved semi-structured interviews to gain feedback on the existing CVC education program. In Stage II, educational resources were updated or developed and implemented. For Stage III, the revised CVC education program was evaluated through a focus group and semi-structured interviews. Interview transcripts were analyzed using QSR NVivo®. The original CVC education program was overall well received. Repeated instruction and support provided by nurses was reported to have increased confidence with performing CVC skills. Participants appreciated the multimodal approach to meet learning needs and expressed interest in additional visual aids. Inconsistencies in nurses' practice and offers of "tips and tricks" were identified to be challenging for caregivers while learning a new skill. Videos depicting CVC care were developed to provide an additional visual tool, decreased inconsistencies in care, and support to caregivers at home. Caring for a CVC at home is challenging and overwhelming for caregivers. A standardized multimodal education program is required to support caregivers at home.

Positive effects of ultrasound-guided peripheral IV insertion on pediatric sickle cell anemia/thalassemia patients receiving automated red cell exchange procedures or chronic transfusion therapy.

BACKGROUND: Peripheral vascular access and venipuncture are major causes of distress and anxiety for children and their parents. This is especially difficult for patients with hemoglobinopathies (thalassemia major and sickle cell disease) who require chronic blood transfusions. These patients require peripheral venous access for regular blood transfusions and (in the case of sickle cell disease) for automated red cell exchange procedures. Peripheral intravenous (PIV) catheters are much preferred to central venous lines as they carry far fewer risks. However, when patients experience multiple unsuccessful attempts to initiate a PIV, it can be traumatizing and cause anxiety for future visits. Establishing therapeutic trust and ensuring a smooth experience are of paramount importance for these chronic patients who require regular blood transfusions. AIM: The purpose of this study was to determine whether ultrasound-guided PIV insertion decreases PIV-associated pain and anxiety, and whether the number of attempts and amount of time spent accessing PIVs in children with difficult peripheral intravenous (DPIV) access is reduced. MATERIALS AND METHODS: This was a pilot study with both retrospective and prospective components. Hemoglobinopathies are relatively rare in our population and our study cohort was small (N = 18). RESULTS: We identified four DPIV access patients. We recorded each time these patients had a PIV inserted as an encounter. DISCUSSION/CONCLUSION: We found that while there was a small amount of time gained by using ultrasound-guided PIV insertion, patient and parent satisfaction was significantly improved.

Association between in-line filtration and Type I hypersensitivity reactions in pediatric oncology patients receiving intravenous etoposide.

The objective of this study was to describe hypersensitivity reactions with and without the use of in-line filters during intravenous etoposide therapy in pediatric oncology patients. This was a retrospective review of all patients treated in the Division of Oncology/Hematology/Bone Marrow Transplant at British Columbia Children's Hospital with intravenous etoposide between December 1, 2013 and February 1, 2018. Hypersensitivity reactions and anaphylaxis associated with etoposide infusions were compared over time, including 12 months prior to, 27 months during the use of, and for 12 months after the discontinuation of in-line filtration. There were 192 patients (median age 6.0 (IQR 2.8-13.0) years treated with etoposide and 486 etoposide infusions including 137 (28%) before, 261 (54%) during and 88 (18%) after use of in-line filters at our center. Twenty-six of 486 (5%) and 13/486 (3%) of infusions resulted in a type I hypersensitivity reaction and anaphylaxis, respectively. There were 2/137 (1%), 36/261 (14%) and 1/88 (1%) infusion reactions prior to, during and after in-line filter use, respectively. Infusion reactions during the in-line filter period were higher than during the pre-filter (Z = 3.978; p < 0.001) and post-filter (Z = 3.335; p < 0.001) periods of the study. These data suggest that the use of in-line filtration may be associated with increased frequency of hypersensitivity reactions to etoposide in pediatric cancer patients.

A critical ethnographic evaluation of pediatric haematology/oncology physicians and burn-out.

This qualitative study aims to ascertain what it is that affects pediatric hematology/oncology physicians professional and personal attitudes within their work environment. This research is based in one pediatric oncology unit in western Canada using a critical ethnographic research approach. Critical ethnography was the methodology used to conduct this study. Critical Ethnography (CE) is an interpretative research methodology that allows the researcher to evaluate the cultural aspects of a group, or an organization 'within their setting'; to understand and expose the meaning of the relationships in that environment; without meaning being imposed on them externally. 11 physicians (N = 11) participated in this study, this represents approximately 80% of the physician population in this unit. Semi-structured interviews were conducted which lasted an average of 36 minutes per interview. Physicians described their relationships with colleagues, patients and families as both rewarding but also producing symptoms of burn-out. The majority agreed that they enjoy their job because of the constantly evolving research and scientific updates in oncology research. There is a paradox of conflicting satisfiers and dissatisfiers mainly pertaining to patient, parent, physician relationships. Consideration to offering sabbatical leave should be assessed.

The Social Determinants of Nursing Retention in a Pediatric Hematology/Oncology Unit.

Pediatric hematology/oncology units (PHOUs) are highly paced, stressful environments and can be difficult areas to work. Thus, these units can present issues when it comes to both recruiting and retaining health care professionals (HCPs). There is scant research addressing how the environment of a PHOU contribute to a HCP's desire to stay or leave this environment. To conduct this project, a critical ethnographic approach was used. The researcher conducted semistructured interviews ( n = 29), which included nurses ( n = 21), physicians ( n = 4), and allied health care staff ( n = 4). This sample represented approximately one third of staff in each category. Participants identified that their ability to develop long-term relationships with children and families as a significant source of satisfaction. Belonging to the oncology team was seen as extraordinarily important to all the participants. The majority of the participants also felt that working in this ever-evolving dynamic medical field afforded them with ongoing learning opportunities. The main frustration described by participants pertained to administrative involvement in the everyday workings of the PHOU, potentially leading to attrition. It is important to note that there was also diversity among and between the categories of HCPs when describing the work environment and the issues that most influence them. While similarities among participants were found between satisfaction and dissatisfaction, significant differences between them led us to believe it would be unreasonable to attempt to compare the three groups here. Thus, in this article the author focused primarily on nursing while noting related observations from physicians and allied health professions.

Using colors to assess pain in toddlers: validation of "the rainbow pain scale"-a proof-of-principle study.

Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale (RPS) was developed to provide individualized self-reported pain ratings for preschool-aged children. The psychometric properties of this scale have yet to be evaluated. To ensure validity, our first step was to compare RPS scores to a well-validated scale in older children who were able to self-report their pain. The purpose of this study was to assess the concurrent validity of the RPS in children aged 5 to 10 years as proof of principle. We compared ratings of 49 children's pain using the RPS with those on the Faces Pain Scale-Revised (FPS-R). Participants suffering from pain related to cancer and cancer treatment were recruited to complete both scales at 3 time points, during both inpatient and outpatient clinic visits. Pearson's r and Cohen's κ were used to evaluate the level of association between the scales. The association between RPS and the FPS-R was greater than .7 at all 3 visits; r = .96 between the scales at the first clinic visit, .97 at the second visit, and .93 at the third visit. Cohen's κ between scales was 1.0 at the first clinic visit, .95 at the second visit, and .87 at the third visit. The RPS shows excellent concurrent validity with the FPS-R in school-aged children. The next step will be to examine the psychometric properties of the RPS in preschool-aged children.

Explaining why nurses remain in or leave bedside nursing: a critical ethnography.

AIM: To describe the application of critical ethnography to explain nurses' decisions to remain in or leave bedside nursing, and to describe researcher positioning and reflexivity. BACKGROUND: Enquiry into hospital nurses' decisions to remain in or leave bedside nursing positions has been conducted from a variety of theoretical perspectives by researchers adopting a range of methodological approaches. This research helps to explain how work environments can affect variables such as job satisfaction and turnover, but provides less insight into how personal and professional factors shape decisions to remain in or leave bedside nursing. REVIEW METHODS: A critical theoretical perspective was taken to examine the employment decisions made by nurses in a paediatric intensive care unit (PICU). DATA SOURCES: Data was collected from nurses (n=31) through semi-structured interviews and unobtrusive observation. DISCUSSION: The authors describe critical ethnography as a powerful research framework for enquiry that allowed them to challenge assumptions about why nurses remain in or leave their jobs, and to explore how issues of fairness and equity contribute to these decisions. CONCLUSION: Critical ethnography offers a powerful methodology for investigations into complex interactions, such as those between nurses in a PICU. In adopting this methodology, researchers should be sensitised to manifestations of power, attend to their stance and location, and reflexion. IMPLICATIONS FOR PRACTICE/RESEARCH: The greatest challenges from this research included how to make sense of the insider position, how to acknowledge assumptions and allow these to be challenged, and how to ensure that power relationships in the environment and in the research were attended to.

A critical ethnographic look at paediatric intensive care nurses and the determinants of nurses' job satisfaction.

The aim of this study is to examine key features within the cultural context in a Canadian Paediatric Intensive Care Unit (PICU) environment as experienced by nurses and to identify what these influences are and how they shape nurses' intentions to remain at critically ill children's bedsides for the duration of their careers. This is a qualitative study which follows a critical ethnographic approach. Over 20 hours of observation and face-to-face semi-structured interviews were conducted. Approximately one third of the nursing population at the research site PICU were interviewed (N=31). Participants describe a complex process of becoming an expert PICU nurse that involved several stages. By the time participants became experts in this PICU they believed they had significantly narrowed the power imbalance that exists between nursing and medicine. This study illuminates the role both formal and informal education plays in breaking the power barrier for nurses in the PICU. This level of expertise and mutual respect between professions aids in retaining nurses in the PICU. The lack of autonomy and/or respect shown to nurses by administrators appears to be one of the major stressors in nurses' working lives and can lead to attrition from the PICU. Family Centred Care (FCC) is practiced in paediatrics and certainly accentuated in the PICU as there is usually only one patient assigned per nurse, who thus afforded the time to provide comprehensive care to both the child and the family. This is considered one of the satisfiers for nurses in the PICU and tends to encourage retention of nurses in the PICU. However, FCC was found to be an inadequate term to truly encompass the type of holistic care provided by nurses in the PICU.