Chronic pain in children and young people with cerebral palsy: a narrative review of challenges, advances, and future directions.

BACKGROUND: Cerebral palsy (CP), the most common physical disability of childhood, is often accompanied by a range of comorbidities including pain. Pain is highly prevalent in children and young people with CP, yet has been poorly understood, inaccurately assessed, and inadequately managed in this vulnerable population. This narrative review presents recent research advances for understanding and managing pain in children and young people with CP, focusing on chronic pain, and highlights future research directions. MAIN BODY: Pain prevalence rates in CP vary due to different methodologies of studies. Recent systematic reviews report up to 85% of children experience pain; higher in older children, females, and those with dyskinesia and greater motor impairment. Research examining the lived experience perspectives of children and their families demonstrate that even those with mild motor impairments have pain, children want to self-report pain where possible to feel heard and believed, and management approaches should be individualized. Notably, many children with cognitive and communication impairments can self-report their pain if adjustments are provided and they are given a chance. Past inadequacies of pain assessment in CP relate to a focus on pain intensity and frequency with little focus on pain interference and coping, a lack of tools appropriate for the CP population, and an assumption that many children with cognitive and/or communication limitations are unable to self-report. Recent systematic reviews have identified the most reliable and valid assessment tools for assessing chronic pain. Many were not developed for people with CP and, in their current form, are not appropriate for the spectrum of physical, communication, and cognitive limitations seen. Recently, consensus and co-design in partnership with people with lived experience and clinicians have identified tools appropriate for use in CP considering the biopsychosocial framework. Modifications to tools are underway to ensure feasibility and applicability for the spectrum of abilities seen. CONCLUSION: Recent research advances have improved our understanding of the prevalence, characteristics and lived experience of chronic pain, and refined assessment methods in children and young people with CP. However, the very limited evidence for effective and novel management of chronic pain in this population is where research should now focus.

Pain coping tools for children and young adults with a neurodevelopmental disability: A systematic review of measurement properties.

AIM: To systematically identify and evaluate the measurement properties of patient-reported outcome measures (PROMs) and observer-reported outcome measures (parent proxy report) of pain coping tools that have been used with children and young adults (aged 0-24 years) with a neurodevelopmental disability. METHOD: A two-stage search using MEDLINE, Embase, CINAHL, Web of Science, and PsycInfo was conducted. Search 1 in August 2021 identified pain coping tools used in neurodevelopmental disability and search 2 in September 2021 located additional studies evaluating the measurement properties of these tools. Methodological quality was assessed using the COnsensus-based Standards for the Selection of Health Measurement INstruments (COSMIN) guidelines (PROSPERO protocol registration no. CRD42021273031). RESULTS: Sixteen studies identified seven pain coping tools, all PROMs and observer-reported outcome measures (parent proxy report) versions. The measurement properties of the seven tools were appraised in 44 studies. No tool had high-quality evidence for any measurement property or evidence for all nine measurement properties as outlined by COSMIN. Only one tool had content validity for individuals with neurodevelopmental disability: the Cerebral Palsy Quality of Life tool. INTERPRETATION: Pain coping assessment tools with self-report and parent proxy versions are available; however, measurement invariance has not been tested in young adults with a neurodevelopmental disability. This is an area for future research.

Goal setting, goal attainment and quality of life of children following selective dorsal rhizotomy.

AIM: The aim of this study is to describe the individualized occupational performance issues identified by parents/carers and children prior to selective dorsal rhizotomy (SDR) surgery and analyse change up to 2 years post surgery in goal attainment and quality of life (QoL). METHOD: The Australian SDR Research Registry (trial registration: ACTRN12618000985280) was used to extract data for individualized goals, goal attainment and QoL based on the Canadian Occupational Performance Measure (COPM) and the Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child parent-proxy) at baseline and 1 and 2 years following SDR. Change in mean scores was analysed using linear mixed models. RESULTS: Fifty-two children had COPM scores at baseline and 1 and/or 2 years post, of which 28 had two QoL scores. COPM problem areas included leisure (n = 39), productivity (n = 37) and self-care (n = 173). The most common goals were walking (26.1%), participation in physical activities (17.7%) and transitions (14.1%). Mean COPM scores improved significantly between baseline to 1 year and baseline to 2 years (P < 0.001). Mean QoL scores improved between baseline to 1 year for functional QoL domains: participation and physical health (P = 0.003) and pain and impact of disability (P = 0.011). CONCLUSIONS: Collaborative goal setting is an integral part of family-centred rehabilitation practice. The COPM was an appropriate individualized outcome measure in identifying meaningful goals for our SDR cohort. Results demonstrate improved scores in goal attainment and improvement in functional QoL domains. This paper highlights the need to include outcomes that measure daily life experiences.

Strategies Used to Teach Professional Boundaries Psychiatric Nursing Education.

Issues in understanding professional boundaries have been reported amongst student psychiatric nurses. Nursing students are at risk of crossing and violating professional boundaries as they are inexperienced in maintaining therapeutic relationships. Despite these challenges, there was a lack of literature regarding boundary instruction in psychiatric nursing education. Interpretative description was applied as method to answer: What strategies do psychiatric nurse educators utilize to teach professional boundaries to undergraduate students? Eleven educators and nine psychiatric nurses were interviewed. Data was analyzed using an inductive approach. Eight participants also attended a focus group to help refine analysis. Boundary instruction strategies included sharing stories, reflective activities, discussion in clinical settings, role modeling, and role play. Boundary instruction should be incorporated into psychiatric nursing curriculum in a deliberate manner to ensure students are exposed to the topic in meaningful ways throughout their academic career.

Chronic Pain in Young People With Cerebral Palsy: Activity Limitations and Coping Strategies.

PURPOSE: To describe the effect of chronic pain on the activities of children and adolescents with cerebral palsy, to describe coping strategies, and to examine associations between effect of pain on activities, coping strategies, and level of pain. METHODS: Using an online survey, 27, 8- to 18-year-olds with cerebral palsy and chronic pain or their parents reported pain intensity, distribution, activity limitations (using the Child Activity Limitations Interview-21), and coping strategies (using the Pediatric Pain Coping Inventory). RESULTS: Pain intensity ranged from 3 to 10, and 89% reported pain in multiple areas, principally the lower limbs. Individuals reporting higher pain intensity had more activity limitations and were more likely to use catastrophizing coping strategies. CONCLUSIONS: Coping strategies may be an important mediator between pain and its effect on activities in children with cerebral palsy. Individualized pain management should be based on routine pain assessment.

Treatment of suspected sepsis and septic shock in children with chronic disease seen in the pediatric emergency department.

BACKGROUND: Research demonstrates that timely recognition and treatment of sepsis can significantly improve pediatric patient outcomes, especially regarding time to intravenous fluid (IVF) and antibiotic administration. Further research suggests that underlying chronic disease in a septic pediatric patient puts them at higher risk for poor outcomes. OBJECTIVE: To compare treatment time for suspected sepsis and septic shock in pediatric patients with chronic disease versus those without chronic disease seen in the Pediatric Emergency Department (PED). METHODS: We reviewed patient data from a pediatric sepsis outcomes dataset collected at two tertiary care pediatric hospital sites from January 2017-December 2018. Patients were stratified into two groups: those with and without chronic disease, defined as any patient with at least one of eight chronic health conditions. INCLUSION CRITERIA: patients seen in the PED ultimately diagnosed with sepsis or septic shock, patient age 0 to 20 years and time zero for identification of sepsis in the PED. EXCLUSION CRITERIA: time zero unavailable, inability to determine time of first IVF or antibiotic administration or patient death within the PED. Primary analysis included comparison of time zero to first IVF and antibiotic administration between each group. RESULTS: 312 patients met inclusion criteria. 169 individuals had chronic disease and 143 did not. Median time to antibiotics in those with chronic disease was 41.9 min versus 43.0 min in patients without chronic disease (p = 0.181). Time to first IVF in those with chronic disease was 22.0 min versus 12.0 min in those without (p = 0.010). Those with an indwelling line/catheter (n = 40) received IVF slower than those without (n = 272), with no significant difference in time to antibiotic administration by indwelling catheter status (p = 0.063). There were no significant differences in the mode of identification of suspected sepsis or septic shock between those with versus without chronic disease (p = 0.27). CONCLUSIONS: Study findings suggest pediatric patients with chronic disease with suspected sepsis or septic shock in the PED have a slower time to IVF administration but equivocal use of sepsis recognition tools compared to patients without chronic disease.

Aquatic high intensity interval training to improve aerobic capacity is feasible in adolescents with cerebral palsy: pilot randomised controlled trial.

OBJECTIVE: To investigate feasibility of aquatic high intensity interval training for adolescents with cerebral palsy, who can ambulate independently but may choose a mobility aid in some circumstances. DESIGN: Pilot randomised controlled trial. METHOD: Following baseline assessments, participants were randomised to usual care or ten weeks of twice weekly aquatic high intensity interval training. Each class comprised 10 one-minute exercise intervals separated by one-minute rest. High intensity exercise was defined as the attainment of ⩾80% of peak heart rate measured by telemetry. SETTING: Tertiary paediatric hospital. MAIN MEASURES: Primary outcomes related to the feasibility of the protocol to progress to a definitive trial. Consumer feedback was obtained. RESULTS: Of 119 potential participants, 46 appeared eligible and 17 consented, resulting in a recruitment fraction of 37% (95% CI 23-52). Twelve completed baseline assessments and were randomised (5 males; 14 years 7 months SD 2 years 0 months). In the intervention group, of the 1190 exercise stations (across all participants and sessions), heart rate data were available for 1180 stations and high intensity exercise was achieved during 1111 stations (93%, 95% CI 92-95). All randomised participants completed the study and reported that the intervention was fun and provided friendship opportunities. There were no major adverse events or exacerbation of pain. CONCLUSIONS: Aquatic high intensity interval training in ambulant adolescents with cerebral palsy is feasible, while maintaining adherence and fidelity. Uncertainty remains on the efficacy of the intervention, highlighting the need for a large definitive trial.

The effect of aquatic high-intensity interval training on aerobic performance, strength and body composition in a non-athletic population: systematic review and meta-analysis.

OBJECTIVE:: In a non-athletic population, to (1) investigate the effectiveness of high-intensity interval training in an aquatic environment (A-HIIT) on aerobic performance, strength, and body composition and (2) report on safety of this approach. METHOD:: A systematic search was undertaken of six databases until May 2018. Trials were eligible for inclusion if they compared the effect of A-HIIT in a non-athletic population with a control group that received no exercise training. Data were extracted independently by two reviewers and meta-analyses were undertaken using a random effects model to produce standardized mean difference (SMD) and 95% confidence intervals (CIs). Risk of bias was assessed using Cochrane's risk of bias tool. All studies were graded using Physiotherapy Evidence Database (PEDro) and Consensus for Exercise Reporting Template (CERT) scales to determine quality of reporting. RESULTS:: Eight studies reported over 13 papers met study criteria ( n = 377). Compared with a control group, those who completed a program of A-HIIT demonstrated greater aerobic performance (SMD 0.69 (95% CI 0.39-0.98); I2 = 0%; n = 191) and lower limb muscle strength (SMD 0.30 (95% CI 0.04-0.56); I2 = 0%; n = 237). No differences were seen in measures of body composition or the number of adverse events. All studies were at risk of performance bias. The (mean ± SD) PEDro and CERT scores were 4.9 ± 1.5 and 15.1 ± 2.1, respectively. CONCLUSION:: In a non-athletic population, A-HIIT was safe and may have improved aerobic performance and lower limb strength. The exercise interventions were well described and monitoring and reporting of exercise intensity in water was feasible.

Need for tissue plasminogen activator for central venous catheter dysfunction is significantly associated with thrombosis in pediatric cancer patients.

BACKGROUND: Central venous catheter (CVC) dysfunction is a common complication among pediatric cancer patients. Tissue plasminogen activator (tPA) is administered to resolve CVC dysfunction. The present study was designed to determine risk factors associated with requirement of tPA for CVC dysfunction and to assess the clinical impact of CVC dysfunction in terms of CVC loss and venous thrombotic events (VTE). PROCEDURE: Case records of all pediatric patients with cancer from the Maritimes, Canada were reviewed following ethics approval. Data regarding demographics, clinical diagnosis, CVC dysfunction, characteristics of CVCs, and VTE were pooled from multiple data sources. RESULTS: Seven hundred and forty-one patients required ≥1 CVC. 26.3% of patients required tPA for ≥1 episodes of CVC dysfunction. Requirement of one or more doses of tPA for episodes of CVC dysfunction increased the odds of VTE by two times (95% confidence interval, 1.1-3.6). Patients that required ≥1 doses of tPA required significantly more CVCs (2.05 ± 1.29 per individual patient, 55% of the patients needed >1 CVCs) as compared to the remainder (1.52 ± 0.95 per individual patient, 32% needed >1 CVCs) (P = 0.0001). Multivariate analysis revealed age > 10 years, diagnosis of sarcoma, and tunneled line were independently associated with tPA requirement. CONCLUSION: We determined independent risk factors associated with requirement of tPA for CVC dysfunction. Requirement of tPA for CVC dysfunction was associated with significantly increased risk of VTE and requirement of more CVCs. These observations can assist in identification of patients at increased risk of CVC dysfunction and inform approaches to reduce CVC loss and VTE.

Peripherally Inserted Central Catheters in Pediatric Oncology Patients: A 15-Year Population-based Review From Maritimes, Canada.

The present population-based study evaluates the management and complications of peripherally inserted central catheters (PICC) in all pediatric oncology patients diagnosed in Maritimes, Canada from 2000 to 2014. A total of 107 PICCs were placed in 87 (10.1%) pediatric oncology patients. A high percentage (33% and 44%, respectively) of the first and second PICC lines was associated with complications. Thrombosis, occlusion, and infection were the most frequent complications. Age above 10 years and left body side of insertion were significantly associated with PICC complications. Given the frequent use of PICCs and the high incidence (>33%) of complications, there is a need to mitigate PICC line complications.

Interobserver reliability of the Australian Spasticity Assessment Scale (ASAS).

AIM: The aim of this paper is to present the Australian Spasticity Assessment Scale (ASAS) and to report studies of its interrater reliability. The ASAS identifies the presence of spasticity by confirming a velocity-dependent increased response to rapid passive movement and quantifies it using an ordinal scale. METHOD: The rationale and procedure for the ASAS is described. Twenty-two participants with spastic CP (16 males; age range 1y 11mo-15y 3mo) who had not had botulinum neurotoxin-A within 4 months, or bony or soft tissue surgery within 12 months, were recruited from the spasticity management clinic of a tertiary paediatric teaching hospital. Fourteen muscles in each child were assessed by each of three experienced independent raters. ASAS was recorded for all muscles. Interrater reliability was calculated using the weighted kappa statistic (quadratic weighting; κqw) for individual muscles, for upper limbs, for lower limbs, and between raters. RESULTS: The weighted kappa ranged between 0.75 and 0.92 for individual muscle groups and was 0.87 between raters. INTERPRETATION: The ASAS complies with the definition of spasticity and is clinically feasible in paediatric settings. Our estimates of interrater reliability for the ASAS exceed that of the most commonly used spasticity scoring systems.

Psychiatric nurse and educator perspectives on professional boundaries in nursing education: An interpretive description study.

BACKGROUND: Psychiatric nurses are responsible for maintaining professional boundaries. However, professional boundaries are as described as unclear and psychiatric nursing students are at risk of crossing these boundaries. Educational instruction regarding professional boundaries within psychiatric nursing often lacks foundational structure placing students at risk of transgressions. PURPOSE: The purpose of the study was to describe boundaries in psychiatric nursing practice, identify strategies effective in teaching professional boundaries, and inform curriculum development in psychiatric nursing education. METHOD: Interpretive description was utilized to answer: How do psychiatric nurse educators interpret and explain professional boundaries in psychiatric nursing undergraduate education? Psychiatric nurse educators and psychiatric nurses were recruited from an academic institution in western Canada. Twenty participants engaged in semi-structured interviews. Eight of those participants also attended a focus group. RESULT: Participants reported that 'textbook' definitions of boundaries were insufficient in illustrating the complexities of the construct. Rather, relational forms of learning such as educators sharing clinical stories, role play activities, clinical supervision, and clinical debriefing were described as helpful strategies. CONCLUSION: Foundational knowledge regarding professional boundaries in psychiatric nursing practice appears to be incorporated in the formal curriculum. However, learning is enhanced through the informal and hidden curriculum.

A Case Study of New Nurses' Transition from Education to Rural Practice in Times of Adversity.

The transition of new nurses from training to employment in rural practice can be difficult in the best of times. The COVID-19 pandemic amplified challenges in supporting new nurses transitioning from education to employment. Drawing together Benner's novice-to-expert model and the concept of human flourishing, this article reports on research that explored new nurses' experiences transitioning from training to employment in rural nursing during the initial years of the COVID-19 pandemic, using case study methodology combining an online recruitment survey and in-depth semi-structured interviews. Participants identified a lack of on-the-job training and mentorship, feeling unprepared for the acuity of patients and concerns about patient safety, feeling unprepared for leadership roles, feeling unsupported by management, feeling fatigued and anxious, and a lack of optimism about the future of rural health care. On the positive side, participants reported valuing social connections and teamwork, gratitude from patients, and a sense of community, as well as increasing competency at work. Their stories and self-rated flourishing revealed both strengths and challenges in transitioning to practice in rural settings during times of adversity. This research can inform theories of nursing development as well as policies and practices that support new nurses to thrive in rural contexts.

Measurement properties and feasibility of chronic pain assessment tools for use with children and young people with cerebral palsy.

PURPOSE: Chronic pain assessment tools exist for children, but may not be valid, reliable, and feasible for populations with functional, cognitive or communication limitations, for example, cerebral palsy (CP). This study aimed to (i) identify chronic pain assessment tools used with children and young people and rate their measurement properties; (ii) develop a CP specific feasibility rating tool to assess the feasibility of tools in CP; and (iii) categorise tools according to reporting method. MATERIALS AND METHODS: Assessment tools were identified by literature review. Their measurement properties were rated using the COnsensus based standards for the Selection of health Measurement INstruments. The CP specific Feasibility Rating Tool was developed and used to rate the tools. RESULTS: Fifty-seven chronic pain assessment tools were identified. Six have content validity for CP, four of these use proxy-report. Forty-two tools were considered feasible for people with CP; 24 self report and 18 observational/proxy-report. Only the Paediatric Pain Profile has content validity and feasibility for people with CP unable to self-report. CONCLUSIONS: There are few valid, reliable and feasible tools to assess chronic pain in CP. Further research is required to modify tools to enable people with cognitive limitations and/or complex communication to self-report pain.

Few of the existing chronic pain assessment tools are feasible or valid to use with all young people with cerebral palsy (CP).Modifications to self-report tools are needed to improve access for young people who have cognitive impairment or use alternative and augmentative communication.The pain assessment tool with the strongest feasibility and measurement properties for young people who cannot self-report is the Paediatric Pain Profile.Clinicians will need to consider a range of chronic pain assessment tools to assess the biopsychosocial domains important to young people with cerebral palsy.

New registered nurse and registered psychiatric nurse graduates' transition-to-practice amid the pandemic: An art-based grounded theory study.

BACKGROUND: According to the Transition Shock theory, new Registered Nurses face formidable obstacles within their first year of practice. However, little is known about the experience of new Registered Psychiatric Nurses entering the workforce. OBJECTIVES: The aim was to explore how new graduates from nursing and psychiatric nursing experience their transition into the workplace that included identifying mediating factors that assist or challenge these entry-level professionals within their transition. DESIGN: Constructivist grounded theory methodology developed by Charmaz was utilized to explore the first-year transition period using art-based methods. PARTICIPANTS AND SETTING: A total of 13 new graduates practicing as Registered Nurses and Registered Psychiatric Nurse in a western Canadian province were recruited to participate in the study. Three art-based workshops occurred at four, eight, and 12-months starting in the fall of 2020 through the Spring of 2021 during the novel coronavirus pandemic with subsequent member checks in the Spring of 2022. METHODS: A total of 38 interview and focus group data were collected. Art-based activities included sand tray and figurine object exercises, collaging, reflective and thematic writing, as well as group concept mapping. Through co-creation of knowledge using Charmaz's methodology, participants selected the major themes throughout their first year of transition with guided researcher facilitation. Data were analyzed using the constant comparative method of analysis for each workshop drawing on the art creations, discussion, and narrative reflective writing pieces generated by participants. RESULTS: Participants were in a basic psychosocial process of growing personal and professional self. Through co-construction of knowledge with the participants, three substantive interconnected categories were identified: (1) Being thrown into the fire; (2) Adjusting and adapting to the team environment; and (3) Nurturing self and others. CONCLUSIONS: The findings revealed many recommendations for employers hiring new graduates and nursing education programs preparing graduates for the practice arena.

Teaching Professional Boundaries in Psychiatric Nursing: Resource Development.

BACKGROUND: A standard of practice in psychiatric nursing pertains to the ability to maintain professional boundaries within a nurse-patient relationship. Nursing students are inexperienced in maintaining nurse-patient relationships and are at risk of crossing professional boundaries. Research regarding boundary instruction and available resources is needed to guide educators. METHOD: Psychiatric nurse educators (n = 11) and psychiatric nurses (n = 9) were interviewed to determine what resources psychiatric nursing educators use to teach professional boundaries to undergraduate students. Following the interviews and preliminary analysis, eight participants also attended a focus group. RESULTS: Participants reported resources such as textbooks were useful for defining professional boundaries. Participants also described case studies as a resource available to help operationalize boundaries in psychiatric nursing practice. CONCLUSION: Resources should be developed to address changes in care provision and technology to include cultural competence and guidelines for the use of social media. [J Nurs Educ. 2023;62(2):97-100.].

Effect of targeted movement interventions on pain and quality of life in children with dyskinetic cerebral palsy: a pilot single subject research design to test feasibility of parent-reported assessments.

PURPOSE: To determine the feasibility of using parent-reported outcome measures of the Paediatric Pain Profile (PPP), Sleep Disturbance Scale for Children (SDSC) and Care and Comfort Hypertonicity Questionnaire (CCHQ) as repeated outcome measures of change at weekly intervals for children with dyskinetic cerebral palsy (CP). The secondary aim was to explore the efficacy of individualised movement intervention. MATERIAL AND METHODS: In this pilot feasibility study a single subject research design was utilised. Three children with dyskinetic CP, completed 5 weeks of parent-reported baseline assessments, 8 weekly sessions of intervention and 5 weeks of follow up. RESULTS: All children completed 18 weeks of the study, with no missing data. There was evidence of parent-reported improvements in their child's pain and care and comfort between the baseline and intervention phases. CONCLUSIONS: The PPP, SDSC and CCHQ were feasible to assess pain, sleep and comfort before and after an intervention in children with dyskinetic CP. There is preliminary evidence that individualised movement intervention as little as once a week may help improve pain, sleep and improve ease of care and comfort. IMPLICATIONS FOR REHABILITATIONThe Paediatric Pain Profile is feasible to identify and monitor pain, as frequently as weekly, in children with dyskinetic cerebral palsy (CP).There is preliminary evidence that movement can decrease pain in children with dyskinetic CP.Assessments and treatment in this group may be interrupted due to their complex health issues which may be a limitation when collecting repeated measures.

In vivo determination of human breast fat composition by ¹H magnetic resonance spectroscopy at 7 T.

The role of diet and fat consumption in the pathogenesis of breast cancer is an important subject. We report a method for noninvasive determination of lipid composition in human breast by proton magnetic resonance spectroscopy (MRS) at 7 T. Two respiratory-triggered TE-averaged stimulated echo acquisition mode (STEAM) acquisitions were performed on the adipose tissue of 10 healthy volunteers where the second acquisition had all gradients inverted. This acquisition protocol allows the suppression of modulation sidebands that complicate spectral analysis at the short TE(avg) = 24.5 ms. The entire acquisition takes ∼10 min. Ten lipid peaks were typically resolved. T(1) and T(2) were also measured and used to correct the peak intensities. The calculated average lipid composition for saturated was 28.7 ± 8.4%, monounsaturated, 48.5 ± 7.9%, and polyunsaturated, 22.7 ± 3.1%, in close agreement with reported values from subcutaneous adipose measurements. Intrasubject variability was 2.0, 1.6, and 3.6% for the saturated, monounsaturated, and polyunsaturated fractions, respectively. In conclusion, we have shown that a chemical analysis of lipids in breast tissue can be determined quite simply, quickly, and noninvasively by proton MRS at 7 T.