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1.
  • Andersen, Randi Dovland, et al. (författare)
  • Pain burden in children with cerebral palsy (CPPain) survey : Study protocol
  • 2022
  • Ingår i: Paediatric and Neonatal Pain. - : John Wiley & Sons. - 2379-5824 .- 2637-3807. ; 4:1, s. 11-21
  • Tidskriftsartikel (refereegranskat)abstract
    • Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.
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  • Anand, Kanwlajeet J. S., et al. (författare)
  • Assessment of continuous pain in newborns admitted to NICUs in 18 European countries
  • 2017
  • Ingår i: Acta Paediatrica. - : John Wiley & Sons. - 0803-5253 .- 1651-2227. ; 106:8, s. 1248-1259
  • Tidskriftsartikel (refereegranskat)abstract
    • Aim: Continuous pain occurs routinely, even after invasive procedures, or inflammation and surgery, but clinical practices associated with assessments of continuous pain remain unknown.Methods: A prospective cohort study in 243 Neonatal Intensive Care Units (NICUs) from 18 European countries recorded frequency of pain assessments, use of mechanical ventilation, sedation, analgesia, or neuromuscular blockade for each neonate upto 28 days after NICU admission.Results: Only 2113/6648 (31·8%) of neonates received assessments of continuous pain, occurring variably among tracheal ventilation (TrV, 46·0%), noninvasive ventilation (NiV, 35·0%), and no ventilation (NoV, 20·1%) groups (p<0·001). Daily assessments for continuous pain occurred in only 10·4% of all neonates (TrV: 14·0%, NiV: 10·7%, NoV: 7·6%; p<0·001). More frequent assessments of continuous pain occurred in NICUs with pain guidelines, nursing champions, and surgical admissions prompted (all p<0·01), and for newborns <32 weeks gestational age, those requiring ventilation, or opioids, sedatives-hypnotics, general anesthetics (O-SH-GA) (all p<0·001), or surgery (p=0·028). Use of O-SH-GA drugs increased the odds for pain assessment in the TrV (OR:1·60, p<0·001) and NiV groups (OR:1·40, p<0·001).Conclusion: Assessments of continuous pain occurred in less than one-third of NICU admissions, and daily in only 10% of neonates. NICU clinical practices should consider including routine assessments of continuous pain in newborns.
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3.
  • Andersen Dovland, Randi, et al. (författare)
  • PEARL : Pain in early life. A new network for research and education
  • 2016
  • Ingår i: Scandinavian Journal of Pain. - : Elsevier. - 1877-8879.
  • Konferensbidrag (refereegranskat)abstract
    • Aims: To establish a network for research and education and to provide expert knowledge to parents and health care professionals about pain in early life.Methods: In November 2014 a group of Nordic researchers and research students, committed to the field of pain in early life, gathered for an open lecture day and workshop in Örebro, Sweden. Inspired by the work of the Canadian initiative PICH – Pain In Child Health, the network formulated it’s vision: To be a stabile and competent research and training network within the area of pain in early life. A first collaborate project was designed: “Translation, cultural adaptation and validation of the revised version of the Premature Infant Pain Profile (PIPP-R): An effort to improve pain assessment in infants in the Nordic countries”.Results: Fourteen months later, in January 2016, the second PEARL-meeting was held, in Oslo, Norway. The lecture day provided clinically active nurses and physicians from several countries with the latest findings on how to best manage pain in neonatal settings. The network which now consist of 18 researchers from different professions and academic levels presents itself on a five-language website: www.pearl.direct. The PIPP-R project has progressed according to the plan. The PIPP-R is translated into Finnish, Icelandic, Norwegian and Swedish. The cultural adaptation and validation should be finished in fall 2016. The members work on and plan for further collaborate projects. The next two steps are to translate and distribute educational material for parents via Internet and social media, and to establish a research and masters course about pain in early life. The work has been secured by funding from Örebro University and and Örebro University Hospital Research Foundation.Conclusions: PEARL fulfils the need for a collaborative network for pain in early life researchers in the Nordic countries.
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4.
  • Andersen, Randi Dovland (författare)
  • Do you see my pain? Aspects of pain assessment in hospitalized preverbal children
  • 2018
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Background and aim: Pain in hospitalized preverbal children is underassessed and undermanaged. According to the Social Communication Model of Pain, pain is both a personal experience and a social construction, influenced not only by the child in pain, but by the observer and the context. Nurses’ pain assessment is biased towards underestimation. The use of structured pain scales is strongly advocated, but pain scales have been difficult to implement into clinical practice. To improve clinical pain assessment and reduce unnecessary pain for hospitalized preverbal children, a better understanding of aspects concerning these scales is needed, and nurses’ views regarding clinical pain assessment and their understanding and practical use of structured pain scales need to be further explored. The overall aim of this thesis was to contribute to knowledge regarding how to reduce unnecessary pain and suffering in hospitalized preverbal children by exploring aspects that influence nurses’ assessment of pain in the clinical setting. Material and Methods: This PhD thesis consists of four different studies using both qualitative and quantitative methods. In study I the COMFORT behavioral scale was translated into Norwegian using the forward-back-translation method and culturally adapted in 12 cognitive interviews with clinicians who would later be using the scale in clinical practice. The translated scale’s responsiveness to change and inter-rater reliability were tested in study II, based on repeated measurements from 45 preverbal children before and after minor outpatient surgery. Study III was a systematic review appraising the evidence underlying the recommendations presented in 14 systematic reviews on the measurement properties of observational pain scales. Study IV was a semi-structured interview study with 22 nurses in Norway and Canada and examined their pain assessment practices based on self-selected clinical examples. Results: Cognitive interviews identified several problems with the content validity of the Norwegian and original versions of the COMFORT behavioral scale. The responsiveness of the translated version was supported for assessment of sedation, but not for assessment of pain/distress. Scale recommendations given in systematic reviews addressing the measurement properties of observational pain scales had low evidence value and should be interpreted with caution. Observational pain scales were infrequently used in clinical practice and pain scores were not considered pain–specific. Instead; nurses expressed strong preferences for pain assessment based on clinical judgment and individually tailored to the child and the situation. When assessing pain, nurses combined experience-based and child-specific knowledge with one or more specific strategies to interpret observations of and information from the child. Described strategies included identifying a probable cause for pain, eliminating other sources of distress, evaluating behavioral change and/or effect of interventions on behavior, using a personal and contextual approach, and using behavioral pain scores. Conclusions: A preverbal child’s pain will probably be better seen, evaluated and managed if nurses apply a systematic and comprehensive assessment approach that integrates clinical judgement and structured pain scales.
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5.
  • Andersen, Randi Dovland, et al. (författare)
  • Pain assessment practices in Swedish and Norwegian neonatal care units
  • 2018
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Blackwell Publishing. - 0283-9318 .- 1471-6712. ; 32:3, s. 1074-1082
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: The use of measurement scales to assess pain in neonates is considered a prerequisite for effective management of pain, but these scales are still underutilised in clinical practice.AIM: The aim of this study was to describe and compare pain assessment practices including the use of pain measurement scales in Norwegian and Swedish neonatal care units.METHODS: A unit survey investigating practices regarding pain assessment and the use of pain measurement scales was sent to all neonatal units in Sweden and Norway (n = 55). All Norwegian and 92% of Swedish units responded.RESULTS: A majority of the participating units (86.5%) assessed pain. Swedish units assessed and documented pain and used pain measurement scales more frequently than Norwegian units. The most frequently used scales were different versions of Astrid Lindgren's Pain Scale (ALPS) in Sweden and Echelle Douleur Inconfort Noveau-Ne (EDIN), ALPS and Premature Infant Pain Profile (PIPP) in Norway. Norwegian head nurses had more confidence in their pain assessment method and found the use of pain measurement scales more important than their Swedish colleagues.CONCLUSION: The persisting difference between Swedish and Norwegian units in pain assessment and the use of pain measurement scales are not easily explained. However, the reported increased availability and reported use of pain measurement scales in neonatal care units in both countries may be seen as a contribution towards better awareness and recognition of pain, better pain management and potentially less suffering for vulnerable neonates.
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8.
  • Axelin, Anna, et al. (författare)
  • Pain in early life (pearl) – a network for pain research and education
  • 2019
  • Konferensbidrag (refereegranskat)abstract
    • BackgroundSmall children are especially vulnerable to the deleterious effects of pain. High quality research is needed to protect young children from the negative effects of pain. Previously pediatric pain research in the Nordic region was severely limited; hampered by small samples and small-scale, time-consuming studies carried out by a few dedicated researchers. The similarities across the Nordic countries, concerning population composition, healthcare systems, and culture, made it reasonable to join forces for advances in child pain research and evidence-based practice. Methods In 2014, a group of Nordic researchers from the field of pain in early life gathered for a workshop in Örebro, Sweden. The participants knew each other from conferences or participation in common projects. Several were also collaborators, trainees, or alumni in the Canadian Pain in Child Health (PICH) network. The group decided to form a new network with the vision: To be a stable and competent research and training network within the area of pain in early life. The network was named PEARL – Pain in EARly Life. Three areas of work were defined: to provide parents with evidence-based information on pain relieving strategies, to provide healthcare professionals with evidence-based tools for the management of pain, and to perform collaborative research. Results Since then, PEARL has held yearly lecture days about pain in early life in Sweden, Norway, Finland and Denmark and thereby reached hundreds of clinicians. The meeting in Denmark was organized together with PICH as a PICH2Go-event with participants from 13 countries around the world. Four trainees have been awarded their PhD-degree, three members have become associate professors and two have become full professors. In all, 24 persons from the Nordic countries, Poland and Canada are members of PEARL. In the past 5 years, researchers from PEARL have published 94 papers about pain and stress (Fig 1). In a collaborative project, the pain assessment scale PIPP-R has been translated and culturally adapted for four Nordic languages. PEARL has established a website in six languages, with sections for parents, professionals and researchers: www.pearl.direct.Conclusion In five years, PEARL has had significant impact in pediatric pain research and attracted new collaborators and students. Moving forward, PEARL will focus on increasing its collaboration with other research groups. We will also make an effort to strengthen and develop parent partnerships and collaboration to ensure the best research and care possible for vulnerable small children. 
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9.
  • Carbajal, Ricardo, et al. (författare)
  • Pain Assessment in Ventilated and Non-Ventilated Neonates in NICUs across Europe : EUROpean Pain Audit in Neonates (EUROPAIN Survey)
  • 2014
  • Konferensbidrag (refereegranskat)abstract
    • Background: Neonates undergo many painful procedures during their NICU stay. These may include tracheal intubation/ventilation, skin-breaking procedures, drainage/suctioning of body orifices or cavities. Inherent subjectivity and difficulties of neonatal pain assessment contribute to a wide variety of assessment tools and clinical practices. To date, these practices have been not studied at a large scale. OBJECTIVE: To determine current clinical practices for neonatal pain assessment in NICUs across Europe. DESIGN/METHODS: An epidemiological observational study on bedside pain assessment practices collected data for all neonates in participating NICUs until infants left the unit (discharge, death, transfer to another hospital) or for 28 days. Data collection occurred via an online database for 1 month at each NICU. All neonates up to a gestational age of 44 weeks were included. RESULTS: From October 2012 to June 2013, 243 NICUs from 18 European countries collected pain assessment data in 6680 neonates. Of these, 2142 received tracheal ventilation (ventilated) and 4538 had spontaneous breathing or non- invasive ventilation (non-ventilated). The median (IQR) gestational age of ventilated neonates [32.1 (28.1-37.4)] was less than non-ventilated neonates [36.6 (33.6-39.1), p<0.001]. Overall, 58.5% of ventilated neonates and 35.2%% of non-ventilated neonates received bedside pain assessments (p<0.001). CONCLUSIONS: Over half (58.5%) of ventilated neonates and about one third (35.2%) of non-ventilated neonates had pain assessments performed in European NICUs. Wide variations in the methods used and rates of pain assessment exist among countries 
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10.
  • Carbajal, Ricardo, et al. (författare)
  • Pain Assessment in Ventilated and Non-Ventilated Neonates in NICUS across Europe : Results from the EUROPAIN Study
  • 2016
  • Konferensbidrag (refereegranskat)abstract
    • Aim of Investigation: Pain from invasive or noninvasive procedures, mechanical ventilation, or painful medical and surgical conditions is commonplace in neonatal intensive care units (NICUs). While prevention and treatment of neonatal pain seem essential, an adequate analgesic approach cannot be implemented without relevant and timely pain assessments. Data on neonatal pain assessment practices are scarce, with undefined best practices or clinical benefits. We aimed to describe pain assessment practices in 243 NICUs from 18 European countries and to examine the NICU and patient characteristics influencing pain assessments at the bedside.Methods: Demographic data, modes of respiration, use of sedation, analgesia, or neuromuscular blockers, frequency and types of pain assessments were recorded for all newborns during the first 28 days of NICU admission. Multivariable models tested the associations between the performance of pain assessments and center and neonatal factors.Results: Among 6648 neonates enrolled, highest level of ventilation during the study period classified patients into tracheal ventilation (TV, n=2138 [32%]), non-invasive ventilation (NIV, n=1493 [23%]), and spontaneous ventilation groups (SV, n=3017 [45%]). Pain assessments were performed in 1250 (58%), 672 (45%), and 916 (30%) of these groups respectively (p<0.001). Using data from 78,742 patient-days, we found that 2,838 (43%) neonates received 4.3 (5.2) pain assessments per neonate and per day (median (IQR): 2.4 (1-5)), whereas 3810 (57%) neonates did not receive any pain assessments. Pain assessments occurred on every day of the NICU stay in 461/2138 (22%) TV patients, 236/1493 (16%) NIV patients, and 393/3016 (13%) SV patients (p<0.001).Many different pain assessment methods were used; the EDIN scale was used most frequently (42.3% among those who had at least one pain assessment). We analysed 33,625 patient-days in the TV group to test for associations between pain assessment and the use of opioids, sedatives-hypnotics, or general anaesthetics (O-SH-GA). The rates of pain assessments on patient-days with and without O-SH-GA use were, respectively, 57% vs. 43% while receiving mechanical ventilation, and 60% vs. 34% while not receiving mechanical ventilation (both p<0.001). Multivariable analyses showed that NICU-based guidelines, nursing leadership, and increased surgical admissions promoted the use of routine pain assessments (p<0.001). More pain assessments were performed in newborns below 32-weeks gestational age, those with decreased severity of illness, those already intubated at admission, those requiring mechanical or non-invasive ventilation, or surgery, or use of O-SH-GA.Conclusion: Even though pain is considered the 5th vital sign, only 43% of NICU neonates received bedside pain assessments. Clinical practice variability and low rates of pain assessments in NICUS may reflect weaknesses in the current paradigm used for neonatal pain assessments, their subjectivity, lack of inter-rater reliability, and other long-standing concerns. Results suggest that training to improve the rate of pain assessment in NICUs will enhance pain management in NICUs.Trial Registration: ClinicalTrials.gov #NCT01694745 
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11.
  • Carbajal, Ricardo, et al. (författare)
  • Pain Assessment In Ventilated And Non-ventilated Neonates In Nicus Across Europe : European Pain Audit In Neonates (europain Survey)
  • 2014
  • Ingår i: Archives of Disease in Childhood. - London, United Kingdom : BMJ Publishing Group Ltd. - 0003-9888 .- 1468-2044. ; 99, s. A68-A68
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Neonates undergo many painful procedures during their NICU stay. These may include tracheal intubation/ventilation, skin-breaking procedures, drainage/suctioning of body orifices or cavities. Inherent subjectivity and difficulties of neonatal pain assessment contribute to a wide variety of assessment tools and clinical practices. To date, these practices have been not studied at a large scale.Objective: To determine current clinical practices for neonatal pain assessment in NICUs across Europe.Methods: An epidemiological observational study on bedside pain assessment practices collected data for all neonates in participating NICUs until infants left the unit (discharge, death, transfer to another hospital) or for 28 days. Data collection occurred via an online database for 1 month at each NICU. All neonates up to a gestational age of 44 weeks were included.Results: From October 2012 to June 2013, 243 NICUs from 18 European countries collected pain assessment data in 6680 neonates. Of these, 2142 received tracheal ventilation (TV), 1496 non-invasive ventilation (NIV) and 3042 only spontaneous ventilation (SV). The median (IQR) gestational age of TV, NIV and SV neonates were 32.1 (28.1–37.4), 33.6 (31.0–36.6) and 37.9 (35.0–39.9), respectively (p < 0.001). Overall, 58.5% of TV neonates, 45.0% of NIV neonates and 30.4% of SV neonates received bedside pain assessments (p < 0.001). Fig. shows pain assessments by country.Conclusions: Over half (58.5%) of TV neonates and less than half (45.0%) of NIV neonates had pain assessments performed in European NICUs. Wide variations in the rates of pain assessment exist among countries and an important improvement seems necessary.
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12.
  • Carbajal, Ricardo, et al. (författare)
  • Sedation And Analgesia For Neonates In Nicus Across Europe : The Europain Survey
  • 2014
  • Ingår i: Archives of Disease in Childhood. - London, United Kingdom : BMJ Publishing Group Ltd. - 0003-9888 .- 1468-2044. ; 99, s. A64-A64
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Pain and stress induced by mechanical ventilation, invasive procedures, or painful diseases supports the use of sedation/analgesia (S/A) in newborns admitted to Neonatal Intensive Care Units (NICUs). To date, these practices have not been studied at a large scale.Objective: To determine current clinical practices regarding the use of S/A drugs in NICUs across Europe.Methods: This epidemiological observational study on bedside clinical practices regarding S/A collected data for all neonates in participating NICUs until the infant left the unit (discharge, death, transfer) or for up to 28 days. Data collection occurred via an online database for 1 month at each NICU. All neonates up to 44 weeks gestation were included.Results: From October 2012 to June 2013, 243 NICUs from 18 European countries collected data on 6680 eligible neonates. Of these, 2142 received tracheal ventilation (TV), 1496 non-invasive ventilation (NIV) and 3042 only spontaneous ventilation (SV). The median (IQR) gestational age of TV, NIV and SV neonates were 32.1 (28.1–37.4), 33.6 (31.0–36.6) and 37.9 (35.0–39.9), respectively (p < 0.001). Overall, more TV neonates [81.5% (n = 1746)] received S/A drugs than NIV neonates [17.8% (n = 266)] and SV neonates [9.3% (n = 282)]; p < 0.001. Fig. shows the rate of S/A use by country; table shows S/A drugs used.Conclusions: Most ventilated but few non-ventilated neonates (NIV and SV) receive S/A therapy in European NICUs. Wide variations in S/A use, drugs used, and mode of administration (continuous, bolus, or both) exist among countries.
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13.
  • Carbajal, Ricardo, et al. (författare)
  • Sedation and analgesia practices in neonatal intensive care units (EUROPAIN) : results from a prospective cohort study
  • 2015
  • Ingår i: The Lancet Respiratory Medicine. - : Elsevier. - 2213-2600 .- 2213-2619. ; 3:10, s. 796-812
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Neonates who are in pain or are stressed during care in the intensive care unit (ICU) are often given sedation or analgesia. We investigated the current use of sedation or analgesia in neonatal ICUs (NICUs) in European countries.                                         Methods: EUROPAIN (EUROpean Pain Audit In Neonates) was a prospective cohort study of the management of sedation and analgesia in patients in NICUs. All neonates admitted to NICUs during 1 month were included in this study. Data on demographics, methods of respiration, use of continuous or intermittent sedation, analgesia, or neuromuscular blockers, pain assessments, and drug withdrawal syndromes were gathered during the first 28 days of admission to NICUs. Multivariable linear regression models and propensity scores were used to assess the association between duration of tracheal ventilation (TV) and exposure to opioids, sedatives-hypnotics, or general anaesthetics in neonates (O-SH-GA). This study is registered with ClinicalTrials.gov, number NCT01694745.                                         Findings: From Oct 1, 2012, to June 30, 2013, 6680 neonates were enrolled in 243 NICUs in 18 European countries. Mean gestational age of these neonates was 35∙0 weeks (SD 4∙6) and birthweight was 2384 g (1007). 2142 (32%) neonates were given TV, 1496 (22%) non-invasive ventilation (NIV), and 3042 (46%) were kept on spontaneous ventilation (SV). 1746 (82%), 266 (18%), and 282 (9%) neonates in the TV, NIV, and SV groups, respectively, were given sedation or analgesia as a continuous infusion, intermittent doses, or both (p<0∙0001). In the participating NICUs, the median use of sedation or analgesia was 89∙3% (70∙0–100) for neonates in the TV group. Opioids were given to 1764 (26%) of 6680 neonates and to 1589 (74%) of 2142 neonates in the TV group. Midazolam was given to 576 (9%) of 6680 neonates and 536 (25%) neonates of 2142 neonates in the TV group. 542 (25%) neonates in the TV group were given neuromuscular blockers, which were administered as continuous infusions to 146 (7%) of these neonates. Pain assessments were recorded in 1250 (58%) of 2138, 672 (45%) of 1493, and 916 (30%) of 3017 neonates in the TV, NIV, and SV groups, respectively (p<0∙0001). In the univariate analysis, neonates given O-SH-GA in the TV group needed a longer duration of TV than did those who were not given O-SH-GA (mean 136∙2 h [SD 173∙1] vs 39∙8 h [94∙7] h; p<0∙0001). Multivariable and propensity score analyses confirmed this association (p<0∙0001).                        Interpretation: Wide variations in sedation and analgesia practices occur between NICUs and countries. Widespread use of O-SH-GA in intubated neonates might prolong their need for mechanical ventilation, but further research is needed to investigate the therapeutic and adverse effects of O-SH-GA in neonates, and to develop new and safe approaches for sedation and analgesia. 
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14.
  • Carlsen Misic, Martina, 1986-, et al. (författare)
  • Balancing power by including parents as co-researchers : Live parental singing, breastfeeding, skin-to-skin-contact as procedural support in Swedish neonatal pain care
  • 2022
  • Konferensbidrag (refereegranskat)abstract
    • Frequent and inadequately treated pain combined with separation from the parent cause adverse interruptions to the parent-infant attachment process. The pain might harm the infant physically and psychologically including increasing the risk for abnormally heightened sensitivity to pain. Effective pain management strategies are needed and parent-delivered interventions such as infant-directed lullaby singing, breastfeeding and skin-to-skin contact where parents themselves mediate pain relief, is consistent with a modern understanding of pain and of family-integrated care. Important for translating research into practice is to involve healthcare professionals and parents as co-researchers. Neonatal pain research is an interdisciplinary field where music therapy has just started to publish results. The Nordic neonatal music therapy pain management strategy provides a theoretical and practical resource-oriented music therapy model of how parent-delivered infant-directed singing can be comprehensively used in interdisciplinary neonatal pain research. Parents as pain management in Swedish neonatal care (SWEpap), is a new cutting-edge interdisciplinary multi-centre clinical study with mixed methods. The collaborative participatory action research design for the qualitative part of the SWEpap study aims to democratise the research process involving both parents and health professionals in the knowledge-making. The second part of SWEpap is a randomised controlled trial informed by music therapy expertise and research using the Nordic neonatal music therapy pain management strategy as a theoretical framework for its design. The RCT will investigate the efficacy of combined pain management with live parental lullaby singing, breastfeeding and skin-to-skin contact compared with standard pain care during routine metabolic screening of newborn infants.
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  • Carlsen Misic, Martina, 1986-, et al. (författare)
  • Nurses' perception, knowledge, and use of neonatal pain assessment
  • 2021
  • Ingår i: Paediatric and Neonatal Pain. - : John Wiley & Sons. - 2379-5824 .- 2637-3807. ; 3:2, s. 68-74
  • Tidskriftsartikel (refereegranskat)abstract
    • Preterm and sick newborn infants undergo several painful procedures during their hospital stay, potentially leading to short‐ and long‐term negative consequences. Pain assessment should be performed regularly to provide optimal pain management. Nurses' knowledge of and attitude toward neonatal pain assessment affect how pain is assessed and managed in the clinical situation. The aim of this study was to explore Swedish nurses' perception, knowledge, and use of neonatal pain assessment. This descriptive, cross‐sectional questionnaire study was conducted across all Swedish neonatal units (n = 38). Respondents were chosen through convenience sampling by the head nurses at each unit. Ten nurses from each unit were asked to complete the survey, which contained both closed and open questions. A majority of the units (30/38; 79%) participated and 232 surveys were returned, a response rate of 61%. Of the nurses, 91% thought that neonatal pain assessment was important. Many nurses mentioned various difficulties with pain assessment and concerns that the scales used might not assess pain correctly. About half of the nurses considered themselves to have enough knowledge of neonatal pain assessment. Those who reported having enough knowledge of pain assessment viewed the pain scales used at their units more positively. Of the nurses, 74% reported using a pain assessment scale several times per work shift. Pain management guidelines were available according to 75% of nurses, but only 53% reported that the guidelines were followed. Although nurses in general expressed a positive attitude toward pain assessment scales, this was not necessarily evident in their clinical practice. Lack of knowledge, available or accessible guidelines, or concerns regarding the validity of available pain scales seemed to limit their use.
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  • Carlsen Misic, Martina, 1986-, et al. (författare)
  • Parent-delivered pain-relieving interventions in Swedish neonatal care, a mixed methods study
  • 2022
  • Konferensbidrag (refereegranskat)abstract
    • Background: For improving the management of infant pain and translating research into practice, parents’ active involvement during painful procedures is considered a critical first step. Research into parents’ motivations for and experiences of alleviating infant pain, is scarce. More research on combined parent-delivered pain alleviation including relationship-based interventions such as the parent’s musical presence is needed to advance infant pain care.Aim: Parents as pain management in Swedish neonatal care (SWEpap), is a new cutting-edge interdisciplinary multi-center clinical study. Using a mixed methods approach, SWEpap investigates parent-delivered interventions such as infant-directed lullaby singing, breastfeeding and skin-to-skin contact where parents themselves mediate pain relief. This approach is consistent with a modern understanding of pain and of family-integrated care.Material and method: The qualitative part of the SWEpap study applies collaborative participatory action research design, video observations and interviews to investigate health care professionals’ and parents’ motivational factors in and experiences of parent- delivered pain alleviation. The second part is a randomized controlled trial. The RCT will investigate the efficacy of combined pain management with live parental lullaby singing, breastfeeding and skin-to-skin contact compared with standard pain care during routine blood sampling of newborn infants. The enrollment has started and is expected to be completed during 2023.Results: Preliminary results acknowledge the need for parents to be educated and prepared about the effectiveness of the parent-delivered methods and how to apply them prior to the procedure. In addition, when preparing for the actual procedure, both parents and health care professionals emphasize the importance of allowing the parents sufficient time to cope with the situation and the dyad to relax before the skin puncture.Conclusion: Video observations and interviews with parents and health care professionals indicate that parent- delivered interventions such as infant-directed lullaby singing, breastfeeding and skin-to-skin contact are feasible pain treatment methods during painful procedures.
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17.
  • Dovland Andersen, Randi, et al. (författare)
  • The Evidence Supporting the Association Between the Use of Pain Scales and Outcomes in Hospitalized Children : a Systematic Review
  • 2021
  • Ingår i: International Journal of Nursing Studies. - : Elsevier. - 0020-7489 .- 1873-491X. ; 115
  • Forskningsöversikt (refereegranskat)abstract
    • Background: Systematic use of pain intensity scales is considered a prerequisite for treatment of pain in hospitalized children, but already a decade ago, attention was called to the lack of robust evidence supporting the presumed positive association between their use and desired outcomes.Objectives: To re-evaluate the evidence supporting the association between the use of pain scales and patient and process outcomes in hospitalized children.Design: Systematic literature review.Data sourcesThe online databases PubMed and Cumulative Index of Nursing and Allied Health Literature (CINAHL) were searched from inception to April 15, 2020.Review methods: We performed single screening of all records followed by duplicate screening of full texts of interest with a disagreement procedure in place. Studies where the authors evaluated outcomes from the use of self-report or behavioral-based pain scales in children 0-18 years in a hospital setting were included. Emergency care settings were excluded.Results: In a majority of the 32 included studies, complex interventions that included one or more pain scales were evaluated. Process outcomes (e.g., documentation) were most frequently studied. Interventions were commonly associated with improved documentation of pain assessment, while the effect on pain management documentation was inconsistent. However, improvements in process outcomes did not necessarily result in better patient outcomes. In regard to patient outcomes (e.g., pain intensity, side effects, or satisfaction with treatment), some authors reported reduced pain intensity on group level, but the effect on other functional outcomes, child and parent satisfaction, and aspects of safety were inconsistent. Methodological issues, e.g., weak study designs and small samples, biased the results, and it was not possible to determine how pain scales contributed to the overall effects since they were studied as part of complex interventions.Conclusions: Although both a theoretically founded understanding of pain and clinical experience suggest that the use of pain scales will make a difference for hospitalized children with pain, there is still limited evidence to support this notion.As pain scales have been almost exclusively studied as an aspect of complex interventions, research that determines the active ingredient(s) in a complex intervention and their joint and individual effects on outcomes that are meaningful for the child (for example reduced pain intensity or improved function) are urgently needed.
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18.
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19.
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20.
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21.
  • Olsson, Emma, 1980-, et al. (författare)
  • Cultural adaptation and harmonization of four Nordic translations of the revised Premature Infant Pain Profile (PIPP-R)
  • 2018
  • Ingår i: BMC Pediatrics. - : BioMed Central. - 1471-2431. ; 18
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Preterm infants are especially vulnerable to pain. The intensive treatment often necessary for their survival unfortunately includes many painful interventions and procedures. Untreated pain can lead to both short- and long-term negative effects. The challenge of accurately detecting pain has been cited as a major reason for lack of pain management in these non-verbal patients. The Premature Infant Pain Profile (PIPP) is one of the most extensively validated measures for assessing procedural pain in premature infants. A revised version, PIPP-R, was recently published and is reported to be more user-friendly and precise than the original version. The aims of the study were to develop translated versions of the PIPP-R in Finnish, Icelandic, Norwegian, and Swedish languages, and to establish their content validity through a cultural adaptation process using cognitive interviews.Methods: PIPP-R was translated using the recommendations from the International Society for Pharmacoeconomics and Outcomes Research and enhanced with cognitive interviews. The respondent nurse was given a copy of the translated, national version of the measure and used this together with a text describing the infant in the film to assess the pain of an infant in a short film. During the assessment the nurse was asked to verbalize her thought process (thinking aloud) and upon completion the interviewer administered probing questions (verbal probing) from a structured interview guide. The interviews were recorded, transcribed, and analyzed using a structured matrix approach.Results: The systematic approach resulted in translated and culturally adapted versions of PIPP-R in the Finnish, Icelandic, Norwegian and Swedish languages. During the cultural adaptation process several problems were discovered regarding how the respondent understood and utilized the measure. The problems were either measure problems or other problems. Measure problems were solved by a change in the translated versions of the measure, while for other problems different solutions such as education or training were suggested.Conclusions: This study have resulted in translations of the PIPP-R that have content validity, high degree of clinical utility and displayed beginning equivalence with each other and the original version of the measure.
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22.
  • Olsson, Emma, 1980-, et al. (författare)
  • Skin-to-skin care in neonatal intensive care units in the Nordic countries : a survey of attitudes and practices
  • 2012
  • Ingår i: Acta Paediatrica. - Hoboken, USA : Wiley-Blackwell. - 0803-5253 .- 1651-2227. ; 101:10, s. 1140-1146
  • Tidskriftsartikel (refereegranskat)abstract
    • Aim: To investigate the application of skin-to-skin care (SSC) in the Nordic countries, the existence of guidelines for SSC and the attitudes of neonatal staff towards SSC.Methods: One questionnaire was distributed at unit level and one at staff level in all Nordic neonatal intensive care units (n = 109).Results: The unit questionnaire was answered by 95 (87%) units and the staff questionnaire by 1446 staff members (72%). All units offered SSC to various degrees, but guidelines only existed at 47% of them. Units in Denmark, Norway and Sweden seemed to use SSC earlier, longer and in more medically complicated situations than units in Finland and Iceland. Seventy-seven per cent of the units had private rooms where parents and infants could stay together, still the physical environment of the units limited the use of SSC. Medical risks were considered the main barrier for further implementation of SSC, while general development and early interaction were the most frequently mentioned benefits.Conclusion: Skin-to-skin care is implemented in all Nordic neonatal units, but offered to various degrees, to various populations and to varying extents. Danish, Norwegian and Swedish units are offering SSC more extensively than units in Finland and Iceland.
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23.
  • Olsson, Emma, 1980-, et al. (författare)
  • Study protocol : parents as pain management in Swedish neonatal care - SWEpap, a multi-center randomized controlled trial.
  • 2020
  • Ingår i: BMC Pediatrics. - : Springer Science and Business Media LLC. - 1471-2431. ; 20:1
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: During the first period of life, critically ill as well as healthy newborn infants experience recurrent painful procedures. Parents are a valuable but often overlooked resource in procedural pain management in newborns. Interventions to improve parents' knowledge and involvement in infants' pain management are essential to implement in the care of the newborn infant. Neonatal pain research has studied a range of non-pharmacological pain alleviating strategies during painful procedures, yet, regarding combined multisensorial parent-driven non-pharmacological pain management, research is still lacking.METHODS/DESIGN: A multi-center randomized controlled trial (RCT) with three parallel groups with the allocation ratio 1:1:1 is planned. The RCT "Parents as pain management in Swedish neonatal care - SWEpap", will investigate the efficacy of combined pain management with skin-to-skin contact, breastfeeding and live parental lullaby singing compared with standard pain care initiated by health care professionals, during routine metabolic screening of newborn infants (PKU-test).DISCUSSION: Parental involvement in neonatal pain management enables a range of comforting parental interventions such as skin-to-skin contact, breastfeeding, rocking and soothing vocalizations. To date, few studies have been published examining the efficacy of combined multisensorial parent-driven interventions. So far, research shows that the use of combined parent-driven pain management such as skin-to-skin contact and breastfeeding, is more effective in reducing behavioral responses to pain in infants, than using the pain-relieving interventions alone. Combined parental soothing behaviors that provide rhythmic (holding/rocking/vocalizing) or orogustatory/orotactile (feeding/pacifying) stimulation that keep the parent close to the infant, are more effective in a painful context. In the SWEpap study we also include parental live lullaby singing, which is an unexplored but promising biopsychosocial, multimodal and multisensory pain alleviating adjuvant, especially in combination with skin-to-skin contact and breastfeeding.TRIAL REGISTRATION: ClinicalTrials.gov ( NCT04341194 ) 10 April 2020.
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24.
  • Olsson, Emma, 1980-, et al. (författare)
  • Translation, cultural adaptation and validation of the revised version of the Premature Infant Pain Profile : An effort to improve pain assessment in infants in the Nordic countries
  • 2015
  • Konferensbidrag (refereegranskat)abstract
    • Background: In order to effectively treat pain in the neonatal period and diminish its negative effects, pain must be recognized and properly assessed.                                       Objective: a) Translate the revised version of Premature Infant Pain Profile (PIPP-R) (1, 2) scale into Finnish, Icelandic, Norwegian and Swedish languages. b) Test the content validity of each of the translated versions.                                                                          Design: a) translation and cultural adaption following the ISPOR recommendations (3) and b) testing of content validity using cognitive interviews.                                                  Setting: Finland, Iceland, Norway and Sweden, with cognitive debriefing and interviews at selected neonatal units (NU).                                                                                 Participants: In each country 5-10 nurses working in the NU will be included through purposeful sampling.                                                                                       Procedures: Phase a): The following steps of the ISPOR protocol will be followed: 1)Preparation, 2) Forward translation, 3) Reconciliation, 4) Back translation, 5) Back translation review, 6) Harmonization, 7) Cognitive debriefing, 8) Review of cognitive debriefing results and finalization, 9) Proofreading, 10) Final report. Phase b): Interviews to gain an understanding concerning the respondents’ understanding of PIPP-R will be performed. Respondents’ first perform a pain assessment with the preliminary version of the scale while verbalizing their thought processes (Think Aloud) followed by an interview based on a semi-structured interview guide (Verbal Probing).                                                              Measures: National data will be analyzed in accordance with a predefined problems matrix (4).                                                                                                                     Results: None obtained yet. However; members of our research group have previous experience with the original PIPP scale from both research and clinical practice and have tested out the proposed translation methodology in a previous validation study (4).Conclusions: Having well validated pain assessment measures available, is a necessary first step for efficient treatment of pain in vulnerable preterm infants. This collaboration among the Nordic countries will help to standardize and develop our pain management practices and contribute to further building the PEARL research network.
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25.
  • Rinde, Elisabeth Rønning, et al. (författare)
  • "I have to obey my pain" : children's experiences of pain burden in cerebral palsy
  • 2024
  • Ingår i: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 46:6, s. 1112-1120
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSE: To explore pain experiences of children with cerebral palsy, and how it influences their everyday life.METHOD: Fourteen children with CP between eight and seventeen years old were included, using a purposeful sampling strategy. They had different experiences of pain, and different degrees of physical and cognitive impairments. Sixteen individual semi-structured interviews were carried out, and analyzed using inductive thematic analysis.RESULTS: Data analysis resulted in the main theme "I have to obey my pain" and four themes were identified. Experiences regarding pain varied ("My pain is mine alone"). Both pain itself and the use of cognitive strategies to cope with pain involved a mental struggle ("Pain brings me down"). The children had to make adjustments to manage their pain ("I want to participate, but I have to rest"). The most important help was to be understood, but adults also provided valuable help with interventions like stretching, medication and adjustment of activity levels ("Others can help me").CONCLUSION: Pain was a determining feature in the lives of these children with CP. The wide variety of experiences and challenges emphasized the need for tailored management strategies developed together with each child and their parents.IMPLICATIONS FOR REHABILITATIONChildren with cerebral palsy had varied experiences of pain, and health professionals need to tailor their pain management approaches to the individual child.Health services should offer pain education to expand children's repertoire of pain management strategies.When a child's pain influences their daily activities, health services must ensure that the school is informed of the child's situation, and able to make necessary adjustments.Health professionals should strive to include children's own descriptions whenever possible to make sure children feel heard and believed.Even children with communicative and cognitive impairments were able to self-report when necessary adjustments in the communication situation were made.
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26.
  • Rinde, Elisabeth Rønning, et al. (författare)
  • "Pain is one piece of a complex jigsaw puzzle" : experiences of raising a child with cerebral palsy who has pain
  • 2023
  • Ingår i: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165.
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: To explore experiences of parenting a child with CP and pain.Method: Fourteen mothers and one father of children (9-16) with CP were included. All children had pain regularly, but the frequency and intensity of their pain experiences varied. Their motor function varied from GMFCS level I to V. Cognitive abilities varied from normal to moderate cognitive deficits. All children could express themselves verbally. Semi structured individual interviews were carried out, and results were developed using inductive thematic analysis.Results: The analysis resulted in the main theme "My child's pain is just one piece of a complex jigsaw puzzle". The main theme was developed by four mutually exclusive, but related themes: "My child's struggle burdens me", "Pain and CP direct our everyday life", "I want to be in control, but cannot always be" and "We are the only ones who understand the complexity".Conclusion: Parents of children with CP experience pain as one aspect of a bigger picture. They need help and support to cope with their child's pain, and professional helpers need to address the complexity pain is a part of.IMPLICATIONS FOR REHABILITATION: Parents of children with cerebral palsy (CP) experience their child's pain as one piece in a jigsaw puzzle, and counseling needs to address the complexity rather than the separate parts of the picture.Health professionals should support parents in evaluation and management of their child's pain, as a feeling of competence in pain management is important to reduce parental stress.Health professionals should inform themselves about the life situation of parents whose child with CP has pain, and encourage them to seek practical support and apply for relevant support schemes that can make their everyday life easier.Parents of children with CP should be encouraged to take part in a diagnosis-specific support group, where they can meet with others in a similar situation, in order to reduce their feeling of being alone with their challenges.
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27.
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28.
  • Ulveseter Lode, Ingrid, et al. (författare)
  • Bruk av hud-mot-hud-kontakt i norske nyfødt intensivavdelinger
  • 2015
  • Ingår i: Sykepleien Forskning. - 1890-2936 .- 1891-2710. ; 10:2, s. 152-160
  • Tidskriftsartikel (refereegranskat)abstract
    • Bakgrunn: Hud-mot-hud-kontakt har fordeler for foreldre og barn.Hensikt: Beskrive likheter og for- skjeller mellom nyfødt intensivav- delinger ved universitetssykehus og øvrige helseforetak, vedrørende praktisk og organisatorisk tilrette- legging og personalets oppfatninger om hud-mot-hud-kontakt.Metode: Spørreskjemaundersø- kelse, ett spørreskjema på avde- lingsnivå (N=19) og ett til et utvalg ansatte i avdelingene (N=463).Hovedresultat: Alle avdelingene og et utvalg ansatte (n=322; 69,5 prosent) besvarte undersøkelsen. Alle avdelingene tilrettela for hud- mot-hud og flertallet prøvde å få til den første kontakten så tidlig som mulig. Majoriteten av stabile pre- mature fikk hud-mot-hud-kontakt inntil seks timer per døgn. De viktig- ste argumentene for hud-mot-hud- kontakt, ifølge personalet, var posi- tive effekter på samspill, tilknytning og barnets utvikling. Bekymring for barnets stabilitet var den viktigste hindringen. I helseforetak somikke var universitetssykehus var forholdene best tilrettelagt, mens personalet ved universitetssykehu- sene var stort sett mer komfortable med å anvende hud-mot-hud for de sykeste barna. Rundt halvparten av alle avdelingene hadde retningslin- jer for og skriftlig foreldreinforma- sjon om hud-mot-hud-kontakt.Konklusjon: Funnene kan synliggjøre et behov for endring av nyfødtomsor- gen for å sikre at foreldre og barn får muligheten til å være sammen hele døgnet under hele sykehusoppholdet. 
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