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BACKGROUND: Preterm infants are at risk of complications due to their prematurity and Retinopathy of Prematurity (ROP) is one of them. To discover and treat ROP the preterm infants regularly undergo eye examinations. Nurses are responsible for the infants' care during this painful and stressful procedure. AIM: The aim of this study was to explore nurses' perceptions of preterm infants' eye examinations. METHODS: Data were collected through semi-structured interviews with 10 nurses experienced in participating in preterm infants' eye examinations. Data were analysed using a phenomenographic approach. RESULTS: The results showed several perceptions of the eye examinations, and the analysis resulted in four descriptive categories: Infants are affected by the eye examination; Nurses have comprehensive overall responsibility for the infants; Parents are important to their infants, but they need support to fulfil their parental role, and Collaboration is important for the examination's favourable outcome. The category Nurses have comprehensive overall responsibility for the infants was regarded as the most comprehensive, covering all the other categories. CONCLUSIONS: Nurses felt a great responsibility during a painful and stressful procedure for preterm infants. Infants' well-being could be better protected by interprofessional collaboration, improved nursing care and involved parents.

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 REHABILITATION Children 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 adjustment

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 t, Funding Agency:Telemark Hospital Trust

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

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.

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.

Accepted for the IASP World Congress on Pain, June 2020 in Amsterdam, The Netherlands. Transferred to the IASP Virtual Series on Pain and Expo, September 2020-March 2021.

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

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.

Funding Agencies:Örebro UniversityÖrebro University Hospital Research Foundation

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 the frequency of pain assessments, use of mechanical ventilation, sedation, analgesia or neuromuscular blockade for each neonate for up to 28 days after NICU admission. Results: Only 2113 of 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 (all p < 0.01), and for newborns <32 weeks gestational age, those requiring ventilation, or opioids, sedatives-hypnotics, general anaesthetics (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., SCOPUS: ar.j, info:eu-repo/semantics/published