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  • 1.
    Ahl, Hanna
    et al.
    Skåne University Hospital, Lund, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Norman, Elisabeth
    Lund University, Lund, Sweden.
    Sjöström Strand, Annica
    Lund University, Lund, Sweden.
    Olsson, Emma
    Örebro University Hospital, Örebro, Sweden.
    Bruschettini, Matteo
    Lund University, Lund, Sweden.
    Pain scales in clinical trials in newborn infants: a mapping of the evidence2018Other (Other academic)
  • 2.
    Anand, K J S
    et al.
    Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, AR, USA; Department of Anestheslogy, Neurobiology, and Pharmacology, University of Arkansas for Medical Sciences, Little Rock, AR, USA.
    Hall, R Whit
    Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, AR, USA.
    Desai, Nirmala
    Department of Pediatrics, University of Kentucky Medical Center, Lexington, KY.
    Shephard, Barbara
    Department of Pediatrics, Tufts University School of Medicine, Boston, MA.
    Bergqvist, Lena L
    Neonatal Research Unit, Karolinska Institute, Astrid Lindgren's Children's Hospital, Stockholm, Sweden.
    Young, Thomas E
    Department of Pediatrics, University of North Carolina at Chapel Hill and Wake Medical Center, Raleigh, NC, USA.
    Boyle, Elaine M
    Simpson Memorial Maternity Pavilion, University of Edinburgh, Edinburgh, UK.
    Carbajal, Ricardo
    Service de Pédiatrie et Médecine Néonatale, Centre Hospitaller Poissy Saint Germain, Poissy, France.
    Bhutani, Vinod K
    Department of Pediatrics, University of Pennsylvania and Pennsylvania Hospital, Philadelphia, PA, USA.
    Moore, Mary Beth
    Department of Radiology, University of Arkansas for Medical Sciences, Little Rock, AR, USA.
    Kronsberg, Shari S
    Maryland Medical Research Institute, Baltimore, MD.
    Barton, Bruce A
    Maryland Medical Research Institute, Baltimore, MD.
    Effects of morphine analgesia in ventilated preterm neonates: primary outcomes from the NEOPAIN randomised trial2004In: The Lancet, ISSN 0140-6736, E-ISSN 1474-547X, Vol. 363, no 9422, p. 1673-82Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Opioid analgesia is commonly used during neonatal intensive care. We undertook the Neurologic Outcomes and Pre-emptive Analgesia in Neonates (NEOPAIN) trial to investigate whether pre-emptive morphine analgesia decreases the rate of a composite primary outcome of neonatal death, severe intraventricular haemorrhage (IVH), and periventricular leucomalacia (PVL) in preterm neonates.

    METHODS: Ventilated preterm neonates (n=898) from 16 centres were randomly assigned masked placebo (n=449) or morphine (n=449) infusions. After a loading dose (100 microg/kg), morphine infusions (23-26 weeks of gestation 10 microg kg(-1) h(-1); 27-29 weeks 20 microg kg(-1) h(-1); 30-32 weeks 30 microg kg(-1) h(-1)) were continued as long as clinically justified (maximum 14 days). Open-label morphine could be given on clinical judgment (placebo group 242/443 [54.6%], morphine group 202/446 [45.3%]). Analyses were by intention to treat.

    FINDINGS: Baseline variables were similar in the randomised groups. The placebo and morphine groups had similar rates of the composite outcome (105/408 [26%] vs 115/419 [27%]), neonatal death (47/449 [11%] vs 58/449 [13%]), severe IVH (46/429 [11%] vs 55/411 [13%]), and PVL (34/367 [9%] vs 27/367 [7%]). For neonates who were not given open-label morphine, rates of the composite outcome (53/225 [24%] vs 27/179 [15%], p=0.0338) and severe IVH (19/219 [9%] vs 6/189 [3%], p=0.0209) were higher in the morphine group than the placebo group. Placebo-group neonates receiving open-label morphine had worse rates of the composite outcome than those not receiving open-label morphine (78/228 [34%] vs 27/179 [15%], p<0.0001). Morphine-group neonates receiving open-label morphine were more likely to develop severe IVH (36/190 [19%] vs 19/219 [9%], p=0.0024).

    INTERPRETATION: Pre-emptive morphine infusions did not reduce the frequency of severe IVH, PVL, or death in ventilated preterm neonates, but intermittent boluses of open-label morphine were associated with an increased rate of the composite outcome. The morphine doses used in this study decrease clinical signs of pain but can cause significant adverse effects in ventilated preterm neonates.

  • 3.
    Anand, Kanwlajeet J. S.
    et al.
    Departments of Pediatrics, Anesthesiology, Perioperative & Pain Medicine, Stanford University School of Medicine, Stanford CA, USA.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Boyle, Elaine M.
    Department of Health Sciences, University of Leicester, Leicester, United Kingdom .
    Avila-Alvarez, Alejandro
    Department of Neonatology, Complexo Hospitalario Universitario de A Coruña, Coruña, Spain.
    Dovland Andersen, Randi
    Department of Child & Adolescent Health Services, Telemark Hospital, Skien, Norway.
    Sarafidis, Kosmas
    1st Department of Neonatology, Hippokrateion General Hospital, Aristotle University of Thessaloniki, Thessalokiki, Greece.
    Pölkki, Tarja
    Children and Women Department, Oulu University Hospital, Oulu, Finland.
    Matos, Christina
    Maternidade Dr. Alfredo da Costa, Lisboa, Portugal.
    Lago, Paola
    Department of Woman's and Child's Health, University of Padua, Padua, Italy.
    Papadouri, Thalia
    Department of Paediatrics, Arch. Makarios III Hospital, Nicosia, Cyprus.
    Attard-Montalto, Simon
    Department of Paediatrics, Mater Dei Hospital, Msida, Malta.
    Ilmoja, Mari-Liis
    Department of Paediatrics, Tallinn Children's Hospital, Tallinn, Estonia.
    Simmons, Sinno
    Department of Pediatrics, Erasmus MC–Sophia Kinderziekenhuis, Rotterdam, The Netherlands.
    Tameliene, Rasa
    Department of Neonatology, Kaunas Perinatal Center, Lithuanian University of Health Sciences, Kaunas, Lithuania.
    van Overmeire, Bart
    Cliniques Universitaires de Bruxelles, Erasme Hospital, Bruxelles, Belgium.
    Berger, Angelika
    Department of Pediatrics and Adolescent Medicine, Medical University Vienna, Vienna, Austria.
    Dobrzanska, Anna
    Department of Neonatology, Children's Memorial Health Institute Warsaw, Warszawa, Poland.
    Schroth, Michael
    Department of Paediatrics, Cnopf'sche Kinderklinik, Nürnberg Children's Hospital, Nürenberg, Germany.
    Bergqvist, Lena
    Department of Clinical Science, Intervention and Technology, Karolinska Institutet, Solna, Sweden.
    Courtois, Emilie
    Urgences Pédiatriques, Hôpital Armand Trousseau, INSERM U1153, Université Pierre et Marie Curie Paris VI, Paris, France.
    Rousseau, Jessica
    Urgences Pédiatriques, Hôpital Armand Trousseau, INSERM U1153, Université Pierre et Marie Curie Paris VI, Paris, France.
    Carbajal, Ricardo
    Urgences Pédiatriques, Hôpital Armand Trousseau, INSERM U1153, Université Pierre et Marie Curie Paris VI, Paris, France.
    EUROPAIN survey working group of the NeoOpioid Consortium, Group author
    Assessment of continuous pain in newborns admitted to NICUs in 18 European countries2017In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 106, no 8, p. 1248-1259Article in journal (Refereed)
    Abstract [en]

    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.

  • 4.
    Andersen Dovland, Randi
    et al.
    Telemark Hospital, Skien, Norway.
    Axelin, Anna
    University of Turku, Turku, Finland.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Kristjánsdóttir, Gudrun
    University of Iceland, Reykjavik, Iceland.
    PEARL: Pain in early life. A new network for research and education2016Conference paper (Refereed)
    Abstract [en]

    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.

  • 5.
    Andersen, Randi Dovland
    et al.
    Telemarkshospitalet, Skien, Norway; Karolinska Institutet, Stockholm, Sweden.
    Axelin, Anna
    University of Turku, Turku, Finland.
    Kristjánsdóttir, Guðrún
    University of Iceland, Reykjavik, Iceland.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    PEARL—Pain in Early Life: A New Network for Research and Education2017In: Journal of Perinatal & Neonatal Nursing, ISSN 0893-2190, E-ISSN 1550-5073, Vol. 31, no 2, p. 91-95Article in journal (Refereed)
  • 6.
    Anderzen-Carlsson, Agneta
    et al.
    Örebro University Hospital.
    Lamy, Zeny C
    Tingvall, Maria
    School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    The nursing contribution in facilitating health and well-being in parents and infants in neonatal skin-to-skin care2013Conference paper (Refereed)
    Abstract [en]

    Background: Qualitative research about parental experiences of skin-to-skin care (SSC) reveals that the provision of SSC is an important part of becoming a parent. It has, from the perspective of the parent been characterised as a restoring experience as well as an energy-draining activity.

    Aim: The aim of this presentation is to highlight some nursing contributions facilitating a successful SSC.

    Methods: From the results of a meta-study (1) including 24 qualitative papers from 7 countries, a number of energy-draining experiences were identified, related to factors that can be modified in order to achieve a more restoring and less energy-draining experience. Some of these factors will be discussed and nursing actions will be suggested in order to provide families with better support for SSC.

    Results: Nursing actions to support parents providing skin-to-skin care should focus on the following factors:

            - Surveiling a family friendly physical environment of the neonatal unit; provide space and privacy for families and reduce noise and “technology-stress” levels

            - Nurses should encourage and support parents to provide skin-to-skin care, without inflicting pressure or feelings of guilt.

            - Fathers need extra support to be confident in providing SSC.

            - The needs of the whole family, including siblings at home, should be taken into account.

    Conclusion: It is important for nurses to be aware that SSC can be experienced both as restorative and energy consuming and that nurses’ attitudes can influence the parental experience, and alongside with that the wellbeing of the infant. In order to apply a family centrered perspective nurses must evaluate interventions, such as SSC, from the perspective of the individual infant, as well as from the perspective of the family as a whole.

  • 7.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Carvalho Lamy, Zeni
    Departamento de Saúde Pública, Universidade Federal do Maranhâo, Hospital Universitário, Sao Luis, Brazil.
    Tingvall, Maria
    Department of Obstetrics and Gynaecology, Örebro University Hospital, Örebro, Sweden.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Parental experiences of providing skin-to-skin care to their newborn infant: Part 2: A qualitative meta-synthesis2014In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 9, article id 24907Article, review/survey (Refereed)
    Abstract [en]

    Aim: To synthesize and interpret qualitative research findings focusing on parental experiences of skin-to-skin care (SSC) for newborn infants.

    Background: SSC induces many benefits for newborn infants and their parents. Three meta-analyses have been conducted on physiological outcomes, but no previous qualitative meta-synthesis on parental experiences of SSC has been identified.

    Design: The present meta-synthesis was guided by the methodology described by Paterson and co-workers.

    Data sources: Four databases were searched, without year or language limitations, up until December 2013. Manual searches were also performed. The searches and subsequent quality appraisal resulted in the inclusion of 29 original qualitative papers from 9 countries, reporting experiences from 401 mothers and 94 fathers.

    Review methods: The meta-synthesis entails a meta-data analysis, analysis of meta-method, and meta-theory in the included primary studies. Based on the three analyses, the meta-synthesis represents a new interpretation of a phenomenon. The results of the meta-data analysis have been presented as a qualitative systematic review in a separate paper.

    Results: When synthesizing and interpreting the findings from the included analyses, a theoretical model of Becoming a parent under unfamiliar circumstances emerged. Providing SSC seems to be a restorative as well as an energy-draining experience. A supportive environment has been described as facilitating the restorative experience, whereas obstacles in the environment seem to make the provision of SSC energy-draining for parents. When the process is experienced as positive, it facilitates the growth of parental self-esteem and makes the parents ready to assume full responsibility for their child.

    Conclusion: The results show that SSC can be interpreted not only as a family-including and important health care intervention but also in terms of actually becoming a parent. The process of becoming a parent in this specific situation is influenced by external factors in three different levels; family and friends, community, and society at large. The descriptions of providing SSC are similar to what has previously been described as the natural process of becoming a mother or a father.

  • 8.
    Anderzén-Carlsson, Agneta
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Carvalho Lamy, Zeny
    Departamento de Saúde Pública, Universidade Federal do Maranhâo, Hospital Universitário, Sao Luis MA, Brazil.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Parental experiences of providing skin-to-skin care to their newborn infant: Part 1: A qualitative systematic review2014In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 9, article id 24906Article in journal (Refereed)
    Abstract [en]

    Aim: To describe parental experiences of providing skin-to-skin care (SSC) to their newborn infants.

    Background: SSC care for newborn infants has been reported to have positive physiological and psychological benefits to the infants and their parents. No systematic review regarding parental experiences has been identified.

    Design: In this first part of a meta-study, the findings of a systematic literature review on parental experience of SSC care are presented.

    Data sources: Four databases were searched, without year or language limitations, up until December 2013. Manual searches were performed in reference lists and in a bibliography of the topic.

    Review methods: After a quality-appraisal process, data from the original articles were extracted and analysed using qualitative content analysis.

    Results: The systematic and manual searches led to the inclusion of 29 original qualitative papers from nine countries, reporting experiences from 401 mothers and 94 fathers. Two themes that characterized the provision of SSC emerged: a restoring experience and an energy-draining experience.

    Conclusion: This review has added scientific and systematic knowledge about parental experiences of providing SSC. Further research about fathers’ experiences is recommended.

  • 9. Anderzén-Carlsson, Agneta
    et al.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Hud-mot-hudvård2013In: Familjecentrerad neonatalvård / [ed] Karin Jackson, Helena Wigert, Lund: Studentlitteratur AB, 2013, 1, p. 97-110Chapter in book (Other academic)
  • 10.
    Arenhall, Eva
    et al.
    Örebro University, School of Medical Sciences. Department of Cardiology, Faculty of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Nilsson, Ulrica
    Örebro University, School of Health Sciences.
    Steinke, Elaine
    School of Nursing, Wichita State University, Wichita, USA.
    Fridlund, Bengt
    School of Health and Welfare, Jönköping University, Jönköping, Sweden.
    Decreased sexual function in partners after patients’ first-time myocardial infarction2018In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 17, no 6, p. 521-526Article in journal (Refereed)
    Abstract [en]

    Background: A myocardial infarction event affects not only patients but also partners, although how it affects the partners’ sexual function is not studied.

    Aim: The purpose of this study was to describe and compare how partners experienced their sexual function one year before with one year after first-time myocardial infarction of their partner.

    Methods: A longitudinal and comparative design was used. Self-reported data on Watts Sexual Function Questionnaire was collected retrospectively at two occasions from 123 partners (87 women and 36 men), measuring the year prior to the first-time myocardial infarction and the year after. Data were analysed using descriptive and inferential statistics.

    Results: The total score for Watts Sexual Function Questionnaire showed a significant decrease over time. In all four subscales a decrease was found, which were statistically significant in three out of the four subscales (sexual desire, 19.39 vs 18.61; p<0.001, orgasm, 14.11 vs 13.64; p=0.027 and satisfaction, 12.61 vs 12.31; p=0.042). Twenty-six partners reported that their intercourse frequencies decreased over time, while six partners reported an increased intercourse frequency.

    Conclusions: Partners’ sexual function decreased after patients’ first-time myocardial infarction. It is important for health personnel to offer information and discussion about sexual function and concerns with both patients and partners after a first-time myocardial infarction.

  • 11.
    Axelin, Anna
    et al.
    Department of Nursing Science, University of Turku, Turku, Finland; Department of Family Health Care Nursing, University of California, San Francisco CA, USA.
    Anderzén-Carlsson, Agneta
    Department of Nursing Science, University of Turku, Turku, Finland .
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Centre for Health Care Sciences, Region Örebro County, Örebro, Sweden.
    Pölkki, Tarja
    Institute of Health Sciences, University of Oulu, Oulu, Finland.
    Korhonen, Anne R.N.
    Department of Pediatrics, Oulu University Hospital, Oulu, Finland .
    Franck, Linda
    Department of Family Health Care Nursing, University of California, San Francisco CA, USA.
    Neonatal intensive care nurses' perceptions of parental participation in infant pain management: a comparative focus group study2015In: Journal of Perinatal & Neonatal Nursing, ISSN 0893-2190, E-ISSN 1550-5073, Vol. 29, no 4, p. 363-374Article in journal (Refereed)
    Abstract [en]

    This comparative focus group study explored nurses' experiences and perceptions regarding parental participation in infant pain management in the neonatal intensive care unit (NICU). A total of 87 nurses from 7 NICUs in Finland, Sweden, and the United States participated in focus-group interviews (n = 25). Data were analyzed using deductive and inductive thematic analysis. Nurses' experiences and perceptions varied considerably, from nurses being in control, to nurses sharing some control with parents, to nurse-parent collaboration in infant pain management. When nurses controlled pain management, parents were absent or passive. In these cases, the nurses believed this led to better pain control for infants and protected parents from emotional distress caused by infant pain. When nurses shared control with parents, they provided information and opportunities for participation. They believed parent participation was beneficial, even if it caused nurses or parents anxiety. When nurses collaborated with parents, they negotiated the optimal pain management approach for an individual infant. The collaborative approach was most evident for the nurses in the Swedish NICUs and somewhat evident in the NICUs in Finland and the United States. Further research is needed to address some nurses' perceptions and concerns and to facilitate greater consistency in the application of evidence-based best practices.

  • 12.
    Axelin, Anna
    et al.
    University of Turku, Turku, Finland.
    Anderzén-Carlsson, Agneta
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Pöllki, Tarja
    University of Oulu, Oulu, Finland.
    Korhonen, Anne
    Oulu University Hospital, Oulu, Finland.
    Franck, Linda S
    University of California, San Francisco, USA.
    NICU Nurses’ Perceptions of Parental Participation in Infant Pain Management: a Comparative Focus Group Study2015Conference paper (Refereed)
  • 13.
    Axelin, Anna
    et al.
    University of Turku, Turku, Finland.
    Dovland Andersen, Randi
    School of Health Sciences, Örebro University, Örebro, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Kristjánsdóttir, Guðrún
    University of Iceland, Reykjavik, Island.
    Weis, Janne
    Copenhagen University Hospital, Copenhagen, Denmark.
    Pain in early life (pearl) – a network for pain research and education2019Conference paper (Refereed)
    Abstract [en]

    Background

    Small 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. 

  • 14. Axelin, Anna
    et al.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Gradin, Maria
    Smärta2013In: Familjecentrerad neonatalvård / [ed] Karin Jackson, Helena Wigert, Lund: Studentlitteratur AB, 2013, 1, p. 111-124Chapter in book (Other academic)
  • 15.
    Axelin, Anna
    et al.
    University of Turku, Turku, Finland.
    Franck, Linda S
    University of California, San Francisco, USA.
    Anderzén-Carlsson, Agneta
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Korhonen, Anne
    University of Oulo, Oulo, Finland.
    Pölkki, Tarja
    University of Oulo, Oulo, Finland.
    NICU Nurses’perceptions regarding parental involvement in infant pain management2013Conference paper (Refereed)
    Abstract [en]

    Nurses play a key but varied role in enabling (or impeding) parents’ access to information and support needed for parental participation, influenced by individual, institutional and regional factors. We know very little about parental involvement from the perspective of nurses. The aim of this study was to explore views of nurses in 3 countries regarding the role of parents in infant pain management.

    Methods: A qualitative semi-structured interview study involving NICU nurses was conducted in Finland (n=47), Sweden (n=14), and the US (n=26). The interviews were analyzed with a deductive framework of a range of potential parent roles in infant pain management: none, being informed, being present, providing comfort, an informant for NICU staff, an active decision maker, or advocate for infant (Franck et al. 2012).

    Results: In all three countries, the nurses described two common parental roles: being informed and providing comfort. Parents were rarely described as informants, active decision makers, or advocates in relation to infant pain management. A new role of ‘parent as assistant’ emerged as some nurses described how parents provided infant comfort while the nurses concentrated on the technical performance of the painful procedure. Interviews also revealed that parents were sometimes actively excluded from infant pain management because their presence made nurses anxious when performing painful procedures. In the Finnish and Swedish samples, collaborative relations with parents were    emphasized. The Swedish nurses highlighted the mutual dialogue between nurses and parents. In the US sample, some nurses reported that an active parent role in pain management was not necessary or desirable, since they considered good pain management to be the responsibility of nurses.

    Discussion and Conclusion: Nurses’ support for parental involvement in infant pain management varies considerably. In some cases, they actively oppose or prevent parental involvement. In other instances, they facilitate parental involvement and encourage partnerships in all aspects of pain management. The transition to a more family-centered approach to infant pain management requires further examination of areas of alignment and dissonance between nurses and parents’ values, needs, perceptions and roles in caring for infants at high risk for pain.

    Franck LS, Oulton K, Bruce E. Parental involvement in neonatal pain management: an empirical and conceptual update. J Nurs Scholarsh, 2012;44(1):45-54.

  • 16.
    Bendt, Martina
    et al.
    Karolinska institutet, Stockholm, Sweden.
    Gabrielsson, Hanna
    Riedel, Dorothee
    Spinalis SCI Unit.
    Hagman, Göran
    Karolinska institutet, Stockholm, Sweden.
    Hulting, Claes
    Spinalis SCI Unit.
    Franzén, Erika
    Karolinska institutet, Stockholm, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Seiger, Åke
    Karolinska institutet, Stockholm, Sweden.
    Living and health conditions for adults with spina bifida in Sweden – a comprehensive prevalence group study2018Conference paper (Refereed)
    Abstract [en]

    Introduction Seventy-five per-cents of children born with Spina Bifida (SB) are expected to live into adulthood, meaning that the adults will need more attention in the future. Adulthood involves great demands for persons with SB, but also for their families, the social well-fare and healthcare systems, as the group has a persistent need for care and support. The aim is to describe the living and health conditions for adults with Spina Bifida in different life stages including medical, physical, psychological, cognitive and social aspects. 

    Methods A cross-sectional study conducted by a multidisciplinary team. Data collection was performed through structured interviews, questionnaires and clinical assessments. All individuals > 18 years with SB (n=219) registered at a regional outpatient clinic were offered participation; 196 persons (104 women, 92 men 18-73 years) were included. 

    Results There was a great variation in the group concerning problems related to their congenital injury. The persons > 45 years and especially > 61 years seems to have less problems such as less prevalence of hydrocephalus, Chiari II malformation, tethered cord syndrome and they also walked to a higher extent. They passed elementary school to a higher extent and performed better on the tests for psychomotor speed and executive function. 

    Conclusions The study shows the multifaceted problems this group is facing as adults with SB and contributes to increased knowledge concerning the living and health conditions. Increased knowledge can lead to targeted interventions and better care, thereby decreasing secondary complications, reducing costs for society and hopefully increasing quality of life for persons with SB and their families.

  • 17.
    Bergh, Cecilia
    et al.
    Örebro University, School of Health Sciences.
    Hiyoshi, Ayako
    Örebro University, School of Medical Sciences. Department of Public Health Sciences, Stockholm University, Stockholm, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Fall, Katja
    Örebro University, School of Medical Sciences.
    Montgomery, Scott
    Örebro University, School of Medical Sciences. Clinical Epidemiology Division, Department of Medicine, Karolinska University Hospital Solna, Karolinska Institutet, Stockholm, Sweden; Department of Epidemiology and Public Health, University College London, UK.
    Shared unmeasured characteristics among siblings confound the association of Apgar score with stress resilience in adolescence2019In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227Article in journal (Refereed)
    Abstract [en]

    AIM: We investigated the association between low Apgar score, other perinatal characteristics and low stress resilience in adolescence. A within-siblings analysis was used to tackle unmeasured shared familial confounding.

    METHODS: We used a national cohort of 527,763 males born in Sweden between 1973 and 1992 who undertook military conscription assessments at mean age 18 years (17-20). Conscription examinations included a measure of stress resilience. Information on Apgar score and other perinatal characteristics was obtained through linkage with the Medical Birth Register. Analyses were conducted using ordinary least squares and fixed-effects linear regression models adjusted for potential confounding factors.

    RESULTS: Infants with a prolonged low Apgar score at five minutes had an increased risk of low stress resilience in adolescence compared to those with highest scores at one minute, with an adjusted coefficient and 95% confidence interval of -0.26 (-0.39, -0.13). The associations were no longer statistically significant when using within-siblings models. However, the associations with stress resilience and birthweight remained statistically significant in all analyses.

    CONCLUSION: The association with low Apgar score seems to be explained by confounding due to shared childhood circumstances among siblings from the same family, while low birthweight is independently associated with low stress resilience.

  • 18. Bergqvist, L.
    et al.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences.
    Kronsberg, S.S.
    Schollin, Jens
    Örebro University, School of Health and Medical Sciences.
    Barton, B.
    Anand, K.J.S.
    Seeing through the blind!: ability of hospital staff to differentiate morphine from placebo, in neonates at a placebo controlled trial2007In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 96, no 7, p. 1004-1007Article in journal (Refereed)
    Abstract [en]

    AIM: To investigate whether professional training and/or clinical experience affect the ability of caregiver to assess clinical signs of pre-emptive morphine analgesia. METHODS: In the Neurological Outcomes & Pre-emptive Analgesia In Neonates trial preterm infants undergoing mechanical ventilation were randomized to receive continuous infusion, either of morphine or placebo blinded. Staff from centres in Sweden (Stockholm and Orebro) completed an assessment form. RESULTS: A total of 360 assessment forms were collected from 52 neonates. In 59% of the cases, caregivers correctly identified patients group. Comparable proportion of answers were correct between physicians, nurses and assistant nurses (63, 60 and 54%, respectively, p = 0.60). Staff with Neonatal intensive care unit experience <1 year identified 63%, as compared to 65% for working 1-5 year, and 55% that has been working >5 years (p = 0.28). Staff's ability to correctly identify group assignment was reduced by amount of additional morphine (p < 0.01) and severity of illness (p = 0.01). CONCLUSIONS: Clinical medical staffs, including neonatologists, have great difficulties in assessing the presence and severity of pain. Further studies should focus on the methods for assessment of prolonged pain in preterm neonates, define the effects of adequate analgesia, and investigate the clinical factors that may alter neonatal responses to acute and prolonged pain.

  • 19.
    Blomberg, Karin
    et al.
    Örebro University, School of Health Sciences.
    Brorson, Lars-Olov
    Department of Paediatrics, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
    Stenninger, Erik
    Department of Paediatrics, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences. Department of Paediatrics.
    Fifty-year follow-up of childhood epilepsy: Social, psychometric, and occupational outcome2019In: Epilepsy & Behavior, ISSN 1525-5050, E-ISSN 1525-5069, Vol. 96, p. 224-228Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The objective of this study was to explore and describe the experience of a childhood diagnosis of epilepsy and its consequences for the experiences of daily life over a span of 50 years.

    METHODS: A descriptive mixed method design was chosen. Data were collected through a survey returned by 86 persons (59% response rate) who had received diagnoses of epilepsy as children. The survey contained questions about education, vocation, family status, and included the 14-item Hospital Anxiety and Depression Scale (HAD). Additionally, interviews (n = 11) were conducted and analyzed by interpretative description.

    RESULTS: Few persons reported that the childhood diagnosis of epilepsy had affected their choice of education, work, or leisure activities. However, 20% reported that the diagnosis had caused problems in school or at work and had restricted their activities of daily living. Sixty-six percent of the participants were married, and 68% had children; of those, 12 (20%) reported that one or more of the children had also had seizures. Almost all reported no anxiety (82%) and no depression (90%). The results of the interviews revealed a balancing act between 'Controlling and managing the situation' and 'Not being restricted by the condition'.

    SIGNIFICANCE: This long-term follow-up over a 50-year life-span of persons who received childhood diagnoses of epilepsy suggests that the consequences for education, work, and leisure activities were few. Most of the participants had developed strategies to manage their situation.

  • 20.
    Blomberg, Karin
    et al.
    Örebro University, School of Health Sciences.
    Carlsson, Agneta Anderzén
    Faculty of Health, Science and Technology, Department of Health Sciences, Karlstad University, Karlstad, Sweden.
    Hagberg, Lars
    Örebro University, School of Health Sciences. Örebro University Hospital. University Health Care Research Centre, Region Örebro County, Örebro, Sweden.
    Jonsson, Östen
    Örebro University, School of Medical Sciences. Örebro University Hospital. Department of Paediatrics, Örebro University Hospital, Örebro, Sweden.
    Leissner, Lena
    Department of Neurology, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Quality of life and trust among young people with narcolepsy and their families, after the Pandemrix® vaccination: Protocol for a case-control study2017In: BMC Pediatrics, ISSN 1471-2431, E-ISSN 1471-2431, Vol. 17, no 1, article id 183Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The extensive vaccination programme against swine flu resulted in an increased incidence of narcolepsy among children and adolescents. There is a need to explore if these young persons' experiences have affected their trust in healthcare, their willingness to participate in future prevention programmes, and their contacts with the healthcare system. The overall aim is to identify factors important for the life-situation of children and adolescents with narcolepsy and their families, and factors that correlate with trust in healthcare.

    METHODS/DESIGN: Data will be collected via questionnaires from all available children with narcolepsy following the vaccination and their families, as well as a control group of children with diabetes and their families. Longitudinal descriptive interviews will also be conducted with a selection of 20-25 children and their families. Techniques from media research will be used for Internet-based data collection and analysis of information relating to narcolepsy from social media.

    DISCUSSION: This project will use the situation of young persons with narcolepsy after the swine flu vaccination as a case to build a model that can be used in situations where trust in healthcare is essential. This model will be based on findings from the included studies on how trust is influenced by support, quality of life, burden of disease, impact on family, and use of social media. The model developed in this project will be beneficial in future situations where trust in healthcare is essential, such as new pandemic outbreaks but also for "everyday" adherence to health advice.

  • 21.
    Blomberg, Karin
    et al.
    Örebro University, School of Health Sciences.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Böö, Richard
    Örebro University, Örebro, Sweden.
    Grönlund, Åke
    Örebro University, Örebro University School of Business.
    Coping with narcolepsy after Pandemrix®vaccination using a Facebook forum2019Conference paper (Other academic)
  • 22.
    Blomberg, Karin
    et al.
    Örebro University, School of Health Sciences.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Böö, Richard
    School of Business, Örebro University, Örebro, Sweden.
    Grönlund, Åke
    Örebro University, Örebro University School of Business.
    Using a Facebook Forum to Cope With Narcolepsy After Pandemrix Vaccination: Infodemiology Study2019In: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 21, no 4, article id e11419Article in journal (Refereed)
    Abstract [en]

    Background: In 2010, newly diagnosed narcolepsy cases among children and adolescents were seen in several European countries as a consequence of comprehensive national vaccination campaigns with Pandemrix against H1N1 influenza. Since then, a large number of people have had to live with narcolepsy and its consequences in daily life, such as effects on school life, social relationships, and activities. Initially, the adverse effects were not well understood and there was uncertainty about whether there would be any financial compensation. The situation remained unresolved until 2016, and during these years affected people sought various ways to join forces to handle the many issues involved, including setting up a social media forum.

    Objective: Our aim was to examine how information was shared, and how opinions and beliefs about narcolepsy as a consequence of Pandemrix vaccination were formed through discussions on social media.

    Methods: We used quantitative and qualitative methods to investigate a series of messages posted in a social media forum for people affected by narcolepsy after vaccination.

    Results: Group activity was high throughout the years 2010 to 2016, with peaks corresponding to major narcolepsy-related events, such as the appearance of the first cases in 2010, the first payment of compensation in 2011, and passage of a law on compensation in July 2016. Unusually, most (462/774, 59.7%) of the group took part in discussions and only 312 of 774 (40.3%) were lurkers (compared with the usual 90% rule of thumb for participation in an online community). The conversation in the group was largely factual and had a civil tone, even though there was a long struggle for the link between the vaccine and narcolepsy to be acknowledged and regarding the compensation issue. Radical, nonscientific views, such as those expounded by the antivaccination movement, did not shape the discussions in the group but were being actively expressed elsewhere on the internet. At the outset of the pandemic, there were 18 active Swedish discussion groups on the topic, but most dissolved quickly and only one Facebook group remained active throughout the period.

    Conclusions: The group studied is a good example of social media use for self-help through a difficult situation among people affected by illness and disease. This shows that social media do not by themselves induce trench warfare but, given a good group composition, can provide a necessary forum for managing an emergency situation where health care and government have failed or are mistrusted, and patients have to organize themselves so as to cope.

  • 23.
    Blomberg, Karin
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Eriksson, Mats
    Örebro University, School of Humanities, Education and Social Sciences.
    Grönlund, Åke
    Örebro University, Örebro University School of Business.
    Jonsson, Östen
    Leissner, Lena
    Trust and mistrust, quality-of-life and need for support: essons from narcolepsy-afflicted children and adolescents after the swine flu vaccination2015In: 3rd Nordic Symposium on Narcolepsy, 2015Conference paper (Other academic)
  • 24.
    Bohman, Benjamin
    et al.
    Dept Public Health Science, Karolinska Institute, Stockholm, Sweden.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Örebro University Hospital. Center of Health Care Science, Örebro University Hospital, Örebro, Sweden.
    Lind, Maria
    Örebro University, School of Law, Psychology and Social Work. Child Health Service, Örebro City Council, Örebro, Sweden.
    Ghaderi, Ata
    Dept Public Health Science, Karolinska Institute, Stockholm, Sweden; Dept Psychology, Uppsala University, Uppsala, Sweden .
    Forsberg, Lars
    Dept Clinical Neuroscience, Karolinska Institute, Stockholm, Sweden.
    Rasmussen, Finn
    Dept Public Health Science, Karolinska Institute, Stockholm, Sweden.
    Infrequent attention to dietary and physical activity behaviours in conversations in Swedish child health services2013In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 102, no 5, p. 520-524Article in journal (Refereed)
    Abstract [en]

    Aim: To investigate conversations between nurses and parents in Swedish child health services and to assess to what extent attention is directed towards dietary and physical activity behaviours in children.

    Methods: Twenty-three nurses audio-recorded one session each. Recordings were assessed and topics were classified according to predetermined categories.

    Results: The three most frequent topics of conversation concerned physical examinations of the child (30% of session time), talking to the child to establish or maintain contact and interest (15%), and development of language skills (12%). Dietary habits came on fourth place (10%), and physical activity ranked 14 (4%).

    Conclusion: Attention to dietary and physical activity behaviours in children is infrequent in Swedish child health services. Concern is raised about the efficacy of prevention efforts against childhood obesity.

  • 25.
    Boyle, Eline M.
    et al.
    University of Leicester, Leicester, UK .
    Courtois, Emilie
    Inserm U953, Paris, France; L'université Pierre et Marie Curie, Paris, France; Trousseau Hospital, Paris, France .
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Lagercrantz, Hugo
    Karolinska University Hospital, Stockholm, Sweden .
    Carbajal, Ricardo
    Inserm U953, Paris, France; 22UPMC, Paris, France; Trousseau Hospital, Paris, France.
    Pain assessment in ventilated and non-ventilated neonates in NICUs across the UK: European Pain Audit in Neonates (Europain)2014Conference paper (Refereed)
    Abstract [en]

    Background: Neonates undergo many painful procedures during their neonatal intensive care stay. These may include tracheal intubation/ventilation, skin-breaking procedures, drainage/suctioning of body orifices or cavities. Inherent subjectivity and difficulties associated with neonatal pain assessment contribute to a wide variety of assessment tools and clinical practices. To date, these practices have been not studied on a large scale.

    Objective: To determine current clinical practices for neonatal pain assessment in neonatal units across the United Kingdom (UK).

    Design/Methods: As part of a European epidemiological observational study on bedside pain assessment practices data were collected 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: Between February 2013 to May 2013, 66 UK NICUs collected data on 2691 neonates. Of these, 713 received tracheal ventilation and 1978 had spontaneous breathing or non-invasive ventilation. The median (IQR) gestational age of ventilated neonates [32.1 (27.9-38.6)] was less than non-ventilated neonates [37.0 (34.1-39.7), p < 0.001]. Overall, 56.9% of ventilated neonates and 32.5% of non-ventilated neonates received bedside pain assessments (p < 0.001), with use of pain assessments ranging from 0-100% between units.

    CONCLUSIONS: Over half (56.9%) of ventilated neonates and about one third (32.5%) of non-ventilated neonates had pain assessments performed in UK neonatal units. Wide variations in the methods used and rates of pain assessment exist among centres.

  • 26.
    Bramhagen, Ann-Cathrine
    et al.
    Faculty of Health and Society, Department of Care Science, Malmö University, Malmö, Sweden.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Ericsson, Elisabeth
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Nilsson, Ulrica
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Harden, Sue
    CSN, e-Learning/Content Developer, Skåne University Hospital, Malmö, Sweden.
    Idvall, Ewa
    Faculty of Health and Society, Department of Care Science, Malmö University, Malmö, Sweden.
    Self-reported post-operative recovery in children: development of an instrument2016In: Journal of Evaluation In Clinical Practice, ISSN 1356-1294, E-ISSN 1365-2753, Vol. 22, no 2, p. 180-188Article in journal (Refereed)
    Abstract [en]

    Rationale, aims and objectives: According to the United Nations (1989) , hildren have the right to be heard and to have their opinions respected. Since post-operative recovery is an individual and subjective experience and patient-reported outcome measures are considered important, our aim was to develop and test an instrument to measure self-reported quality of recovery in children after surgical procedures.

    Methods: Development of the instrument Postoperative Recovery in Children (PRiC) was influenced by the Quality of Recovery-24, for use in adults. Eighteen children and nine professionals validated the items with respect to content and language. A photo question- naire was developed to determine whether the children’s participation would increase compared with the text questionnaire. The final instrument was distributed consecutively to 390 children, ages 4–12 years, who underwent tonsil surgery at four hospitals in Sweden.

    Results: A total o f238 children with a mean age of 6.5 years participated. According to the parents, 23% circled the answers themselves and 59% participated to a significant degree. However, there was no significant difference in participation between those who received a photo versus a text questionnaire. Psychometric tests of the instrument showed that Cronbach’s alpha for the total instrument was 0.83 and the item-total correlations for 22 of the items were ≥0.20.

    Conclusion: Our results support use of the PRiC instrument to assess and follow-up on children’s self-reported post-operative recovery after tonsil operation, both in clinical praxis as well in research. 

  • 27.
    Breili, Christine
    et al.
    Dalarna University, Falun, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Flacking, Renee
    Dalarna University, Falun, Sweden.
    Support to parents during and after discharge from Swedish neonatal units2019Conference paper (Refereed)
  • 28.
    Brorson, Lars-Olov
    et al.
    Faculty of Medicine and Health, Department of Pediatrics, Örebro University, Örebro, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences. Department of Pediatrics.
    Blomberg, Karin
    Örebro University, School of Health Sciences.
    Stenninger, Erik
    Faculty of Medicine and Health, Department of Pediatrics, Örebro University, Örebro, Sweden.
    Fifty years' follow-up of childhood epilepsy: Medical outcome, morbidity, and medication2019In: Epilepsia, ISSN 0013-9580, E-ISSN 1528-1167, Vol. 60, no 3, p. 381-392Article in journal (Refereed)
    Abstract [en]

    Objective: To describe the long‐term prognosis of childhood epilepsy, with special emphasis on seizure remission, relapse, medication, associated neurologic impairment, mortality rate, and cause of death.

    Methods: A prospective longitudinal study on a population‐based total cohort of 195 children with epileptic seizures in 1962‐1964. Data were collected from medical records and a questionnaire.

    Results: Follow‐up data from 94% of the initial cohort showed the best long‐term prognosis for seizure freedom for children with no intellectual or neurologic impairment. These children had later seizure onset, shorter total duration of epilepsy, and were more often medication free. Only a few of them had isolated relapses. Generalized, rather than focal, epilepsy was associated with fewer relapses and less ongoing medication. The “true incidence” group, with onsets during the inclusion period of 1962‐1964, had the best long‐term prognosis for seizure freedom, with 90% seizure‐free after 50 years. Although only 10% of this group had ongoing seizures at follow‐up, 22% still used anticonvulsive medication, often with old drugs, that is, phenobarbital or phenytoin, as one of the anticonvulsive drugs. The standardized mortality ratio (SMR) was 2.61 for the whole group, with no difference between those with or without other neurodeficits. Those who died young either had neurologic impairment or died from epilepsy‐related conditions; later deaths often followed non–epilepsy‐related conditions. No one in the incidence group died of SUDEP (sudden unexpected death in epilepsy).

    Significance: This 50‐year, long‐term follow‐up of a cohort of persons with childhood epilepsy in general demonstrates a better outcome for seizure freedom compared to our follow‐up after 12 years and to previous reports. We also report a low incidence of seizure relapses. Remission of seizures does not automatically lead to termination of medication. The mortality rate associated with SUDEP was lower than previously reported.

  • 29.
    Campbell-Yeo, Marsha
    et al.
    Dalhousie University, Halfiax, Canada.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Kyolole, O'Brien
    Moi University, Eldoret, Kenya.
    Redefining and implementing parent controlled analgesia through active parent engagement in neonatal pain treatment2017Conference paper (Refereed)
    Abstract [en]

    Involvement of parents in neonatal pain management is of increased interest in both research and clinical settings. From an evolutionary view, the mother is the optimal source of physical and psychological support for the infant, both as a fetus and after birth. Hospital care and medical interventions are sources of separation and stress, leading to a diminished capacity for the infant to endure painful procedures and situations. After decades of healthcare providers not recognising newborn infants’ capacity to feel pain and the associated adverse outcomes, most surgical and end-of-life pain is now prevented and treated with pharmacological methods. However, the drugs used are often not effective for the most common repeated painful procedures, and have potential short and long-term adverse effects. Recent research has thus focused on finding non-pharmacological interventions as a substitute to drugs, or to decrease the drug-doses needed for optimal analgesia. Several of these interventions involve parents, e.g. skin-to-skin care, breastfeeding, or facilitated tucking by parents.

    In this workshop we suggest redefining PCA from Patient Controlled Analgesia to Parent Controlled Analgesia that includes the parents of the newborn infant. This implies a change of role of parents, from being present or being advocates for their infant, to being responsible for their infants as pain-free. We will discuss obstacles and facilitators, in both high and low resource settings, for implementing a structured and highly recommended participation of parents in the pain management of their infant.

  • 30.
    Carbajal, Ricardo
    et al.
    Hôpital Armand Trousseau, Paris, France.
    Courtois, Emilie
    Hôpital Armand Trousseau, Paris, France.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Boyle, Elaine
    University of Leicester, Leicester, United Kingdom.
    Avila-Alvarez, A.
    Complexo Hospitalario Universitario de A Coruña, A Coruña, Spain.
    Dovland-Andersen, Randi
    Telemark Hospital, Skien, Norway.
    Sarafidis, K.
    Neonatal Intensive Care Unit (NICU), Aristotle University of Thessaloniki, Thessaloniki, Greece.
    Polkki, Tarja
    University of Oulu, Oulu, Finland.
    Matos, C.
    Maternidade Dr Alfredo da Costa, Lisboa, Portugal.
    Lago, Paola
    University of Padua, Padua, Italy.
    Papadouri, T.
    Archbishop Makarios III Hospital, Nicosia, Cyprus.
    Attard Montalto, S.
    Mater Dei Hospital, Msida, Malta.
    Ilmoja, M.
    Tallinn Children's Hospital, Tallinn, Estonia.
    Simons, Sinno
    Erasmus MC–Sophia Kinderziekenhuis, Rotterdam, Netherlands.
    Tameliene, Rasa
    Perinatal center, , Lithuania.
    van Overmeire, Bart
    Erasme Hospital, Bruxelles, Belgium.
    Berger, Angelika
    Medical University of Vienna, Vienna, Austria.
    Dobrzanska, Anna
    Instytut Zdrowia Dziecka, Warshawa, Poland.
    Schroth, Michael
    Cnopf'sche Kinderklinik, Nürnberg, Germany.
    Bergqvist, Lena
    Women's and Children's health, Karolinska Institute, Stockholm, Sweden.
    Lagercrantz, Hugo
    Women’s and Children’s health, Karolinska Institute, Stockholm, Sweden.
    Anand, KJS
    School of Medicine, Stanford University, Stanford CA, USA.
    Pain Assessment in Ventilated and Non-Ventilated Neonates in NICUS across Europe: Results from the EUROPAIN Study2016Conference paper (Refereed)
    Abstract [en]

    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 

  • 31.
    Carbajal, Ricardo
    et al.
    Trousseau Hospital, Paris, France; Inserm U953, Paris, France; UPMC, Paris, France.
    Courtois, Emilie
    Trousseau Hospital, Paris, France; Inserm U953, Paris, France; UPMC, Paris, France.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Lagercrantz, Hugo
    Karolinska University Hospital, Stockholm, Sweden.
    Boyle, Elaine M
    University of Leicester, Leicester, UK.
    Sedation and analgesia for neonates in NICUs across the United Kingdom: The Europain survey.2014In: Archives of Disease in Childhood: Fetal and Neonatal Edition, ISSN 1359-2998, E-ISSN 1468-2052, Vol. 99 (Suppl 1), p. A62-A62, article id PC.77Article in journal (Refereed)
    Abstract [en]

    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 Units (NNUs). To date, these practices have not been studied on a large scale.

    Objective: To determine current clinical practices regarding the use of S/A drugs in NNUs across the United Kingdom (UK).

    Design/Methods: A European epidemiological observational study on clinical practices regarding bedside use of S/A collected data for all neonates in participating NNUs 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 NNU. Neonates up to 44 weeks gestation were included.

    Results: From February 2013 to May 2013, 66 UK NNUs collected data on 2691 eligible neonates. Of these, 713 received tracheal ventilation and 1978 had spontaneous breathing or non-invasive ventilation. The median (IQR) gestational age of ventilated neonates [32.1 (27.9-38.6)] was lower than for non-ventilated neonates [37.0 (34.1-39.7), p < 0.001]. Overall, more ventilated neonates [83.0% (n = 592)] received S/A drugs than non-ventilated neonates [7.4% (n = 147); p < 0.001]. The table shows S/A drugs used in ventilated neonates. fetalneonatal;99/Suppl_1/A62-b/T1T1T1 Abstract PC.77 Table   Ventilated and S/A, n = 592 Non-ventilated, and S/A n = 147 Fentanyl 105 (17.7%) 4 (2;7%) Midazolam 55 (9.3%) 3 (2.0%) Paracetamol 17 (2.9%) 92 (62.6%) Morphine 592 (91.6%) 44 (29.9%) Sufentanil 2 (0.3%) 0 Neuroblocker 352 (59.4%) 0 CONCLUSIONS: Most ventilated but few non-ventilated neonates receive S/A therapy in UK NNUs. Wide variations in rates of S/A use and drugs used exist among centres.

  • 32.
    Carbajal, Ricardo
    et al.
    Hôpital Armand-Trousseau, Paris, France.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Centre for health care sciences, Örebro University hospital, Örebro, Sweden.
    Courtois, Emilie
    Hôpital Armand-Trousseau, Paris, France.
    Anand, KJS
    University of Tennessee health Science Center, Memphis, USA.
    Pratiques de sédation et d’analgésie dans les unités de réanimation néonatale européennes2015In: Archives de pédiatrie, ISSN 0929-693X, E-ISSN 1769-664X, Vol. 22, no 5, Suppl. 1, p. 95-96Article in journal (Refereed)
  • 33.
    Carbajal, Ricardo
    et al.
    Emergency Department, Hôpital Armand-Trousseau, Paris, France.
    Eriksson, Mats
    Centre for health care sciences, Örebro University Hospital, Örebro, Sweden.
    Courtois, Emilie
    Emergency Department, Hôpital Armand-Trousseau, Paris, France.
    Andersen, Randi Dovland
    Telemark Hospital, Skien, Norway.
    Avila-Alvarez,, A.
    Complexo Hospitalario Universitario de a Coruña, a Coruña, Spain.
    Boyle, Elaine
    University of Leicester, Leicester, UK.
    Lago, Paola
    University of Padova, Padova, Italy.
    Sarafidis, K.
    Aristotle University of Thessaloniki, Thessaloniki, Greece.
    Simons, Sinno
    Erasmus MC Sophia Children’s Hospital, Rotterdam, Netherlands.
    Pölkki, Tarja
    Institute of Health Sciences, University of Oulu, Oulu, Finland.
    Ilmoja, M.L.
    Tallinn Children’s Hospital, Tallinn, Estonia.
    Van Overmeire, Bart
    Erasme Hospital, Bruxelles, Belgium.
    Berger, A.
    Univ. Klinik F. Kinder and Jugendheilkunde, Vienna, Austria.
    Papadouri, T.
    Arch. Makarios Hospital, Nicosia, Cyprus.
    Schroth, M.
    Cnopf’sche Kinderklinik, Nuremberg, Germany.
    Tameliene, R.
    Perinatal Center, Kaunas, Lithuania.
    Attard Montalto, S.
    Mater Dei Hospital, Msida, Malta.
    Dobrzanska, A.
    Children’s Memorial Health Institute, Warsaw, Poland.
    Matos, C.
    Maternidade Dr Alfredo Da Costa, Lisboa, Portugal.
    Europain Study group, Group author
    Europain Study Group, Europain Study Group, Paris, France.
    Bergqvist, Lena
    Karolinska University Hospital, Stockholm, Sweden.
    Lagercrantz, Hugo
    Karolinska University Hospital, Stockholm, Sweden.
    Anand, K.J.S.
    Department of Pediatrics Critical Care Medecine Division, University of Tennessee Health Science Center, Memphis, USA.
    Pain Assessment In Ventilated And Non-ventilated Neonates In Nicus Across Europe: European Pain Audit In Neonates (europain Survey)2014In: Archives of Disease in Childhood, ISSN 0003-9888, E-ISSN 1468-2044, Vol. 99, p. A68-A68Article in journal (Refereed)
    Abstract [en]

    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.

  • 34.
    Carbajal, Ricardo
    et al.
    Emergency Department, Hôpital Armand-Trousseau, Paris, France.
    Eriksson, Mats
    Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Courtois, Emilie
    Emergency Department, Hôpital Armand-Trousseau, Paris, France.
    Avila-Alvarez,, A.
    Complexo Hospitalario Universitario de a Coruña, a Coruña, Spain.
    Berger, A.
    Univ. Klinik F. Kinder and Jugendheilkunde, Vienna, Austria.
    Lago, Paola
    University of Padova, Padova, Italy.
    Van Overmeire, Bart
    Erasme Hospital, Bruxelles, Belgium.
    Papadouri, T.
    Arch. Makarios Hospital, Nicosia, Cyprus.
    Ilmoja, M.L.
    Tallinn Children’s Hospital, Tallinn, Estonia.
    Pölkki, Tarja
    Institute of Health Sciences, University of Oulu, Oulu, Finland.
    Schroth, M.
    Cnopf’sche Kinderklinik, Nuremberg, Germany.
    Sarafidis, K.
    Aristotle University of Thessaloniki, Thessaloniki, Greece.
    Tameliene, R.
    Perinatal Center, Kaunas, Lithuania.
    Attard Montalto, S.
    Mater Dei Hospital, Msida, Malta.
    Simons, Sinno
    Erasmus MC Sophia Children’s Hospital, Rotterdam, Netherlands.
    Andersen, Randi Dovland
    Telemark Hospital, Skien, Norway.
    Dobrzanska, A.
    Children’s Memorial Health Institute, Warsaw, Poland.
    Matos, C.
    Maternidade Dr Alfredo Da Costa, Lisboa, Portugal.
    Boyle, Elaine
    University of Leicester, Leicester, UK.
    E Europain Study group, Group author
    Europain Study Group, Europain Study Group, Paris, France.
    Lagercrantz, Hugo
    Karoliniska institutet, Stocholm, Sweden.
    Bergqvist, Lena
    Karolinska institutet.
    Anand, K.J.S.
    Department of Pediatrics Critical Care Medecine Division, University of Tennessee Health Science Center, Memphis, USA.
    Sedation And Analgesia For Neonates In Nicus Across Europe: The Europain Survey2014In: Archives of Disease in Childhood, ISSN 0003-9888, E-ISSN 1468-2044, Vol. 99, p. A64-A64Article in journal (Refereed)
    Abstract [en]

    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.

  • 35.
    Carbajal, Ricardo
    et al.
    Service des Urgences Pédiatriques, Faculté de Médecine, Hôpital Armand Trousseau, Paris, France; INSERM U1153, Faculté de Médecine, Paris, France; Faculté de Médecine, Université Pierre et Marie Curie, Paris, France.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Courtois, Emilie
    Service des Urgences Pédiatriques, Faculté de Médecine, Hôpital Armand Trousseau, Paris, France; INSERM U1153, Faculté de Médecine, Paris, France.
    Boyle, Elaine
    University of Leicester, Leicester, United Kingdom.
    Avila-Alvarez, Alejandro
    Complexo Hospitalario Universitario de A Coruña, Coruña, Spain.
    Dovland-Andersen, Randi
    Telemark Hospital, Skien, Norway.
    Sarafidis, Kosmas
    Neonatal Intensive Care Unit, Aristotle University of Thessaloniki, Thessaloniki, Greece.
    Pölkki, Tarja
    University of Oulu, Oulu, Finland.
    Matos, Cristina
    Maternidade Dr Alfredo da Costa, Lisbon, Portugal.
    Lago, Paola
    University of Padua, Padua, Italy.
    Papadouri, Thalia
    Archbishop Makarios Hospital, Nicosia, Cyprus.
    Attard Montalto, Simon
    Mater Dei Hospital, Msida, Malta.
    Ilmoja, Mari-Liis
    Tallinn Children's Hospital, Tallin, Estonia.
    Simons, Sinno
    Erasmus MC–Sophia Kinderziekenhuis, Rotterdam, Netherlands.
    Tameliene, Rasa
    Kaunas Perinatal Center, Lithuanian University of Health Sciences, Kaunas, Lithuania.
    van Overmeire, Bart
    Erasme Hospital, Brussels, Belgium.
    Berger, Angelika
    Medical University of Vienna, Vienna, Austria.
    Dobrzanska, Anna
    Children's Memorial Health Institute, Warsaw, Poland.
    Schroth, Michael
    Cnopf'sche Kinderklinik, Nürnberg, Germany.
    Bergqvist, Lena
    Karolinska Institute, Stockholm, Sweden.
    Lagercrantz, Hugo
    Karolinska Institute, Stockholm, Sweden.
    Anand, Kanvaljeet J. S.
    University of Tennessee, Memphis TN, USA.
    Sedation and analgesia practices in neonatal intensive care units (EUROPAIN): results from a prospective cohort study2015In: The Lancet Respiratory Medicine, ISSN 2213-2600, E-ISSN 2213-2619, Vol. 3, no 10, p. 796-812Article in journal (Refereed)
    Abstract [en]

    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. 

  • 36.
    Carbajal, Ricardo
    et al.
    Emergency Department, Trousseau Hospital, Paris, France.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Courtois, Emilie
    Trousseau Hospital, Paris, France.
    Dovland Andersen, Randi
    Telemark Hospital, Skien, Norway.
    Avila-Alvarez, A
    Complexo Hospitalario Universitario de A Coruña, A Coruña, Spain.
    Boyle, Elaine
    University of Leicester, Leicester, United Kingdom.
    Lago, Paola
    University of Padova, Padova, Italy.
    Sarafidis, K
    Aristotle University of Thessaloniki, Thessaloniki, Greece.
    Simons, Sinno
    Erasmus MC – Sophia Kinderziekenhuis, Rotterdam, Netherlands.
    Pölkki, Tarja
    Institute of Health Sciences University of Oulu, Oulu, Finland.
    Ilmoja, ML
    Tallinn Children's Hospital, Tallinn, Estonia.
    Van Overmeire, Bart
    Erasme Hospital, Bruxelles, Belgium.
    Berger, A
    Univ. Klinik f. Kinder und Jugendheilkunde, Vienna, Austria.
    Papadouri, T
    Arch. Makarios Hospital, Nicosia, Cyprus.
    Schroth, Michael
    Cnopf'sche Kinderklinik, Nuremberg, Germany.
    Tameliene, R
    Perinatal Center, Kaunas, Lithuania.
    Attard-Montalto, S
    Mater Dei Hospital, Msida, Malta.
    Dobrzanska, A
    Children's' Memorial Health Institute, Warsaw, Poland .
    Matos, C
    Maternidade Dr Alfredo da Costa, Lisboa, Portugal.
    Bergqvist, Lena
    Karolinska University Hospital, Stockholm, Sweden.
    Lagercrantz, Hugo
    Karolinska University Hospital, Stockholm, Sweden.
    Anand, KJS
    Department of Pediatrics, University of Tennessee Health Science Center, Memphis TN, USA.
    Pain Assessment in Ventilated and Non-Ventilated Neonates in NICUs across Europe: EUROpean Pain Audit in Neonates (EUROPAIN Survey)2014Conference paper (Refereed)
    Abstract [en]

    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 

  • 37.
    Chaplin, John
    et al.
    Göteborg Universitet, Göteborg, Sverige.
    Lysholm, Jack
    Hultgren, Björn
    Nilsson, Evalill
    Lindqvist, Hans
    Wenemark, Marika
    Dennhag, Inga
    Wuttge, Dirk
    Sandqvist, Gunnel
    Stackelberg, Martin
    Örebro kommun, Örebro, Sverige.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Blomberg, Karin
    Örebro University, School of Health Sciences.
    Wicksell, Rickard
    Ström, Elisabeth
    Holmström, Linda
    Karolinska institutet, stockholm, Sverige.
    Varför ska du använda PROMIS?: Nytt system för patientrapporterad utfallsmått2018Conference paper (Other academic)
    Abstract [sv]

    PROMIS är ett itembanksystem för hälso- och sjukvården. Syftet är att erbjuda moderna, patientrapporterade mått som kan användas för flertalet patientgrupper till en mycket låg kostnad och med ett nationellt supportsystem.

    En itembankär en modern form av elektronisk enkät som kan innehålla ett stort antal enkätfrågor. Ett datorprogram väljer ut de mest lämpade frågorna till varje person utifrån dennes svar på föregående frågor, på så sätt enkäten individanpassas.

  • 38.
    Dahlberg, Karuna
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Jaensson, Maria
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Nilsson, Ulrica
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    The development of a smartphone app for self-reporting postoperative recovery after day surgery2015In: 3rd International Conference for PeriAnaesthesia Nurses ICPAN 2015, 2015Conference paper (Other academic)
  • 39.
    Dahlberg, Karuna
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Jaensson, Maria
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Nilsson, Ulrica
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden.
    Utveckling av en smartphoneapp för patientrapporterad postoperativ återhämtning efter dagkirurgi2015Conference paper (Other academic)
    Abstract [sv]

    Introduktion: Dagkirurgi har expanderat avsevärt under de senaste årtiondena, i Sverige genomförs nästan 2 miljoner dagkirurgiska operationer per år. Dagkirurgiska operationer är en säker och beprövad metod, men upp till 30 % av patienterna upplever postoperativa komplikationer så som smärta, illamående och kräkningar, huvudvärk, ryggsmärta, ont i halsen, heshet, urinretention, frusenhet, och läpp-, mun- eller nervskador. En del patienter känner sig utelämnade, ensamma och osäkra på vilka symtom som är att vänta då det inte finns någon systematisk uppföljning av patientens postoperativa återhämtning.

    Syfte: Att utveckla och testa en webbaserad mobilapplikation där vuxna patienten som genomgått dagkirurgi själva rapporterar symtom relaterade till den postoperativa återhämtningen.

    Metod: Ett tvärvetenskapligt team bildades med forskare från omvårdnadsvetenskap och informatik. Tillsammans arbetade forskarna med patienter som genomgått dagkirurgisk operation och ett It-företag, för att anpassa frågorna i den svenska versionen av formuläret Quality of Recovery (QoR) till en webbaserad mobilapplikation för olika typer av smartphones, gällande frågornas formulering, svarsalternativ, layout och navigering.

    Resultat: Den svenska webbaserade versionen av QoR (SwQoR) innehåller 31 frågor som besvaras på en horisontel visuell analog skala. Passande layout för smartphone så som optimala färger och textstorlek fastställdes. Tekniska frågor kring navigation och appens funktion på olika smartphones löstes.

    Diskussion: Slutsats: SwQoR i en app för smartphone är användarvänlig då den är lätt att förstå och lätt att navigera.

  • 40.
    Dahlberg, Karuna
    et al.
    Örebro University, School of Health Sciences.
    Jaensson, Maria
    Örebro University, School of Health Sciences.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Nilsson, Ulrica
    Örebro University, School of Health Sciences.
    Evaluation of the Swedish Web-Version of Quality of Recovery (SwQoR): Secondary Step in the Development of a Mobile Phone App to Measure Postoperative Recovery2016In: JMIR Research Protocols, ISSN 1929-0748, E-ISSN 1929-0748, Vol. 5, no 3, article id e192Article in journal (Refereed)
    Abstract [en]

    Background: The majority of all surgeries are performed on an outpatient basis (day surgery). The Recovery Assessment by Phone Points (RAPP) app is an app for the Swedish Web-version of Quality of Recovery (SwQoR), developed to assess and follow-up on postoperative recovery after day surgery.

    Objectives: The objectives of this study are (1) to estimate the extent to which the paper and app versions of the SwQoR provide equivalent values; (2) to contribute evidence as to the feasibility and acceptability of a mobile phone Web-based app for measuring postoperative recovery after day surgery and enabling contact with a nurse; and (3) to contribute evidence as to the content validity of the SwQoR.

    Methods: Equivalence between the paper and app versions of the SwQoR was measured using a randomized crossover design, in which participants used both the paper and app version. Feasibility and acceptability was evaluated by a questionnaire containing 16 questions regarding the value of the app for follow-up care after day surgery. Content validity evaluation was based on responses by day surgery patients and the staff of the day surgery department.

    Results: A total of 69 participants completed the evaluation of equivalence between the paper and app versions of the SwQoR. The intraclass correlation coefficient (ICC) for the SwQoR was .89 (95% CI 0.83-0.93) and .13 to .90 for the items. Of the participants, 63 continued testing the app after discharge and completed the follow-up questionnaire. The median score was 69 (inter-quartile range, IQR 66-73), indicating a positive attitude toward using an app for follow-up after day surgery. A total of 18 patients and 12 staff members participated in the content validity evaluation. The item-level content validity index (I-CVI) for the staff group was in the 0.64 to 1.0 range, with a scale-level content validity index (S-CVI) of 0.88. For the patient group, I-CVI was in the range 0.30 to 0.92 and S-CVI was 0.67. The content validity evaluation of the SwQoR, together with three new items, led to a reduction from 34 to 24 items.

    Conclusions: Day surgery patients had positive attitudes toward using the app for follow-up after surgery, and stated a preference for using the app again if they were admitted for a future day surgery procedure. Equivalence between the app and paper version of the SwQoR was found, but at the item level, the ICC was less than .7 for 9 items. In the content validity evaluation of the SwQoR, staff found more items relevant than the patients, and no items found relevant by either staff or patients were excluded when revising the SwQoR.

  • 41.
    Dahlberg, Karuna
    et al.
    Örebro University, School of Health Sciences.
    Jaensson, Maria
    Örebro University, School of Health Sciences.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Nilsson, Ulrica
    Örebro University, School of Health Sciences.
    RAPP, en IT-lösning för uppföljning efter dagkirurgi2016Conference paper (Refereed)
  • 42.
    Dahlberg, Karuna
    et al.
    Örebro University, School of Health Sciences.
    Jaensson, Maria
    Örebro University, School of Health Sciences.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Nilsson, Ulrica
    Örebro University, School of Health Sciences.
    RAPP, en IT-lösning för uppföljning efter dagkirurgi2017Conference paper (Other academic)
  • 43.
    Dahlberg, Karuna
    et al.
    Örebro University, School of Health Sciences.
    Jaensson, Maria
    Örebro University, School of Health Sciences.
    Eriksson, Mats
    Örebro University, School of Health Sciences. Örebro University Hospital.
    Nilsson, Ulrica
    Örebro University, School of Health Sciences.
    The process of development and testing of an IT-solution for measuring postoperative recovery2017Conference paper (Refereed)
  • 44.
    Dahlberg, Karuna
    et al.
    Örebro University, School of Health Sciences.
    Jaensson, Maria
    Örebro University, School of Health Sciences.
    Nilsson, Ulrica
    Örebro University, School of Health Sciences.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Odencrants, Sigrid
    Örebro University, School of Health Sciences.
    Holding It Together - Patients' Perspectives on Postoperative Recovery When Using an e-Assessed Follow-Up: Qualitative Study2018In: JMIR mhealth and uhealth, E-ISSN 2291-5222, Vol. 20, no 5, article id e10387Article in journal (Refereed)
    Abstract [en]

    Background: There is an emerging trend to perform surgeries as day surgery. After a day surgery, most of the recovery period takes place at home, and patients are responsible for their own recovery. It has been suggested that electronic health (eHealth) technologies can support patients in this process. A mobile app has recently been developed to assess and follow up on postoperative recovery after a day surgery.

    Objective: The aim of this study was to explore experiences associated with postoperative recovery after a day surgery in patients using a mobile app to assess the quality of their recovery.

    Methods: This is a qualitative interview study with an explorative and descriptive design. Participants were recruited from 4 different day surgery units in different parts of Sweden. The study included 18 participants aged >17 years who had undergone day surgery and used the Recovery Assessment by Phone Points, a mobile app for follow-up on postoperative recovery after day surgery. Participants were purposively selected to ensure maximum variation. Semistructured individual interviews were conducted. Data were analyzed using thematic analysis.

    Results: A total of two themes and six subthemes emerged from the data: (1) the theme Give it all you’ve got with the subthemes Believing in own capacity, Being prepared, and Taking action, where participants described their possibilities of participating and themselves contributing to improving their postoperative recovery; and (2) the theme The importance of feeling safe and sound with the subthemes Feeling safe and reassured, Not being acknowledged, and Not being left alone, which describe the importance of support from health care professionals and next of kin.

    Conclusions: It is important that patients feel safe, reassured, and acknowledged during their postoperative recovery. They can achieve this themselves with sufficient support and information from the health care organization and their next of kin. Using a mobile app, both for assessment and to enable contact with the day surgery unit during the postoperative recovery period, can improve care and create a feeling of not being alone after surgery. We propose that postoperative recovery starts in the prerecovery phase when patients prepare for their recovery to get the best possible outcome from their surgery.

  • 45.
    Dahlberg, Karuna
    et al.
    Örebro University, School of Health Sciences.
    Jaensson, Maria
    Örebro University, School of Health Sciences.
    Nilsson, Ulrica
    Örebro University, School of Health Sciences.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Odencrants, Sigrid
    Örebro University, School of Health Sciences.
    Holding it together: patients’ perspectives on postoperative recovery when using an e-assessed follow-upManuscript (preprint) (Other academic)
  • 46.
    Ericson, Jenny
    et al.
    Högskolan Dalarna, Falun, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Hellström-Westas, Lena
    Uppsala universitet, Uppsala, Sweden.
    Flacking, Renée
    Högskolan Dalarna, Falun, Sweden.
    Risk Factors for Not Breastfeeding at Discharge in Mothers of Preterm Infants2016Conference paper (Refereed)
    Abstract [en]

    Background: Breastfeeding has nutritional, cognitive and immunological advantages compared to formula feeding1. Breastfeeding rates among preterm infants are lower than in term infants2. The aim was to investigate risk factors for not breastfeeding at discharge in mothers of preterm infants.

    Method: In this registry study, data on maternal and infant health were obtained from the Swedish Neonatal Quality Register (SNQ). The study included data on 29.445 preterm infants (<37 gestational weeks, gw) and their mothers who were discharged to home and where information on breastfeeding was available 2004-2013.

    Results: During the study period (2004-2013), there was a statistical significant increase in the proportion of mothers with a notification of any illness (15% to 29%), mental illness (2% to 6%), administration of antenatal corticosteroids (31% to 34%) and infants born small for age (4% to 9%). Factors that had a statistical significant adjusted odds ratios for not breastfeeding at discharge were; notification of any illness in mother 1.7 (1.5-1.8), mental illness 1.9 (1.6-2.2), gestational diabetes 1.8 (1.4-2.2), administration of antenatal corticosteroids 1.1 (1.0-1.2), cesarean sectio 1.6 (1.5-1.8), multiple births 1.3 (1.2-1.4), infants gestational week at birth: 22-27 gw 5.6 (4.8-6.5), 28-31 gw 2.6 (2.3-3.0) (gw 32-36 ref.), small for age 1.2 (1.1-1.4), and neonatal illness 1.4 (1.2-1.6).

    Conclusions: The strongest risk factors for not breastfeeding at discharge were low gestational weeks at birth, maternal illnesses and caesarean sectio. These findings are important and present challenges to health care to improve breastfeeding outcomes in these vulnerable groups of mothers and infants.

    References: 1. Victora CG, Bahl R, Barros AJD, França GVA, Horton S, Krasevec J, et al. Breastfeeding in the 21st century: epidemiology, mechanisms, and lifelong effect. The Lancet.387(10017):475-490. 2. Flacking R, Nyqvist KH, Ewald U. Effects of socioeconomic status on breastfeeding duration in mothers of preterm and term infants. European journal of public health. 2007;17(6):579-584.

  • 47.
    Ericson, Jenny
    et al.
    Högskolan Dalarna, Falun, Sweden.
    Eriksson, Mats
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Hellström-Westas, Lena
    Uppsala universitet, Uppsala, Sweden.
    Hagberg, Lars
    Örebro University Hospital. Centre for Health Care Sciences, Örebro University Hospital, Örebro, Sweden.
    Hoddinott, Pat
    University of Stirling, Stirling, UK.
    Flacking, Renée
    Högskolan Dalarna, Falun, Sweden.
    The effectiveness of proactive telephone support provided to breastfeeding mothers of preterm infants: study protocol for a randomized controlled trial2013In: BMC Pediatrics, ISSN 1471-2431, E-ISSN 1471-2431, Vol. 13, p. 1-9, article id 73Article in journal (Refereed)
    Abstract [en]

    Background:

    Although breast milk has numerous benefits for infants’ development, with greater effects in those born preterm (at < 37 gestational weeks), mothers of preterm infants have shorter breastfeeding duration than mothers of term infants. One of the explanations proposed is the difficulties in the transition from a Neonatal Intensive Care Unit (NICU) to the home environment. A person-centred proactive telephone support intervention after discharge from NICU is expected to promote mothers’ sense of trust in their own capacity and thereby facilitate breastfeeding.

    Methods/design:

    A multicentre randomized controlled trial has been designed to evaluate the effectiveness and cost-effectiveness of person-centred proactive telephone support on breastfeeding outcomes for mothers of preterm infants. Participating mothers will be randomized to either an intervention group or control group. In the intervention group person-centred proactive telephone support will be provided, in which the support team phones the mother daily for up to 14 days after hospital discharge. In the control group, mothers are offered a person-centred reactive support where mothers can phone the breastfeeding support team up to day 14 after hospital discharge. The intervention group will also be offered the same reactive telephone support as the control group. A stratified block randomization will be used; group allocation will be by high or low socioeconomic status and by NICU. Recruitment will be performed continuously until 1116 mothers (I: 558 C: 558) have been included. Primary outcome: proportion of mothers exclusively breastfeeding at eight weeks after discharge. Secondary outcomes: proportion of breastfeeding (exclusive, partial, none and method of feeding), mothers satisfaction with breastfeeding, attachment, stress and quality of life in mothers/partners at eight weeks after hospital discharge and at six months postnatal age. Data will be collected by researchers blind to group allocation for the primary outcome. A qualitative evaluation of experiences of receiving/providing the intervention will also be undertaken with mothers and staff.

    Discussion:

    This paper presents the rationale, study design and protocol for a RCT providing person-centred proactive telephone support to mothers of preterm infants. Furthermore, with a health economic evaluation, the cost-effectiveness of the intervention will be assessed. 

  • 48.
    Ericson, Jenny
    et al.
    Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden; Centre for Clinical Research Dalarna, Uppsala University, Falun, Sweden; Department of Paediatrics, Falu Hospital, Falun, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Hellström-Westas, Lena
    Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
    Hoddinott, Pat
    Nursing, Midwifery and Allied Health Professionals Research Unit, University of Stirling, Stirling, UK.
    Flacking, Renée
    School of Education, Health and Social Studies, Dalarna University, Falun, Sweden.
    Proactive telephone support provided to breastfeeding mothers of preterm infants after discharge: a randomised controlled trial2018In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 107, no 5, p. 791-798Article in journal (Refereed)
    Abstract [en]

    AIM: The aim was to evaluate the effectiveness of proactive telephone support provided to breastfeeding mothers of preterm infants after discharge from neonatal intensive care units (NICU).

    METHODS: Between March 2013 and December 2015, a randomised controlled trial was conducted at six NICUs across Sweden. At each NICU, a breastfeeding support team recruited, randomised and delivered the support to participating mothers. The intervention group received a daily proactive telephone call up to 14 days after discharge from the support team. The control group could initiate telephone contact themselves. Primary outcome was exclusive breastfeeding eight weeks after discharge. Secondary outcomes were maternal satisfaction with breastfeeding, attachment, quality of life and parental stress.

    RESULTS: In total, 493 mothers were randomised, 231 to intervention group and 262 to control group. There were no differences between the groups for exclusive breastfeeding, odds ratio 0.96, 95% CI 0.66-1.38, nor for maternal satisfaction with breastfeeding, attachment or quality of life. The intervention group reported significantly less parental stress than the controls, t=2.44, 95% CI 0.03-0.23, effect size d=0.26.

    CONCLUSION: In this trial, proactive telephone support was not associated with increased exclusive breastfeeding prevalence eight weeks following discharge. However, intervention group mothers showed significantly lower parental stress.

  • 49.
    Ericson, Jenny
    et al.
    Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden; Centre for Clinical Research Dalarna, Falun, Sweden; Department of Paediatrics, Falu Hospital, Falun, Sweden; School of Education, Health and Social Studies, Dalarna University, Falun, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Hoddinot, Pat
    Nursing, Midwifery and Allied Health Professionals Research Unit, University of Stirling, Stirling, UK.
    Hellström-Westas, Lena
    Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
    Flacking, Renée
    School of Education, Health and Social Studies, Dalarna University, Falun, Sweden.
    Breastfeeding and risk for ceasing in mothers of preterm infants: Long‐term follow‐up2018In: Maternal and Child Nutrition, ISSN 1740-8695, E-ISSN 1740-8709, Vol. 14, no 4, article id e12618Article in journal (Refereed)
    Abstract [en]

    Breastfeeding is challenging for mothers of preterm infants. The aim of this paper is to describe risk factors for ceasing breastfeeding and methods of feeding until 12 months postnatal age in mothers who breastfed their preterm infants at discharge from neonatal intensive care units (NICUs). The data come from a randomised controlled trial, which evaluated the effectiveness on exclusive breastfeeding at 8 weeks of proactive telephone support compared with reactive support offered to mothers of preterm infants following discharge from NICU. Six NICUs across Sweden randomised a total of 493 mothers. We used regression and survival analyses to assess the risk factors for ceasing breastfeeding and the long‐term outcomes of the intervention. The results showed that 305 (64%) of the infants were breastfed at 6 months and 49 (21%) at 12 months. Partial breastfeeding at discharge, low maternal educational level, and longer length of stay in the NICU increased the risk for ceasing breastfeeding during the first 12 months. Furthermore, the Kaplan–Meier analysis showed that the proportion of mothers who ceased breastfeeding did not differ between the intervention (n = 231) and controls (n = 262) during the first 12 months (log‐rank test p = .68). No difference was found between groups on method of feeding. More than 85% of the infants were fed directly at the breast. These findings provide important insights for health professionals who are supporting mothers of preterm infants to breastfeed long term. Registered in www.clinicaltrials.gov (NCT01806480).

  • 50.
    Ericson, Jenny
    et al.
    Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden; Centre for Clinical Research Dalarna, Falun, Sweden; Department of Pediatrics, Falun Hospital, Falun, Sweden.
    Flacking, Renée
    School of Education, Health and Social Studies, Dalarna University, Falun, Sweden.
    Hellström-Westas, Lena
    Department of Women’s and Children’s Health, Uppsala University, Uppsala, Sweden.
    Eriksson, Mats
    Örebro University, School of Health Sciences.
    Changes in the prevalence of breast feeding in preterm infants discharged from neonatal units: a register study over 10 years2016In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 6, no 12, article id e012900Article in journal (Refereed)
    Abstract [en]

    Objective: There are indications that the prevalence of exclusively breastfed preterm infants is decreasing in Sweden. The objective was to investigate trends in exclusive breast feeding at discharge from Swedish neonatal units and associated factors in preterm infants.

    Design, setting and participants: This is a register study with data from the Swedish Neonatal Quality Register. Data from 29 445 preterm infants (gestational age (GA) <37 weeks) who were born during the period 2004–2013 were retrieved. Data included maternal, perinatal and neonatal characteristics. Data were analysed for the whole population as well as for 3 GA groups.

    Results: From 2004 to 2013, the prevalence of exclusive breast feeding decreased, in extremely preterm (GA 22–27 weeks) from 55% to 16%, in very preterm (GA 28–31 weeks) from 41% to 34% and in moderately preterm infants (GA 32–36 weeks) from 64% to 49%. The decline was statistically significant (p<0.001) in all 3 GA groups. This decline remained significant when adjustments were made for factors negatively associated with exclusive breast feeding andwhich became more prevalent during the study period, that is, small for GA (all groups) and maternal mental illness (very preterm and moderately preterm infants).

    Conclusions: In the past 10 years, Sweden has experienced a lower rate of exclusive breast feeding in preterm infants, especially in extremely preterm infants. The factors analysed in this study explain only a small proportion of this decline. The decline in exclusive breast feeding at discharge from neonatal units raises concern and present challenges to the units to support and promote breast feeding.

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