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  • Gabrielsson, Hanna, 1977- (författare)
  • Adults with Spina bifida : voices from everyday life and exploration of living conditions
  • 2020
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • The overall aim of this thesis was to generate knowledge about living with Spina bifida, by mapping the condition and together with the adults with Spina bifida explore their living conditions and experiences in everyday life. Methods Study I was a quantitative study with a cross-sectional design. In Study II, individual experiences of daily life were explored by deep interviews using a reflective lifeworld approach. Study III had a participatory approach including five members of a photovoice group who met for eight sessions. Photographs taken by the members served as a starting point for the dialogue about what was of interest in their daily life. A narrative analysis was conducted by the researchers, incorporating the analysis the group did together. Study IV focused on alignment with the methodology in which photovoice is grounded. By returning to the ideological cornerstones of photovoice, the empirical experiences from Study III and examples from the literature were elaborated through processes within photovoice. The findings show that those adults with Spina bifida who were >46 years old had less complex medical conditions and better physical and cognitive functions, and had attained a higher level of education. The main theme in Study II was presented as “The contradictory path towards wellbeing in daily life.” In Study III, the members’ experiences in everyday life showed that many solutions offered by society were “An adaptation for us, but it works for no one.” The findings are further presented under three themes: “Accessibility – a never-ending project,” “Tensions of a normative view” and “Power to influence.” By focusing on action and narrative in Study IV, it is shown that dialogue, action, and interaction are important aspects of using photovoice. In conclusion, not all adult persons receive the support they need in everyday life, something future generations of adult persons with Spina bifida may have a higher need for. The stories and experiences of adults with Spina bifida in this thesis paint a history of not being asked, concerning their own situation. This shows that there is insufficient integration of the persons’ experiences in society’s efforts to plan for, and support, these individuals. The photovoice method was feasible for this group, providing opportunity for being part of dialogue, action, and interaction.
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  • Dahlberg, Karuna, 1979- (författare)
  • e-Assessed follow-up of postoperative recovery : developement, evaluation and patient experiences
  • 2018
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • The majority of all surgeries are performed as day surgery. After discharge, patients are expected to take responsibility for their postoperative recovery themselves. Recovery Assessment by Phone Points (RAPP) is an e-assessment developed for assessing and providing follow-up on postoperative recovery, which includes the Swedish web-version of the Quality of Recovery questionnaire (SwQoR). It also enables the patient to get in contact with the day surgery unit. The overall aim of this thesis was to further develop and evaluate a systematic follow-up of postoperative recovery using a mobile app in adult persons undergoing day surgery, as well as to describe their experiences of postoperative recovery when using the mobile app. Study I: This study included three steps. Equivalence testing between the paper and app versions of the SwQoR showed agreement (n=69). The feasibility and acceptability evaluation showed that participants (n=63) were positive towards using a mobile phone application during postoperative recovery. Content validity of the SwQoR reduced the original 31 items to 24. Studies II and III: A multicentre, two-group, parallel, single-blind randomized controlled trial including 997 participants was conducted to investigate the effect of e-assessment on postoperative recovery (II) and cost-effectiveness (III) in a RAPP group compared with a control group. The RAPP group reported significantly better quality of postoperative recovery on postoperative days 7 and 14 compared with the control group. Moreover, RAPP may be cost-effective as it provides low-cost care. Study IV: Explored experience of postoperative recovery in participants using a mobile phone app during their postoperative recovery. Qualitative inductive semi-structured interviews (n=18) were performed. Findings showed that feeling safe is important during postoperative recovery. This feeling can be created by patients themselves, but sufficient support and information from health care and next of kin is needed. Overall, this thesis showed positive results for RAPP, suggesting that RAPP is a solution that may benefit patients after day surgery.
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  • Poikonen, Hanna, et al. (författare)
  • InMotion – Mixed physical exercise with creative movement as an intervention for people with schizophrenia
  • 2023
  • Konferensbidrag (refereegranskat)abstract
    • Schizophrenia (SCZ) is among the world’s top ten causes of long-term disability (World Health Organization, 2004). The major symptoms of SCZ include hallucinations, delusions, affective flattening, and cognitive impairment, and their treatment with antipsychotic medications is far from optimal.Creative and body awareness training (dance/movement therapy, body psychotherapy) and physical training (aerobic and strength training) improve SCZ symptoms (e.g Martin et al., 2016, 2017; Girdler et al., 2019; Millman et a., 2021). In our novel intervention, we bring together creativity and self-awareness with physical training. The 12-week 24-session intervention with 30 participants (Figure 1) includes components like visualization, cardio and strength training, and social interaction. We will measure the impact with standardized clinical questionnaires, EEG-fNIRS, motion capture, and cognitive, affective, and physical tests. We expect our intervention to improve the quality of life and negative symptoms of SCZ by balancing the brain functions and bodily state related to self-awareness, social interaction, and physical fitness. In my talk, I will cover brain dysfunctions related to self-awareness in SCZ (Ferri et al., 2012; Ebisch et al., 2013) and describe the scientific rationale for each component included in our novel intervention (e.g. Lee et al., 2015; Firth et al., 2017).
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  • Poikonen, Hanna, et al. (författare)
  • “InMotion”—Mixed physical exercise program with creative movement as an intervention for adults with schizophrenia : study protocol for a randomized controlled trial
  • 2023
  • Ingår i: Frontiers in Human Neuroscience. - : Frontiers Media S.A.. - 1662-5161. ; 17
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Schizophrenia is among the world’s top 10 causes of long-term disability with symptoms that lead to major problems in social and occupational functioning, and in self-care. Therefore, it is important to investigate the efficacy of complementary treatment options for conventionally used antipsychotic medication, such as physical training, and psychosocial interventions.Objective: To combine aerobic and strength training with cognitive, emotional and social stimulation in one intervention for people with schizophrenia and test the feasibility and effects of this intervention.Methods: The study is a mixed-method randomized controlled trial to evaluate the effects of a 12-week intervention for adults with schizophrenia. The treatment group (30 participants) will receive the intervention in addition to standard care and the control group (30 participants) only standard care. The intervention consists of 24 biweekly sessions with a duration of 60 min. The pre-test (weeks from 4 to 2 prior to the intervention) and post-test (week 12) include clinical measure (PANSS), quality of life, social performance, movement quantity, brain function and eye tracking measures. In addition, a treatment subgroup of 12–15 participants and their family member or other next of kin will complete a qualitative interview as a part of their post-test. Two follow-up tests, including clinical, quality of life, brain function and eye tracking will be made at 6 and 12 months from the completion of the intervention to both study groups. The primary outcome is change in negative symptoms. Secondary outcome measures include general and positive symptoms, quality of life, social performance, movement quantity, brain function and eye tracking. Explorative outcome includes patient and family member or other next of kin interview.Results: Pilot data was collected by June 2023 and the main data collection will begin in September 2023. The final follow-up is anticipated to be completed by 2026.Conclusion: The InMotion study will provide new knowledge on the feasibility, efficacy, and experiences of a novel intervention for adults with schizophrenia. The hypothesis is that regular participation in the intervention will reduce clinical symptoms, normalize physiological measures such as brain activation, and contribute to new active habits for the participants.
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  • Ullsten, Alexandra, 1967- (författare)
  • Singing, sharing, soothing : Family-centred music therapy during painful procedures in neonatal care
  • 2019
  • Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • To sing is to communicate. The soothing, comforting and emotional regulating properties of a lullaby are well-known cross-culturally and historically. This doctoral thesis addresses neonatal pain management from a novel and groundbreaking perspective, studying the efficacy of live music therapy on infants’ pain responses during venepuncture. New research is needed to advance the non-pharmacological interventions in neonatal pain care, and neonatal music therapy (NICU MT) offers active methods to involve the parents in pain management. The doctoral thesis includes two empirical and two theoretical articles. In paper I, preterm and term infants (n=38) were subjected to venepuncture with and without live lullaby singing, in a randomised order with a crossover design. Parent-preferred lullabies were performed live by a music therapy student and standard care was provided for all infants. The results did not show any significant pain-alleviating effects, however, the live singing was not stressful for the infants.In paper II, the microanalysis disclosed that live lullaby singing is a communicative reciprocal intervention that also applies to premature infants during painful procedures. Live lullaby singing is a tool suitable as a means to optimise the homeostatic mechanisms. The results from the theoretical papers III and IV are further developed and synthesised in the thesis into a theoretical strategy; The Nordic NICU MT pain management strategy, featuring the parents and their singing voices as mediators for pain relief. The role of the music therapist in neonatal pain management is as a facilitator and an educator for the parents. Coaching parents to better meet their infant’s attachment needs during a painful procedure may lead to more efficacious interventions. The biopsychosocial parental infant-directed singing is presumably an applicable parent-driven non-pharmacological intervention, which promotes pain relief and attachment formation during painful procedures. Neonatal music therapy is still in its infancy in the Nordic countries, but the societal and healthcare contexts afford important prerequisites to further develop NICU MT as a truly family-centred approach. This doctoral thesis will hopefully contribute to the important interdisciplinary endeavour worldwide of involving and integrating parents in neonatal pain management.
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  • Johansson, Sara, et al. (författare)
  • Nytt forskningsprojekt om medicinsk häfta
  • 2023
  • Ingår i: Sårjournalen. - : Sårsjuksköterskor i Sverige. - 2003-8054. ; :1, s. 12-12
  • Forskningsöversikt (populärvet., debatt m.m.)
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  • Nilsson, Ulrica, 1960-, et al. (författare)
  • Psychometric evaluation of the Post Hospitalization Behavior Questionnaire for Ambulatory Surgery and postoperative behavior and recovery inchildren undergoing tonsil surgery
  • 2019
  • Ingår i: Journal of Perioperative Practice. - : Harrogate : Association for Perioperative Practice. - 1750-4589 .- 2515-7949. ; 29:4, s. 94-101
  • Tidskriftsartikel (refereegranskat)abstract
    • The study comprised a prospective, comparative cross-sectional survey in 143 (of 390) children undergoing tonsil surgery. Parents answered the Post Hospitalization Behavior Questionnaire for Ambulatory Surgery (PHBQ-AS), and children answered the questionnaire Postoperative Recovery in Children (PRiC). The PHBQ-AS had positive correlation with the PRiC and with general health. On day 10 after surgery, up to one-third of the children still reported physical symptoms (PRiC). No gender or age differences concerning the items of behavior (PHBQ-AS) were found. The quality of postoperative recovery (PRiC) in girls was lower, with higher levels of nausea, dizziness, coldness, and headache compared to the boys. Children <6 years of age reported higher levels of dizziness and lower sleep quality and lower general health.
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  • Svanberg, Mikael, 1958- (författare)
  • Psykologiska faktorer vid rehabilitering av patienter med långvarig smärta
  • 2022
  • Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
    • Chronic pain is common and a burden for both the individual and society. In chronic pain, the pain has lost its function as a warning system and instead has become a disease in itself. Neurobiologically, several areas of the brain are involved, but to gain a broader understanding of the long-term pain, the biopsychosocial model is the best starting point. In line with thisand many scientific studies since the late 90's, psychological factors have proven to be an important factor in the development and maintenance of chronic pain. Interdisciplinary multimodal rehabilitation programs (IMMRP) are the treatment currently given to patients with long-term pain in the specialized pain rehabilitation. When the IMMRP has been reviewed, patients have shown improvement over time, but it is not possible to say whether it is the IMMRP or which parts of the IMMRP that explain the improvement (1).In this licentiate thesis, I have studied the importance of psychological factors in the rehabilitation of patients with chronic pain. This has been done in three studies reported in three published articles. All the studies have been close to the clinic and have been performed on patients in the specialized pain rehabilitation care in Sweden.The first article studied the effect of the multimodal investigation (MMI). More specifically, it was investigated whether alliance building and feelings of validation in patients with chronic pain affected their acceptance of pain, pain management, catastrophic thoughts, and depression. This was performed in a "single case" study on six patients in MMI. The results showed that despite good alliance and sense of validation, acceptance increased only in one patient and no improvement was seen in pain management, catastrophizing, and depression.In study two, subgroups of patients with chronic pain were studied. The subgroup analysis showed that patients referred for IMMRP could be divided into groups with different profiles regarding emotional problems and pain avoidance. These profiles were important for how the patients relatedto their pain and the results of IMMRP. The results of the study can increase the understanding of which patients should be selected for IMMRP and how the treatment can be adapted to the patients' needs.In study three, opioid treatment in patients with long-term pain who were referred to IMMRP was studied. The result showed that opioid prescribing was common and 55% of the participants received at least one prescription for opioids during the two years after the first assessment. It also turns out that there was a connection between individual patient characteristics (especially pain and depressive symptoms) and opioid prescription. Understanding how individual patient characteristics relate to prescribing patterns and long-term opioid use is an important prerequisite for managing opioid prescribing and the basics for preventing overuse. Overall, this licentiate thesis shows that MMU has no therapeutic effect on patients with long-term pain. It also shows that patients with chronic pain are a heterogeneous group that can be divided into subgroups based on psychological characteristics. The subgroups, in turn, had different ways of managing their pain and absorbing the treatment offered. In addition, it emerged that opioid prescribing was common among patients with long-term pain and that there was a link between opioids and patient characteristics.
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  • Torsy, Tim, et al. (författare)
  • Accuracy of the corrected nose-earlobe-xiphoid distance formula for determining nasogastric feeding tube insertion length in intensive care unit patients : A prospective observational study
  • 2020
  • Ingår i: International Journal of Nursing Studies. - : Elsevier. - 0020-7489 .- 1873-491X. ; 110
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: As nasogastric feeding tube insertion is a frequently applied, non-risk-free nursing technique, a high level of evidence-based nursing care is required. Little evidence is available regarding the accurate determination of the insertion length of nasogastric feeding tubes. The method of using the nose-earlobe-xiphoid distance as measurement is inadequate and not supported by evidence. Findings from a recent randomized trial led to an alternative calculation: the corrected nose-earlobe-xiphoid distance formula: (nose-earlobe-xiphoid distance × 0.38696) + 30.37 + 6 cm.Objectives: To test the accuracy of the corrected nose-earlobe-xiphoid distance formula for determining the required nasogastric feeding tube insertion length in adults admitted on an intensive care unit and to investigate the probability to successfully obtain gastric aspirate for pH measurement.Design: Prospective, single‐centre observational study.Participants and methods: Adult intensive care unit patients in a general hospital (N=218) needing a small-bore nasogastric feeding tube were included between March and September 2018. Correct tip positioning was defined as a tube tip located > 3 cm under the lower esophageal sphincter. Tip positioning was verified using X-ray.Results: All nasogastric feeding tube tips were correctly positioned > 3 cm under the lower esophageal sphincter. The chance of successfully obtaining gastric aspirate within 2 hours after placement of the tube was 77.9%.Conclusions: With all tips positioned > 3 cm in the stomach and zero tubes migrating back into the oesophagus, the corrected nose-earlobe-xiphoid distance formula can be considered a more accurate method to determine nasogastric feeding tube insertion length.
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  • Torsy, Tim, et al. (författare)
  • Factors associated with insufficient nasogastric tube visibility on X-ray : a retrospective analysis
  • 2021
  • Ingår i: European Radiology. - : Springer. - 0938-7994 .- 1432-1084. ; 31:4, s. 2444-2450
  • Tidskriftsartikel (refereegranskat)abstract
    • Objectives: Chest X-ray imaging is frequently used for verifying the position of a blindly inserted nasogastric tube. A high-quality X-ray increases the likelihood of conclusive visibility of tube tip positioning, thus avoiding risks due to a misplaced tube (e.g., pulmonary intubation, pneumothorax, small bowel insertion). Therefore, this study aims to determine patient-related and environmental factors affecting the visibility of nasogastric tubes on X-ray in adults.Methods: A retrospective descriptive analysis of routinely collected clinical datawas performed on all included patients (N = 215) from a prospective randomized trial in a general hospital. A chest X-ray was taken of each patient needing a nasogastric feeding tube, after which visibility and positioning of the tube on X-ray was independently evaluated by 3 radiologists.Results: In 14.9% (n = 32) of all patients, image quality was insufficient, so no conclusive visibility of nasogastric tube positioning could be found. A patient-related predictor regression model (sex, age, body mass index) explained 21% of variance for an insufficient visibility of the nasogastric tube (Nagelkerke R2 = 0.21). An environmental factor regression model demonstrates a guidewire being inside the tube or not during X-ray as a predictor for a conclusive visibility on X-ray.Conclusions: High body mass index, male sex, and the absence of a guidewire inside the nasogastric tube at the time of chest Xray are associated with a risk of insufficient visibility of the tube on X-ray. Patient profiles can be defined in which supplementary attention is needed when obtaining chest X-rays whose purpose is to confirm nasogastric tube positioning.
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  • Torsy, Tim, et al. (författare)
  • The accuracy of methods for determining the internal length of a nasogastric tube in adult patients : A systematic review
  • 2022
  • Ingår i: American Journal of Clinical Nutrition. - : Oxford University Press. - 0002-9165 .- 1938-3207. ; 116:3, s. 798-811
  • Forskningsöversikt (refereegranskat)abstract
    • BACKGROUND: Blind insertion of nasogastric tubes is performed for several reasons: Nutrition and medication administration, gastric aspiration/decompression, and other, diagnostic reasons. Accidental intraesophageal and intestinal placement is common, and increases the risk of serious complications. Therefore, accurate determination of the internal length of the nasogastric tube prior to placement is considered a prerequisite for achieving correct gastric positioning.OBJECTIVES: To identify, assess and summarize the evidence on the accuracy of methods for determining the internal length of a nasogastric tube in adults.METHODS: Cochrane Library, EMBASE, PubMed, CINAHL, and Web of Science were searched up to January 31, 2022. Studies were eligible when reporting data on the accuracy of methods for determining internal nasogastric tube length in adults. Study selection, risk-of-bias assessment, and data extraction were performed independently by two investigators. Risk-of-bias was assessed using the Cochrane Risk-of-Bias Tool and the JBI Critical Appraisal Checklist for Cross Sectional Studies. A narrative synthesis of the results was then conducted.RESULTS: Twelve papers were included in this review. All studies were observational, cross-sectional in nature, except for one RCT. Ten methods for determining the internal length of a nasogastric tube were described. Correctly positioned NG tubes ranged from 13% to 99%. Results showed that the nose-earlobe-xiphoid (NEX) distance + 10 cm (M = 59.9 - 60.7 cm) and (NEX x 0.38696) + 30.37 + 6 cm (M = 56.6 - 56.7 cm) could potentially result in accuracy as high as 97.4 and 99.0%, respectively.CONCLUSIONS: Current data do not provide conclusive evidence of 100% accuracy in finding a correctly placed nasogastric tube when using a method for determining the internal length. Blind placement, using any of the documented methods, cannot be considered safe without additional verification of tube tip positioning. Furthermore, using any of these ten methods does not reduce the risk of pulmonary intubation.
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  • Ullsten, Alexandra, 1967-, et al. (författare)
  • Efficacy of Live Lullaby Singing During Procedural Pain in Preterm and Term Neonates
  • 2017
  • Konferensbidrag (refereegranskat)abstract
    • Background: Acute and repeated pain has long-term negative impact on infants’ development and future behaviour. The use of analgesic drugs has negative side-effects, which emphasizes the need for complementary approaches to pain management.Aim: This study is the first clinical trial measuring if live lullaby singing can influence behavioural and physiological pain responses during venepuncture in preterm and term neonates.Method: Preterm and term infants (n=38) were subjected to venepuncture with and without live lullaby singing, in a randomised order with a cross over design. Parent-preferred lullabies were performed live and standard care was provided for all neonates. Behavioural and physiological pain responses were assessed.Results: The live lullaby singing did not show a statistically significant effect on the infants’ pain score. There was a significantly calmer breathing pattern in the lullaby intervention versus the control condition in the pre-needle stage. There were non-significant indications of fewer and shorter skin punctures with lullaby singing.Conclusions: The additive effect of live lullaby singing has not been shown to alleviate infants’ behavioural pain responses during venepuncture; however nor has it been shown to be harmful. More research is needed to explore the potential benefits of music therapy including the role of the parents.
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  • Ullsten, Alexandra, 1967-, et al. (författare)
  • Efficacy of Live Lullaby Singing During Procedural Pain in Preterm and Term Neonates
  • 2017
  • Ingår i: Music and Medicine. - : PKP Publishing Services. - 1943-8621 .- 1943-863X. ; 9:2, s. 73-85
  • Tidskriftsartikel (refereegranskat)abstract
    • This clinical trial tested the pain relieving effect of live lullaby singing on behavioral and physiological pain responses during venepuncture in 38 preterm and full term neonates. Acute and repeated pain, as well as the use of analgesic drugs, may have long-term negative impact on infants’ development and future behaviour. This emphasizes the need for complementary approaches to pain management such as music therapy.Parent-preferred lullabies were performed live and standard care was provided for all neonates. Behavioral responses with regard to pain were assessed with Premature Infant Pain Profile-Revised (PIPP-R) and Behavioral Indicators of Infant Pain (BIIP). Heart rate, respiratory rate and oxygen saturation were measured each tenth second.Although the live lullaby singing did not show a statistically significant effect on the infants’ pain score, there was a significantly calmer breathing pattern in the lullaby intervention versus the control condition in the pre-needle stage, showing a non-significant trend towards higher oxygen saturation levels and calmer heart rate in the lullaby intervention versus the control condition in the pre-needle stage. There were non-significant indications of fewer and shorter skin punctures with lullaby singing. More research is needed to explore such positive trends in the data.
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  • Ullsten, Alexandra, 1967-, et al. (författare)
  • Family-centred music therapy during painful procedures in neonatal care
  • 2018
  • Konferensbidrag (refereegranskat)abstract
    • Background: During the most vulnerable period in a child’s life, preterm and sick newborns are exposed to a high number of painful procedures, sometimes without the comfort of their parents. Repeated pain and frequent use of opioids can have consequences for the neurological and behaviour-oriented development of the infant.It is vital to identify a repertoire of effective non-pharmacological interventions.Method: Preterm and term infants (n=38) were subjected to venepuncture with and without live lullaby singing, in a randomised order with a cross over design. Parent-preferred lullabies were performed live by a music  therapy student. Standard care (facilitated tucking and oral glucose) was provided for all neonates. Behavioural and physiological pain responses were assessed.Results: Live singing with newborn infants is a social communicative interaction. If the vocal performance is predictable and regular from start, it may optimize homeostasis during painful procedures. However, the live lullaby singing did not show a statistically significant effect on the infants' pain score. There was a significantly calmer breathing pattern in the lullaby intervention versus the control condition in the pre-needle stage. There were non-significant indications of fewer and shorter skin punctures with lullaby singing.Conclusion: The additive effect of live lullaby singing has not been shown to alleviate infants’ behavioural pain responses during venepuncture; nor has it been shown to be stressful. Pain involves the interaction of biopsychosocial and situational factors,  therefore more research is needed to explore the potential benefits of music therapy including the role of the parents.
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  • Ullsten, Alexandra, 1967-, et al. (författare)
  • Live lullaby singing during painful procedures in preterm and term infants
  • 2019
  • Konferensbidrag (refereegranskat)abstract
    • Introduction: Infant-directed singing is a medium for parents and infants to communicate in a mutual relationship. Infant-directed singing is a multisensory biopsychosocial communication that also applies to ill and vulnerable hospitalised infants. The first Nordic implementation process of family-centred neonatal music therapy started in Sweden at the Central Hospital in Karlstad by the first author in March 2010 (Fig. 1). Live lullaby singing during painful procedures is the first clinical trial to measure the pain-relieving effects of live lullaby singing during venepuncture in preterm and term neonates.Method: 38 infants were subjected to venepuncture with and without live lullaby singing, in a randomised order with a cross over design. Parent-preferred lullabies were performed live by a music therapy student and standard care (facilitated tucking and oral glucose) was provided for all infants. Behavioural and physiological pain responses were assessed. The data from the RCT was analysed with qualitative and quantitative methods.Results: During the lullaby procedures the physiological patterns were more stable and regular. Lullaby singing significantly calmed the infants’ respiration before venepuncture (Fig. 2). There were nonsignificant indications of fewer and shorter skin punctures with lullaby singing. The behavioural pain responses did not show any significant differences between the live lullaby singing and standard care procedures, however, nor did they indicate that live lullaby singing was harmful or stressful.Conclusion: Live singing with infants is a biopsychosocial communicative interaction. A music therapist specialised in family-centred neonatal music therapy methods can mentor parents how to use live lullaby singing in connection to painful procedures. More research is needed to explore the potential benefits of family-centred music therapy as procedural support including the voice of the parents.
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22.
  • Ullsten, Alexandra, 1967-, et al. (författare)
  • Singing, sharing, soothing : Biopsychosocial rationales for parental infant directed singing in neonatal pain management: A theoretical approach
  • 2018
  • Ingår i: Music & Science. - : Sage Publications. - 2059-2043. ; 1, s. 1-13
  • Tidskriftsartikel (refereegranskat)abstract
    • Infant-directed singing is a medium for parents and infants to communicate in a mutual relationship. Parental infant-directed singing is a multisensory, biopsychosocial communication that applies to ill and vulnerable hospitalised infants. The primary musical features of infant-directed singing are ideal for emotional coordination and sharing between parent and infant without the risk of over-stimulation. In this article, we suggest that parental infant-directed singing is regarded as a nonpharmacological emotion regulation intervention, which may modify the painful experience for both the infant and the parent before, during and after painful procedures in the neonatal intensive care context. Parents have the biopsychosocial resources to alleviate their infant’s pain through infant-directed singing, if they are empowered to do so and coached in this process. A music therapist specialised in neonatal music therapy methods can mentor parents in how to use entrained and attuned live lullaby singing in connection to painful procedures. Pain and the vast amount of painful procedures early in infancy, combined with early parent–infant separation and lack of parental participation in the care of the infant during neonatal intensive care, place arduous strain on the new family’s attachment process and on the infant’s and parents’ mental health, both from a short and long-term perspective. Therefore, we argue with biopsychosocial rationales, that live parental infant-directed singing should be promoted in neonatal pain care worldwide. Consequently, parents should be welcomed round the clock and invited as prescribed pain management for their infant.
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24.
  • Anand, K J S, et al. (författare)
  • Effects of morphine analgesia in ventilated preterm neonates : primary outcomes from the NEOPAIN randomised trial
  • 2004
  • Ingår i: The Lancet. - 0140-6736 .- 1474-547X. ; 363:9422, s. 1673-82
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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25.
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26.
  • Andreasson, Matilda, et al. (författare)
  • State of the art in parent-delivered pain-relieving interventions in neonatal care
  • 2021
  • Konferensbidrag (refereegranskat)abstract
    • Objectives: Parent’s active involvement during painful procedures is considered a critical first step in improving neonatal pain practices. Of the non-pharmacological approaches in use, the biopsychosocial perspective supports parent-delivered interventions, in which parents themselves mediate pain relief, consistent with modern family-integrated care. Methods: A scoping review was performed to achieve a broad understanding of the current level of evidence and uptake of parent-driven pain- and stress-relieving interventions in neonatal care. Specific objectives of the scoping review were to:1. Explore the breadth and extent of the literature, identify the types of available evidence, map and summarize the evidence, and inform future research on parent-delivered pain- and stress-relieving interventions in neonatal care. 2. Describe parents’ experiences of delivering pain and pain-related stress relief to their newborn infant. 3. Map and summarize recommendations as well as define knowledge gaps in national and international guidelines and in professional organizations or networks.
Results: There is strong evidence for the efficacy of skin-to-skin contact and breastfeeding, 
preferably in combination. These parent-delivered interventions are safe, valid, and ready for 
 prompt introduction in infants’ pain care globally. Research into parents’ motivations for, and 
experiences of, alleviating infant pain is scarce. More research on parent-delivered 
pain alleviation, including relationship-based interventions such as the parent’s musical 
presence, is needed to advance infant pain care. Guidelines need to be updated to include infant pain management, parent-delivered interventions, and the synergistic effects of 
combining these interventions and to address parent involvement in low-income and low-tech 
settings.
Conclusions: A knowledge-to-practice gap currently remains in parent-delivered pain 
management for infants’ procedure-related pain. This scoping review highlights the many advantages of involving parents in pain management for the benefit not only of the infant and 
parent, but also of health care.
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27.
  • Arenhall, Eva, 1974-, et al. (författare)
  • Decreased sexual function in partners after patients’ first-time myocardial infarction
  • 2018
  • Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 17:6, s. 521-526
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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28.
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29.
  • Axelin, Anna, et al. (författare)
  • Pain in early life (pearl) – a network for pain research and education
  • 2019
  • Konferensbidrag (refereegranskat)abstract
    • BackgroundSmall children are especially vulnerable to the deleterious effects of pain. High quality research is needed to protect young children from the negative effects of pain. Previously pediatric pain research in the Nordic region was severely limited; hampered by small samples and small-scale, time-consuming studies carried out by a few dedicated researchers. The similarities across the Nordic countries, concerning population composition, healthcare systems, and culture, made it reasonable to join forces for advances in child pain research and evidence-based practice. Methods In 2014, a group of Nordic researchers from the field of pain in early life gathered for a workshop in Örebro, Sweden. The participants knew each other from conferences or participation in common projects. Several were also collaborators, trainees, or alumni in the Canadian Pain in Child Health (PICH) network. The group decided to form a new network with the vision: To be a stable and competent research and training network within the area of pain in early life. The network was named PEARL – Pain in EARly Life. Three areas of work were defined: to provide parents with evidence-based information on pain relieving strategies, to provide healthcare professionals with evidence-based tools for the management of pain, and to perform collaborative research. Results Since then, PEARL has held yearly lecture days about pain in early life in Sweden, Norway, Finland and Denmark and thereby reached hundreds of clinicians. The meeting in Denmark was organized together with PICH as a PICH2Go-event with participants from 13 countries around the world. Four trainees have been awarded their PhD-degree, three members have become associate professors and two have become full professors. In all, 24 persons from the Nordic countries, Poland and Canada are members of PEARL. In the past 5 years, researchers from PEARL have published 94 papers about pain and stress (Fig 1). In a collaborative project, the pain assessment scale PIPP-R has been translated and culturally adapted for four Nordic languages. PEARL has established a website in six languages, with sections for parents, professionals and researchers: www.pearl.direct.Conclusion In five years, PEARL has had significant impact in pediatric pain research and attracted new collaborators and students. Moving forward, PEARL will focus on increasing its collaboration with other research groups. We will also make an effort to strengthen and develop parent partnerships and collaboration to ensure the best research and care possible for vulnerable small children. 
  •  
30.
  • Bendt, Martina, et al. (författare)
  • Adults with spina bifida : A cross-sectional study of health issues and living conditions
  • 2020
  • Ingår i: Brain and Behavior. - : John Wiley & Sons. - 2162-3279 .- 2162-3279. ; 10:8
  • Tidskriftsartikel (refereegranskat)abstract
    • OBJECTIVE: To describe health issues and living conditions in a cohort of adults living with Spina bifida.MATERIAL AND METHODS: A cross-sectional study was conducted by a multidisciplinary team. Adults with spina bifida (n = 219) were invited to participate. One-hundred-and-ninety-six persons (104 women and 92 men; 18-73 years, median age 33 years) were included. Structured interviews, questionnaires, and clinical assessments for medical, social, physical, and cognitive functions were used.RESULTS: There was large variation among participants as regards the consequences of their spina bifida. Individuals < 46 years seemed to have more secondary conditions such as hydrocephalus, Chiari II malformation, tethered cord symptoms, and latex allergy. A higher proportion of the individuals >46 years and older was able to walk, and they had performed better in primary school and on tests of psychomotor speed and executive function.CONCLUSIONS: This study demonstrates that adults with spina bifida have a complex set of physical, cognitive, and social needs that need to be addressed in order to improve their health issues and living conditions. The high prevalence of urinary and fecal incontinence, pain, and overweight underline that these issues need much attention during follow-up. The future generations of older adults may need more attention in many ways, since they at a younger age do have more complex medical conditions, lower physical and cognitive functions, and lower prerequisites for independent living and participation in society than those > 46 years today. This elucidates that adults with spina bifida need systematic follow-up services and social support throughout life.
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31.
  • Bendt, Martina, et al. (författare)
  • Living and health conditions for adults with spina bifida in Sweden – a comprehensive prevalence group study
  • 2018
  • Konferensbidrag (refereegranskat)abstract
    • 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.
  •  
32.
  • Bergh, Cecilia, 1972-, et al. (författare)
  • Shared unmeasured characteristics among siblings confound the association of Apgar score with stress resilience in adolescence
  • 2019
  • Ingår i: Acta Paediatrica. - : Wiley-Blackwell Publishing Inc.. - 0803-5253 .- 1651-2227. ; 108:11, s. 2001-2007
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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33.
  • Blomberg, Karin, 1970-, et al. (författare)
  • Fifty-year follow-up of childhood epilepsy : Social, psychometric, and occupational outcome
  • 2019
  • Ingår i: Epilepsy & Behavior. - : Elsevier. - 1525-5050 .- 1525-5069. ; 96, s. 224-228
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
  •  
34.
  • Blomberg, Karin, 1970-, et al. (författare)
  • Physical touch in nursing and nursing education – an integrative review
  • 2020
  • Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
    • Physical touch is a basic need of all people, regardless of age or life situation. It can provide security, well-being and belonging. But negative perceived physical touch can generate emotions such as fear, vulnerability and perceived as violations. As a consequent of the #metoo movement in the fall of 2017, it’s a risk that physical contact and especially physical touch are avoided by professions where it’s central. For example, in the context of education, studies show that sports teachers in many countries have become more cautious and avoid having physical contact with students due not to being misinterpreted as negative touch (Fletcher, 2013; Öhman, 2016; Piper, Garratt & Taylor, 2013). In healthcare, caregivers who use physical touch in their work with disabled and elderly people have also become insecure and worried that they may be misunderstood (Bergstrand, 2018). A review shows that healthcare professionals see physical touch as part of the work but want to be the initiator of the contact, not that it should be initiated by the patients (Kelly et al. 2018).The use of physical touch in healthcare is also affected by the need to avoid contamination and widespread of infections agents, a question with extra relevance in the light of the Covid-19 pandemic.There is currently a lack of knowledge about how physical touch is experienced and used. As a first step is to increase the knowledge and understanding of how physical touch is experienced and used in healthcare by mapping studies explored physical touch both in daily care but also from the perspective of nursing students. With increased knowledge, a basis for developing interventions/teaching modules can be generated.
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35.
  • Blomberg, Karin, 1970-, et al. (författare)
  • Using a Facebook Forum to Cope With Narcolepsy After Pandemrix Vaccination : Infodemiology Study
  • 2019
  • Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 21:4
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
  •  
36.
  •  
37.
  • Brorson, Lars-Olov, et al. (författare)
  • Fifty years' follow-up of childhood epilepsy : Medical outcome, morbidity, and medication
  • 2019
  • Ingår i: Epilepsia. - : Wiley-Blackwell. - 0013-9580 .- 1528-1167. ; 60:3, s. 381-392
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
  •  
38.
  • Brorson, Lars-Olov, et al. (författare)
  • Fifty years’ follow up of childhood epilepsy - medical and psycho-social outcomes
  • 2020
  • Konferensbidrag (refereegranskat)abstract
    • Purpose: To describe the long-term prognosis of childhood epilepsy in general, with special emphasis on seizure remission, relapse, medication, associated neurological impairment, mortality rate, cause of death, the experience of a childhood diagnosis of epilepsy and its consequences for the experiences of daily life.Methods: A prospective longitudinal study on a population-based total cohort of 195 children with epilepsy in 1962-1964. Data were collected from medical records, questionnaires and additional interviews were conducted. 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 neurological impairment. These children had later seizure onset, shorter total duration of epilepsy and, they were more often medication free. Generalized, rather than focal, epilepsy had a better outcome. Ninety per cent, with onset during the inclusion period 1962-1964, were seizure-free after 50 years. No one in this group died in SUDEP. The standardized mortality ratio (SMR) was 2. 61. Death at young age was due to neurological impairment or epilepsy-related conditions whereas later deaths often followed non–epilepsy-related conditions. 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. Almost all reported no anxiety (82%) and no depression (90%). The interviews revealed a good balance between ‘Controlling and managing the situation’ and ‘Not being restricted by the condition’.Conclusion: This 50-year, long-term, follow-up of a cohort of persons with childhood epilepsy in general demonstrates a better outcome for seizure freedom, relapses and minor consequences for education, work and leisure activities than earlier reported. Most of the participants had developed strategies to manage their situation.
  •  
39.
  • Bueno, Mariana, et al. (författare)
  • Neonatal and infant pain assessment
  • 2021. - 2
  • Ingår i: Oxford Textbook of Pediatric Pain. - : Oxford University Press. - 9780198818762
  • Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
    • Pain assessment is an essential foundation to mitigate pain and its consequences in the developing child. However, pain assessment in neonates and infants is challenging and, to date, there is no “gold standard” infant pain indicator, measure, or approach. This chapter encompasses (1) a comprehensive evaluation of the most current and well validated neonatal/infant pain assessment measures; (2) an overview on biomarkers and cortical indicators on neonatal/infant pain; (3) the integration of recommendations on pain-assessment measures and practices within clinical practice guidelines, policies, and procedures; and (4) challenges associated with neonatal and infant pain assessment in terms of research, clinical, and knowledge translation issues.
  •  
40.
  • Campbell-Yeo, Marsha, et al. (författare)
  • Assessment and Management of Pain in Preterm Infants : A Practice Update
  • 2022
  • Ingår i: Children. - : MDPI. - 2227-9067. ; 9:2
  • Tidskriftsartikel (refereegranskat)abstract
    • Infants born preterm are at a high risk for repeated pain exposure in early life. Despite valid tools to assess pain in non-verbal infants and effective interventions to reduce pain associated with medical procedures required as part of their care, many infants receive little to no pain-relieving interventions. Moreover, parents remain significantly underutilized in provision of pain-relieving interventions, despite the known benefit of their involvement. This narrative review provides an overview of the consequences of early exposure to untreated pain in preterm infants, recommendations for a standardized approach to pain assessment in preterm infants, effectiveness of non-pharmacologic and pharmacologic pain-relieving interventions, and suggestions for greater active engagement of parents in the pain care for their preterm infant.
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41.
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42.
  •  
43.
  • Campbell-Yeo, Marsha, et al. (författare)
  • Neonatal pain
  • 2022
  • Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
    • This is a workshop led by professors Marsha Campbell-Yeo, Halifax, Mats Eriksson, Örebro, and Denise Harrison, Melbourne. Neonatal pain will be discussed from a clinical and scientific view.
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44.
  • Carlsen Misic, Martina, 1986-, et al. (författare)
  • Balancing power by including parents as co-researchers : Live parental singing, breastfeeding, skin-to-skin-contact as procedural support in Swedish neonatal pain care
  • 2022
  • Konferensbidrag (refereegranskat)abstract
    • Frequent and inadequately treated pain combined with separation from the parent cause adverse interruptions to the parent-infant attachment process. The pain might harm the infant physically and psychologically including increasing the risk for abnormally heightened sensitivity to pain. Effective pain management strategies are needed and parent-delivered interventions such as infant-directed lullaby singing, breastfeeding and skin-to-skin contact where parents themselves mediate pain relief, is consistent with a modern understanding of pain and of family-integrated care. Important for translating research into practice is to involve healthcare professionals and parents as co-researchers. Neonatal pain research is an interdisciplinary field where music therapy has just started to publish results. The Nordic neonatal music therapy pain management strategy provides a theoretical and practical resource-oriented music therapy model of how parent-delivered infant-directed singing can be comprehensively used in interdisciplinary neonatal pain research. Parents as pain management in Swedish neonatal care (SWEpap), is a new cutting-edge interdisciplinary multi-centre clinical study with mixed methods. The collaborative participatory action research design for the qualitative part of the SWEpap study aims to democratise the research process involving both parents and health professionals in the knowledge-making. The second part of SWEpap is a randomised controlled trial informed by music therapy expertise and research using the Nordic neonatal music therapy pain management strategy as a theoretical framework for its design. The RCT will investigate the efficacy of combined pain management with live parental lullaby singing, breastfeeding and skin-to-skin contact compared with standard pain care during routine metabolic screening of newborn infants.
  •  
45.
  • Carlsen Misic, Martina, 1986-, et al. (författare)
  • Clonidine as analgesia during retinopathy of prematurity screening in preterm infants (cloROP) : protocol for a randomised controlled trial
  • 2022
  • Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 12:9
  • Tidskriftsartikel (refereegranskat)abstract
    • Introduction Preterm infants are at risk of negative consequences from stress and pain at the same time as they often are in need of intensive care that includes painful interventions. One of the frequent painful procedures preterm infants undergo is eye examination screening to detect early signs of ROP (retinopathy of prematurity). These examinations are both stressful and painful, and despite a multitude of research studies, no conclusive pain-relieving treatment has been demonstrated. The main aim of this trial is to investigate the analgesic effect of clonidine during ROP eye examinations.Methods and analysis The planned study is a multicentre randomised controlled trial with a crossover design. Infants will be recruited from two different neonatal intensive care units (NICUs) in Sweden. Infants born before gestation week 30 (and therefore eligible for ROP screening) and cared for in either of the NICUs will be eligible for inclusion in the study. The primary outcome will be Premature Infant Pain Profile–Revised score within 30 s after starting the examination. Secondary outcomes will be changes in the galvanic skin response parameters (area small peaks, area huge peaks, peaks per second and average rise time) within 30 s after starting the eye examination, together with the number and evaluation of adverse events reported within 72 hours after the examination and the examining physician’s assessment of how easy the infant was to examine.Ethics and dissemination Approval from the Swedish Ethical Review Authority and the Swedish Medical Products Agency has been obtained for the study. Parents of eligible infants will be getting both verbal and written information about the study including that participation is voluntary. Data will be collected and treated in accordance with the European general data protection regulations. The results will be reported on group level and published in a scientific journal.
  •  
46.
  • Carlsen Misic, Martina, 1986-, et al. (författare)
  • Clonidine as analgesia during retinopathy of prematurity screening in preterm infants -cloROP
  • 2024
  • Konferensbidrag (refereegranskat)abstract
    • BackgroundPreterm infants are vulnerable and sensitive to stimuli, during their stay in neonatal intensive care they undergo frequent stressful and painful procedures. One of these painful procedures is the screening for retinopathy of prematurity, ROP. In Sweden all preterm infants born before gestation week 30 undergo ROP-screening. The screening involves regular eye examinations to detect ROP at the early stages and these examinations are both stressful and painful. Several studies have investigated different ways of pain management during eye examinations with inconsequent results. No study has investigated Clonidine as pain management during ROP-screening.  AimThe aim of this clinical trial is to investigate the analgesic effect of clonidine during ROP eyeexaminations.MethodThis study is a multicenter randomized controlled clinical trial with a crossover design. Infants born before gestation week 30 and therefore undergoing ROP-screening, will be eligible for inclusion in the study. Infants will be recruited from two Swedish NICUs (neonatal intensive care units). The NICUs use different examination techniques, where NICU A uses indirect ophthalmoscopy while NICU B uses RetCam. A total of 50 infants will be recruited (25 at each NICU).  During the first eye examination the infant will be randomized to either clonidine 4mcg/kg or sterile water in the equivalent dose 60 minutes before the eye examination. The order of the treatment is blinded for everyone except the nurse preparing the study solution. During the second eye examination the infant will receive the study solution, (intervention or placebo) that he/she did not receive the first time.  The primary outcome of the study is pain assessment with the Premature Infant Pain Profile – Revised. The infants´ face and monitor showing oxygen saturation and heart rate will be videorecorded to be able to assess the pain afterwards. The secondary outcome is Galvanic Skin Response where three probes are attached to the infant’s foot sole to register changes in the sweat gland activity in response to stimuli such as pain or stress. The ophthalmologist performing the eye examination will also rate how easy it was to examine the infant by marking an X on a 10cm VAS scale with “very easy to examine” on one end and “very difficult to examine” on the other end.  Data collection is ongoing with 19 infants included at the moment.  
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47.
  • Carlsen Misic, Martina, 1986-, et al. (författare)
  • “Having my boy on my chest, humming to him, made us both very calm.” : Parents to new-born infants rated parent-delivered pain management as significantly meaningful during venepuncture
  • 2023
  • Konferensbidrag (refereegranskat)abstract
    • Background:Parents are a valuable but underutilized resource in procedural pain management in newborn infants. Parents want to take an active role in their infants’ pain management.  Yet, there is a lack of knowledge concerning the parents’ experiences of providing pain management.  Newborn infants experience several painful procedures related to postnatal care and immunizations. Not all infants receive adequate pain management during these procedures causing unnecessary suffering and leaves the infant at risk of complications. Parent-delivered pain management such as skin to skin contact and breastfeeding alleviate the infant’s pain during painful procedures. Live parental infant-directed lullaby singing has not been previously investigated during painful procedures. Infant-directed singing can be an apt medium for parents and infants to communicate in affective mutual relationship during painful procedures. Parents have a unique expertise about their infants and by including them in the pain management they could become valuable partners for the health professionals. The aim of the study was to investigate how meaningful the parents experienced providing procedural pain management to their newborn infant. Method: This study was part of a multi-center randomized controlled trial (RCT) with three parallel groups of healthy newborn infants and their parents. The SWEpap study (Parents as pain management in Swedish neonatal care), investigates the efficacy of combined pain management with skin-to-skin contact, breastfeeding and live parental lullaby singing compared with standard pain care initiated by health care professionals, and compared with just holding skin-to-skin during routine metabolic screening of newborn infants. The infant-parent dyads were randomly assigned to one of three treatment groups. For the parents’ ratings of meaningfulness, a visual analogue scale (VAS) with a 100mm line anchored at the ends is used; from “not meaningful” on the left end point, up to “most possible meaningful” on the right end point of the scale. The parents were also asked to give their verbal comment on how they experienced the blood sampling situation and providing pain management.  Results: A total number of 151 newborn infants with at least one parent, participated in the study. Mean gestational age was 39.6 w., mean birth weight was 3547 g., and 49,7 % were girls.  The mean VAS-ratings for meaningfulness were 82.1 in the standard care group, 89.5 in the skin-to-skin group and 88.9 in the combined intervention group. The ratings in the two groups with parent-delivered pain-alleviation were significantly higher than in the standard care group (p=0.036).  Parents in all groups expressed that it was meaningful to provide pain-relief and participate in the pain management of their newborn infant.  “Very meaningful. It felt much safer to have her close to me during the skin puncture. Usually, she is on the examination table which gives an unsecure feeling because when she is in pain you can’t do anything as a parent.” (Mother, skin-to-skin group) “It felt very good to make a positive impact. Singing went very well. I usually sing all the time at home.” (Father, combined group) “I could control the syringe with glucose which made me less helpless as a parent because I could contribute.” (Parent, standard care group) Some parents commented that providing pain management helped themselves to overcome their own fears. “I am scared of needles myself and has been worrying about needles and blood but this went really well. She was so calm, gave not a sound. I could also relax when she was calm.” (Mother, skin-to-skin group) Parents also compared with previous blood sampling situations. “My previous child was totally hysteric during blood sampling on the examination table. Today, the baby was absolutely calm.” (Parent, combined group)  Finally, many parents expressed that they wanted to continue providing parent-delivered pain management in the future. “I can absolutely think to use this pain relief combination in the future. He does recognize the singing and my voice from before.” (Mother, combined group)  Conclusions: The findings of this study shows that parents find it meaningful to provide parent-delivered pain-alleviating interventions during painful procedures in postnatal care. The parents in the skin-to-skin group and the group that combined skin-to-skin, breastfeeding, and live parental lullaby singing expressed that they wanted to keep using these methods in future painful situations as well. Even parents with fear of needles felt it was meaningful to participate in parent-delivered pain-alleviating pain management since their participation blunted their own fear.  Relevance for patient care: All newborn infants are subjected to painful procedures during the first months of life and pain-relieving methods are insufficiently used. Modern neonatal care strives to be family oriented with a high degree of parental participation. This must also be the case with pain management and parents must be given tools and opportunities to be an active agent in their infant’s pain management. 
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48.
  • Carlsen Misic, Martina, 1986-, et al. (författare)
  • Nurses' perception, knowledge, and use of neonatal pain assessment
  • 2021
  • Ingår i: Paediatric and Neonatal Pain. - : John Wiley & Sons. - 2379-5824 .- 2637-3807. ; 3:2, s. 68-74
  • Tidskriftsartikel (refereegranskat)abstract
    • Preterm and sick newborn infants undergo several painful procedures during their hospital stay, potentially leading to short‐ and long‐term negative consequences. Pain assessment should be performed regularly to provide optimal pain management. Nurses' knowledge of and attitude toward neonatal pain assessment affect how pain is assessed and managed in the clinical situation. The aim of this study was to explore Swedish nurses' perception, knowledge, and use of neonatal pain assessment. This descriptive, cross‐sectional questionnaire study was conducted across all Swedish neonatal units (n = 38). Respondents were chosen through convenience sampling by the head nurses at each unit. Ten nurses from each unit were asked to complete the survey, which contained both closed and open questions. A majority of the units (30/38; 79%) participated and 232 surveys were returned, a response rate of 61%. Of the nurses, 91% thought that neonatal pain assessment was important. Many nurses mentioned various difficulties with pain assessment and concerns that the scales used might not assess pain correctly. About half of the nurses considered themselves to have enough knowledge of neonatal pain assessment. Those who reported having enough knowledge of pain assessment viewed the pain scales used at their units more positively. Of the nurses, 74% reported using a pain assessment scale several times per work shift. Pain management guidelines were available according to 75% of nurses, but only 53% reported that the guidelines were followed. Although nurses in general expressed a positive attitude toward pain assessment scales, this was not necessarily evident in their clinical practice. Lack of knowledge, available or accessible guidelines, or concerns regarding the validity of available pain scales seemed to limit their use.
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49.
  • Carlsen Misic, Martina, 1986-, et al. (författare)
  • Parent-delivered pain-relieving interventions in Swedish neonatal care, a mixed methods study
  • 2022
  • Konferensbidrag (refereegranskat)abstract
    • Background: For improving the management of infant pain and translating research into practice, parents’ active involvement during painful procedures is considered a critical first step. Research into parents’ motivations for and experiences of alleviating infant pain, is scarce. More research on combined parent-delivered pain alleviation including relationship-based interventions such as the parent’s musical presence is needed to advance infant pain care.Aim: Parents as pain management in Swedish neonatal care (SWEpap), is a new cutting-edge interdisciplinary multi-center clinical study. Using a mixed methods approach, SWEpap investigates parent-delivered interventions such as infant-directed lullaby singing, breastfeeding and skin-to-skin contact where parents themselves mediate pain relief. This approach is consistent with a modern understanding of pain and of family-integrated care.Material and method: The qualitative part of the SWEpap study applies collaborative participatory action research design, video observations and interviews to investigate health care professionals’ and parents’ motivational factors in and experiences of parent- delivered pain alleviation. The second part is a randomized controlled trial. The RCT will investigate the efficacy of combined pain management with live parental lullaby singing, breastfeeding and skin-to-skin contact compared with standard pain care during routine blood sampling of newborn infants. The enrollment has started and is expected to be completed during 2023.Results: Preliminary results acknowledge the need for parents to be educated and prepared about the effectiveness of the parent-delivered methods and how to apply them prior to the procedure. In addition, when preparing for the actual procedure, both parents and health care professionals emphasize the importance of allowing the parents sufficient time to cope with the situation and the dyad to relax before the skin puncture.Conclusion: Video observations and interviews with parents and health care professionals indicate that parent- delivered interventions such as infant-directed lullaby singing, breastfeeding and skin-to-skin contact are feasible pain treatment methods during painful procedures.
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50.
  • Carlsen Misic, Martina, 1986-, et al. (författare)
  • Parents as pain management in Swedish neonatal care – SWEpap
  • 2024
  • Konferensbidrag (refereegranskat)abstract
    • Parents as pain management in Swedish neonatal care (SWEpap), is a new cutting-edge interdisciplinary multi-center clinical study. Using a mixed methods approach, SWEpap investigates combined parent-delivered interventions such as infant-directed lullaby singing, breastfeeding and skin-to-skin contact where parents themselves mediate pain alleviation. This approach is consistent with a modern understanding of pain and of family-integrated care. Today non-pharmacological strategies are considered the first choice in neonatal pain management, and parent-delivered interventions are valuable but often overlooked resources in the procedural pain management in newborn infants. Research shows that parents desire to be actively involved. More research on parents’ experiences of being active in pain alleviation is needed, as well as research on the effectiveness of combined parent-delivered pain management including relationship-based interventions as the parent’s musical presence.  The qualitative part of the project is investigating the experiences and attitudes of parents and nurses towards combined parent-delivered pain management. The study applies a collaborative participatory action research (PAR) design with ethnographic inspired data collection in form of focus groups, video-observations, and video-stimulated recall interviews for data collection.  ResultsPreparation was considered the key for combined parent-delivered pain management. Both parents and nurses emphasized the importance of allowing time for the parent-infant dyad to calm down together before the painful procedure to cope with the situation. The combined parent-delivered pain management was considered feasible by both parents and nurses. Parents expressed that the singing helped them focus on their infant instead of the procedure. The parental lullaby singing created a calm and trusting atmosphere, affecting not only the parent-infant dyad but also the nurses. After the procedure both parents and nurses felt that they have successfully supported the infant through a painful procedure.  The second part of the ongoing SWEpap project is a randomized controlled trial investigating the efficacy of combined parent-delivered pain management with live parental lullaby singing, skin-to-skin contact, and breastfeeding compared with standard pain care during routine blood sampling of healthy newborn infants.
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