Globally, neonatal mortality has remained basically unchanged for the last three to four decades and every year almost four million newborns die before reaching one month of age. This persistent mortality is related to an invisibility of the newborn child in policies and statistics and a neglect of health care decision-makers, planners and practitioners to deliver a perinatal continuum of care. In recent years attention has however been brought to the unchanged neonatal mortality in an effort to improve survival. The present thesis seeks to increase understanding of obstacles for better neonatal survival. The studies performed are undertaken as sub-studies to the NeoKIP project in Quang Ninh province in northern Vietnam, a randomized controlled trial of knowledge implementation for improved neonatal survival (Neonatal Health – Knowledge Into Practice, ISRCTN 44599712). In the first paper we investigated and discussed the scope of invisibility of neonatal mortality through measuring the accuracy of official statistics on neonatal deaths. The second paper reports an inquiry of determinants of neonatal mortality by use of a population-based case-referent design. Paper III and IV analyse delivery care utilization and care seeking patterns prior to and at delivery using narratives and GIS technique. There was a substantial under-reporting of neonatal mortality in the official statistics, with study results showing a four times higher neonatal mortality rate in Quang Ninh province than reported to the Ministry of Health. This neonatal mortality rate of 16/1000 live births (as compared to 4.2/1000 in official reports) was unevenly distributed in the province, showing large geographical discrepancies. In the rural and remote areas of Vietnam education level is lower and the concentrations of ethnic minorities and poor households are higher. Ethnic minority belonging was associated with a more than doubled risk of neonatal death compared to the hegemonic group of Kinh (OR 2.08 CI 95 % 1.39 – 3.10). This increased risk was independent of household economic status or maternal education level. Neonatal mortality was also associated with home deliveries, non-attendance to antenatal care and distance to the health care facilities. However, ethnic minority mothers still had an increased risk of experiencing a neonatal death even if they attended antenatal care, delivered at or lived close to a health facility. The invisibility of the neonatal period in health information systems hides the true width of the neonatal mortality challenge. By not acknowledging the problem, the marginalization of already disadvantaged groups continues, leaving ethnic minority babies with an elevated risk of dying during the first month in life. This example of ethnic inequity highlights the importance to target those most in need. The studies of the present thesis should therefore be looked upon as a contribution to the struggle to illuminate the global burden of neonatal mortality.

SAMMANFATTNING Syfte: Att beskriva förekomst av posttraumatisk stress och behov av känslomässigt stöd bland föräldrar till barn med hjärntumör vid två månader efter barnets diagnos (T2) respektive 12 månader efter avslutad cytostatika-/strålbehandling eller 18 månader efter operation av barn som inte fått cytostatika-/strålbehandling (T6). Syftet var också att jämföra behovet av känslomässigt stöd bland föräldrar med möjlig PTSD och hos de föräldrar som inte visar symtom på möjlig PTSD vid T2 respektive T6. Urval: 42 föräldrar till barn med hjärntumör deltog i studien: 20 mödrar och 22 fäder. Metod: Designen var deskriptiv longitudinell. Nivåer av PTSS och förekomst av möjlig PTSD mättes med PTSD Checklist Civilian, föräldrars behov av känslomässigt stöd mättes med ett studiespecifikt formulär. Resultat: Nivåer av PTSS hos föräldrar till barn med hjärntumör var lägre vid T6 än vid T2. Vid T2 hade 17 % möjlig PTSD jämfört med 5 % vid T6. Behovet av att samtala med psykolog var oförändrat lågt mellan T2 och T6, men behovet minskade över tid gällande att samtala med läkare, sjuksköterska, kurator, partner, vänner och övriga. Slutsats: Även om nivåer av PTSS och behovet av känslomässigt stöd på gruppnivå minskar över tid, bör vårdpersonal ändå uppmärksamma förälderns individuella behov av stöd. / ABSTRACT Aim: To describe occurrence of posttraumatic stress and the need of emotional support among parents of children with brain tumour two months after the child has been diagnosed (T2) respectively 12 months after completed chemo-/radiotherapy or 18 months after surgery of those children who did not receive chemo-/radiotherapy (T6). The aim was also to compare the need of emotional support between parents with occurrence of potential PTSD and parents who did not show any symptoms of potential PTSD at T2 and T6 respectively. Sample: 42 parents of children with brain tumour participated in the study: 20 mothers and 22 fathers. Method: The design was descriptive longitudinal. Levels of PTSS and occurrence of potential PTSD was measured by PTSD Checklist Civilian. Parents’ need of emotional support was measured with a study specific questionnaire. Results: Levels of PTSS was lower at T6 than T2. At T2 17 % had possible PTSD compared with 5 % at T6. The need to talk to a psychologist was unchanged low between T2 and T6, but the need declined over time concerning to talk with a doctor, nurse, welfare officer, partner, friends and others. Conclusion: Even if levels of PTSS and the need of emotional support in group level decline over time, nursing staff should still be ware of the parents’ individual need of support.

Despite major advances in our understanding of the biology of childhood acute myeloid leukemia (AML) and the development of new cytotoxic drugs, the prognosis of long-term survival is still only 60-65 %. In the present research, we studied the pharmacokinetics of drugs used in the induction therapy of childhood AML and performed in vitro drug sensitivity testing of leukemic cells from children with AML. The aims of the studies were to correlate the results of the analysis to biological and clinical parameters and to identify subgroups of AML with specific drug sensitivity profiles in order to better understand why treatment fails in some patients and how therapy may be improved. Blood samples were analysed to study the pharmacokinetics of doxorubicin (n=41), etoposide (n=45) and 6-thioguanine (n=50). Doxorubicin plasma concentration and total body clearance were correlated to the effect of induction therapy, and doxorubicin plasma concentration was an independent factor for complete remission, both in univariate and multivariate analysis including sex, age, and white blood cell count at diagnosis. For etoposide and 6-thioguanine no correlation was found between pharmacokinetics and clinical effect. Children with Down syndrome (DS) tended to reach higher blood concentrations of etoposide and thioguanine nucleotides, indicating that dose reduction may be reasonable to reach the same drug exposure as in children without DS. Leukemic cells from 201 children with newly diagnosed AML, 15 of whom had DS, were successfully analysed for in vitro drug sensitivity by the fluorometric microculture cytotoxicity assay (FMCA). We found that samples from children with DS were highly sensitive to most drugs used in AML treatment. In non-DS children, the t(9;11) samples were significantly more sensitive to cytarabine (p=0.03) and doxorubicin (p=0.035) than other samples. The findings might explain the very favorable outcome reported in children with DS and t(9;11)-positive AML. A specific drug resistance profile was found for several other genetic subgroups as well. A detailed study of MLL-rearranged leukemia showed that cellular drug sensitivity is correlated both to partner genes and cell lineage, findings that support the strategy of contemporary protocols to include high-dose cytarabine in the treatment of patients with MLL-rearrangement, both in AML and acute lymphoblastic leukemia (ALL). Our results indicate that drug resistance and pharmacokinetic studies may yield important information regarding drug response in different sub-groups of childhood AML, helping us to optimize future chemotherapy in childhood AML.

Syftet med studien var att undersöka hur sjuksköterskor på en allmänpediatrisk avdelning disponerar sin tid gällande administrativa arbetsuppgifter jämfört mot direkt och indirekt patientkontakt. För att granska detta fenomen utfördes en aktivitetsstudie. Metod designen var icke experimentell deskriptiv observationsstudie. Där sju olika sjuksköterskor följdes under femton dagar där tidmätning skedde av på förhand kategoriserade aktiviteter. Kategoriseringsschema innehöll nio olika kategorier. Resultatet visade att 19,53 procent av arbetspasset vilket motsvarar 97 minuter spenderades med direkt patientkontakt respektive de 24,3 procent vilket motsvarar 120 minuter per dag till administrativa göromål. Dessutom uppmättes det att sjuksköterskorna blev avbrutna i snitt 26 gånger under ett åtta timmars arbetspass vilket resulterar till 3,25 avbrott per timme. Forskarnas slutsats är att det finns flera fördelar med ökad tid för patientkontakt och att detta är synnerhet gällande på en allmänpediatrisk avdelning. / The aim of the study was to examine how nurses at a general pediatric unit dispose of their time regarding administrative duties compared to direct interaction with the patient. To appropriately survey this phenomenon an activity study was conducted. The method for data collection was a nonexperimental descriptive observational study where seven nurses were followed for a total of fifteen days where the amount of time of their activities where noted according to an activity schedule that was formed beforehand. The schedule contained nine categories including the amount of interruptions nurses where subject to. The result of the study showed that roughly 19,53 percent of the nurses’ time, which is the equivalent to 97 minutes, were spent directly with the patients compared to the 24,3 percent, which amounts to 120 minutes a day, she spent with administrative tasks. Furthermore it was found that a nurse is in average interrupted 26 times during an eight hour shift which gives an average of 3,25 interruptions every hour. In conclusion the authors found ground that there are many benefits with increased nurse-patient time and believe this is especially true in a general pediatric unit.

To coordinate visual perception and motor control in daily life where we are constantly surrounded by motion, we are dependent on normal visuomotor capacity. One essential prerequisite for normal visuomotor capacity is smooth pursuit eye movements (SP). Infants born very preterm (VPT = born <32 gestational weeks) are at high risk of developing disabilities in higher brain functions i.e. perception, cognition, concentration and coordination. In this thesis visuomotor capacity was investigated in a cohort of VPT infants (n = 113) and compared to control groups of full term (FT) infants. Levels of SP were measured at 2 and 4 months’ corrected age (CA). At 8 months’ CA reaching capacity toward a moving object was evaluated as this represents an executive activity guided by vision that develops at an early age. Lower levels of SP were found in the VPT infants compared to FT controls. The VPT boys showed higher levels of SP compared to the VPT girls. In VPT infants without major neonatal morbidities lower levels of SP was found compared to the FT controls. No difference in total capacity of gaze tracking was found, although the VPT infants lagged the object more at 4 months’ CA and used more saccades at 2 months’ CA. With age the VPT infants’ SP levels increased, but with a wider dispersion compared to the FT controls, and the levels of SP at 4 months’ CA corresponded to the levels of the FT infants at 2 months.  A number of perinatal risk factors were found to be negatively associated to lower levels of SP, and this effect was more pronounced in VPT infants with multiple risk factors,.  When evaluating the capacity to reach a moving object at 8 months’ CA, the VPT infants showed significantly more bimanual reach and more curved reaching paths to catch the object as compared to the FT control group. In conclusion, a delayed visuomotor capacity was found in VPT infants compared to FT control infants at 2, 4 and 8 months’ CA. Some VPT infants with perinatal risk factors did not develop in levels of SP between 2 and 4 months’ CA.

Background: The number of children with life-threatening illness in need of palliative care is increasing worldwide. At the same time, a wide range of childhood diseases is challenging healthcare to provide care based on children’s special needs. Through family centered care nurses can consider the whole family surrounding the child. Aim: To describe families’ experiences and perspectives of living with a child at the end of life. Method: This study is a literature review. Fifteen scientific articles with a qualitative approach were analyzed thematically. Results: The thematic analysis resulted in two main themes and four sub themes. The result is described through the main themes: Family involvement in care and The changing existence of the family. A child with a life-threatening disease often has extensive care needs where all members of the family where involved in caring for the sick child in different ways. The impending death triggered a wide range of emotions in family members who found different ways of handling the situation together. Conclusions: Families experiences revolved around the need to cherish family life. A family centered approach can contribute to valuable insights about the child’s disease and wishes at the end of life and to the family’s sense of being involved. There are indications for future research where focus should be on family members other than parents. / Bakgrund: Antalet barn med livshotande sjukdom i behov av palliativ vård ökar i världen. Samtidigt innebär mångfalden av barnsjukdomar en utmaning för sjukvården att vårda utifrån barns särskilda behov. Genom familjecentrerad omvårdnad så kan sjuksköterskan ta hänsyn till hela familjen som omger barnet. Syfte: Att beskriva familjers erfarenheter och upplevelser av att leva med barn i livets slutskede. Metod: Studien är en allmän litteraturstudie. Femton vetenskapliga artiklar med kvalitativ ansats analyserades tematiskt. Resultat: Den tematiska analysen resulterade i två huvudteman och fyra subteman. Resultatet beskrivs utifrån dessa huvudteman: Familjens delaktighet i vården och Familjens föränderliga tillvaro. Ett barn med livshotande sjukdom har ofta ett omfattande vårdbehov, där hela familjen på olika sätt involverades i det sjuka barnets vård. Den stundande döden framkallade många känslor hos familjemedlemmarna, som tillsammans fann olika sätt att hantera den föränderliga tillvaron. Slutsatser: Familjers upplevelser kretsade kring behovet att värna om familjelivet. Ett familjecentrerat förhållningssätt kan bidra med värdefulla insikter om barnets tillstånd och önskemål i livets slutskede samt bidra till familjens känsla av delaktighet. Indikationer för framtida forskning finns, där fokus bör ligga på att fånga upp övriga familjemedlemmar utöver föräldrar.

Bakgrund: När ett barn blir svårt sjukt är förloppet hastigt och kräver snabba insatser från personalen. Det ställs stora krav på sjuksköterskorna i barnsjukvården för att tillgodose patientens och föräldrars behov. Vid akuta händelser kan det vara svårt att tillgodose behoven.    Motiv: Forskning visar att sjuksköterskor kan uppleva akuta händelser som drabbar barn som traumatiskt. Kunskap om sjuksköterskors erfarenheter av att vårda barn som har drabbats av en akut händelse är viktigt för att förbättra vården av det drabbade barnet och barnets säkerhet.    Syfte: Syftet med studien var att belysa sjuksköterskors erfarenhet av att i en akut situation vårda svårt sjuka eller skadade barn på barnklinik.  Metod: Kvalitativ metod med semistrukturerade intervjuer genomfördes med fem grundutbildade sjuksköterskor och fem specialistsjuksköterskor inom barn och ungdom på två medelstora sjukhus i Sverige. Intervjuerna genomfördes via Zoom och samtalen spelades in med mobiltelefon. Intervjuerna transkriberades och analyserades med kvalitativ innehållsanalys enligt beskrivning av (Graneheim & Lundman, 2004).   Resultat: Analysen av intervjuerna resulterade i tre kategorier som i sin tur baserades på sex subkategorier. Kategorin ”Att vara förberedd” innehöll subkategorierna ”erfarenhet som kunskap” samt ”träning och prioritering”. Kategorin ”Att Agera” innehöll subkategorierna ”hinder och möjligheter i samarbetet” samt ”hinder och förutsättningar i kommunikationen”. Den sista kategorin ”Att reflektera och behöva stöd” baserades på subkategorierna ”utmanande känslor” och ”bearbetning”.   Konklusion: Studien bidrar till kunskap om att vårda barn i en akut situation på barnklinik och kan bidra till förståelse hur personalen utvecklas med händelser de erfar. Studien skulle också kunna öppna upp för att arbetet med svårt sjuka eller skadade barn består av en helhet med lika viktiga delar. Om organisationen tog hänsyn till alla delarna skulle detta kunna bidra till att stressen och sjukskrivningarna minskade. / Background: When a child becomes seriously ill, the process is rapid and requires quick action from the staff. Great demands are placed on the nurses in pediatric care to meet the needs of the patient and parents. In the event of an emergency, it can be difficult to meet this needs.   Motive: Research shows that nurses can experience emergencies that affect children as traumatic. Knowledge of nurses' experiences of caring for children who have been affected by an emergency is important to improve the care of the affected child and its safety.   Aim: The aim of this study was to shed light on nurses' experiences of caring for seriously ill or injured children in a pediatric clinic in emergencies.   Methods: Qualitative method with semi-structured interviews was conducted with five undergraduate nurses and five specialist nurses in children and adolescents at two medium-sized hospitals in Sweden. The interviews were conducted via Zoom and the conversations were recorded with a mobile phone. The interviews were transcribed and analyzed with qualitative content analysis as described by (Graneheim & Lundman, 2004).   Result: The analysis of interviews resulted in three categories which were based on six subcategories. The category "To be prepared" contained subcategories "experience as knowledge" and "train and prioritize". The category "Acting" contained subcategories "obstacles and opportunities in cooperation" and "obstacles and conditions in communication". The last category "Reflecting and needing support" was based on subcategories "challenging emotions" and "processing".   Conclusion: The study contributes to knowledge about caring for children in emergencies at pediatric clinic’s and can contribute to an understanding of how staff develop with events they experience. The study also claims that working with seriously ill or injured children consists of equally important parts that together creates a whole. If the organization took the parts into account, this could help to reduce stress and burnouts.

Bakgrund: För att optimera vården av svårt sjuka eller skadade barn är kommunikationen i teamarbetet viktigt. Att arbeta i stressande akuta situationer innebär att kommunikationen kan brista och utgöra en risk för barnets säkerhet. För att optimera samarbetet under teamarbete är kommunikationen viktig. Motiv: Få studier rapporterar teamarbete och kommunikation vid vård av svårt sjuka eller skadade barn. För att säkra vården av akut sjuka och skadade barn finns behov av att undersöka kommunikation under teamarbete vid akuta situationer som inkluderar barn. Syfte: Syftet med studien var att beskriva sjuksköterskors erfarenheter av kommunikation och teamarbete vid vård av svårt sjuka eller skadade barn.     Metod: Studien genomfördes med hjälp av kvalitativ metod. Tre sjuksköterskor och sju barnsjuksköterskor anställda på en barnklinik på ett sjukhus i södra Sverige deltog i studien. Individuella semistrukturerade intervjuer användes för att samla data och intervjuerna transkriberades i sin helhet. Kvalitativ innehållsanalys användes för att analysera texten vilket resulterade i två kategorier och fem subkategorier. Resultat: Analysen av intervjuerna resulterade i kategorin “Att skapa förutsättningar för god kommunikation” baserade på subkategorierna “Möjligheter i kommunikationen” och “Hinder i kommunikationen”. Kategorin “Att arbeta säkert” baserades på subkategorierna “Samarbete och ledarskap”, “Förväntningar i teamet” och “Utveckla träning och reflektion”. Konklusion: Studien beskriver betydelsen på god kommunikation för ett gott samarbete med vårdteamet. Resultatet indikerar att det finns behov av scenarioträning, vilket kan ge sjuksköterskorna möjlighet att öva på kommunikation och teamarbete i en lugn och kontrollerad miljö. Kommunikation och teamarbete är centrala och viktiga begrepp inom vården, därför är framtida forskning väsentlig för en säker och jämställd vård. / Background: To optimize the care of seriously ill or injured children, communication in during teamwork is important. Working in stressful emergency situations means that communication is lacking and thus increase the risk to jeopardize the children’s safety. In order optimize the collaboration during teamwork in critical situations, communication is important. Motive: Few studies report teamwork and communication in the care of seriously ill or injured children. To ensure the care of critical ill and injured children, there is a need to explore communication during teamwork in critical situations that include children.   Aim: The purpose of this study was to describe nurses' experiences of communication and teamwork in the care of critical ill children. Methods: In this study a qualitative method was used. Three nurses and seven pediatric nurses employed at a pediatric clinic at a hospital in southern Sweden participated. Individual semi-structured interviews were used to collect data and the interviews were transcribed verbally. Qualitative content analysis was used to analyze the text, which resulted in two categories and five subcategories. Result: The analysis resulted in the category “Creating conditions for good communication” based on the subcategories “Opportunities in communication” and “Obstacles in communication”. The category "Working safely" was based on the subcategories "Cooperation and leadership", "Expectations in the team" and "Develop training and reflection". Conclusion: The study describes the importance of good communication for a good collaboration in the team when caring for critical ill or injured children. The results indicate that there is a need for scenario training, which can give nurses the opportunity to practice communication and teamwork in a calm and controlled environment. Communication and teamwork are central and important concepts in healthcare, therefore future research is essential for safe and equal care.

Bakgrund: Pediatriskt delirium är ett tillstånd med akut hjärndysfunktion som kännetecknas av störningar i medvetande och uppmärksamhet. Tillståndet drabbar minst 17-25% av barn inom intensivvården och leder till sämre livskvalitet. Utebliven screening ökar risken för att tillståndet underdiagnostiseras. Därför är det av stor vikt att intensivvårdssjuksköterskan har kunskap om vilka validerade mätinstrument som finns för screening av pediatriskt delirium. Syftet: Syftet var att kartlägga vilka mätinstrument som finns tillgängliga för screening av pediatriskt delirium inom intensivvården, hur de används samt deras validitet och reliabilitet. Metod: En deskriptiv litteraturstudie utfördes med deduktiv ansats av kvantitativa observationsstudier. Sökningen genomfördes i databaserna CINAHL och PubMed. En narrativ syntes användes för att sammanställa resultatet och presenterades i löpande text under två förutbestämda huvudkategorier; observationsmätinstrument och interaktivamätinstrument. Resultat: 19 artiklar inkluderades i studien. Inom de två huvudkategorierna identifierades fyra mätinstrument för pediatriskt delirium med god validitet och reliabilitet; CAPD, SOSPD, pCAM-ICU och psCAM-ICU. Särskilt svårbedömda patientgrupper identifierades för samtliga mätinstrument. Slutsats: CAPD bedömdes ha starkast vetenskapliga underlag. Det är viktigt att dessa mätinstrument implementeras och används inom intensivvården för att stärka patientsäkerheten genom att identifiera de barn som drabbas av pediatriskt delirium.

Background: The capacity in the country's pediatric intensive care units is limited, which means that a large number of children are cared for in general intensive units. Intensive care nurses must be able to care for all patients with failure in one or more organs and be able to assess changes in the patient's condition. The care of children differs from the adult patient in several ways. For the intensive care nurse, it can be an inexperienced situation. Previous research describes the perspective of nurses in the pediatric intensive care unit and parents of a sick child, as well as children's experiences of being a patient. Aim: The aim is to describe intensive care nurses experiences of caring for children up to the age of seven years in a general intensive care unit. Method: A qualitative interview study with inductive approach. Eight intensive care nurses from a intensive care unit in Mellansverige participated. Data was analysed using manifest content analysis. Results: The results are presented in two categories; “Being in an unusual situation” and “Meeting the child’s needs with the family as a resource”, each category has two subcategories. Conclusion: Intensive care nurses experience the care of children as challenging. A common thread in the result is to work from the child's perspective and needs. The theoretical perspective is prominent in the result although the concept of child centered care is not mentioned. The need for knowledge and experience is clearly prominent in intensive care nurses which demonstrates the importance of competence development within the area of operation.