<p>Caring for children at hospital with palliative care needs arouses different reactions in nurses and depends on what prior knowledge and experience nurses have. To besides shift focus from to care children palliative to care curative is further a strain and an emotional changeover. The aim of this study was to illuminate nurse’s</p><p>perceptions about caring for children at hospital with palliative care needs, and how they shift focus of care between children with palliative care needs and children with curative care needs. The study has a qualitative approach and data were collected with interviews from two focus groups. The interviews were performed in two different hospitals in the middle of Sweden, and analyzed with a manifest content analysis. Five themes were created from the analysis: create confidence and individualized relations, difference in meeting of children with unlike care needs, acquired experience and ability to reflect, need of support, supervision and distance,</p><p>difficulties to enforce a balance in changing between different care need. The conclusion was that nurses who shift between caring for children with a palliative care or curative care needs are exposed to psychological strain which may lead to psychological ill- health. This is important to prevent through for example continuous supervision which may contribute to the possibility for nurses to obtain more time for reflection and regain new strength.</p> / <p>Sjuksköterskor som arbetar på en barnavdelning möter ofta barn med ett palliativt vårdbehov, vilket väcker olika reaktioner hos sjuksköterskorna beroende på tidigare kunskap och erfarenhet. Att dessutom skifta fokus från att vårda barn palliativt till att vårda kurativt är ytterligare en påfrestande och känslomässig omställning. Syftet med denna studie var att belysa sjuksköterskors uppfattningar om hur det är att vårda barn på barnavdelning i sluten vård med palliativt vårdbehov samt hur det är att växelvis vårda barn med palliativt vårdbehov gentemot barn med kurativt vårdbehov. Studien har en kvalitativ ansats och data har samlats in via intervjuer i två</p><p>fokusgrupper. Intervjuerna genomfördes på två olika sjukhus i mellersta Sverige och analyserades med manifest innehållsanalys. Utifrån analysen skapades fem teman: skapa förtroende och att individanpassa relationen, skillnader i bemötande av barn med olika vårdbehov, förvärvad erfarenhet och förmåga att reflektera, behov av stöd, handledning och distans, svårigheter att upprätthålla en balans i växlingen mellan olika vårdbehov. Slutsatser som drogs var att sjuksköterskor som växelvis vårdar barn med palliativt eller kurativt vårdbehov utsätts för psykiska påfrestningar, vilket kan leda till psykisk ohälsa. Detta är viktigt att förebygga genom att sjuksköterskorna får till exempel kontinuerlig handledning vilket ger tid till reflektion och möjlighet att inhämta nya krafter.</p>

<p>To assess the impact of congenital malformations in Down syndrome (DS) on morbidity, mortality and outcome at birth, information on all children with DS born in the northern part of Sweden in 1973-80 (n=211) and 1995-98 (n=88) was collected. Most common were congenital heart defects (CHD), dominated by atrioventricular septal defects (AVSD). Up to age 10 years, morbidity and mortality were more than 10 times higher in DS children with CHD than in healthy DS children. The DS children seemed more vulnerable at birth than Swedish children in general: they had increased frequencies of Cesarean sections, premature birth, asphyxia, and low birthweight, and higher proportions of children small for gestational age, regardless of the presence of CHD. Infant mortality decreased from 14.2% to 2.3% between the two periods.</p><p>All children with AVSD with and without DS born in Sweden 1973-1997 (n=801) were followed up retrospectively to 2001. Children with isolated AVSD without complex additional CHDs were studied more closely (n=502). A reduction in age at operation and postoperative mortality (from 28 to 1%) was observed. No significant difference in 5-year postoperative mortality between genders or between DS and non-DS children was found. The 5-year postoperative mortality in DS decreased from 35% in 1973-77 to about 10% in 1993-97. </p><p>CHD had a major influence on morbidity, infectionrate and mortality in DS, but not on DS birth variables. The formerly high mortality in CHD is now reduced. In isolated AVSD measures seem equally successful in DS and non-DS children. Mortality is still 3 times higher in DS children with isolated AVSD than in healthy DS children. </p>

<p>The overall aim of this thesis was to study the implementation of guidelines, change processes and contextual variables from the perspective of improvements and neonatal nursing care’s endeavours to be more evidenced-based. Because health care is exposed to extensive change pressure and because the impact of effectiveness research on clinical practice is limited, it becomes urgent to understand how knowledge utilisation initiatives can be facilitated.</p><p>Three studies involved managers and nurses at all neonatal units in Sweden. Two of these studies also included nurses from other healthcare organisations. The fourth study included all staff at four neonatal units. The study designs used were cross-sectional, comparative and prospective longitudinal surveys; questionnaires were used as data collection tools in all four studies.</p><p>Evaluation of the utilisation of the neonatal nursing guidelines showed that the guidelines were known to the nurse managers and used at most of the units, though to varying degrees and in different ways. Fifteen months after guideline dissemination, 8 of 35 units had changed practice, of which 2 units had completed the implementation process of a guideline. Involvement in the preceding guideline project facilitated the completion of improvement projects compared with participation in training courses for quality improvement (QI) only. There was no difference between these two groups on long-standing involvement in improvement work. Nurses who continued QI work over a 4-year period were more active in seeking research and implementing research findings in clinical practice than those who ceased the improvement work. The QI-sustainable nurses reported better contextual support for research-related activities. In a separate study staff perceptions of organisational factors appeared stable over the course of one year at the aggregated level. Improvements in skills development and participatory management predicted higher overall organisational and staff well-being. </p><p>The findings emphasize the importance of including both individual and organisational factors in the strategic planning for evidence-based nursing. Plans have to be long-term and consider that change is a slow process. Leadership commitment is essential and there are clear benefits in developing a learning and professional supportive environment as well as of involving staff in organisational decision making.</p>

<p>Fifty children with hematologic malignancies have been treated with autologous BMT in Uppsala. The aim was to describe late effects in this group with special reference to cataracts, reduced final height, and to hepatic, renal, and pulmonary late effects. </p><p>Cataracts: All patients who received TBI in their conditioning developed posterior subcapsular cataract after BMT. A few patients with visual impairment affecting daily life needed cataract surgery, whereas the visual acuity was well preserved in most of the other patients.</p><p>Final height: There was a decrease in final height relative both to height at BMT and to target height. This decrease was significant both in those who had received TBI only and in those who had been given cranial irradiation. Cranial irradiation, young age at BMT, and short duration of GH treatment were predictors of height loss. </p><p>Hepatic function: Hepatic function was well preserved over a period of 10 years after BMT. TBI did not appear to be a risk factor for hepatic impairment. </p><p>Renal function: Six months after BMT there was a decrease in renal function in patients who had received TBI. It then recovered, albeit incompletely, and stabilized. After the first year there was little change over a period of 10 years after BMT. TBI appeared to be the most important risk factor for the development of chronic renal impairment in a number of patients. Nephrotoxic antibiotics may have contributed.</p><p>Pulmonary function: Six months after BMT there was a decrease in pulmonary function in those who received TBI. It then recovered and stabilized at the pretransplant level. After the first year there was little change over a period of 10 years after BMT. TBI appeared to be the most important risk factor for restrictive pulmonary disease in a number of patients whereas chemotherapy might also have been of importance for impaired gas exchange.</p>

<p>Rolandic epilepsy (RE) is the most common focal epilepsy syndrome in the pediatric age group with an onset between 3 and 13 years. The syndrome is defined by electro-clinically typical features and has been considered benign according to seizure remission before the age of 16 years.</p><p>The aim of this thesis was to investigate children with typical RE with different methods and to discuss the delineation of the syndrome. Thirty-eight children, aged 6–14 years, participated in one up to four studies.</p><p>Eighteen children were investigated with MRI. Hippocampal abnormalities were found in six (33%), volume asymmetry in five (28%) and high signal intensities on T2-weighted images in three (17%). Additionally, high signal intensities in T2-weighted images were revealed subcortically in temporal and frontal lobes bilaterally in five children (28%).</p><p>The hippocampal region was evaluated metabolically using proton magnetic resonance spectroscopy (¹H-MRS) in 13 children with RE and 15 matched controls. A metabolic asymmetry of the hippocampal regions was found in the patients compared to controls indicating an abnormal neuronal function.</p><p>Seventeen children with RE and 17 matched controls were investigated with a neuropsychological test battery. The RE children showed lower performance in auditory-verbal tests and in executive functions compared to controls.</p><p>Twenty RE children and 24 controls were assessed concerning their oromotor function. The RE children had greater problems concerning tongue movements including articulation. A dichotic listening test was also performed in a subgroup showing poorer results in the RE group. </p><p>A simple classification is proposed with RE ‘pure’ as the main group and the frame for this study.</p><p>In conclusion, these investigations disclosed various abnormalities in children with RE, challenging the benign concept during the active phase. It is assumed that maturational factors comprise causal mechanism to the deviant findings, which probably successively will normalize.</p>

<p>The breathing pattern of preterm infants is immature and is associated with a variety of reflexes. In a patient on the ventilator these reflexes interfere with spontaneous breathing. A better understanding of the immature control of breathing could lead to further improvements in ventilatory techniques. This thesis concerns studies of pulmonary stretch receptor (PSR) and phrenic nerve activity as part of the regulation of breathing in an animal model. </p><p>During assist/control ventilation with three different inspiratory pressure waveforms in animals with healthy lungs, squarewave pressure waveform<b> </b>strongly inhibits spontaneous inspiratory activity.</p><p>During partial liquid ventilation (PLV) in animals with healthy lungs, all PSRs studied maintained their phasic character, with increased impulse frequency during inspiration. PSR activity was not higher during PLV than during gas ventilation (GV), indicating that there was no extensive stretching of the lung during PLV.</p><p>During proportional assist ventilation (PAV) the applied airway pressure is servo-controlled proportionally to the ongoing breathing effort, thereby interacting with the activity of PSRs. Peak PSR activity was higher and occurred earlier during PAV than during CPAP. The regulation of breathing is maintained during PAV in surfactant-depleted animals before and early after surfactant instillation, with a higher ventilatory response and a lower breathing effort than during CPAP in both conditions.</p><p>Both lung mechanics and gas exchange influence the regulation of breathing. Inhibition of inspiratory activity occurred at a lower arterial pH and a higher PaCO₂ during PLV than during GV in animals with surfactant-depleted lungs, which might be related to recruitment of a larger number of pulmonary stretch receptors during PLV.</p><p>In summary, selected aspects of the regulation of breathing were studied in an animal model with different ventilatory techniques under different lung conditions similar to those that can occur in infants.</p>

Variation of diabetes incidence over time in countries with different incidence levels and socio-economic conditions, and in an age span beyond the childhood years, may give clues for diabetes causes. Materials: Data from prospective type 1 diabetes registers in Sweden and Lithuania in children (0-14 years) and young adults (15-34 and 15-39 years, respectively). Number of infections recorded in health care booklets (117 cases; 270 controls); interview about the dietary intake one-year before the diagnosis and routinely recorded growth data (99 cases; 180 controls). Results: The incidence of type 1 diabetes in Sweden and Lithuania differed most in the younger age groups, 28.9 and 7.5/100,000/year in 0-14-year group, respectively. During 1983-2000 incidence increased in 0-14-year old children in both countries, but the pattern of change differed. During 1983-1998 the incidence increased in Swedish children, but tended to decrease in young adults, with no increase in the age group below 35 years, indicating that the increase of childhood diabetes may be due to a shift towards a younger age at diagnosis. Within a low-incidence country Lithuania there was an urban-rural gradient of incidence, especially in the younger age groups, that seemed to follow poverty distribution: incidence in the 0-39-year group was 7.1, 9.0 and 8.8/100,000/year in rural areas, towns and cities, respectively, p&lt;0.001. Exposure to one or more non-specific infection during the first half-year of life reduced diabetes risk: odds ratios (95%-CI) in 0-14 and 5-14-year groups were (0.60; 0.37-0.98) and (0.47; 0.26-0.87), respectively. Higher energy intake and weight-for-age were independent diabetes risk factors: odds ratios for medium and high levels of energy were 1.33 (0.52-3.42) and 5.23 (1.67-16.38), and for weight-for-age 3.20 (1.30-7.88) and 3.09 (1.16-8.22), respectively. High intake of carbohydrates, disaccharides and sucrose in particular, increased diabetes risk independently of the high intake of energy. Conclusion: Environmental factors associated with socio-economic conditions in childhood may be important for the occurrence of type 1 diabetes. Lack of exposure to microbial antigens early in life, higher intake of energy and more rapid growth may contribute to the increase of childhood-onset diabetes observed in many countries.

To assess the impact of congenital malformations in Down syndrome (DS) on morbidity, mortality and outcome at birth, information on all children with DS born in the northern part of Sweden in 1973-80 (n=211) and 1995-98 (n=88) was collected. Most common were congenital heart defects (CHD), dominated by atrioventricular septal defects (AVSD). Up to age 10 years, morbidity and mortality were more than 10 times higher in DS children with CHD than in healthy DS children. The DS children seemed more vulnerable at birth than Swedish children in general: they had increased frequencies of Cesarean sections, premature birth, asphyxia, and low birthweight, and higher proportions of children small for gestational age, regardless of the presence of CHD. Infant mortality decreased from 14.2% to 2.3% between the two periods. All children with AVSD with and without DS born in Sweden 1973-1997 (n=801) were followed up retrospectively to 2001. Children with isolated AVSD without complex additional CHDs were studied more closely (n=502). A reduction in age at operation and postoperative mortality (from 28 to 1%) was observed. No significant difference in 5-year postoperative mortality between genders or between DS and non-DS children was found. The 5-year postoperative mortality in DS decreased from 35% in 1973-77 to about 10% in 1993-97. CHD had a major influence on morbidity, infectionrate and mortality in DS, but not on DS birth variables. The formerly high mortality in CHD is now reduced. In isolated AVSD measures seem equally successful in DS and non-DS children. Mortality is still 3 times higher in DS children with isolated AVSD than in healthy DS children.

The overall aim of this thesis was to study the implementation of guidelines, change processes and contextual variables from the perspective of improvements and neonatal nursing care’s endeavours to be more evidenced-based. Because health care is exposed to extensive change pressure and because the impact of effectiveness research on clinical practice is limited, it becomes urgent to understand how knowledge utilisation initiatives can be facilitated. Three studies involved managers and nurses at all neonatal units in Sweden. Two of these studies also included nurses from other healthcare organisations. The fourth study included all staff at four neonatal units. The study designs used were cross-sectional, comparative and prospective longitudinal surveys; questionnaires were used as data collection tools in all four studies. Evaluation of the utilisation of the neonatal nursing guidelines showed that the guidelines were known to the nurse managers and used at most of the units, though to varying degrees and in different ways. Fifteen months after guideline dissemination, 8 of 35 units had changed practice, of which 2 units had completed the implementation process of a guideline. Involvement in the preceding guideline project facilitated the completion of improvement projects compared with participation in training courses for quality improvement (QI) only. There was no difference between these two groups on long-standing involvement in improvement work. Nurses who continued QI work over a 4-year period were more active in seeking research and implementing research findings in clinical practice than those who ceased the improvement work. The QI-sustainable nurses reported better contextual support for research-related activities. In a separate study staff perceptions of organisational factors appeared stable over the course of one year at the aggregated level. Improvements in skills development and participatory management predicted higher overall organisational and staff well-being. The findings emphasize the importance of including both individual and organisational factors in the strategic planning for evidence-based nursing. Plans have to be long-term and consider that change is a slow process. Leadership commitment is essential and there are clear benefits in developing a learning and professional supportive environment as well as of involving staff in organisational decision making.

Fifty children with hematologic malignancies have been treated with autologous BMT in Uppsala. The aim was to describe late effects in this group with special reference to cataracts, reduced final height, and to hepatic, renal, and pulmonary late effects. Cataracts: All patients who received TBI in their conditioning developed posterior subcapsular cataract after BMT. A few patients with visual impairment affecting daily life needed cataract surgery, whereas the visual acuity was well preserved in most of the other patients. Final height: There was a decrease in final height relative both to height at BMT and to target height. This decrease was significant both in those who had received TBI only and in those who had been given cranial irradiation. Cranial irradiation, young age at BMT, and short duration of GH treatment were predictors of height loss. Hepatic function: Hepatic function was well preserved over a period of 10 years after BMT. TBI did not appear to be a risk factor for hepatic impairment. Renal function: Six months after BMT there was a decrease in renal function in patients who had received TBI. It then recovered, albeit incompletely, and stabilized. After the first year there was little change over a period of 10 years after BMT. TBI appeared to be the most important risk factor for the development of chronic renal impairment in a number of patients. Nephrotoxic antibiotics may have contributed. Pulmonary function: Six months after BMT there was a decrease in pulmonary function in those who received TBI. It then recovered and stabilized at the pretransplant level. After the first year there was little change over a period of 10 years after BMT. TBI appeared to be the most important risk factor for restrictive pulmonary disease in a number of patients whereas chemotherapy might also have been of importance for impaired gas exchange.