| 1. |
- Broomé, Michael, et al.
(författare)
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Closed-loop real-time simulation model of hemodynamics and oxygen transport in the cardiovascular system
- 2013
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Ingår i: Biomedical engineering online. - 1475-925X. ; 12:1, s. 69-
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Tidskriftsartikel (refereegranskat)abstract
- Background: Computer technology enables realistic simulation of cardiovascular physiology. The increasing number of clinical surgical and medical treatment options imposes a need for better understanding of patient-specific pathology and outcome prediction. Methods: A distributed lumped parameter real-time closed-loop model with 26 vascular segments, cardiac modelling with time-varying elastance functions and gradually opening and closing valves, the pericardium, intrathoracic pressure, the atrial and ventricular septum, various pathological states and including oxygen transport has been developed. Results: Model output is pressure, volume, flow and oxygen saturation from every cardiac and vascular compartment. The model produces relevant clinical output and validation of quantitative data in normal physiology and qualitative directions in simulation of pathological states show good agreement with published data. Conclusion: The results show that it is possible to build a clinically relevant real-time computer simulation model of the normal adult cardiovascular system. It is suggested that understanding qualitative interaction between physiological parameters in health and disease may be improved by using the model, although further model development and validation is needed for quantitative patient-specific outcome prediction.
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| 2. |
- Burström, Åsa, et al.
(författare)
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Adolescents with congenital heart disease : their opinions about the preparation for transfer to adult care
- 2017
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Ingår i: European Journal of Pediatrics. - : Springer. - 0340-6199 .- 1432-1076. ; 176:7, s. 881-889
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Tidskriftsartikel (refereegranskat)abstract
- The aim of the study was to explore what adolescents with congenital heart disease (CHD) view as important in the preparation for the transfer to adult care. We performed interviews in four focus groups with adolescents (14-18 years old) at four university hospitals in Sweden. Data was analysed using qualitative content analysis. The analysis revealed one main category; Becoming a manager of the condition and four subcategories; Sufficient knowledge about the health, Be a participant in the care, Parental support, and Communicate with others about the health. The adolescents' ages differentiated the discussion in the groups. The older adolescents seemed to have more interest in transition planning, information and transfer. The younger described more frustrations about communication and handling the disease. Conclusion: To become a manager of the CHD in daily life, the adolescents want disease specific knowledge, which should be communicated in a developmentally appropriate way. Adolescents want to participate and be involved in the transition process. They need support and guidance in how to communicate their CHD. Parental support is fundamental but it change over time. Moreover, peer-support is becoming more significant during the transition process.
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| 3. |
- Burström, Åsa, et al.
(författare)
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Parental uncertainty about transferring their adolescent with congenital heart disease to adult care
- 2019
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Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 75:2, s. 380-387
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Tidskriftsartikel (refereegranskat)abstract
- Aims: To study parent's levels of uncertainty related to the transfer from pediatric to adult care in adolescents with congenital heart disease (CHD) and to identify potentially correlating factors. Background: Parents acknowledge that during transition they struggle with finding ways of feeling secure in handing over the responsibility and letting go of control. Well-prepared and informed parents who feel secure are most likely better skilled to support their adolescent and to hand over the responsibility. Design: A cross-sectional study. Methods: Overall, 351 parents were included (35% response rate). Parental uncertainty was assessed using a Linear Analogue Scale (0-100). Data were collected between January - August 2016. Potential correlates were assessed using the readiness for transition questionnaire and sociodemographic data. Results: The mean parental uncertainty score was 42.5. Twenty-four percent of the parents had a very low level of uncertainty (score 0-10) and 7% had a very high level (score 91-100). Overall, 26% of the mothers and 36% of the fathers indicated that they had not started thinking of the transfer yet. The level of uncertainty was negatively associated with the level of perceived overall readiness. Adolescents' age, sex, CHD complexity, and parental age were not related to uncertainty. Conclusion: A wide range in the levels of uncertainty was found. Parents who were less involved in the care, or perceived their adolescent as readier for the transition, felt less uncertain. Still, thirty percent of the parents had not started to think about the transfer to adult care.
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| 4. |
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| 5. |
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| 6. |
- Chang, Ya-Ting, et al.
(författare)
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Antenatal imatinib treatment reduces pulmonary vascular remodeling in a rat model of congenital diaphragmatic hernia
- 2012
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Ingår i: American Journal of Physiology - Lung cellular and Molecular Physiology. - : American Physiological Society. - 1040-0605 .- 1522-1504. ; 302:11, s. L1159-L1166
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Tidskriftsartikel (refereegranskat)abstract
- The pathophysiology of congenital diaphragmatic hernia (CDH) is constituted by pulmonary hypoplasia and pulmonary hypertension (PH). We previously reported successful treatment with imatinib of a patient with CDH. This study examines the effect of antenatal imatinib administration on the pulmonary vasculature in a rat model of CDH. Pregnant rats were given nitrofen to induce CDH. Controls were given olive oil. Half of the CDH fetuses and half of the controls were treated with imatinib antenatally E17-E21, rendering four groups: Control, Control+Imatinib, CDH, and CDH+Imatinib. Lung sections were obtained for morphometry and immunohistochemistry, and protein was purified for Western blot. Effects of nitrofen and imatinib on Ki-67, caspase-3, PDGF-B, and PDGF receptors were analyzed. Imatinib significantly reduced medial wall thickness in pulmonary arteries of rats with CDH. It also normalized lumen area and reduced the proportion of fully muscularized arteries. Imatinib also caused medial thinning in the control group. Cell proliferation was increased in CDH, and this proliferation was significantly reduced by imatinib. PDGF-B and PDGFR-beta were upregulated in CDH, and imatinib treatment resulted in a downregulation. PDGFR-alpha remained unchanged in CDH but was significantly downregulated by imatinib. Antenatal imatinib treatment reduces development of medial wall thickness and restores lumen area in pulmonary arteries in nitrofen-induced CDH. The mechanism is reduced cell proliferation. Imatinib is an interesting candidate for antenatal therapy for PH in CDH, but potential side effects need to be investigated and more specific targeting of PDGF signaling is needed.
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| 7. |
- Frenckner, Kerstin, et al.
(författare)
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Att utvärderas och utvecklas : om datalogi och medieteknik i ljuset av EAE på KTH
- 2011
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Ingår i: 3:e Utvecklingskonferensen för Sveriges ingenjörsutbildningar. - : Linköping University Electronic Press. ; , s. 82-86
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Konferensbidrag (refereegranskat)abstract
- Under 2011 genomförs en stor utvärdering av samtliga utbildningsprogram på KTH. Projektet går under namnet Education Assessment Exercise (EAE) och är den största enskilda aktiviteten inom KTH:s systematiska kvalitetsarbete under året [2]. Projektet går genom tre huvudstadier: självvärdering, extern bedömning och uppföljning. Den första delen skedde under våren 2011, del två i augusti, medan större delen av uppföljning och utveckling var tänkt att ligga efter bedömarnas slutrapport i oktober. Det stadiet påbörjades dock redan i augusti. Syftet med EAE är i första hand att bidra till kvalitetsutveckling, men EAE fungerar också som en förberedelse inför den utvärdering som Högskoleverket planerar att genomföra under 2012.Skolan för datavetenskap och kommunikation (CSC) vid KTH ansvarar för civilingenjörs-, master- och kandidatprogram inom datalogi och datateknik, medieteknik, beräkningsteknik och människa-datorinteraktion. Skolan ansvarar också för ett stort utbud av kurser inom skolans ämnen, datalogi, medieteknik, människa-datorinteraktion, numerisk analys och tal- och musikkommunikation, liksom omfattande forskning i dessa ämnen.Skolan ger kurser inte bara för studenter på skolans egna program utan även för studenter på andra skolors program. Studenterna på CSC-skolans program läser inte bara CSC-skolans kurser utan även kurser som ges av andra skolor, till exempel matematikkurser från Skolan för teknikvetenskap.CSC har länge haft ett systematiskt kvalitetsarbete inom grundutbildningen, som bland annat ledde till att skolan tilldelades Högskoleverkets utmärkelse Framstående utbildningsmiljö 2009. I denna artikel beskriver vi skolans kvalitetsarbete och arbete med EAE, i alla faser av utvärderingsprojektet.
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| 8. |
- Holzgraefe, Bernhard, et al.
(författare)
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Does permissive hypoxaemia during extracorporeal membrane oxygenation cause long-term neurological impairment? : A study in patients with H1N1-induced severe respiratory failure
- 2017
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Ingår i: European Journal of Anaesthesiology. - 0265-0215 .- 1365-2346. ; 34:2, s. 98-103
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: The Extracorporeal Life Support Organisation accepts permissive hypoxaemia in adult patients during extracorporeal membrane oxygenation (ECMO). The neurological long-term outcome of this approach has not yet been studied.OBJECTIVES: We investigated the prevalence of brain lesions and cognitive dysfunction in survivors from the Influenza A/H1N1 2009 pandemic treated with permissive hypoxaemia during ECMO for severe acute respiratory distress syndrome (ARDS). Our hypothesis was that this method is reasonable if tissue hypoxia is avoided.DESIGN: Long-term follow-up study after ECMO.SETTING: Karolinska University Hospital, Sweden, from October 2012 to July 2013.PATIENTS: Seven patients treated with ECMO for severe influenza A/H1N1-induced ARDS were studied 3.2 years after treatment. Blood lactate concentrations were used as a surrogate for tissue oxygenation.INTERVENTIONS: Neurocognitive outcome was studied with standardised cognitive tests and MRI of the brain.MAIN OUTCOME MEASURES: Cognitive functioning and hypoxic brain lesions after permissive hypoxaemia during ECMO. The observation period was the first 10 days of ECMO or the entire treatment period if shorter than 10 days.RESULTS: Eleven of 13 patients were still alive 3 years after ECMO. We were able to contact seven of these patients (mean age 31 years), who all agreed to participate in this study. Mean +/- SD peripherally measured arterial saturation during the observation period was 79 +/- 10%. Full-scale Intelligence Quotient was within one standard deviation or above from the mean of a healthy population in five patients, and was 1.5 SD below the mean in one patient. In one other patient, it could not be determined because of a lack of formal education. Memory functioning was normal in all patients. MRI showed no changes related to cerebral hypoxia.CONCLUSIONS: Permissive hypoxaemia during ECMO might not negatively affect long-term cognitive outcome if adequate organ perfusion is maintained.
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| 9. |
- Lidegran, Marika, et al.
(författare)
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Cranial CT for diagnosis of intracranial complications in adult and pediatric patients during ECMO : Clinical benefits in diagnosis and treatment
- 2007
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Ingår i: Academic Radiology. - Netherlands : Elsevier BV. - 1076-6332 .- 1878-4046. ; 14:1, s. 62-71
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Tidskriftsartikel (refereegranskat)abstract
- RATIONALE AND OBJECTIVES: To evaluate the clinical utility of cranial computed tomography (CT) in pediatric and adult patients during ongoing extracorporeal membrane oxygenation (ECMO) treatment from acute respiratory failure and to assess the frequency of intracranial hemorrhage (ICH) and infarction during the treatment. MATERIALS AND METHODS: The medical records of 123 consecutive patients, 54 children (ages 3 months-17 years) and 69 adults (ages 18-62 years), treated with ECMO over a 10-year period were searched for cranial CT performed during ECMO. Indications for CT, CT findings, impact on clinical management, and patient outcome were noted. In addition, all CT scans were reviewed for the frequency of ICH or infarction. RESULTS: Seventy-eight patients had cranial CT while on ECMO. ICH or cerebral infarction were detected in 45 (37%) of the 123 patients. Eighteen patients (15%) had focal hemorrhage, 11 (9%) focal infarction, and 16 (13%) general brain edema. In 16 of the 45 patients, the CT findings were decisive to withdraw the ECMO treatment. Five patients were weaned from ECMO, and in four patients the findings motivated cranial surgery during ECMO. In the remaining 20 patients with less extended intracranial pathology, the ECMO treatment was continued with high survival. CONCLUSION: Cranial CT has an important role during ECMO treatment to reveal or exclude severe intracranial complications where ECMO treatment should be discontinued. Less severe complications have a favorable prognosis with continued treatment. Our study suggests an underreporting of intracranial complications in adults and pediatric patients on ECMO because of low utilization of neuroimaging.
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| 10. |
- Nisell, Margret, et al.
(författare)
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How a family is affected when a child is born with anorectal malformation : Interviews with three patients and their parents
- 2003
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Ingår i: Journal of Pediatric Nursing. - 0882-5963 .- 1532-8449. ; 18:6, s. 423-432
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Tidskriftsartikel (refereegranskat)abstract
- Increased knowledge about families with a malformed child affects nursing practice. This study illuminates the experiences and psychosocial situation of 3 patients with imperforate anus and their parents. A qualitative method has been used to analyze the data. We found that the parents’ experiences of suffering were overwhelming and that the 3 patients had been depressed during periods. The patients were not as open as their parents; we need to devise better tools to explore and understand children’s experiences. The children and their parents need special care and an opportunity to express their anxieties.
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| 11. |
- Nisell, Margret, et al.
(författare)
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Psychosocial Experiences of Parents of a Child With Imperforate Anus
- 2009
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Ingår i: Journal for Specialists in Pediatric Nursing. - Oxford : Wiley-Blackwell. - 1539-0136 .- 1744-6155. ; 14:4, s. 221-229
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE. This study aims to examine the psychosocial experiences of parents of children with imperforate anus (IA) and to describe their potential positive experiences.DESIGN AND METHODS. Parents of IA children and a comparison group answered a questionnaire, which was analyzed quantitatively and with manifest content analysis.RESULTS. Social relationships and respect for the child's will were more affected among IA mothers. Positive experiences were revealed in relation to the child, the parent, and the family.PRACTICE IMPLICATIONS. Support to parents in caring for a child with IA should be individualized and occasionally undertaken through collaboration with experts from child and adolescent psychiatry.
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| 12. |
- Nisell, Margret, et al.
(författare)
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Social Issues Among Children With High or Intermediate Imperforate Anus : A Proxy Perspective
- 2009
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Ingår i: Journal of Child and Adolescent Psychiatric Nursing. - Oxford : Wiley-Blackwell. - 1073-6077 .- 1744-6171. ; 22:3, s. 132-142
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Tidskriftsartikel (refereegranskat)abstract
- PROBLEM: Children with imperforate anus (IA) may be psychosocially affected.METHODS: Parents of children with IA and parents in two comparison groups rated their children using a study-specific questionnaire and the Competence Scales in the Child Behavior Checklist (CBCL). Teachers rated Academic and Adaptive Functioning Scales in the Teacher's Report Form (TRF).FINDINGS: School items were rated favorably by the fathers of children with IA, and mothers reported less expression of their children's will. Children with IA were socially competent according to CBCL, although they received lower ratings on the TRF.CONCLUSIONS: Psychosocial issues seem to be challenging for children with IA, and this needs attention in care management.
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| 13. |
- Nisell, Margret, et al.
(författare)
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Views on Psychosocial Functioning : Responses from Children with Imperforate Anus and Their Parents
- 2008
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Ingår i: Journal of Pediatric Health Care. - : Elsevier. - 0891-5245 .- 1532-656X. ; 22:3, s. 166-174
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Tidskriftsartikel (refereegranskat)abstract
- IntroductionHigh and intermediate imperforate anus (IA) is a congenital malformation that may entail psychosocial consequences. The objective was to examine disagreement on psychosocial functioning in reports between children with high and intermediate IA and their mothers.MethodTwenty-five children with IA and their mothers participated, including two groups for comparison. The responses on 15 psychosocial variables were compared on pair-level, between the mothers and their child, within each group.ResultsStatistically significant differences were found on the psychological variables in all groups, for example, feelings of sadness. For responses related to the social variables, few statistical discrepancies were found, except for the items “bullied” and “teased.” Two specific discrepancies emerged in responses from children with IA and their mothers, the child's self-confidence and the mothers' thinking about their child's disability.DiscussionIt is vital to gather information from both the child and the parents in order to obtain a complete assessment of the child. The course of disagreement can give valuable information for future care, including where to exert extra effort.
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| 14. |
- Ringman, Andreas, et al.
(författare)
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NKCC-1 and ENaC are down-regulated in nitrofen-induced hypoplastic lungs with congenital diaphragmatic hernia
- 2008
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Ingår i: Pediatric surgery international (Print). - : Springer Science and Business Media LLC. - 0179-0358 .- 1437-9813. ; 24:9, s. 993-1000
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Tidskriftsartikel (refereegranskat)abstract
- Congenital diaphragmatic hernia (CDH) is accompanied by pulmonary hypoplasia and pulmonary hypertension. Fetal lung growth is dependent on the secretion of lung liquid, which normally is absorbed at partus. The ion channel NKCC-1 is involved in this secretory process, but has recently also been reported to be implicated in absorption. CDH patients show a disturbed transition from secretion to absorption. alpha- and beta-ENaC are essential for lung liquid absorption. Common for all transcellular ion transport is the need for Na/K-ATPase as a primary driving force. The aim of the study was first to map the normal pulmonary expression of the above proteins during late gestation and secondly to see if the expression was affected in a CDH rat model. Pregnant Sprague-Dawley rat dams were given nitrofen on gestational day 9.5 to induce CDH. The fetuses were removed on gestational days E18 and E21. In addition, newborn rats were harvested postpartum on day P2. The fetuses were put into one of two groups: hypoplastic lungs without CDH (N-CDH) and hypoplastic lungs with CDH (N+CDH). The pulmonary expression of NKCC-1, alpha-/beta-ENaC and Na/K-ATPase was then analyzed using Western blot. We found that the protein levels of NKCC-1 on gestational days E18 and E21 were significantly lower among fetuses with N+CDH as well as N-CDH compared to controls. The expression of beta-ENaC was also significantly down-regulated in both the groups on E18 and E21. The protein levels of alpha-ENaC and Na/K-ATPase were not found to be significantly decreased, but both showed a tendency towards down-regulation. The marked down-regulation of NKCC-1 in fetal hypoplastic lungs with CDH indicates a possibly decreased lung liquid production. This may be one of the mechanisms behind the disturbed pulmonary development in CDH. We also show that beta-ENaC is down-regulated. Down-regulation of beta-ENaC may result in abnormal lung liquid absorption, which could be one of the mechanisms behind the respiratory distress seen in CDH patients postpartum.
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| 15. |
- Ringman Uggla, Andreas, et al.
(författare)
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Low pulmonary expression of epithelial Na(+) channel and Na(+), K(+)-ATPase in newborn infants with congenital diaphragmatic hernia
- 2011
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Ingår i: Neonatology. - : S. Karger AG. - 1661-7800 .- 1661-7819. ; 99:1, s. 14-22
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: It has been suggested from several animal studies and clinical observations that congenital diaphragmatic hernia (CDH) with pulmonary hypoplasia is accompanied by a disturbed perinatal ion transport. This could lead to respiratory distress due to slower clearance of fetal lung fluid at birth. OBJECTIVES: The purpose of this study was to determine whether CDH is related to changes in the expression of three rate-limiting transporter proteins in lung epithelium at birth. METHODS: Tracheal aspirate was collected from 12 newborn infants with CDH and from 8 newborn control patients. Sampling was performed at postnatal age 18 and at 43 h in the CDH group and at 18 h in the control group. The protein abundance of α-, β- and γ-epithelial Na(+) channel (ENaC), aquaporin 5 and Na(+), K(+)-ATPase α(1) was analyzed using semiquantitative immunoblotting. RESULTS: The levels of β-ENaC, γ-ENaC and Na(+), K(+)-ATPase α(1) collected at 18 h postnatally were significantly lower in CDH infants compared to control infants. In the CDH group, no significant difference in the expression of the ENaC subunits, Na(+), K(+)-ATPase α(1) or aquaporin 5 could be detected between the two sampling time points. CONCLUSIONS: This downregulation may result in an abnormal lung fluid absorption which could be an important mechanism behind the respiratory distress seen in newborn CDH patients.
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| 16. |
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| 17. |
- Uggla, Andreas Ringman, et al.
(författare)
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Expression of chloride channels in trachea-occluded hyperplastic lungs and nitrofen-induced hypoplastic lungs in rats
- 2009
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Ingår i: Pediatric surgery international (Print). - : Springer Science and Business Media LLC. - 0179-0358 .- 1437-9813. ; 25:9, s. 799-806
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Tidskriftsartikel (refereegranskat)abstract
- Congenital diaphragmatic hernia is accompanied by pulmonary hypoplasia. Fetal lung growth is dependent on the secretion of lung liquid, in which Cl- secretion by the pulmonary epithelium plays a crucial role. A decrease of lung liquid production during fetal development renders marked pulmonary hypoplasia, while accelerated fetal lung growth in the form of pulmonary hyperplasia can be achieved by in utero tracheal occlusion (TO). Cl- secretion presumably involves NKCC-1, the primary basolateral Cl- entry pathway in airway epithelia, coupled to an apical Cl- exit pathway. The chloride channels ClC-2, -3 and -5, members of the CLC gene family, are all localized to the apical membrane of fetal respiratory epithelia, which makes them possible candidates for being mediators of fetal apical Cl- secretion. The aim of the study was to examine the potential of ClC-2, -3 and -5 as alternative apical airway epithelial Cl- channels in normal lung development and their possible role in the development of hypoplastic lungs in CDH. We also wanted to examine ClC-2, -3 and -5 together with the NKCC-1 in hyperplastic lungs created by TO. Pregnant Sprague-Dawley rat dams were given nitrofen on gestational day 9.5 to induce pulmonary hypoplasia. Controls were given only olive oil. The rat fetuses were removed on days 17, 19 and 21. Hyperplastic lungs were created by intrauterine TO of rat fetuses on day 19 and the lungs were harvested on day 21. The pulmonary expression of ClC-2, -3, -5 and NKCC-1 was then analyzed using Western blot. We found that the temporal expression of ClC-2 and -3 in normal fetal lungs points toward a developmental regulation. ClC-2 and -3 were also both down-regulated on day 21 in hypoplastic CDH lungs. In TO induced hyperplastic lungs, the levels of ClC-2 were found to be significantly up-regulated. NKCC-1 showed a tendency toward up-regulation in hyperplastic lungs, while ClC-3 showed a tendency to be down-regulated, but no statistically significant changes could be seen. There was no difference between controls and any of the groups for the expression of ClC-5. We show that the developmental changes in ClC-2 and ClC-3 protein expression are negatively affected in hypoplastic CDH lungs. Lung hyperplasia created by TO up-regulates the expression of ClC-2. ClC-2 is therefore an interesting potential target in the development of novel, non-invasive, therapies for CDH treatment.
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| 18. |
- Wigander, Helena, et al.
(författare)
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Impact of Low Anorectal Malformation on Parenting Stress : A Mixed-Method Study
- 2018
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Ingår i: Journal of Pediatric Nursing. - : Elsevier. - 0882-5963 .- 1532-8449. ; 42, s. e45-e51
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of this study was to investigate parenting stress among parents of children with low ARM.STUDY AIMS: 1) Compare parenting stress among parents of children with low ARM, with parents of healthy children using questionnaires. 2) Identify subscales within the questionnaire which needed to be further explored. 3) Use semi-structured interviews with parents of children with low ARM, to explore parenting stress and to explain, expand and or support the quantitative findings.DESIGN AND METHODS: An explanatory sequential mixed methods design was used in this follow up study. The parents completed the Swedish Parenthood Stress Questionnaire (SPSQ), semi-structured interviews were conducted.RESULTS: Fifteen mothers and 13 fathers of children with low ARM age 8-18, returned completed questionnaires. A control group of 17 mothers and 6 fathers of healthy children age 8-18 that had visited the hospital for a minor procedure was recruited for comparison purposes. There were no significant differences found between index group and controls except in the subscale Incompetence, where parents of children with low ARM reported lower levels of stress compared to controls. Nine semi-structured interviews were conducted with parents of children with low ARM. Qualitative content analysis was used and revealed three themes - Communication between parents, Expectations of parenthood, and Challenges concerning parenthood.CONCLUSIONS: Parents of children with low ARM did not report high levels of stress. When interviewed, they told about earlier experiences of emotional stress, feelings of guilt, and chaos at the time the child was born and during infancy.
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| 19. |
- Wigander, Helena, et al.
(författare)
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Quality of life and functional outcome in Swedish children with low anorectal malformations : a follow-up study
- 2019
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Ingår i: Pediatric surgery international (Print). - : Springer. - 0179-0358 .- 1437-9813. ; 35:5, s. 583-590
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The aim was to investigate the quality of life and bowel function in children with low anorectal malformations (ARM).ADDITIONAL AIM: To evaluate the Swedish version the Hirschsprung's Disease/Anorectal Malformation Quality of life Questionnaire (HAQL).METHODS: Forty-four children and their parents were invited to complete the HAQL and the Bowel Function Score (BFS). Healthy children participated as controls and completed the HAQL.RESULTS: Seventeen children and 18 mothers completed the HAQL. The children reported impaired function in the physical symptom (PH) fecal continence (FC) and laxative diet (LD) domains compared to controls. Compared with their mothers, they reported impaired physical function and more symptoms in the emotional functioning (EMF) and PH domains. 27 families completed the BFS; 63% reported normal bowel function, 33% moderate outcome and one patient, comprising 4%, poor outcome. Evaluation of the HAQL, FC, EMF and PH domains showed no obvious conflicts.CONCLUSIONS: The children did not differ much regarding their QoL, even though they appeared to have impaired bowel function and worse emotional functioning compared to controls. The mothers underestimated their children's physical symptoms and overestimated their emotional functioning. Evaluated domains in the HAQL appear to work as intended, but the questionnaire needs further development.
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| 20. |
- Wigander, Helena, et al.
(författare)
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Translation and cultural adaptation of the Hirschsprung’s Disease/Anorectal Malformation Quality of life Questionnaire (HAQL) into Swedish
- 2014
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Ingår i: Pediatric surgery international (Print). - : Springer. - 0179-0358 .- 1437-9813. ; 30:4, s. 401-406
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Tidskriftsartikel (refereegranskat)abstract
- PurposeChildren with anorectal malformation or Hirschsprung’s Disease (HD) often have functional problems with constipation or incontinence. The Hirschsprung’s Disease/Anorectal malformation Quality of life Questionnaire (HAQL) developed in the Netherlands is a disease-specific instrument measuring the quality of life (QoL) of children and adolescents with fecal incontinence. HAQL includes several domains with questions concerning diet, laxatives, constipation, diarrhea, urine and fecal incontinence, in addition to social and emotional functioning, body image, and physical symptoms. The purpose of the study was to translate and culturally adapt the HAQL questionnaire into Swedish.MethodThe translation was carried out according to accepted translation guidelines and a backward/forward translation method was used.ResultsThe translation correlated well with the original. All in all the Swedish and the Dutch versions agreed well. The Swedish translators chose to use a more simplified language in the questionnaires intended for the children, but used another choice of words in the proxy version and the adolescents’ version.ConclusionsThe translation of the HAQL instrument into Swedish gives us a disease-specific QoL instrument for children and adolescents born with HD and anorectal malformations (ARM). The translated and culturally adapted HAQL instrument is included in a survey regarding children and adolescents born with ARM.
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| 21. |
- Öjemyr-Joelsson, Maria, et al.
(författare)
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Children with high and intermediate imperforate anus : Remembering and talking about medical treatment carried out early in life
- 2008
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Ingår i: Pediatric surgery international (Print). - : Springer Science and Business Media LLC. - 0179-0358 .- 1437-9813. ; 24:9, s. 1009-1015
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Tidskriftsartikel (refereegranskat)abstract
- Treatment of children with high and intermediate imperforate anus entails several different surgical procedures during the first 3–12 months of life, which are accompanied by a strict follow-up treatment regimen. It has not been studied whether the children remember this treatment carried out early in life. Research has shown that small children may demonstrate so-called non-verbal memories of salient events occurring in early childhood. The purpose was to examine whether children with imperforate anus showed distressing memories of previous medical treatment and whether parent–child dialog about medical treatment is related to the child’s psychosocial functioning later in life. Parents of 25 children (9 boys, 16 girls) with high and intermediate imperforate anus participated in the study. The mean age among the children was 10.5 years (range 8.0–13.6). A comparison group of 30 children (5 boys and 25 girls) with juvenile chronic arthritis also participated in the study. The mean age was 10.6 years (range 7.8–13.6). All parents answered the Child Behavior Checklist (CBCL/4-18) and a study-specific questionnaire. Children in both groups were reported to show distressing memories of early treatment. Children who had been talked to showed good psychosocial function and were in a better mood and less angry than those who had not been talked to. Parent–child discussions about the child’s experiences of medical treatment did not seem to be harmful or in any other way detrimental to the child, instead such discussions seemed to facilitate the child’s psychosocial functioning.
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| 22. |
- Öjmyr-Joelsson, Maria, et al.
(författare)
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A Gender Perspective on the Extent to which Mothers and Fathers Each Take Responsibility for Care of a Child with High and Intermediate Imperforate Anus
- 2009
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Ingår i: Journal of Pediatric Nursing. - : Elsevier. - 0882-5963 .- 1532-8449. ; 24:3, s. 207-215
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Tidskriftsartikel (refereegranskat)abstract
- Imperforate anus is a malformation of the child's anus. Parents' experiences of responsibility for care of the child may differ. The aim of this study was to evaluate a gender perspective on the extent to which mothers and fathers each take responsibility for the care of a child with high and intermediate imperforate anus. Parents of children with imperforate anus and two control groups of children and parents participated. Data collection with questionnaires focusing on responsibility was performed. In conclusion, our study revealed additional evidence of unevenly divided parental responsibility for care of a child with a chronic condition. The mothers in this study were shown to be the primary caregiver.
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| 23. |
- Öjmyr-Joelsson, Maria, et al.
(författare)
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Children with high and intermediate imperforate anus : their experiences of hospital care
- 2011
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Ingår i: Pediatric surgery international (Print). - : Springer Science and Business Media LLC. - 0179-0358 .- 1437-9813. ; 27:10, s. 1117-1122
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Tidskriftsartikel (refereegranskat)abstract
- PurposeThe purpose of this study was to examine the experiences of children with high and intermediate imperforate anus (IA), and specifically their experiences of hospital care.MethodsTwenty-five children born with high and intermediate IA participated; 9 boys and 16 girls. The mean age was 10.5 years (range 8.0–13.6). Two control groups were involved in the study. A self-report questionnaire was used to gather the data concerning children’s experiences of hospital care. Items were scored on a 5-point Likert scale.ResultsThe children’s responses on hospital care items scored high. The children with IA reported being less satisfied with the information given, and understood less why they needed to visit the hospital than did the children in the two control groups.ConclusionThe children’s experiences of care seemed to be positive even though the children born with IA are subjected to invasive treatment. More research is called for in the unexplored area of information to the children, and particularly to the children born with a defect. Children’s views are important and should always be considered, as their answers most certainly reflect a genuine experience, contributing to the further development of their specific care.
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| 24. |
- Öjmyr-Joelsson, Maria, et al.
(författare)
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High and intermediate imperforate anus : psychosocial consequences among school-aged children
- 2006
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Ingår i: Journal of Pediatric Surgery. - : Elsevier. - 0022-3468 .- 1531-5037. ; 41:7, s. 1272-1278
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Tidskriftsartikel (refereegranskat)abstract
- Background/PurposeImperforate anus is an unusual malformation, which, even after surgical intervention, usually entails constipation and fecal incontinence. This study aimed to evaluate ongoing psychosocial effects of this birth defect in school-aged children.MethodsTwenty-five children born with high and intermediate imperforate anus participated in the study, along with their parents and classroom teachers. One group of healthy children and 1 group of children with juvenile chronic arthritis, along with their parents, served as controls. Children and parents individually answered a questionnaire devised for this study. Parents filled out the Child Behavior Checklist and the children's teacher filled out the Teacher's Report Form.ResultsAccording to test results, children with imperforate anus were happy and optimistic. They liked school better and reported better relationships with schoolmates than the other children. The index group reported statistically significantly more frequent constipation. According to parental responses, the imperforate-anus children suffered from fecal incontinence and odor, as well as constipation (P < .001). Index-group parents reported on the Child Behavior Checklist that their children had more emotional and behavioral problems. On the Teacher's Report Form, teachers reported few problems for the same children.ConclusionsPatients with imperforate anus did not experience psychosocial impairment despite significant functional problems.
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| 25. |
- Öjmyr-Joelsson, Maria, et al.
(författare)
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Parental Experiences : Care of Children With High and Intermediate Imperforate Anus
- 2006
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Ingår i: Clinical Nursing Research. - : Sage Publications. - 1054-7738 .- 1552-3799. ; 15:4, s. 290-305
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Tidskriftsartikel (refereegranskat)abstract
- In this study parental experiences of care of children with high and intermediate imperforate anus were evaluated. A group of 45 parents of children with high and intermediate imperforate anus and two control groups participated. Data collection with individual questionnaires concerning the child's hospital care, information to the parent and the child, and involvement in the care of the child were performed. Parents of children with imperforate anus reported being less satisfied with the care of their child, and they were less content with information about their child's treatment compared with the control groups. The parents had been extremely involved in the follow-up treatment. Constipation and fecal incontinence are common and involve suffering for the children and their parents. Parents have to be motivated and supportive and have a great deal of patience to be able to put up with caring for these children, and it seems as if health care professionals have underestimated their problems.
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| 26. |
- Öst, Elin, et al.
(författare)
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Behavioral, emotional and social functioning in children born with congenital diaphragmatic hernia
- 2018
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Ingår i: Pediatric surgery international (Print). - : Springer. - 0179-0358 .- 1437-9813. ; 34:6, s. 653-661
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The aim was to investigate social competence and behavioral and emotional problems in children and adolescents born with CDH.METHODS: All children born with CDH, treated in Stockholm 1990-2009, were invited to participate. After written consent, the Child Behavior Checklist or Adult Self-Report questionnaires were sent to participants. Of the 145 long-term survivors, 51% returned a completed questionnaire. Both the syndrome and competence scales were used and open-ended questions were analyzed with manifest content analysis.RESULTS: All parents of children aged 1.5-5 years and 90% of parents of children aged 6-18 years reported a normal range on the syndrome scale. Five parents indicated internalizing, but none externalizing behavior. All young adults achieved a normal score on the syndrome scale. Eighty-five percent had normal school achievement, 79% had normal social scores and 40% had normal activity levels. Significantly fewer boys (23%) were in the normal activity range compared with 67% of girls.CONCLUSIONS: The vast majority of all parents of children born with CDH scored no behavioral or emotional problems, furthermore, they reported normal social and school competence. However, the activity levels seemed to be reduced in children born with CDH.
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| 27. |
- Öst, Elin, et al.
(författare)
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Health-related quality of life in children born with congenital diaphragmatic hernia
- 2018
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Ingår i: Pediatric surgery international (Print). - : Springer. - 0179-0358 .- 1437-9813. ; 34:4, s. 05-414
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The aim of this study was to examine health-related quality of life (HRQoL) in children born with congenital diaphragmatic hernia (CDH).METHODS: Between 1993 and 2003, a total of 102 children born with CDH were treated at Astrid Lindgren Children's hospital in Stockholm. In 2012, long-term survivors (n = 77) were asked to participate in the present study, which resulted in a 46% (n = 35) response rate. The KIDSCREEN-52 questionnaire was used for measuring HRQoL and a detailed review of medical records was performed.RESULTS: The study participants did not differ from the non-participants in terms of prenatal diagnosis, gender, side of lesion, method of surgical repair, time to intubation, need for ECMO support, or way of discharge from the hospital. Children born with CDH considered themselves to have a good HRQoL, as good as healthy Swedish children. There were only a few significant HRQoL differences within the group of children with CDH, although several median scores in ECMO-treated patients were somewhat lower. Correlations between child and parent scores on HRQoL were low.CONCLUSIONS: Health-related quality of life in children born with CDH is good overall, however, a correlation between the severity of the malformation and HRQoL cannot be excluded.
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| 28. |
- Öst, Elin, et al.
(författare)
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Parenting stress among parents of children with congenital diaphragmatic hernia
- 2017
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Ingår i: Pediatric surgery international (Print). - : Springer Science and Business Media LLC. - 0179-0358 .- 1437-9813. ; 33:7, s. 761-769
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Tidskriftsartikel (refereegranskat)abstract
- PURPOSE: The aim of this study was to examine parental stress among parents of children with congenital diaphragmatic hernia (CDH).METHODS: Between 2005 and 2009, a total of 51 children with CDH were treated at Astrid Lindgren Children's Hospital. The survival rate at discharge was 86% and long-term survival rate 80%. One parent each of the long-term survivors (41 children) was included in the present study, and 34 parents (83%) agreed to participate. Participants received the Swedish Parenthood Stress Questionnaire (SPSQ). The questionnaire was supplemented by data from case records.RESULTS: Parents of children with CDH, who had been supported by ECMO or had a long hospital stay, showed significantly higher overall parental stress. Mothers scored an overall higher parental stress compared with fathers. A prenatal diagnosis of CDH or lower parental educational level resulted in significantly higher parental stress in some of the factors.CONCLUSIONS: Parental stress in parents of children with CDH seems to increase with the severity of the child's malformation. Mothers tend to score higher parental stress than fathers.
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