| 1. |
- Kitzing, Peter, et al.
(författare)
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Communication aids for people with aphasia
- 2005
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Ingår i: Logopedics Phoniatrics Vocology. - : Informa UK Limited. - 1401-5439 .- 1651-2022. ; 30:1, s. 41-46:30, s. 41-46
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Tidskriftsartikel (refereegranskat)
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| 2. |
- Dellenmark-Blom, Michaela, 1983, et al.
(författare)
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The Esophageal-Atresia-Quality-of-life Questionnaires: Feasibility, Validity and Reliability in Sweden and Germany.
- 2018
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Ingår i: Journal of pediatric gastroenterology and nutrition. - 1536-4801. ; 67:4, s. 469-477
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Tidskriftsartikel (refereegranskat)abstract
- Esophageal atresia (EA) is a rare malformation characterized of discontinuity of the esophagus, concurrent with or without a tracheoesophageal fistula (TEF). We report the feasibility validity and reliability of a condition-specific quality-of-life (QOL) tool for EA/TEF children, the age-adapted EA-QOL-questionnaires, when used in Sweden and Germany.A total of 124 families of children with EA/TEF participated in the study; 53 parents completed the EA-QOL-questionnaire for children aged 2 to 7 years; 62 children/71 parents the EA-QOL-questionnaire for children 8 to 17 years. Feasibility was determined from the percentage of missing item responses. Based on clinical data and previously validated generic QOL-instruments (PedsQL 4.0, DISABKIDS-12), the final EA-QOL scores were evaluated against hypotheses of validity (known-groups/concurrent/convergent) and reliability (internal consistency/retest reliability of scores for 3 weeks). Significant level was P < 0.05.In the questionnaire for EA/TEF children aged 2 to 7 years, 16/18 items were completed with missing values <6% (range 0%-7.5%), and in the questionnaire for 8 to 17-year-olds, 24/24 child-reported items (range 0%-4.8%) and 21/24 parent-reported items (range 0%-7.0%). In both age-specific EA-QOL-questionnaires, desirable standards for known-groups and concurrent validity were fulfilled; digestive symptoms and feeding difficulties negatively impacted EA-QOL-Total-scores (P < 0.001), and as hypothesized, in 2 to 7-year-olds, respiratory symptoms decreased EA-QOL-Total-scores (P=0.002). Correlations between the EA-QOL and generic QOL questionnaires supported convergent validity. Internal consistency reliability was satisfactory. The level of agreements of EA-QOL-scores between the field- and retest study were good to excellent.The overall psychometric performance of the EA-QOL-questionnaires for EA/TEF children is satisfactory and can enhance outcome evaluations in future research and clinical practice.
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| 3. |
- Witt, Stefanie, et al.
(författare)
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Health-related quality of life experiences in children and adolescents born with esophageal atresia: A Swedish-German focus group study.
- 2019
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Ingår i: Child: care, health and development. - : Wiley. - 1365-2214 .- 0305-1862. ; 45:1, s. 79-88
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Tidskriftsartikel (refereegranskat)abstract
- Esophageal atresia (EA) is a rare malformation of the esophagus, which needs surgical treatment. Survival rates have reached 95%, but esophageal and respiratory morbidity during childhood is frequent. Child and parent perspectives and cultural and age-specific approaches are fundamental in understanding children's health-related quality of life (HRQoL) and when developing a pediatric HRQoL questionnaire. We aimed to increase the conceptual and cross-cultural understanding of condition-specific HRQoL experiences among EA children from Sweden and Germany and investigate content validity for an EA-specific HRQoL questionnaire.Eighteen standardized focus groups (FGs) with 51 families of EA children aged 2-17years in Sweden (n=30 families) and Germany (n=21 families) were used to explore HRQoL experiences, which were content analyzed into HRQoL domains. The Swedish HRQoL domains were analyzed first and used as framework to evaluate HRQoL content reported in the German FGs. HRQoL experiences were then categorized as physical, social, and emotional HRQoL burden or resource.One thousand nine hundred eight HRQoL statements were recorded. All nine EA-specific HRQoL domains identified in the Swedish FGs (eating, social relationships, general life issues, communication, body issues, bothersome symptoms, confidence, impact of medical treatment, and additional difficulties due to concomitant anomalies) were recognized in the FGs held in Germany, and no additional EA-specific HRQoL domain was found. The HRQoL dimensions referenced physical burden (n=655, 34.5%), social burden (n=497, 26.0%), social resources (n=303, 15.9%), emotional burden (n=210, 11.0%), physical resources (n=158, 8.3%), and emotional resources (n=85, 4.5%).This first international FG study to obtain the EA child and his or her parents' perspective on HRQoL suggests Swedish-German qualitative comparability of the HRQoL domains and content validity for a cross-cultural EA-specific HRQoL questionnaire. EA children make positive and negative HRQoL experiences, but prominently related to physical and social burden, which underlines appropriate follow-up care and future research.
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| 4. |
- Witt, Stefanie, et al.
(författare)
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Parent-child-agreement on health-related quality of life and its determinants in patients born with Esophageal Atresia: a Swedish-German cross-sectional study.
- 2021
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Ingår i: Orphanet journal of rare diseases. - : Springer Science and Business Media LLC. - 1750-1172. ; 16:1
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Tidskriftsartikel (refereegranskat)abstract
- The aim was to compare parent and child-reported health-related quality of life (HRQOL) of children born with esophageal atresia (EA) and determine factors that affect the level of parent-child agreement.We included 63 parent-child dyads of children born with EA aged 8-18 from Germany and Sweden. The generic PedsQL 4.0™ questionnaire and the condition-specific EA QOL questionnaire were used to assess children's HRQOL from parents' and children's perspectives. The PedsQL™ Family Impact Module was used to assess parental HRQOL and Family Functioning.On an individual level, intra-class correlation coefficients indicated strong levels of parent-child agreement (.61-.97). At the group level, the analyses showed no significant differences between the responses of parents and children. When a disagreement occurred, parents were more likely to rate generic HRQOL lower than the children (19-35%) and condition-specific HRQOL higher than the children (17-33%). Findings of the binary logistic regression analyzes showed that the child's age, gender, and country (Germany vs. Sweden) were significant predictors of parent-child agreement in condition-specific HRQOL. We did not identify any significant variables that explain agreement for the generic HRQOL.The parent-child agreement is mostly good, suggesting that parent-reports are a reliable source of information. However, discrepancies may occur and can be explained by the child's age, gender, and country (Sweden vs. Germany). Both perspectives are essential sources for treating EA patients and should not be considered right or wrong. Instead, this information broadens the perspective on pediatric EA patients.
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| 5. |
- Wulff, Angela, 1963, et al.
(författare)
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Effect of sediment load on the microbenthic community of a shallow-water sandy sediment
- 1997
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Ingår i: Estuaries. - 0160-8347. ; 20:3, s. 547-558
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Tidskriftsartikel (refereegranskat)abstract
- Anthropogenic activities, such as construction work, dredging, and different kinds of recreation activities, can alter sediment loading in shallow coastal areas. The effect of increased load of fine sediment on the microbenthos (benthic microalgae, bacteria, and meiofauna) was studied in two experiments using undisturbed cores of a sandy sediment from a microtidal bay on the Swedish west coast. In each experiment, a total of 24 cores were incubated in an outdoor flow-through set-up. Twelve cores were treated with a 2.5-mm thick layer of autoclaved fine-grained, (silt) carbon-rich surface sediment. In the first experiment, estimates of the impact were based on measurements of chlorophyll alpha, biomass of microalgae, bacteria, and meiofauna, and bacterial production. The main purpose of the second experiment was to study the effect on sediment oxygen profiles using microsensors. Within a week, after being covered by fine sediment, benthic microalgae (particularly diatoms) had migrated upward and the oxygen profiles were restored at the sediment surface by photosynthesis. However, the oxygen-producing layer became thinner and the algal composition changed. Bacterial biomass was restored to the same level as in the sandy sediment. Meiofauna also appeared to move upward and the meiofaunal composition was reestablished. The results suggest that the microbenthic community of sandy sediment has an inherent capacity to recover after a moderate deposition of fine-particle sediment. Active upward migration of benthic diatoms appears to be a key mechanism for restoring the oxygenation of the sediment surface. The altered sediment type also implies changed species composition, and hence altered benthic trophic interactions, which may affect, for example, flatfish recruitment.
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