Sinterklaasrel in Maastricht. Escaleert het Limburgs nationalisme? artikel in DDL op 6 december 2007.
Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, completed the validated screening‐questionnaire Distress thermometer for parents of a chronically ill child, including questions on overall distress (score 0–10; ≥4 denoting “clinical distress”) and everyday problems (score 0–36). Data were compared to 1,134 control‐group‐parents of healthy children. Mothers reported significantly less overall distress (2, 1–4 vs. 3, 1–6; p = .049; r = −.07) and total everyday problems (3, 0–6 vs. 4, 1–8; p = .03; r = −.08) compared to control‐group‐mothers. Mothers without MFS reported significantly less overall distress compared to mothers with MFS, both of a child with MFS (1, 0–4 vs. 3.5, 2–5; p = .039; r = −.17). No significant differences were found between the father‐groups, nor between the group of healthy parents of an affected child living together with an affected partner compared to control‐group‐parents. No differences in percentages of clinical distress were reported between mothers and control‐group‐mothers (33 vs. 42%); fathers and control‐group‐fathers (28 vs. 32%); nor between the other groups. Distress was not associated with the children's MFS characteristics. Concluding, parents of a child with MFS did not show more clinical distress compared to parents of healthy children. However, clinical distress was reported in approximately one‐third and may increase in case of acute medical complications. We advise monitoring distress in parents of a child with MFS to provide targeted support.
The ambition of a transition to a sustainable society brings forth the dual challenge to preserve historical buildings and simultaneously improve the energy performance of our built environment. While engineers claim that a dramatic reduction of energy use in the built environment is feasible, it has proven to be a difficult and twisting road.In this paper we focus on historical buildings, where difficulties of energy reduction are paramount, as such buildings provide local identity and a connection to our past. It is a EU policy objective to conserve and redesign heritage buildings like prisons, military barracks, factories, stations, and schools. Such redesign should also ensure reduction of energy use without compromising historical identity. In this paper we conceptually and empirically investigate how the two conflicting aspirations unfold. In particular we elaborate the obduracy and scripts of buildings, to clarify how they resist change and invite a specific use. We analyse the tensions between identity and energy conservation in a case study of a restoration project in Franeker. This buildinghas recently undergone a restoration, with energy efficiency as one of its goals.Scripts and networks are traced by a combination of methods, such as studyinglayout, materials and building history, and qualitative interviews with restoration architects and users. We identified three types of strategies to conserve identity and energy: design strategies; identity strategies and network strategies. Such strategies are also relevant for other efforts where conservation and innovation have to be reconciled.
