Young carers in Germany: to live on as normal as possible – a grounded theory study

<p>Abstract</p> <p>Background</p> <p>In contrast to a growing body of research on the situation of adult family care givers, in Germany hardly anything is known about the situation of children and teenagers who are involved in the care of their relatives.</p> <p>Methods</p> <p>In this Grounded Theory study 81 semi structured interviews have been carried out with children and their parents in 34 families, in which one member is chronically ill. 41 children and 41 parents participated and the sample is heterogeneous and diverse.</p> <p>Results</p> <p>On the one hand, there is the phenomenon 'keeping the family together", which describes how families themselves cope with the chronic illness and also, which tasks to what extent are being shifted and redistributed within the family in order to manage daily life. Influencing factors, the children's motives as well as the impact on the children also belong to this phenomenon. The second phenomenon 'to live a normal course of life' describes concrete wishes and expectations of support for the family to manage the hindered daily life. These two phenomena linked together constitute the 'model of experience and construction of familial care, in which children take over an active role'.</p> <p>Conclusion</p> <p>It will be discussed, that the more families are in dire need of support, the more their distress becomes invisible, furthermore, that management of chronic illness is a process, in which the entire family is involved, and thus needs to be considered, and finally, that young carer's relief is not possible without relief of their parents.</p

Cactaceae at Caryophyllales.org- A dynamic online species-level taxonomic backbone for the family

This data paper presents a largely phylogeny-based online taxonomic backbone for the Cactaceae compiled from literature and online sources using the tools of the EDIT Platform for Cybertaxonomy. The data will form a contribution of the Caryophyllales Network for the World Flora Online and serve as the base for further integration of research results from the systematic research community. The final aim is to treat all effectively published scientific names in the family. The checklist includes 150 accepted genera, 1851 accepted species, 91 hybrids, 746 infraspecific taxa (458 heterotypic, 288 with autonyms), 17,932 synonyms of accepted taxa, 16 definitely excluded names, 389 names of uncertain application, 672 unresolved names and 454 names belonging to (probably artificial) named hybrids, totalling 22,275 names. The process of compiling this database is described and further editorial rules for the compilation of the taxonomic backbone for the Caryophyllales Network are proposed. A checklist depicting the current state of the taxonomic backbone is provided as supplemental material. All results are also available online on the website of the Caryophyllales Network and will be constantly updated and expanded in the future. Citation: Korotkova N., Aquino D., Arias S., Eggli U., Franck A., Gómez-Hinostrosa C., Guerrero P. C., Hernández H. M., Kohlbecker A., Köhler M., Luther K., Majure L. C., Müller A., Metzing D., Nyffeler R., Sánchez D., Schlumpberger B. & Berendsohn W. G. 2021: Cactaceae at Caryophyllales.org- A dynamic online species-level taxonomic backbone for the family.-Willdenowia 51: 251-270. Version of record first published online on 31 August 2021 ahead of inclusion in August 2021 issue. Data published through: Http://caryophyllales.org/cactaceae/Checklis

The use of health-related quality of life (HRQOL) in children and adolescents as an outcome criterion to evaluate family oriented support for young carers in Germany: an integrative review of the literature

<p>Abstract</p> <p>Background</p> <p>Young people below the age of 18, whose lives are affected by looking after a relative with a disability or long-term illness, are called young carers. Evidence based family oriented support for young carers and their families in Germany is currently being developed. To allow for scientific evaluation, an outcome criterion needs to be chosen. Until today, there are no assessment instruments available, which focus on young carer's specific demands and needs. As HRQOL seems to be an adequate alternative outcome criterion, an integrative review of the literature was carried out to verify this assumption.</p> <p>Methods</p> <p>The aim of the integrative review was to get information about a) the concept and the common definition of HRQOL in children, b) preferable HRQOL assessment techniques in children, and c) the relevance of HRQOL measures for the population of young carers. An additional aim of the review was to give advice on which instrument fits best to assess young carer's HRQOL in Germany. Searches were conducted in PubMed in order to obtain papers reporting about a) the development or psychometric assessment of instruments measuring HRQOL in children and adolescents up to the age of 18, and b) on the conceptual framework of HRQOL in children.</p> <p>Results</p> <p>HRQOL is a multidimensional construct covering physical, emotional, mental, social, and behavioural components of well-being and functioning as subjective perceived by a person depending on the cultural context and value system one is living in. Young carer's problems and needs are well covered by these common domains of HRQOL. Since no specific HRQOL-measures are available to address young carers, a generic one has to be chosen which a) has been created for use in children, b) allows self- and proxy-report, and c) has good psychometric testing results. Comparing four generic measures with currently best published psychometric testing results, items of the KIDSCREEN cover young carer's specific problems most accurate.</p> <p>Conclusion</p> <p>The KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.</p

Birth in out-of-hospital settings after a caesarean section: A qualitative study of decision-making by the parents

Background: Nearly 1.6% of all births in Germany begin in an out-of-hospital setting. About 5% of these women had a prior cesarean section. Aim: This study explored the decision-making process of parents choosing the out-of-hospital setting for their next birth. Method: 10 couples were interviewed. All women had a prior cesarean section and started their next birth in an out-of-hospital setting. The mothers and fathers were interviewed separately. Structured content analysis was used to analyse the 20 interviews. Results: Some women considered an out-of-hospital setting for their first birth, but chose the hospital because of safety concerns of their partners, or for medical reasons. The negative experience they had while giving birth in the hospital influenced the parents' decision to choose an out-of-hospital setting for their next birth. The decision about the birthplace was negotiated between the partners and with the advice of supportive health care providers. Often, relatives, friends and neighbors were neither involved nor informed. Conclusion: Empathic and sensitive behavior of the clinical health care provider has an influence on the birth experience. Professional and self-reflective behavior supports the well-being of the parents. There seems to be a correlation between the intimately held decision about place of birth and the lack of acceptance of out-of-hospital birth in society.Hintergrund: In Deutschland entscheiden sich jährlich ca. 1,6% der werdenden Eltern für eine außerklinische Geburt. Ca. 5% der Frauen hatten einen direkt vorausgegangenen Kaiserschnitt. Ziel: Diese Studie analysiert den Entscheidungsfindungsprozess der Eltern zur nächsten, außerklinisch angestrebten Geburt. Methode: Qualitative Interviews mit 10 Paaren, die sich nach einem Kaiserschnitt für die außerklinische Geburt entschieden. Die Mütter und Väter wurden einzeln befragt. Die inhaltsanalytische Auswertung der 20 Interviews erfolgte nach Mayring. Ergebnis: Einige Frauen hatten sich bereits in der ersten Schwangerschaft mit dem außerklinischen Geburtsort auseinandergesetzt, suchten aber wegen Sicherheitsbedenken der Partner oder aus medizinischen Gründen eine Klinik auf. Die dann folgende negative Klinikerfahrung beeinflusste die Entscheidung der Eltern für den außerklinischen Geburtsort beim nächsten Kind. Die Entscheidung wurde mit Hilfe professioneller medizinischer Unterstützung zwischen den Partnern ausgehandelt. Verwandte, Freunde und Nachbarn werden in einigen Fällen weder involviert noch informiert. Schlussfolgerung: Empathisches Verhalten der klinischen Fachkräfte hat einen Einfluss auf das Geburtserleben. Hier kann professionelles und selbstreflektierendes Verhalten zum Wohlbefinden der werdenden Eltern beitragen. Das Verschweigen des geplanten Geburtsortes scheint im Zusammenhang mit der fehlenden Akzeptanz des außerklinischen Geburtsortes in der Gesellschaft zu stehen