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1.  Activation of the maternal caregiving system by childhood fever – a qualitative study of the experiences made by mothers with a German or a Turkish background in the care of their children 
BMC Family Practice  2013;14:35.
Background
Childhood fever represents a frequent cause to consult a primary care physician. “Fever phobia” describes a fearful and irrational view of fever shared by many parents with different cultural backgrounds. The study aims to explain the experiences of mothers of children having a fever and to analyze the role of the mothers’ cultural background with regard to their experiences by comparing the accounts of mothers with a German with those from a Turkish background. Disease and context specific knowledge about the influence of culture can be important for effective counselling.
Methods
We applied a qualitative approach using in-depth interviews with 11 mothers with a Turkish and 9 with a German background living in Germany. The interviews were conducted at the participants´ homes from May to October 2008. Data was audio-recorded and transcribed verbatim. Grounded Theory was used as a framing methodology including open, axial and selective coding. Analysis was performed in a group with members of different professional and cultural backgrounds.
Results
Mothers experienced their child’s fever not merely as elevated temperature but as a potentially dangerous event. A deeply rooted urge to protect the child from harm was central to all participants’ experience. The caregiving system model offers a good theoretical foundation to explain the findings as it incorporates the unique relational quality of care giving mothers to their children. The cultural background represents an important context variable influencing the explanatory models and strategies of dealing with fever. The identified culturally influenced concepts sometimes match and sometimes conflict with medical knowledge.
Conclusion
By applying the caregiving system model which is a part of attachment theory (Bowlby) maternal actions can be understood as an understandable attempt to protect the child from harm. The mothers´ decisions what to do when a child has a fever can be culturally influenced. This may lead either to a frequent use of services or to an underestimation of the child’s state of health. The mothers´ caring role and emotional state should be acknowledged; her concerns, explanatory models and strategies should be elicited and taken seriously in order to maintain a trustful relationship, provide effective counselling and thereby insuring optimal care for the children.
doi:10.1186/1471-2296-14-35
PMCID: PMC3607993  PMID: 23506372
Childhood fever; Fever phobia; Caregiving system; Culture; Parental experience; Qualitative methods
2.  Implementing and Evaluating the First German Young-Carers Project: Intentions, Pitfalls and the Need for Piloting Complex Interventions 
The Open Nursing Journal  2011;5:38-44.
The aim of the study was to develop, implement and evaluate a concept for the first support program for young carers and their families in Germany. This paper intends to critically review the implementation of that study and describe the problems experienced by the research team, including: the complexity of the intervention itself, the difficulty of finding host organizations, the lack of infrastructure, different values and beliefs about the project aims held between the host organization and the research team, shortage of time, identifying and recruiting families among the hidden population of young carers. These initial problems led to the re-constructuring of the original research design. In order to evaluate factors that influenced these difficulties, the original research intentions, emerging problems and their consequences will be presented.
doi:10.2174/1874434601105010038
PMCID: PMC3109739  PMID: 21660183
Young carers; complex intervention; implementation process.
3.  Germany’s First Young Carers Project’s Impact on the Children: Relieving the Entire Family. A Qualitative Evaluation 
The Open Nursing Journal  2011;5:86-94.
Background:
In 2009, the first German young carers project “SupaKids” was implemented in a large German city. The project’s concept was mainly based on findings of a prior Grounded Theory study, and the concept’s aim was to focus on supporting enrolled families (especially the children) in order to prevent negative effects. Quantitative as well as qualitative data have been assessed for the project’s evaluation. In this paper, first results on the mainly qualitative evaluation concerning the project’s impact are presented.
Results:
The project has an impact on the entire family. Both parents and children perceive the project as a kind of shelter, where they a) are allowed to be as they are, b) don’t have to explain themselves, c) meet others in similar situations, d) may deposit their sorrows, e) have a first port of call for any problem, f) experience a hiatus from the domestic situation, and g) find friends and peers. All enrolled families value this shelter as a copious relief.
Conclusions:
The project’s concept has delivered an optimal performance in practice: the family-orientation seems to be appropriate, the concept’s modules seem to be all-embracing, and the modular body of the concept has been confirmed. The project relieves the entire family.
Trial Registration Number: NCT00734942.
doi:10.2174/1874434601105010086
PMCID: PMC3227871  PMID: 22135716
Young-carers; evaluation; complex intervention.
4.  Recruitment rates and reasons for community physicians' non-participation in an interdisciplinary intervention study on leg ulceration 
Background
This article describes the challenges a research team experienced recruiting physicians within a randomised controlled trial about leg ulcer care that seeks to foster the cooperation between the medical and nursing professions. Community-based physicians in North Rhine-Westphalia, Germany, were recruited for an interdisciplinary intervention designed to enhance leg ulcer patients' self-care agency. The aim of this article is to investigate the success of different recruitment strategies employed and reasons for physicians' non-participation.
Methods
The first recruitment phase stressed the recruitment of GPs, the second the recruitment of specialists. Throughout the recruitment process data were collected through phone conversations with GP practices who indicated reasons for non-participation.
Results
Despite great efforts to recruit physicians, the recruitment rate reached only 26 out of 1549 contacted practices (1.7%) and 12 out of 273 (4.4%) practices during the first and second recruitment phase respectively. The overall recruitment rate over the 16-month recruitment period was 2%. With a target recruitment rate of n = 300, only 45 patients were enrolled in the study, not meeting study projections. Various reasons for community physicians' non-participation are presented as stated spontaneously during phone conversations that might explain low recruitment rates. The recruitment strategy utilised is discussed against the background of factors associated with high participation rates from the international literature.
Conclusion
Time, money, and effort needed during the planning and recruitment phase of a study must not be underestimated to avoid higher than usual rates of refusal and lack of initial contact. Pilot studies prior to a study start-up may provide some evidence on whether the target recruitment rate is feasible.
Trial registration
Current Controlled Trials ISRCTN42122226.
doi:10.1186/1471-2288-9-61
PMCID: PMC2733138  PMID: 19682354
5.  Young carers in Germany: to live on as normal as possible – a grounded theory study 
BMC Nursing  2008;7:15.
Background
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.
Methods
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.
Results
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'.
Conclusion
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.
doi:10.1186/1472-6955-7-15
PMCID: PMC2627850  PMID: 19108719
6.  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 
BMC Public Health  2008;8:414.
Background
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.
Methods
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.
Results
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.
Conclusion
The KIDSCREEN questionnaires seems adequate to evaluate the intervention as their items cover young carer's needs and problems most accurate.
doi:10.1186/1471-2458-8-414
PMCID: PMC2625356  PMID: 19091099
7.  A systematic review on the impact of leg ulceration on patients' quality of life 
Background
A systematic review was conducted to analyse journal articles that describe or measure the impact of leg ulceration on patients' quality of life (QoL) in order to improve the content of an educational programme that aims to enhance self-care agency in leg ulcer patients.
Method
Original articles published in English and German between 1990 and 2006 were included if the findings were analysed at the level of patients. Articles were excluded if (1) they investigated the impact of specific treatments or settings on QoL or (2) focused mainly on arterial ulcers or diabetic foot ulcers.
Results
Twenty-four original research articles met the inclusion criteria; 11 studies used a quantitative, 11 studies a qualitative, and 2 used a mixed method approach. The findings were collapsed into 5 core domains. Quantitative studies commonly investigated the parameters of pain, sleep, social isolation, and physical mobility. Patients had significantly more pain, more restrictions regarding social functioning, less vitality, and limitations with respect to emotional roles compared to the respective controls. Other problem areas identified were restrictions in work capacity, recreation, social interaction, psychological well-being, as well as problems caused by treatment regimes. Inconclusive results were obtained regarding pain intensity, physical restrictions, and gender effects.
Limitations
Numerous original studies neither undertook a differentiation of participants by ulcer aetiology nor did they analyse the results according to gender differences.
Conclusion
As leg ulceration has an impact on QoL, national guidelines on the treatment of leg ulceration need to more specifically address these far-ranging effects identified in this review.
doi:10.1186/1477-7525-5-44
PMCID: PMC1947954  PMID: 17651490

Results 1-7 (7)