Implementing and Evaluating the First German Young-Carers Project: Intentions, Pitfalls and the Need for Piloting Complex Interventions

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

Ambivalenz- und Ambiguitätserleben gesunder Geschwister von Kindern und Jugendlichen mit chronischer Erkrankung

"Gegenstand dieses Beitrages, der auf einer Grounded Theory Studie zur Situation von Geschwistern von Kindern und Jugendlichen mit chronischer Erkrankung basiert, ist ihr Erleben von Ambivalenz und Ambiguität. Dieses dialektische Verhältnis von Gefühlen, Gedanken und Handlungen prägt die Geschwisterbeziehung und somit die Persönlichkeitsentwicklung. Ist das alltägliche Leben durch die Präsenz einer chronischen Erkrankung irritiert, verändert sich die Konstellation in den geschwisterlichen Rollen. Neben Ambivalenz- und Ambiguitätserfahrungen beschäftigt sich der Aufsatz auch mit den resultierenden Umgangs- und Bewältigungsformen der gesunden Geschwister. Ein besonderes Potential bietet in diesem Kontext die Ambiguitätstoleranz als die Fähigkeit, Widersprüche und Mehrdeutigkeit auszuhalten." (Autorenreferat)"Research object of this contribution based on a grounded theory study exploring siblings' perspective of growing up with a brother or sister affected by a chronic illness is the experience of ambivalence and ambiguity of the healthy siblings. Sibling's bond - significant for the development of personality and identity in childhood and adolescence - is determined by these opposing tensions of feelings, thoughts and actions. Family life faced by chronic illness of one child is also associated with a shift in siblings' roles. Besides the experiences of ambivalence and ambiguity related to this specific relationship, this paper also explores how healthy siblings handle and cope with this situation. Tolerance of ambiguity as a personal capability is the resource to master these antagonisms and ambiguity." (author's abstract

Shaping Quality of Life with Nursing Assistance. A Grounded Theory Approach to Nursing Care for People with Physical Disabilities and Interactions with Carers in Long-Term Care

Context: Although the number of people with physical disabilities who need nursing support is increasing, there is a lack of empirical knowledge about how they experience necessary care support. This knowledge is a prerequisite for enabling self-determination in the provision of care and for providing care based on needs and requirements. People with physical disabilities live in residential institutions and their own homes with the support of care services, and they are dependent on permanent nursing assistance. Objective: This qualitative grounded theory study describes the importance that people with physical disabilities ascribe to the provision of care and how they organise their cooperation with caregivers. Methods: Twenty-seven problem-centred interviews with people who had a permanent physical disability and a need for care were analysed using the grounded theory approach. Findings: People with physical disabilities and a need for care want to enhance their quality of life with assistance. Quality of life is influenced by their wishes regarding assistance, acceptance of the physical disability, (previous) experience with assistance and the possibility of actively influencing the implementation of necessary assistance. The development and maintenance of a friendly relationship with professional carers represent a strategy for achieving quality of life. Limitations: This study focuses on people with physical disabilities who receive care from a professional service. Questions about the influence on family carers remain unanswered. Implications: For successful social participation, people with physical disabilities should be supported by nursing professionals to identify and express their priorities and needs

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

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

Vaginal Birth After Cesarean in German Out‐of‐Hospital Settings: Maternal and Neonatal Outcomes of Women With Their Second Child

Background To offer vaginal birth after cesarean (VBAC) in a hospital setting is recommended in international guidelines, but offering VBAC in out‐of‐hospital settings is considered controversial. This study describes neonatal and maternal outcomes in mothers who started labor in German out‐of‐hospital settings. Method In a retrospective analysis of German out‐of‐hospital data from 2005 to 2011, included were 24,545 parae II with a singleton pregnancy in a cephalic presentation at term (1,927 with a prior cesarean and 22,618 with a prior vaginal birth). Result The overall VBAC rate was 77.8 percent. The intrapartum transfer rate to hospital was 38.3 percent (prior cesarean) versus 4.6 percent (prior vaginal) (p < 0.05), and the 10‐minute Apgar < 7 rate was 0.6 versus 0.2 percent (p < 0.05), and the nonemergency intrapartum transfer rate was 91.5 versus 85.0 percent (p < 0.05). Prolonged first stage of labor was the most common reason for intrapartum transfer in both groups. The leading reason for postpartum transfer was retained placenta. Discussion There was a high rate of successful VBAC in this study. The high nonemergency transfer rate for women with VBAC might mean that midwives are more cautious when attending women with a prior cesarean in out‐of‐hospital settings. Further studies are necessary to evaluate which women are suitable for VBAC in out‐of‐hospital settings

Erholungszeiten für Familien von Schwerpflegebedürftigen : Inanspruchnahme und Potenzial von Tages- und Kurzzeitpflege

Hintergrund und Fragestellung: Die Pflege eines schwerpflegebedürftigen Angehörigen stellt eine häufig längerfristige und in vielerlei Hinsicht herausfordernde Aufgabe dar. Dieser Artikel beschäftigt sich mit der Kenntnis, der Nutzung und dem Potenzial von zwei Angeboten, die Erholungszeiten für Angehörige ermöglichen: der Tages- und der Kurzzeitpflege. Aktuell ist ein Anstieg der Nutzung dieser Unterstützungsangebote zu verzeichnen. Die Fragestellung ist, welches Angebot wie von Schwerpflegebedürftigen und ihren Familien angenommen wird und welche Faktoren die Entscheidung zur Nutzung der Tages- oder Kurzzeitpflege beeinflussen. Methode: Grundlage für die Analyse sind Primärerhebungsdaten aus dem Gesundheitsmonitor. Neben einer deskriptiven Analyse werden logistische Regressionen verwendet. Ergebnis: Jeder zweite Antwortende lehnt die Tagespflege ab, gleiches gilt für mehr als jeden Vierten in Bezug auf die Kurzzeitpflege. Die Kenntnis über die beiden Unterstützungs-angebote ist weit verbreitet. Das Potenzial beider Angebote übersteigt die bisherige Nutzung. Die Regressionen zeigen unter anderem, dass die Chance für die zukünftige Inanspruchnahme der Tages- und Kurzzeitpflege signifikant häufiger in den Pflegearrangements besteht, in denen der Gesundheitszustand des Angehörigen schlecht ist. Gleiches trifft für die bisherige Inanspruchnahme der Kurzzeitpflege zu

Vaginal Birth after Caesarean Section in Out-of-Hospital Settings: A Literature Review

Hintergrund: Obwohl nationale und interna­tionale Fachgesellschaften die vaginale Geburt nach Sectio caesarea empfehlen, wird ein außerklinischer Geburtsort vor allem vor dem Hintergrund der Gefahr einer Uterusruptur und möglichen Placentalösungsstörungen kritisch diskutiert. Dennoch entscheidet sich eine steigende Anzahl von Frauen mit Status nach Sectio caesarea für eine Geburt im außerklinischen Setting. Hier stellt sich die Frage nach dem maternalen und neonatalen Outcome in internationalen ­Studien. Methode: Literaturrecherche zum Outcome bei vaginaler Geburt nach Sectio caesarea im außerklinischen Setting in den Datenbanken Medline, Cinahl, Embase und in der Cochrane Library in deutscher und englischer Sprache ohne Einschränkung des Erscheinungsjahrs. Ergebnis: In insgesamt 5 Studien wurde eine vaginale Geburtenrate zwischen 73,5 und 98% beschrieben. Nur in einer Studie fand sich eine Uterusruptur. Blutungen/Placentalösungsstörungen wurden in 2 Studien beschrieben (0,5 und 1,7%). Keine der Studien beschrieb mütterliche Todesfälle; kindliche Mortalität (0–1,7%) wurde in 3 Studien beschrieben. Diskussion: Die Studien weisen große Unterschiede in der Studienpopulation, insbesondere bezüglich Parität und vorausgegangener Geburtsmodi auf. 4 der 5 Studien weisen in ihrer Diskussion auf die Sicherheit der vaginalen Geburt bei Status nach Sectio caesarea im außerklinischen Setting hin. Weitere Forschung ist nötig, um auf der Grundlage umfangreicherer Studienergebnisse ratsuchende Frauen kompetent zu beraten.Background: Even though vaginal birth after Caesarean section (VBAC) is recommended, an out-of-hospital setting is discussed controversially. First of all, uterine rupture and placental complications are named. Nevertheless, an increasing number of women with a prior Caesarean section decide to give birth in an out-of-hospital setting. What is the maternal and neonatal outcome in international studies in these cases? Method: The databases of Medline, Cinahl, Embase and Cochrane Library on vaginal birth after Caesarean section in out-of-hospital settings were searched. Included are studies in German and English language without a limit on year of publication, which describe maternal and neonatal outcomes. Results: 5 studies were found. All of them describe a high VBAC rate (73.5–98%). Only one study found uterine ruptures. Haemorrhage/placental complications were described in 2 studies (0.5 and 1.7%). None of the studies found maternal deaths. Neonatal death was described in 3 studies in a range from 0 –1.7%. Discussion: There is a wide difference in the population of the studies. An important difference is the parity of the women and the prior mode of birth. 4 of the 5 studies do not see a reason not to try VBAC in an out-of-hospital setting. Further studies are necessary to inform the increasing number of women who decide to try VBAC in an out-of-hospital setting

Birth in Out-of-Hospital Settings – Differences in Maternal and Neonatal Outcome of Women with their Second Child and a Prior Caesarean Section Compared to First Paras

Hintergrund: Die vaginale Geburt bei Status nach Sectio in der außerklinischen Geburtshilfe wird kontrovers diskutiert. Bei einem international steigenden Anteil von Frauen mit Status nach Sectio stellt sich die Frage nach dem maternalen und neonatalen Outcome in der außerklinischen Geburtshilfe in Deutschland. Methode: Retrospektive Datenanalyse der außerklinischen Perinataldaten aus den Jahren 2005–2011. Es wurden 66 437 Einlingsschwangerschaften in Schädellage am Termin (SSW 37+0 bis 41+6) eingeschlossen. In der vorliegenden Arbeit wurden die Outcome-Parameter von Erstgebärenden den Ergebnissen von Zweitgebärenden mit Status nach Sectio gegenübergestellt. Ergebnisse: Die Rate der vaginalen Geburten bei Frauen mit Status nach Sectio beträgt 77,8%. Bei Erstgebärenden liegt die Rate bei 89,8% (p<0,001). Die subpartale Verlegungsrate ist bei Frauen mit vorausgegangener Sectio signifikant erhöht (38,2 vs. 27,2%; p<0,001). Die protrahierte Eröffnungsphase ist die häufigste Indikation zur Verlegung in beiden Gruppen. Bei den mütterlichen postpartalen Komplikationen und den Kliniktransferraten zeigen sich keine signifikanten Unterschiede. Auch bei den neonatalen Verlegungen und den Apgar-Werten wurden keine signifikanten Unterschiede gefunden. Diskussion: Diese Ergebnisse stimmen mit den Ergebnissen aus anderen Studien überein, die die Geburt im außerklinischen Setting bei Status nach Sectio als Alternative zur Klinikgeburt darstellen. Jedoch werden fast 40% der Frauen mit vorausgegangenem Kaiserschnitt subpartal verlegt. Für die Beratung der Frauen, die sich nach einer vorausgegangenen Sectio das außerklinische Setting als Geburtsort wünschen, ist dies zu berücksichtigen.Background: Vaginal birth after Caesarean (VBAC) in out-of-hospital settings is controversial. With increasing Caesarean rates, more women with a prior Caesarean will decide to give birth in midwife-led birth-centres or at home. Therefore the study explores the question about maternal and neonatal outcomes in German out-of-hospital settings. Method: A retrospective study of German out-of-hospital data from 2005 to 2011 was undertaken. Included were 66 437 singleton pregnancies in cephalic presentation at term. This study describes the outcome parameters of first paras compared to mothers with their second child who had a prior Caesarean. Results: The VBAC rate was 77.8%, and the first para vaginal birth rate was 89.8% (p<0.001). The intrapartum transfer rate of women with a prior Caesarean section was significantly more than for the first paras (38.2 vs. 27.2%; p<0.001). A prolonged first stage was the most frequently documented indication for intrapartal transfer in both groups. There were no significant differences in rates of maternal postpartum complications, or in postpartum hospital transfer rates. Also, neither neonatal transfer rates nor Apgar scores were statistically different between the groups. Discussion: These results are consistent with other studies which reported that an out-of-hospital setting is an alternative to the clinical setting for women with a prior Caesarean. However, the fact that the intrapartum transfer rate of women with a prior Caesarean was almost 40% should be included in antenatal counselling about the place of labour and birth