Kinder und Jugendliche als pflegende Angehörige: Einblick in die Situation Betroffener und Möglichkeiten der Unterstüzung. T. 2, Konzeptentwicklung und Planung von familienorientierten Unterstützungsmaßnahmen für Kinder und Jugendliche als pflegende Angehörige

Ende des Jahres 2012 wurde eine Studie – beauftragt vom Bundesministerium für Arbeit, Soziales und Konsumentenschutz (Sozialministerium) – veröffentlicht, die erstmalig in Österreich auf die Situation pflegender Kinder und Jugendlicher aufmerksam machte. Damit rückte eine Gruppe ins öffentliche Interesse, die bisher als solche noch nicht wahrgenommen wurde. Laut dieser Studie leben in Österreich über 40.000 Kinder und Jugendliche, die regelmäßig im Sinne der Langzeitpflege Verantwortung für ein chronisch krankes Familienmitglied übernehmen. Die damit verbundenen Tätigkeiten sind vielfältig und gehen hinsichtlich ihrer Art und Intensität häufig über das hinaus, was für das Alter und die Entwicklung der Betroffenen angemessen ist (Nagl-Cupal et al. 2012). Dies hat zur Folge, dass Pflege durch Kinder und Jugendliche in direktem Zusammenhang mit negativen gesundheitlichen und sozialen Auswirkungen steht. Das Ziel der vorliegenden Arbeit besteht somit in der Entwicklung eines Rahmenkonzepts als Grundlage zur Unterstützung von Young Carers und deren Familien. Damit wird aufgezeigt, durch welche konkreten Maßnahmen Hilfe für diese Gruppe geleistet werden kann. Gleichzeitig gibt das Rahmenkonzept eine Orientierung für jene Institutionen, die zielgruppen- und bedürfnisorientierte Unterstützungsmaßnahmen für Young Carers implementieren wollen. Das Ziel der vorliegenden Arbeit besteht somit in der Entwicklung eines Rahmenkonzepts als Grundlage zur Unterstützung von Young Carers und deren Familien. Damit wird aufgezeigt, durch welche konkreten Maßnahmen Hilfe für diese Gruppe geleistet werden kann. Gleichzeitig gibt das Rahmenkonzept eine Orientierung für jene Institutionen, die zielgruppen- und bedürfnisorientierte Unterstützungsmaßnahmen für Young Carers implementieren wollen

Kinder und Jugendliche als pflegende Angehörige: Einblick in die Situation Betroffener und Möglichkeiten der Unterstüzung. T. 1, Einsicht in die Situation gegenwärtiger und ehemaliger pflegender Kinder in Österreich

Kinder und Jugendliche, die regelmäßig ein chronisch krankes Familienmitglied pflegen, sind ein globales Phänomen. In Österreich ist der Situation pflegender Kinder und Jugendlicher, mit Ausnahme einer größeren Anzahl von Diplomarbeiten am Institut für Pflegewissenschaft der Universität Wien, bisher noch wenig Aufmerksamkeit geschenkt worden. Es fehlt sowohl am Einblick in das Thema der sogenannten „Young Carers“ generell als auch an qualifizierten Hilfsangeboten. Ausgehend von einem parlamentarischen Entschließungsantrag hat das Bundesministerium für Arbeit, Soziales und Konsumentenschutz das Institut für Pflegewissenschaft der Universität Wien mit einer Studie beauftragt, die die Situation pflegender Kinder in Österreich untersuchen soll. Das Ziel der vorliegenden Studie besteht darin, Einsicht in die Situation pflegender Kinder zu nehmen. Diese Einsicht erfolgt in Form einer fundierten Zahlenbasis über die genaue Anzahl und die Situation gegenwärtig pflegender Kinder ebenso wie auf Grundlage der Beleuchtung der Situation ehemaliger pflegender Kinder und der Auswirkungen kindlicher Pflegeerfahrungen im Erwachsenenalter. Abgeleitet von den Ergebnissen und dem internationalen Diskurs werden Empfehlungen formuliert, auf deren Grundlage pflegende Kinder und Jugendliche unterstützt werden können

Pain Interventions for people with dementia: a quasi-experimental study

Abstract Background Due to the complexity of the provision of care for people with dementia, pain assessment and management is still considered to be lacking. An optimal way to support frontline staff in providing pain assessment and management for people with dementia living in nursing homes has not yet been identified. The success of supporting interventions seems dependent on contextual factors in the nursing homes. This study, therefore, analyzes the feasibility of a nurse-led training intervention, using repeated on-site case studies, in modifying pain intensity and frequency in people with dementia. Methods Using a quasi-experimental design, we undertook a multi-center study of nurse-led training in pain management, with subsequent on-site case studies. Healthcare workers from 3 nursing homes assessed pain in 164 residents with dementia over 147 days. We used mixed-effect growth curve models with spline regression to analyze the data. Results We found that on-site case studies support frontline staff with pain management and assessment. Repeated reflection in case studies led to significantly longer pain free intervals (from 4.7 at baseline to 37.1 days at second follow-up) and decreased frequency of pain events (OR 0.54 at first follow-up and 0.43 at second follow-up). However no trends regarding pain intensity could be found. Therefore, on-site case studies may be valuable for improving pain frequency and pain-free intervals over time. Conclusion This feasibility study shows the potential of on-site support for frontline nursing home staff. On-site case studies may also affect health outcomes in people with dementia. However, the complexity of dementia care necessitates the management of a broader range of needs. Trial registration The study was retrospectively registered on the tenth of January 2017 with the German registry of clinical trials (DRKS00009726)

Intensive care nurse-family engagement from a global perspective: A qualitative multi-site exploration

Background: Critical illness is distressing for families, and often results in negative effects on family health that influence a family\u27s ability to support their critically ill family member. Although recent attention has been directed at improving care and outcomes for families of critically ill patients, the manner in which nurses engage with families is not fully understood. Objectives: To describe nurses’ perceptions and practices of family engagement in adult intensive care units from a global perspective. Design: A qualitative-descriptive multi-site design using content analysis. Settings: The study was conducted in 26 intensive care units of 12 urban, metropolitan, academic medical centers in ten countries, spanning five continents. Participants: A total of 65 registered nurses (77% women, age of M = 39.5, SD = 11.4 years) participated. Most held intensive care certification (72%) and had worked on average 10 (SD = 9.6) years in the ICU. Methods: Semi-structured, individual interviews (M = 38.4 min, SD = 12.0) were held with ICU nurses at the hospital (94%) or their home using an interview guide. Qualitative interview data were analysed using inductive content analysis. Results: We found that nurse-family engagement was an ebb and flow of relational power that needed to be carefully negotiated and balanced, with nurses holding and often exerting more power than families. Constant fluctuations in nurses’ practices of engagement occurred in day-to-day practice from shift-to-shift and from nurse-to-nurse. Family engagement was dependent on individual nurses’ attitudes and perceptions of family, the patient\u27s condition, and workload. Lastly, family engagement was shaped by the ICU context, with team culture, collaborative relationships, unit structures and organizational resources either enabling or limiting nurses’ ability to engage with families. Conclusions: This global study provides an in-depth understanding of the way nurses engage with families in ICU and reflects many different cultures and health systems. We found that nurse-family engagement was marked by a shifting, yet often unequal power distribution in the nurse-family relationship, inconsistent nurse engagement practices, both of which resulted in variable family engagement in intensive care. Our research contributes a detailed description of engagement as practiced in the everyday delivery of health care. A more concentrated team effort, based on a shared culture and defined framework of family care is needed to ensure that families of critically ill persons are fully engaged in all aspects of intensive care

Caring in mind? Professionals’ awareness of young carers and young adult carers in Switzerland

Findings from international research emphasis the need of these young people to be identified and recognised. Therefore, a nationwide quantitative study of professionals' awareness was conducted in the Swiss context. Data were collected from professionals working in education, healthcare and social services. The study examined professionals’ familiarity with the terms used to describe young people with caring responsibilities; their ability to identify the population in their professional context; their perception of the relevance of the issue; their ability to support them; and their own training needs. Potential study participants were contacted via email. Data were collected using an online survey, which was open for 14 weeks during the period of September to December 2016. Survey data from 2,311 professionals, who reported being regularly in contact with young people with caring responsibilities in their occupational context, were included for analysis. Of all terms presented in the survey, young carer (YC) was the term most familiar to all professionals. Among healthcare and education sector, the percentage of professionals familiar with this term was higher than that among professionals from social services. Professionals from social services were the most likely to consider the issue relevant to their work, those from education were the least likely. Professionals who were familiar with the terms describing YC were more likely to consider the issue relevant to their work. Study results showed that more than half of the respondents had not identified young people with caring responsibilities, and that the ability of participants to identify YC was related to their occupational sector. The perceived ability to support YC was related to their reported ability to recognise them. In order to enable professionals to support YC, raising awareness, providing training for professionals and a national network of existing organisations should be well considered

Experiences of being a former young carer: effects in the transition into adulthood and in the present life situation

This qualitative study aims to describe the experiences of adults with caring responsibilities during their childhood. 16 semi-structured interviews with former young carers were conducted and analyzed using open and axial coding procedures and constant comparison techniques. Being responsible as a child in terms of caregiving has an impact on every person concerned. When entering adulthood, most former young carers maintain the responsibility for the ill person. They feel torn between the effort of trying to arrange their life in a different way and holding on to a life where responsibility is still a dominant concern. They remain silent about caregiving due to the fear of painful memories, or the inability to recognize themselves as former young carers. Knowledge of former young carers’ situation can improve the understanding of how caring shapes the transition into adulthood and can help to prevent an inappropriate caring role of actual caregiving children

Ready and able? Professional awareness and responses to young carers in Switzerland

Background: The situation of children, adolescents, young adults with caring responsibilities and their families has only recently been addressed in the Swiss context. Initial findings show a low level of awareness among professionals towards young people with caring responsibilities, and also a lack of specific support services nationally for young carers. This might suggest that the support needs of young carers and young adult carers are not currently being recognised or met in Switzerland. Aim: The purpose of this analysis was to explore to what degree young carers' needs for support are currently met by professionals. We evaluated how professionals in Switzerland currently support young carers in their occupational context; what kind of organisations they refer young carers to; and if the current support approaches meet international recommendations (drawn from research and policy in other countries). Methods: Data from a cross-sectional online survey completed by 2142 professionals from education, healthcare and social services in Switzerland were analysed. The data included respondents' demographics, professional background, awareness of young carers' situations and circumstances, ability to support young carers, referrals to other organisations, as well as approaches to support young carers. We conducted text analysis of the open-ended answers according to Kuckartz (2014) as well as descriptive statistical analysis and Chi-Square independence tests. Results: Just over half (55.8%) of the professionals in our study reported being able to support young carers. Five different categories of support interventions were identified: counselling ; connecting with others ; emotional support ; including the family/network; and providing practical skills & illness-related knowledge . Professionals who reported that they themselves had a caring role when they were young were more likely to be able to support young carers ( p < .001 ). Professionals familiar with the term 'young carers' more often mentioned systemic support approaches (such as family-centred procedures and coordination/interdisciplinary cooperation) than those who were not familiar with the term. Conclusion: Study results show that many professionals in Switzerland address relevant realms and specific challenges for young people with caring responsibilities without being familiar with the experiences or needs of young carers. How they support young carers and young adult carers, perhaps surprisingly given their lack of awareness and specific knowledge, correspond with the main approaches currently found in the international literature recommendations for professionals working with young carers. The fact that systemic approaches of support were less often described, especially by professionals unfamiliar with the term 'young carer', raises the question whether appropriate sustainable and long-term support can be provided without having a clear understanding of the concept, experiences and specific needs of young carers. The study results provide a national starting point to develop support provisions and interventions for young carers. The results also offer relevant data for policy recommendations

Wer sind Young Carers? Analyse der Begriffsverwendung im deutsch-sprachigen Raum und Entwicklung einer Definition

Einleitung: Kinder und Jugendliche als pflegende Angehörige, die ein Familienmitglied oder eine nahestehende Person mit einer Erkrankung oder Beeinträchtigung unterstützen, leben oft versteckt vor der Öffentlichkeit und wenig beachtet vom Gesundheits-, Bildungs- und Sozialwesen. In den letzten Jahren ist ein Anstieg an Forschung und Unterstützungsprojekten zu verzeichnen. Dabei zeigt sich, dass der aus Großbritannien stammende Begriff "Young Carers" unterschiedlich ins Deutsche übersetzt und je nach Übersetzung mit verschiedenen Attributen besetzt ist. Ein einheitliches Begriffsverständnis ist jedoch für den internationalen wissenschaftlichen Dialog, wie auch Theorie-Praxis-Transfer von hoher Relevanz. Ziel: Das Ziel dieses Artikels ist es, unterschiedliche Begriffsverwendungen zu analysieren und zu konzeptualisieren, die von Fachpersonen für die Unterstützung dieser Kinder und Jugendlichen verwendet werden. Davon ausgehend wird eine deutschsprachige Definition dieser Zielgruppe entwickelt, die als Grundlage für den öffentlichen und wissenschaftlichen Diskurs dient. Methodik: Die gewählte Methode ist die Begriffsanalyse nach Walker und Avant (2014). Ergebnisse: Die Analyse verdeutlichte die unterschiedlichen Verwendungen des Begriffs, wobei zentrale Merkmale - das Vorhandensein einer erkrankten und unterstützungsbedürftigen Person, das Alter der jungen Menschen, die übernommenen Tätigkeiten und das hohe Ausmaß an übertragener Verantwortung - die Zielgruppe charakterisieren. Diskussion: Nicht alle Kinder von Angehörigen oder Nahestehenden mit Erkrankung oder Beeinträchtigung übernehmen Pflege und Unterstützung. Doch ein Teil von ihnen übernimmt diese Aufgaben in einem signifikanten Ausmaß. Schlussfolgerungen: Die Analyse zeigt, dass eine Präzisierung der im deutschsprachigen Raum verwendeten Begrifflichkeiten zur Zielgruppe notwendig ist. Eine gemeinsam verwendete Definition ermöglicht zum einen eine Identifizierung durch Fachpersonen und Betroffene selbst und zum anderen die Anschlussfähigkeit an den rasch voranschreitenden internationalen Diskurs

Who are „Young Carers”? Analysis of the Use of the Term in German Speaking Countries and Development of a Definition / Wer sind Young Carers? Analyse der Begriffsverwendung im deutschsprachigen Raum und Entwicklung einer Definition

Children and adolescents with caring responsibility who are looking after a family member or a person close are often hiding from the view of the public. They are not well recognised from professionals from health care, education and social services. Several research as well as support programmes have been initiated within the last years. It became obvious that the term ‘young carers’ was translated in various ways into German and connected with different attributes. An integral understanding is yet of high relevance for the international dialogue as well as for the transfer from theory to practice

Being we and being me: Exploring the needs of Austrian families with caring children

Children and adolescents with caring responsibilities are an uncontested reality in our society. Most are hidden from public view, and they perform a broad range of caring activities for chronically ill or disabled family members. The research literature has accumulated a comprehensive body of knowledge about young carers’ personal needs. However, knowledge and understanding are limited regarding the needs of young carers’ families. This knowledge can contribute to preventing children and adolescents from assuming inappropriate caring roles. A qualitative research approach was used to investigate the needs of young carers’ families in terms of managing daily caring demands. Nine family interviews were conducted with 34 individuals including 15 young carers during spring/summer 2015 in eastern Austria. Open and axial coding procedures and constant comparison method were used to analyse the data. The findings revealed that young carers’ families need to live in accordance with their inherent family logic. Family logic is generated and maintained via (i) family reciprocity that involves the natural help within the family, (ii) individual developmental space that allows family members to be perceived and act as individuals and (iii) network cooperation that offers formal and informal support and recognition from society in general. The findings contribute to understanding how families with caring children manage the caring demands of their everyday lives. The findings also indicate that formal support for families with young carers should consider the individuality of caring arrangements with respect to the holistic and personal needs and avoid stigmatising families that integrate children into caring.© 2018 The Author