RESUMO
BACKGROUND: Paediatric palliative and hospice care aims to improve the quality of life of children with life-limiting and life-threatening conditions and their families. The number of these patients has risen significantly in recent years, resulting in an increased need for palliative care for this population. Although the need for paediatric palliative and hospice care is growing, meaningful outcome evaluation to demonstrate its effectiveness as a complex healthcare intervention is in its early stages. For complex interventions (programmes), theory-based evaluations have grown in prominence in recent years. They seek to understand how and why an intervention works by uncovering its underlying mechanisms by means of programme theory. To support both outcome evaluation in paediatric palliative care and a reflective practice of programme theorizing, we aimed to describe the construction of a programme theory for a specialist paediatric palliative and hospice care programme in Austria and to offer a reflective account of its development process. METHODS: We drew on a combination of theory-based evaluation frameworks to construct a programme theory consisting of an action and a change component. Through multiple iterations, incorporating different stakeholders' perspectives and drawing on different sources of knowledge and theory, we theorized how and why the programme likely achieves its intended outcomes. RESULTS: The programme theory outlines the proposed chains of events, causal mechanisms and outcomes of a specialist paediatric palliative and hospice care programme for children and families in several areas corresponding to its main conceptual tenets. Through a range of activities and interventions, the programme triggers coping and adaptation mechanisms that ultimately contribute to family and child wellbeing in physical, psychological, social, and spiritual dimensions. Established trust and partnership between children/families and healthcare professionals as well as a person-centered and family-centered approach were identified as enabling factors. CONCLUSIONS: Our findings provide insights into how a specialized paediatric palliative and hospice care programme works to achieve its intended outcomes for children and families. This helps demonstrate its impact, contributing to meaningful outcome evaluation and service improvement.
Assuntos
Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Pediatria , Humanos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos na Terminalidade da Vida/métodos , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Pediatria/métodos , Desenvolvimento de Programas/métodos , Criança , Avaliação de Programas e Projetos de Saúde/métodos , Qualidade de Vida/psicologiaRESUMO
Nursing skill levels and implementation of Advanced Nursing Practice in Austria: A cross-sectional study Abstract: Background: New fields of practice are emerging under the concept of "Advanced Nursing Practice" (ANP) that offer specialised care provided by nurses who hold master's degrees. In Austria, nurses are currently being trained as Advanced Practice Nurses (APN). Aim: The project aimed to investigate which advanced nursing practice tasks according to the Hamric model are undertaken by nurses at different levels of qualification in Austria. Methods: Certified nurses did participate in a cross-sectional survey through an online questionnaire based on the Role Delineation Model and tailored to the Austrian context. The tasks were assigned based on the Hamric model and were tested and evaluated descriptively according to the qualification level through factor analysis. Results: Completed data was available from 105 participants, among them 80% with undergraduate education, 20% with a master's degree. A tendency in the results showed that the level of qualification was related to the activities carried out. The higher the academic degree, the more activities were performed in the field of leadership. The central ANP-competencies, research and education, are rather weak among all respondents. Conclusion: The results show that activities corresponding to the competencies of an ANP are performed by a heterogeneous group of nurses. Conditions and a standardized understanding of ANP need to be established in order to offer a professional practice that matches the competency profile.
Assuntos
Educação de Pós-Graduação em Enfermagem , Humanos , Áustria , Estudos Transversais , Competência Clínica , Inquéritos e QuestionáriosRESUMO
AIMS AND OBJECTIVE: To explore differences in nurses' attitudes regarding the importance of family in nursing care and factors associated with nurses' attitudes across 11 European countries. BACKGROUND: Family involvement in healthcare has received attention in many European healthcare systems. Nurses have a unique opportunity to promote family involvement in healthcare; however, their attitudes and beliefs may facilitate or impede this practice. DESIGN: A cross-sectional survey across European countries. METHOD: A broad convenience sample of 8112 nurses across 11 European countries was recruited from October 2017 to December 2019. Data were collected using the Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA) questionnaire. We used the STROBE checklist to report the results. RESULTS: There were significant differences in nurses' attitudes about families' importance in nursing care across Europe. Country was the factor with the strongest association with the total scores of the FINC-NA. Older age, higher level of education, increased years since graduation, having a strategy for the care of families in the workplace, and having experience of illness within one's own family were associated with a higher total FINC-NA score. Being male and working in a hospital or other clinical settings were associated with a lower total FINC-NA score. CONCLUSION: Nurses' attitudes regarding the importance of family in nursing care vary across 11 European countries. This study highlights multiple factors associated with nurses' attitudes. Further research is necessary to gain a deeper understanding of the reasons for nurses' different attitudes and to develop a strong theoretical framework across Europe to support family involvement in patient care. The inclusion of family healthcare programs in the baccalaureate curriculum may improve nurses' attitudes. RELEVANCE FOR CLINICAL PRACTICE: In clinical practice, the focus should be on identifying influencing factors on nurses' attitudes to enhance families' importance in nursing care across Europe.
Assuntos
Enfermagem Familiar , Enfermeiras e Enfermeiros , Cuidados de Enfermagem , Humanos , Masculino , Feminino , Atitude do Pessoal de Saúde , Estudos Transversais , Europa (Continente) , Inquéritos e QuestionáriosRESUMO
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).
Assuntos
Demência , Manejo da Dor , Humanos , Demência/terapia , Demência/tratamento farmacológico , Pessoal de Saúde , Casas de Saúde , Dor , Qualidade de VidaRESUMO
Caring for their chronically ill or disabled family members is a responsibility that may be assumed by children and adolescents ("young carers") and may affect young carers' lives in many ways. Some young carers may experience long-term adverse health effects related to their early caring responsibilities and others may demonstrate healthy adaptation. Little research applying nonretrospective designs, however, has been done from the perspective of young carers regarding the psychosocial resources that enable them to handle the responsibility of caring for chronically ill or disabled family members. The aim of the present study, therefore, was to identify psychosocial resources used by young carers in Austria. Ten children and adolescents (aged 9-17) took photographs to illustrate their everyday lives. The photographs were then used to guide subsequent interviews. Data were analyzed following the principles of directed qualitative content analysis and using the theoretical lens of resilience. We identified two sets of psychosocial resources: (1) Personal resources comprising (a) being able to spend leisure time and (b) finding distraction from sorrows and problems. (2) Interpersonal resources comprising (a) fostering meaningful friendships, (b) receiving support from the family, and (c) bonding with the ill or disabled family member. Young carers largely have the same repertoire of resources as other children and can use them specifically to respond to the care burden. Interventions to support young carers must focus on promoting peer contact and cohesion within the nuclear family as well as bonding with the ill or disabled relative.
Assuntos
Cuidadores/psicologia , Doença Crônica/enfermagem , Família/psicologia , Fotografação , Resiliência Psicológica , Adolescente , Áustria , Criança , Pessoas com Deficiência , Feminino , Humanos , Masculino , Apoio SocialRESUMO
Nutritional management in malnourished children and adolescents in home care - recommendations from a setting-specific evidence-based guideline Abstract. Background: Malnutrition in children is an underestimated phenomenon that is frequently unrecognized and therefore not adequately treated. If the treatment is inadequate, malnutrition can lead to a variety of negative consequences for the childrens' development. Corresponding guidelines for malnutrition for pediatric nursing in home care settings are lacking. Aim: The aim of this paper is to present the nutritional management of malnourished children, which was elaborated in the course of developing a setting-specific guideline for pediatric home care. Methods: The developed guideline is based on the approach described by the Scientific Medical Societies Working Group. This approach encompasses a) forming a group of experts, b) defining clinical questions, c) searching the literature, d) evaluating and synthesizing the literature, and d) formulating recommendations. Parents were included to rate the relevance of the recommendations. Results: The nutrition management involves a detailed nutritional assessment, subsequent oral, enteral or parenteral interventions, weight monitoring and a re-assessment of the child's nutritional status. Nurses, as well as parents/legal guardians, play essential roles in planning and implementing nutrition management in the home care setting. Conclusions: The use of the guideline may contribute to the early detection of causes for malnutrition and adequate multidisciplinary treatment of children with suspected or identified malnutrition in the home care setting.
Assuntos
Desnutrição , Avaliação Nutricional , Adolescente , Criança , Humanos , Estado Nutricional , Enfermagem PediátricaRESUMO
AIM: This paper reports the prevalence and its related sociodemographic factors of informal caregiving by underage children in Austria. The quantity and intensity of caregiving activities, the motivation for and effects of caregiving and how this differs from non-caregiving children were investigated. BACKGROUND: Young carers are a worldwide phenomenon. Due to methodological and sampling problems, little quantitative data are available. DESIGN: Cross-sectional, descriptive study. METHODS: Based on a random selection of 85 schools and 474 classes, a total of 7403 children aged 10-14 years completed a self-reporting questionnaire that asked for children's help in their families. Descriptive and inferential statistics were used to analyse the data. RESULTS: In the sample, 4·5% caregiving children were identified. The average age of young carers was 12·5 years. Most young carers were female (69·8% vs. 52·7% in the non-young carers group). Young carers assumed more responsibilities (household tasks, general care and sibling care) than their peers. They showed a higher level of physical (e.g. headache 38·2% vs. 24·4%) and mental (e.g. to worry about 68·1% vs. 41·8%) adverse effects than non-young carers. Extrapolation suggests a rate of 3·5% young carers in underage children of 5-18 years in Austria. CONCLUSION: Data on national level are essential preconditions to initiate support for young carers. Nurses can promote children's health and well-being through prevention of an inappropriate caregiving role.
Assuntos
Cuidadores/psicologia , Adolescente , Áustria , Criança , Estudos Transversais , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: Critical illness is distressing for families, and often results in negative effects on family health that influence a family's 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's 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.
Assuntos
Enfermagem de Cuidados Críticos , Enfermeiras e Enfermeiros , Adulto , Cuidados Críticos , Estado Terminal , Feminino , Humanos , Recém-Nascido , Unidades de Terapia Intensiva , Masculino , Relações Profissional-Família , Pesquisa QualitativaRESUMO
Having a family member in the intensive care unit is a very stressful and demanding situation for the whole family. The aim of this study is to explore how family members are affected by critical illness and how they deal with this situation. A literature review with focus on qualitative studies was carried out to get a deeper insight and understanding of families who have a relative in intensive care unit. 15 qualitative studies have been analysed. For family members the situation is characterised by uncertainty, overwhelming feelings, as well additional responsibilities, and diverging family roles. Family members always put their ill relative in first place, and they do not articulate needs for themselves. They cope with this burdening situation by trying to be near to their relative, with or without being integrated into care. They search for honest information, get social support from significant others, and try to keep realistic hope all the time. The article also shows boundaries in this field of research, and discusses transferability and limitations of the findings.
Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Unidades de Terapia Intensiva , Relações Profissional-Família , Adulto , Humanos , Avaliação das Necessidades , Apoio SocialRESUMO
Aims: To evaluate why no families could be recruited for a nurse-led and family-centred support programme in Austria which aimed to prevent an age-inappropriate caring role for young carers. Design: A qualitative study incorporating qualitative e-interviews and telephone interviews. Method: Twenty-one interviews were conducted with statistically significant project stakeholders (N = 17) and with adult family members of children with caring responsibilities (N = 4). Data collection and analysis were guided by the "Social Marketing Framework." Relevant statements were assigned to the main categories: product; price; promotion; place; and working with partners. Results: The lack of awareness towards young carers, the unfamiliar, open outcome approach of the intervention, the inappropriate language used in promotional materials and the families' fear of stigma while seeking support were identified as central obstacles for successful recruitment of families and implementation of the support programme.
Assuntos
Família , Papel do Profissional de Enfermagem , Adulto , Áustria , Cuidadores , Criança , Humanos , Pesquisa QualitativaRESUMO
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.
Assuntos
Cuidadores/estatística & dados numéricos , Pessoal de Saúde/psicologia , Professores Escolares/psicologia , Assistentes Sociais/psicologia , Adolescente , Adulto , Fatores Etários , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Suíça , Adulto JovemRESUMO
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.
Assuntos
Cuidadores/psicologia , Saúde da Criança , Doença Crônica/epidemiologia , Pessoas com Deficiência/estatística & dados numéricos , Família/psicologia , Adolescente , Áustria , Criança , Feminino , Humanos , Masculino , Pesquisa QualitativaRESUMO
Statistics show that people with migrant and minority background as patients are significant in numbers in the intensive care unit. This also puts family members in the perspective of nursing because family members are an inherent part of the intensive care unit. Family-centered care is perhaps most applicable to vulnerable populations like migrant family in the intensive care unit to meet family member's needs. But very little is known about the situation of migrant and minority family members in the intensive care unit. The aim of the study was to explore the state of the science regarding family-centered care in the intensive care unit of patients with migration background in general and with a possible focus on major migrant populations in Austria-Former Yugoslavian und Turkish origin. A literature review investigated research articles that contained information on migrant and minority family members in the intensive care unit. Key points in the relevant articles were identified and categorized into themes with an explanation of findings at the end. Seventeen articles fulfilled the inclusion criteria. No article was found regarding groups of major migrant population groups in Austria. The included articles uncovered five predominant themes: importance of cultural norms, communication, family dynamics, universal caring, and nursing/provider deficit in culturally competent care. In order to provide adequate nursing care a more cohesive body of information on more specific geographic and cultural populations is recommended. Because of the complete lack of research regarding migrant families of Former Yugoslavian and Turkish origin into Austria, an exploration of this population is recommended.
RESUMO
Este estudo qualitativo tem por objetivo descrever experieÌncias de adultos com responsabilidade de prestaçaÌo de cuidados durante a infaÌncia. Dezesseis entrevistas semiestruturadas com ex-jovens cuidadores foram realizadas e analisadas utilizando procedimentos de codificaçaÌo aberta e axial e teÌcnicas de comparaçaÌo constante. Ser responsaÌvel enquanto criança, em termos de prestaçaÌo de cuidados, tem um impacto sobre todos os envolvidos. Ao entrar na idade adulta, a maioria dos ex-jovens cuidadores mantem a responsabilidade para com a pessoa doente. Sentem-se divididos entre o esforço de tentar organizar sua vida de uma nova forma e aferrar-se a uma vida em que a responsabilidade eÌ ainda uma preocupaçaÌo dominante. Eles permanecem em sileÌncio sobre a prestaçaÌo de cuidados devido ao receio de memoÌrias dolorosas ou pela incapacidade de reconhecer-se como ex-jovens cuidadores. O conhecimento da situaçaÌo de ex-jovens cuidadores permite melhorar a compreensaÌo de como a prestaçaÌo de cuidados molda a transiçaÌo para a vida adulta e pode ajudar a evitar um papel de cuidador inadequado para atuais crianças prestadoras de cuidados.
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.