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A matter of trust - A grounded theory study on the everyday experience of people living with HIV / AIDS Abstract. Background: Provided that the antiretroviral therapy is taken correctly, HIV / AIDS has become a chronic disease allowing for a nearly normal daily life, which is still, however, characterized by specific challenges. Aim: The aim of this study was to explore how HIV / AIDS patients experience and manage their everyday life, against the backdrop of chronification. Method: A qualitative grounded theory approach according to Corbin and Strauss; problem-centered interviews with 18 participants suffering from HIV / AIDS; analysis of data was performed by applying coding strategies and supported by MAXQDA. Results: The present study shows that "trust" is of crucial significance to HIV / AIDS patients in their private, occupational and healthcare environments, where discrimination, stigma and exclusion still occur. The revelation of the infection status represents a particular challenge. We identified three key patterns of trust: evolved trust, controlled trust and distrust / loss of trust. Depending on these patterns, patients approach their condition in strikingly different ways, with apparent consequences on their quality of life. Conclusion: The here established trust patterns provide a theoretical foundation that may serve as a hub for improving support and care of people suffering from HIV / AIDS. Moreover, reducing the social stigma and discrimination faced by these individuals, primarily in the healthcare system, is paramount for the future handling of the disease.
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Infecções por HIV/psicologia , Qualidade de Vida/psicologia , Estigma Social , Fármacos Anti-HIV/uso terapêutico , Teoria Fundamentada , Infecções por HIV/tratamento farmacológico , Humanos , ConfiançaRESUMO
AIMS: To assess the incidence of voluntary stopping of eating and drinking (VSED) in long-term care and to gain insights into the attitudes of long-term care nurses about the VSED. DESIGN: A cross-sectional study. METHODS: Heads of Swiss nursing homes (535; 34%) answered the Online-Survey between June - October 2017, which was evaluated using descriptive data analysis. RESULTS: The incidence of patients who died in Swiss nursing homes by voluntarily stopping eating and drinking is 1.7% and 67.5% of participants consider this phenomenon highly relevant in their daily work. Most participants (64.2%) rate VSED as a natural death accompanied by health professionals and patients are also granted the right to care (91.9%). This phenomenon is expected by the participants less at a young age and more in old age. CONCLUSION: Participants' overall views on the VSED are very positive, whereas it is assumed that VSED is a phenomenon of old age. Professionals still lack sufficient knowledge about this phenomenon, which could be clarified through training. IMPACT: Voluntary stopping of eating and drinking is much discussed interprofessional, but there is a lack of knowledge on how this is perceived in the context of long-term care and about the incidence of the phenomenon. Voluntary stopping of eating and drinking is rare but noticeable end-of-life practises that is considered by professionals to be mainly dignified and peaceful, although moral concerns make it difficult to accompany. These findings call on long-term care institutions to discuss VSED as an end-of-life practice. Positioning on the issue provides clarity for staff and patients and promotes to develop standardized care. International Registered Report Identifier (IRRID): DERR1-10.2196/10358.
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Atitude do Pessoal de Saúde , Eutanásia Ativa Voluntária/psicologia , Jejum/psicologia , Assistência de Longa Duração/psicologia , Recursos Humanos de Enfermagem Hospitalar/psicologia , Preferência do Paciente/psicologia , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , SuíçaRESUMO
BACKGROUND: Family members often need to be supported in informal care of the elderly and desire to be involved into care planning and decision-making. Valid and reliable instruments are needed to measure how family members perceive the care and support they receive from nurses for older family members living at home. AIM: The purpose of this study was to translate the 20-item social support scale of the Family Functioning, Family Health and Social Support (FAFHES) questionnaire from English to German and test the validity and reliability of the scale among Swiss-German-speaking family caregivers of home-dwelling elderly people who receive home healthcare services. METHODS: A cross-sectional study was conducted to test the empirical and psychometric properties of the translated and culturally adapted version of the social support questionnaire. A factor analysis with the principal component analysis PCA was used to test construct validity. The internal consistency of items was measured with the Cronbach`s alpha coefficient. RESULTS: After a rigorous translation process the original 20-item questionnaire was adapted into a 19-item version and tested with family caregivers (n = 207) of home-dwelling elderly. Psychometric testing of the German version of the social support questionnaire revealed that the three factors - affirmation, affect and concrete aid - were congruent with the original questionnaire. The accounted variance was 79.5% and the internal consistency determined by the Cronbach's alpha was 0.973. CONCLUSION: The German version of the social support scale of the FAFHES questionnaire is a valid and reliable instrument to assess family perceived support on three dimensions - affirmation, affect and concrete aid - received from nursing professionals. The questionnaire should be tested further in other German-speaking populations.
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Cuidadores/psicologia , Família/psicologia , Nível de Saúde , Psicometria , Apoio Social , Idoso , Estudos Transversais , Feminino , Alemanha , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Lay family caregivers of patients receiving palliative care often confront stressful situations in the care of their loved ones. This is particularly true for families in the home-based palliative care settings, where the family caregivers are responsible for a substantial amount of the patient's care. Yet, to our knowledge, no study to date has examined the family caregivers' exposure to critical events and distress with home-based palliative care has been reported from Germany. Therefore, we attempt to assess family caregiver exposure to the dying patient's critical health events and relate that to the caregiver's own psychological distress to examine associations with general health within a home-based palliative care situation in Germany. METHODS: A cross-sectional study was conducted among 106 family caregivers with home-based palliative care in the Federal State of North Rhine Westphalia, Germany. We administered the Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) Scale. Descriptive statistics and linear regression models relating general health (SF-36) were used to analyze the data. RESULTS: The frequency of the caregiver's exposure, or witness of, critical health events of the patient ranged from 95.2% "pain/discomfort" to 20.8% "family caregiver thought patient was dead". The highest distress scores assessing fear and helpfulness were associated with "family caregiver felt patient had enough'" and "family caregiver thought patient was dead". Linear regression analyses revealed significant inverse associations between SCARED critical health event exposure frequency (beta = .408, p = .025) and total score (beta = .377, p = .007) with general health in family caregivers. CONCLUSIONS: Family caregivers with home-based palliative care in Germany frequently experience exposure to a large number of critical health events in caring for their family members who are terminally ill. These exposures are associated with the family caregiver's degree of fear and helplessness and are associated with their worse general health. Thus the SCARED Scale, which is brief and easy to administer, appears able to identify these potentially upsetting critical health events among family caregivers of palliative care patients receiving care at home. Because it identified commonly encountered critical events in these patients and related them to adverse general health of family caregivers, the SCARED may add to clinically useful screens to identify family caregivers who may be struggling.
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Cuidadores/psicologia , Serviços de Assistência Domiciliar , Cuidados Paliativos/normas , Estresse Psicológico/etiologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/estatística & dados numéricos , Estudos Transversais , Feminino , Alemanha , Humanos , Acontecimentos que Mudam a Vida , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Psicometria/instrumentação , Psicometria/métodos , Estresse Psicológico/complicações , Estresse Psicológico/psicologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: For the 11th version of the International Classification of Diseases, a new stress related diagnosis has been proposed: complex post-traumatic stress disorder (CPTSD). It is described as a chronic condition with several severe and concurrent symptoms. In the literature, these symptoms are discussed as a common reason for seeking psychiatric treatment as they can influence and impair the quality of life not only for affected persons but also for their social and familial system. AIM: This research studies symptom management in everyday life by exploring and reconstructing the views, perceptions, experiences, facilitators and barriers of adults with CPTSD. METHODS: A theoretical sampling was used to recruit 18 to 65 years old patients diagnosed with CPTSD from an inpatient setting. The 17 semi-structured interviews were audio recorded and transcribed verbatim. The transcriptions were uploaded into MAXQDA, and a Grounded Theory method based on Corbin and Strauss was used to analyse the data. RESULTS: We provide a process model with 5 interacting phases: trauma experience, emotional ignorance, overcompensation, paroxysm, and perspectives. Each phase is specified with subcategories. CONCLUSIONS: The participants did not recognise their symptoms as such and were unaware of their diagnosis for many years. Nevertheless, they used various resources and were able to develop skills and techniques to deal with their symptoms and to function on a day-to-day basis. Overall, the process of symptom management was extremely exhausting for the participants and they felt left alone with it. The participants were eager to gain support from healthcare professionals and, when necessary, financial support from the government. Thus, these results indicate an essential need to develop support and tailored interventions for the symptom management of persons with a CPTSD. TRIAL REGISTRATION: Ethical approval was obtained from the Swiss Cantonal Ethic Commission (Nr 201,500,096). This research was also registered at the World Health Organization Clinical Trials Search Portal through the German Clinical Trial Register, Trial DRKS00012268 .
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Adaptação Psicológica , Psicoterapia/métodos , Qualidade de Vida , Ajustamento Social , Transtornos de Estresse Pós-Traumáticos , Adulto , Serviços Comunitários de Saúde Mental/métodos , Feminino , Teoria Fundamentada , Humanos , Classificação Internacional de Doenças , Pessoa de Meia-Idade , Escalas de Graduação Psiquiátrica , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Transtornos de Estresse Pós-Traumáticos/etiologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Transtornos de Estresse Pós-Traumáticos/terapiaRESUMO
BACKGROUND: When receiving palliative care, patients and their families experience altered life situations in which they must negotiate challenges in daily life, increased care and new roles. With limited time, they also experience emotional changes that relate to their uncertain future. Transitions experienced in such situations are often studied by focusing on individual aspects, which are synthesized in the following study. The aim was to conduct a qualitative meta-synthesis to explore the experiences patients and their families gain during transitions in palliative care circumstances. METHODS: A qualitative meta-synthesis was conducted following an inductive approach as proposed by Sandelowski and Barroso. Inclusion criteria were studies with adult persons in palliative situations and articles published in English or German. Relevant articles were identified by researching the Pubmed and Cinahl databases, as well as by hand searches in journals and reference lists for the period 2000-2015. The findings of each study were analyzed using initial coding, followed by axial and selective coding in this order. Consequently, a conceptual model was derived from the categories. RESULTS: In total 2225 articles were identified in the literature search. Finally, 14 studies were included after the selection process. The central phenomenon observed among palliative care patients and their families was maintaining normality during transitions. Transitions are initially experienced unconsciously until a crisis occurs and responsive actions are necessary, which encourages patients and families to perceive the situation consciously and develop strategies for its negotiation. Patients remain caught between hopelessness and valuing their remaining time alive. As the illness progresses, informal caregivers reprioritize and balance their roles, and after death, family members inevitably find themselves in changed roles. CONCLUSIONS: In palliative care situations, transitions are experienced differently by patients and their families in a constant phenomenon that oscillates between unconscious and conscious perceptions of transitions. The derived conceptual model offers an additional perspective to existing models and helps to clarify the phenomenon in practical settings. The study promotes a differentiated conceptual view of transitions and emphasizes patients' and families' perspectives.
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Família/psicologia , Cuidados Paliativos/métodos , Transferência de Pacientes/normas , Adaptação Psicológica , Adulto , Humanos , Cuidados Paliativos/psicologia , Transferência de Pacientes/métodos , Pesquisa Qualitativa , Estresse Psicológico/complicações , Estresse Psicológico/etiologiaRESUMO
BACKGROUND: Chronically ill persons experience conditions of life that can become unbearable, resulting in the wish to end their life prematurely. Relatives confronted with this wish experience ambivalence between loyalty to the person's desire to die and the fear of losing this person. Caring for a person during the premature dying process can be morally challenging for nurses. One way to end one's life prematurely is Voluntary Stopping of Eating and Drinking (VSED). METHODS: This embedded single case study explored the experiences of registered nurses (embedded units of analysis: ward manager, nursing manager, nursing expert) and relatives who accompanied a 49-year-old woman suffering from multiple sclerosis during VSED in a Swiss long-term care institution (main unit of analysis). By means of a within-analysis, we performed an in-depth analysis of every embedded unit of analysis and elaborated a central phenomenon for each unit. Afterwards, we searched for common patterns in a cross-analysis of the embedded units of analysis in order to develop a central model. RESULTS: The following central concept emerged from cross-analysis of the embedded units of analysis: As a way of ending one's life prematurely, VSED represents an unfamiliar challenge to nurses and relatives in the field of tension between one's personal attitude and the agents' concerns, fears and uncertainties. Particularly significant is the personal attitude, influenced on the one hand by one's own experiences, prior knowledge, role and faith, on the other hand by the VSED-performing person's age, disease and deliberate communication of the decision. Depending on the intention of VSED as either suicide or natural dying, an accepting or dismissing attitude evolves on an institutional and personal level. CONCLUSIONS: To deal professionally with VSED in an institution, it is necessary to develop an attitude on the institutional and personal level. Educational measures and quality controls are required to ensure that VSED systematically becomes an option to hasten death. As VSED is a complex phenomenon, it is necessary to include palliative care in practice development early on and comprehensively. There is a high need of further research on this topic. Particularly, qualitative studies and hypothesis-testing approaches are required.
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BACKGROUND: Patients with heart failure (HF) often worry about resuming sexual activity and may need information. Nurses have a role in helping patients to live with the consequences of HF and can be expected to discuss patients' sexual concerns. OBJECTIVE: The aims of this study were to identify whether nurses discuss consequences of HF on sexuality with patients and to explore their perceived role and barriers regarding this topic. METHODS: A cross-sectional research design with a convergent parallel mixed method approach was used combining qualitative and quantitative data collected with a self-reported questionnaire. RESULTS: Nurses in this study rarely addressed sexual issues with their patients. The nurses did not feel that discussing sexual concerns with their patients was their responsibility, and only 8% of the nurses expressed confidence to do so. The main phenomenon in discussing sexual concerns seems to be "one of silence": Neither patients nor nurses talk about sexual concerns. Factors influencing this include structural barriers, lack of knowledge and communication skills, as well as relevance of the topic and relationship to patients. CONCLUSION: Cardiac nurses in Germany rarely practice sexual counseling. It is a phenomenon that is silent. Education and skill-based training might hold potential to "break the silence."
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Insuficiência Cardíaca/enfermagem , Insuficiência Cardíaca/psicologia , Papel do Profissional de Enfermagem , Aconselhamento Sexual , Adulto , Competência Clínica , Estudos Transversais , Feminino , Alemanha , Insuficiência Cardíaca/complicações , Humanos , Masculino , Pessoa de Meia-Idade , Comportamento Sexual , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The continuous rise in caesarean rates across most European countries raises multiple concerns. One factor in this development might be the type of care women receive during childbirth. 'Supportive care during labour' by midwives could be an important factor for reducing fear, tension and pain and decreasing caesarean rates. The presence and availability of midwives to support a woman in line with her needs are central aspects for 'supportive care during labour'.To date, there is no existing research on the influence of effective 'supportive care' by German midwives on the mode of birth. This study examines the association between the attendance and workload of midwives with the mode of birth outcomes in a population of low-risk women in a German multicentre sample. METHODS: The data are based on a prospective controlled multicentre trial (n = 1,238) in which the intervention 'midwife-led care' was introduced. Four German hospitals participated between 2007 and 2009.Secondary analyses included a convenience sample of 999 low-risk women from the primary analyses who met the selection criterion 'low-risk status'. Participation was voluntary. The association between the mode of birth and the key variables 'attendance of midwives' and 'workload of midwives' was assessed using backward logistic regression models. RESULTS: The overall rate of spontaneous delivery was 80.7% (n = 763). The 'attendance of midwives' and the 'workload of midwives' did not exhibit a significant association with the mode of birth. However, women who were not satisfied with the presence of midwives (OR: 2.45, 95% CI 1.54-3.95) or who did not receive supportive procedures by midwives (OR: 3.01, 95% CI 1.50-6.05) were significantly more likely to experience operative delivery or a caesarean. Further explanatory variables include the type of hospital, participation in childbirth preparation class, length of stay from admission to birth, oxytocin usage and parity. CONCLUSION: Satisfaction with the presence of and supportive procedures by midwives are associated with the mode of birth. The presence and behaviour of midwives should suit the woman's expectations and fulfil her needs. For reasons of causality, we would recommend experimental or quasi-experimental research that would exceed the explorative character of this study.
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Parto Obstétrico/estatística & dados numéricos , Tocologia/estatística & dados numéricos , Assistência Perinatal/estatística & dados numéricos , Carga de Trabalho/estatística & dados numéricos , Adolescente , Adulto , Ciclopropanos , Feminino , Alemanha , Hospitais/classificação , Humanos , Lactamas Macrocíclicas , Tempo de Internação , Compostos Macrocíclicos , Tocologia/normas , Ocitócicos/uso terapêutico , Ocitocina/uso terapêutico , Satisfação do Paciente , Assistência Perinatal/normas , Educação Pré-Natal , Prolina/análogos & derivados , Estudos Prospectivos , Sulfonamidas , Adulto JovemRESUMO
BACKGROUND: Since the introduction of electronic nursing documentation systems, its implementation in recent years has increased rapidly in Germany. The objectives of such systems are to save time, to improve information handling and to improve quality. To integrate IT in the daily working processes, the employee is the pivotal element. Therefore it is important to understand nurses' experience with IT implementation. At present the literature shows a lack of understanding exploring staff experiences within the implementation process. METHODS: A systematic review and meta-ethnographic synthesis of primary studies using qualitative methods was conducted in PubMed, CINAHL, and Cochrane. It adheres to the principles of the PRISMA statement. The studies were original, peer-reviewed articles from 2000 to 2013, focusing on computer-based nursing documentation in Residential Aged Care Facilities. RESULTS: The use of IT requires a different form of information processing. Some experience this new form of information processing as a benefit while others do not. The latter find it more difficult to enter data and this result in poor clinical documentation. Improvement in the quality of residents' records leads to an overall improvement in the quality of care. However, if the quality of those records is poor, some residents do not receive the necessary care. Furthermore, the length of time necessary to complete the documentation is a prominent theme within that process. Those who are more efficient with the electronic documentation demonstrate improved time management. For those who are less efficient with electronic documentation the information processing is perceived as time consuming. Normally, it is possible to experience benefits when using IT, but this depends on either promoting or hindering factors, e.g. ease of use and ability to use it, equipment availability and technical functionality, as well as attitude. CONCLUSIONS: In summary, the findings showed that members of staff experience IT as a benefit when it simplifies their daily working routines and as a burden when it complicates their working processes. Whether IT complicates or simplifies their routines depends on influencing factors. The line between benefit and burden is semipermeable. The experiences differ according to duties and responsibilities.
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Registros Eletrônicos de Saúde/normas , Instituição de Longa Permanência para Idosos/organização & administração , Casas de Saúde/organização & administração , Registros de Enfermagem/normas , Recursos Humanos de Enfermagem/organização & administração , HumanosRESUMO
BACKGROUND: Since the WHO study "Family Health Nursing" (FHN) the concepts have been established different within Europe. Due to this, the international project "Family Health Nursing in European Communities" was started in order to develop a standardised educational concept. AIMS: The aim of this project was to gather the different requirements and to clarify problematic issues within the participating EU countries. METHOD: Thus, a literature review, a Delphi study in order to achieve consensus on definition of FHN, an analysis of competencies and requirements as well as an overview of available education/training with experts from the field of care was carried out. RESULTS: The results of the review reflect the varying level of occupation within the countries included in this analysis. Over the time, various conceptual orientations and professional designations have been established. Within this project the preferred job title was "Family Nurse" (46,3 %). Health promotion and prevention (85,8 %) were seen as main tasks of the Family Health Nurse. Therefore, the respondent experts state the need for more specialized training at an undergraduate (81,5 %) level. CONCLUSIONS: The project outlines the countries' effort towards a high-level in familial care which could be supported in long term by a consistent FHN concept.
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Comparação Transcultural , Educação Continuada em Enfermagem , Educação de Pós-Graduação em Enfermagem , Enfermagem Familiar/educação , Competência Clínica , Currículo , Técnica Delphi , Europa (Continente) , Humanos , Papel do Profissional de EnfermagemRESUMO
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.
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Febre/terapia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Comportamento Materno/etnologia , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Adolescente , Adulto , Criança , Pré-Escolar , Medo , Feminino , Febre/psicologia , Alemanha , Humanos , Lactente , Entrevistas como Assunto , Pesquisa Qualitativa , Turquia/etnologiaRESUMO
In the present study families were asked about their experiences with the first Family Health Nurses (FHN) educated in Germany according to WHO's concept. This education enables nurses and midwives to provide families and individuals a low threshold access to health care services. The study's aim was to gather information on how families perceive FHN's help and whether the curriculum meets their needs. Using a qualitative approach, eight families, for different reasons all caring for a next of kin at home, were interviewed. Data analysis followed Philip Burnard's method. Families describe FHN's assistance as "care and health related activities"or "managing everyday life". Furthermore they mention "Case Management" as part of FHN's activities. FHN's support contributes to stabilise family's situation. In addition, this analysis shows that Family Health Nurses correspond to the curriculum's contents in their daily work. Altogether, families with different care related, health related, and social related needs can benefit from FHN's support. This type of professional help relieves their personal situations. Families are empowered to handle their daily living and to develop new strategies to cope with challenges in their respective life situations.
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Cuidadores/psicologia , Enfermagem Familiar , Assistência Domiciliar/psicologia , Tocologia , Avaliação das Necessidades , Organização Mundial da Saúde , Adaptação Psicológica , Áustria , Comportamento Cooperativo , Currículo , Educação em Enfermagem , Feminino , Humanos , Comunicação Interdisciplinar , Masculino , Tocologia/educação , Projetos Piloto , Gravidez , Relações Profissional-Família , Qualidade de Vida/psicologia , Apoio Social , Estresse Psicológico/complicaçõesRESUMO
INTRODUCTION: Home-dwelling older people with chronic diseases often need the support of informal and formal caregivers in order to continue living at home. Family members, however, need to be willing and prepared for caregiving together with home care nurses. OBJECTIVES: The purpose of this study was to explore factors associated with family caregivers' preparedness to care for older home-dwelling adults who also receive home care nursing services. METHODS: For this cross-sectional correlational study, a structured questionnaire was sent to family caregivers of adults aged 65 years or older receiving services from a community care agency. A total of 243 participants returned the questionnaire, of which 199 could be analyzed. RESULTS: The stepwise backward regression model explained 29.1% of the variance of family caregivers' preparedness. Mutuality was the most strongly associated factor with family caregivers' preparedness whereas professional involvement of family caregiver in care process was important as well. Care intensity showed no significant impact. CONCLUSION: Nurses should support the whole family emotionally, and appreciate, admire, reinforce, and respect the caregivers' situation. Home care nurses need to invest in helping families to find solutions, to strengthen their relationships between family members and the older person dwelling at home.
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Cuidadores , Serviços de Assistência Domiciliar , Adulto , Idoso , Estudos Transversais , Família/psicologia , Humanos , SuíçaRESUMO
BACKGROUND: Informal caregiving by family members is the most common way of caring for sick people at home. However, the number of care arrangements, in which both formal (nurses) and informal (family members) caregivers are involved, is considerable and increasing. Despite implicit assumptions in research that the involvement of nurses in home care arrangements is inherently beneficial, there is evidence that their involvement may have a destabilising effect. AIMS: The purpose of this study was to investigate the relationship between nurses and family caregivers and its impact on the actual care that is provided. METHOD: Eighty-eight interviews with family caregivers (n = 57) and nurses (n = 31) were conducted in Germany and analysed according to the Grounded Theory methodology. FINDINGS: The relationship between formal and informal care is an encounter of two quite different perspectives that is focused on a negotiation process about caregiving work and the helpfulness of the actions taken and the interventions used. For family caregivers, it is determined by the goal of facilitating work and care for their sick family member. The nurses' work is characterised by a process of shaping different realities in different homes. The results reveal the processes that lead to the involvement of nurses into home care arrangements and offer a deeper understanding of the negotiation processes between formal and informal caregivers. CONCLUSIONS: To provide sufficient support in home care, nurses need the ability to engage in negotiation processes that take the whole home care arrangement into account. Developmental work is needed to design services that are helpful for family caregivers.
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Serviços de Assistência Domiciliar/organização & administração , Negociação , Cuidadores , Família , Alemanha , Serviços de Assistência Domiciliar/normas , HumanosRESUMO
AIM: Guidelines describing how to carry out a randomised controlled trial (RCT) provide no advice concerning when to measure an intervention effect. Possibly as a result, most papers give no rationales for the time frames chosen for data collection. This paper discusses four general strategies to identify when to collect data. Furthermore, an additional individual strategy concerning the current German young carers project is presented. BACKGROUND: The first German young carers project is being implemented and evaluated in a pilot study's RCT. Organisational difficulties as well as problems accessing the field led to a delay in the research and ended with a change to the overall timeframe for data assessment. This process resulted in a discussion by the research team about whether the shorter timeframe would lead to biased data. DISCUSSION: The authors discuss how they reviewed the literature and decided how to determine the best point to conduct follow ups with their study participants. CONCLUSION: The authors conclude that the standard three-month intervals used in RCTs are not necessarily applicable to psychosocial interventions and researchers should determine more appropriate intervals where possible.
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Pesquisa em Enfermagem , Ensaios Clínicos Controlados Aleatórios como Assunto , Coleta de Dados , Interpretação Estatística de Dados , Alemanha , Projetos PilotoRESUMO
A synthesis of current nursing knowledge by means of nursing theory construction is missing in German speaking countries. Unfortunately, due to this the nursing discipline cannot counterbalance the influence of other scientific disciplines with a self-created nursing specific theory. The level of theory construction in a discipline serves as sensitive indicator of intellectual state in this discipline. After the fruitful period from 1980 to 1990, the theoretical discourse in nursing almost disrupted while the number of empirical studies is increasing. This deserves to be discussed thoroughly with respect to further development of nursing theory. The theoretical discourse in nursing should generalise research findings in order to develop nursing theory in an inductive way - combined with a focus on patient's perspective in research and theory construction. New aspects and themes in health care as the demographical development and its epidemiological consequences, the increase and transformation of chronic illness as well as the changing role of the patient (participation, self-management) should be considered. The reanimation of a culture of discussion is only possible if scholars can dedicate time to it. Only under this condition reading and discussing research findings of other disciplines will be again on the agenda of scientific working and will - last but not least - inspire the construction of a nursing specific theory.
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Pesquisa em Enfermagem Clínica/tendências , Atenção à Saúde/tendências , Educação em Enfermagem/tendências , Cuidados de Enfermagem/tendências , Teoria de Enfermagem , Doença Crônica/enfermagem , Comparação Transcultural , Previsões , Alemanha , Necessidades e Demandas de Serviços de Saúde/tendências , Humanos , Estados UnidosRESUMO
Urinary incontinence is a complex problem, and worldwide millions of people are affected. How the affected persons and their related caregivers experience and arrange their day-to-day lives has hardly been studied. This was the motive for a two-and-a-half-year study in the German-speaking region. In the present article, the study results concerning the experiences of incontinence will be illustrated. There were 47 problem-centred interviews conducted with 32 affected persons and 15 related caregivers. These were analyzed by using the Grounded Theory method according to Strauss and Corbin. The experience of urinary incontinence is dependent on the cause of the incontinence and on whether the incontinent episodes take place in private or in public. Incontinence itself influences social, cultural, and sportive activities and partner relationship, in respect of the sexuality of the affected person. The results of the study will be discussed in the light of current research. In conclusion, the implications for the practice of caring will be discussed. Finally, it is shown that the nursing assessment and consultation, with regard to incontinence, must be orientated on the living environment of the concerned.
Assuntos
Atividades Cotidianas/psicologia , Cuidadores/psicologia , Família/psicologia , Núcleo Familiar/psicologia , Enfermeiras e Enfermeiros/psicologia , Incontinência Urinária/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Incontinência Urinária/enfermagemRESUMO
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
A lower limb amputation seriously restricts people's lives. Suddenly, they lose a crucial part of their body and their usual mobility. The main reason of lower-limb amputation is diabetes mellitus. People living with a chronic illness have to face permanent uncertainty. There is little knowledge about the experience of living with a chronic illness, and suffering from a lower-limb amputation. This study examines how people with a lower-limb amputation caused by vascular diseases experience and manage their every-day life. Grounded Theory approach has been used to examine the research question. Qualitative interviews have been conducted with nine amputees, and data analysis has been done by using the method of Grounded Theory as well. As a result of an amputation, people have to cope with severe loss: the loss of a part of their body with consequences on their body image, the loss of mobility, a following dependency on means such as wheelchairs and prostheses, and the loss of the ability to manage daily activities. In order to be able to manage their daily activities again, amputees need to regain their mobility. At the same time, this regained mobility enables them to perform activities of individual importance within their disability. The results of this study help to understand the challenge of every-day live after a lower limb amputation caused by vascular diseases, which should serve for a basis of support for these people.