"I see myself as part of the team" - family caregivers' contribution to safety in advanced home care.

BACKGROUND: The use of medical technology and the various contributing and interdepending human factors in home care have implications for patient safety. Although family caregivers are often involved in the provision of advanced home care, there is little research on their contribution to safety. The study aims to explore family caregivers in Home Mechanical Ventilation (HMV) safety experiences and how safety is perceived by them in this context. Furthermore, it seeks to understand how family caregivers contribute to the patients' and their own safety in HMV and what kind of support they expect from their health care team. METHODS: An explorative, qualitative study was applied using elements from grounded theory methodology. Data were collected through individual interviews with 15 family caregivers to patients receiving HMV in two regions in Germany. The audiotaped interviews were then subject to thematic analysis. RESULTS: The findings shows that family caregivers contribute to safety in HMV by trying to foster mutual information sharing about the patient and his/her situation, coordinating informally health care services and undertaking compensation of shortcomings in HMV. CONCLUSION: Consequently, family caregivers take on considerable responsibility for patient safety in advanced home care by being actively and constantly committed to safety work.Nurses working in this setting should be clinically and technically skilled and focus on building partnership relations with family caregivers. This especially encompasses negotiation about their role in care and patient safety. Support and education should be offered if needed. Only skilled nurses, who can provide safe care and who can handle critical situations should be appointed to HMV. They should also serve as professional care coordinators and provide educational interventions to strengthen family caregivers' competence.

Everything safe? ­ Risk situations in advanced home care from the point of view of ventilated patients and their relatives / Alles sicher? ­ Risikosituationen in der häuslichen Intensivpflege aus Sicht beatmeter Patienten und ihrer Angehörigen.

Background: The number of home mechanically ventilated (HMV) patients has been growing for years. However, little is known about requirements, processes and effects of advanced home care, provided in distance from clinics and doctors. To date, safety related aspects of the above mentioned issues have scarcely been examined. Aim: Users of advanced home care were asked about their experiences and about situations in which they felt safe or unsafe. The aim was to gain insights into the daily care provision, explore safety risks from the users' point of view, and to develop new approaches to enhance patient safety in home care for the severely ill. Method: A qualitative explorative study has been carried out, based on semi-structured interviews (ventilated patients N = 21; relatives N = 15). Sampling, data collecting and data analysis were guided by principles of Grounded Theory. Results: Risk situations occur when (non-)verbal communication offers of HMV patients are overseen or misunderstood, patient- or technology related monitoring tasks are neglected, if coordination and collaboration requirements are undervalued and if negotiation processes as well as education and supervision needs are disregarded. Furthermore, nurses' lack of competence, self-confidence and professionalism may produce risk situations. Conclusion: Listen carefully to patients and relatives can help to identify quality shortcomings in advanced home care, to prevent risk situations and to develop patient-centered safety concepts for this particular setting.

Perspectives of family caregivers in home mechanical ventilation: "That I'll be taken seriously and that I not only have to carry the burden" / Die Perspektive Angehöriger in der häuslichen Beatmungspflege: "Dass ich dann auch ernst genommen werde und nicht nur die Bürde zu tragen habe"

Background: In Germany, Home Mechanical Ventilation (HMV) becomes more important, but there is only little knowledge about the situation of family caregivers involved in this form of care. Aim: To gain insights into the situation of family caregivers involved in HMV and to understand and reflect upon their roles and functions. Method: As part of a multi-part qualitative study problem-centered interviews with family caregivers (N = 15) of patients in HMV have been conducted and analysed thematically following principles used in Grounded Theory. Results: Family caregivers provide a broad spectrum of health care services in HMV with varying width and demand (i. e. housekeeping, organisation, nursing and therapeutic tasks). The division of tasks and responsibilities between nurses and family caregivers seems to be unclear in many cases and their limits of expertise is not reflected carefully. Family caregivers wish to be supported by nurses in their competency development process, but offers (if there are some) are often not really helpful from their point of view. Conclusions: Family caregivers engaged in HMV should be valued as partners with special expertise and not as petitioner or just burdened people. A needs-based support of family caregivers should therefore focus on partnership and targeted promotion of their special expertise.

'I need complete trust in nurses' - home mechanical ventilated patients' perceptions of safety.

BACKGROUND: Although home care has advanced over the last few decades, little research on patient safety has been carried out in this setting. Furthermore, it is unclear how patients perceive their situation and safety. The insiders' views might be especially relevant for technology-dependent individuals, such as users of home mechanical ventilation (HMV). AIM: The aim of this study was to examine how HMV patients perceive their situation and what makes them feel safe or unsafe. DESIGN: Explorative qualitative study. METHODS: Data were collected in two regions in Germany between April and December 2014 by means of semi-structured interviews with 21 HMV patients. Thematic analysis was used to analyse data. FINDINGS: Three themes emerged: the meaning of an interpersonal relationship between the nurse and HMV patient is expressed in the theme Being familiar - Having trust. The importance of the attentiveness of nurses for the patients' feeling of safety is described in the theme Being able to communicate - Being noticed. The theme Experiencing continuity - Feeling presence points to the organisational dimension of HMV care provision. CONCLUSIONS: The interpersonal nurse-patient relationship plays a key role in promoting HMV patients' feeling of safety. Thus, HMV patients have a relational approach to safety. In order to enhance the patients' feeling of safety, nurses should strive to develop a trusting relationship with patients and demonstrate their presence and attentiveness. Regarding the provision of care, competent and continuous care should be made a priority.

Educational strategies and challenges in peritoneal dialysis: a qualitative study of renal nurses' experiences.

AIMS AND OBJECTIVES: The aim of the study was to explore renal nurses' experiences, strategies and challenges with regard to the patient education process in peritoneal dialysis. BACKGROUND: Patient education in peritoneal dialysis is essential to developing a successful home-based peritoneal dialysis program. In this area research is scarce and there is a particular lack of focus on the perspective of the renal nurse. DESIGN: Qualitative design formed by thematic qualitative text analysis. METHODS: Five group interviews (n = 20) were used to explore the challenges peritoneal dialysis nurses face and the training strategies they use. The interviews were analyzed with thematic qualitative content analysis using deductive and inductive subcategory application. RESULTS: The findings revealed the education barriers perceived by nurses that patients may face. They also showed that using assessment tools is important in peritoneal dialysis patient education, as is developing strategies to promote patient self-management. There is a need for a deeper understanding of affective learning objectives, and existing teaching activities and materials should be revised to incorporate the patient's perspective. Patients usually begin having questions about peritoneal dialysis when they return home and are described as feeling overwhelmed. Adapting existing conditions is considered a major challenge for patients and nurses. CONCLUSIONS: The results provided useful insights into the best approaches to educating peritoneal dialysis patients and served to raise awareness of challenges experienced by renal nurses. Findings underline the need for nosogogy - an approach of teaching adults (andragogy) with a chronic disease. Flexibility and cooperation are competencies that renal nurses must possess. RELEVANCE TO CLINICAL PRACTICE: Still psychomotor skills dominate peritoneal dialysis patient training, there is a need of both a deeper understanding of affective learning objectives and the accurate use of (self-)assessment tools, particularly for health literacy.

Educational interventions in peritoneal dialysis: a narrative review of the literature.

OBJECTIVES: To review the current literature on educational interventions used in peritoneal dialysis (PD). Educational interventions have become increasingly relevant because they play a key role in helping individuals to actively participate in their therapy and to manage their chronic condition. The paper will focus on two areas: (a) educational interventions for individuals living with PD and (b) educational interventions for PD nurses. DESIGN: A narrative review of primary research. DATA SOURCES: Electronic searches of the MEDLINE, CINAHL, EMBASE, ERIC and Cochrane Library (2006-2013) databases were undertaken using terms such as peritoneal dialysis, insertive training, curriculum, nursing education, train the trainer, coach the coach, tutor the tutor, and patient education were used. All studies were reviewed by two researchers. REVIEW METHODS: Titles and abstracts of 555 studies were screened and read. Full text articles retrieved were further screened against the inclusion and exclusion criteria. Relevant data on the educational interventions for people receiving PD and nurse training programs were extracted and synthesized narratively. RESULTS: Eighteen articles met the inclusion criteria. Most of them focused on educational intervention programs for people undergoing PD. Findings on the link between the PD trainer's background and peritonitis rates among individuals undergoing PD are inconsistent. PD learners should be taught self-management skills as well as technical skills. They might also benefit from receiving decision-making aids. Older people, people with co-morbidities and people with low educational status need more time to acquire self-care skills and are more likely to develop peritonitis. Home visits have the potential to improve learning outcomes. Re-training needs should be assessed and fulfilled as appropriate. Case and disease management programs have been shown to have positive outcomes for individuals receiving PD. CONCLUSIONS: Educational interventions for PD remain an under-researched area, despite the potential they have to make this type of therapy more successful. Further research on education and training for people receiving PD and for PD nurses is needed. In the meantime, educational interventions used for other chronic conditions could provide guidance.

A spider in the web: role of the palliative care nurse specialist in Uganda--an ethnographic field study.

BACKGROUND: Palliative care is not a priority in developing countries. Hospice Africa Uganda (HAU), where nurses complete a course in clinical palliative care, is considered a model for other African countries. AIM: To explore the role of the palliative care nurse specialist (PCNS) in Uganda. METHODS: This ethnographic field study uses observations, interviews, and group interviews. PARTICIPANTS: In total, 20 participants are included in this study. RESULT: The role of the palliative care nurse specialist is multifaceted. Beyond prescribing drugs, their role is to deliver holistic care. They encounter numerous challenges in their work, but they also have the possibility to improve the quality of the patient's life.

[Instrument to assess nursing care delivery stystems "IzEP". Making nursing care systematically visible for practice, management and science]. / Instrument zur Erfassung von Pflegesystemen "IzEP". Pflegerische Organisation für Praxis, Management und Wissenschaft sichtbar machen.

Network activities and publications show a rising interest in nursing care delivery systems like primary nursing. There are aspects in quality and outcomes attributed to primary nursing to answer the changes in health care. To assign outcomes in nursing to different kinds of nursing care delivery systems and for systematic developing of primary nursing in a unit one needs a special assessment instrument. IzEP, the instrument to assess nursing care delivery systems, relates the nursing care delivery system of a unit to primary nursing. This article describes the development of the instrument, testing of reliability, validity and possibilities for using.