The associations of palliative care experts regarding food refusal : a cross-sectional study with an open question evaluated by triangulation analysis

Introduction: Health professionals in oncologic and palliative care settings are often faced with the problem that patients stop eating and drinking. While the causes of food refusal are very different, the result is often malnutrition, which is linked to health comorbidities and a high mortality rate. However, the professionals lack the time and knowledge to clarify the cause for each patient. What associations do health professionals have when faced with food refusal? Objective: To investigate the associations that health professionals in oncological and palliative settings have about denied eating behavior. Methods: A cross-sectional study, starting with an open question focusing professionals’ associations regarding food refusal. The results were inductively analyzed, whereby generic categories were developed. Subsequently, the categories were transformed into quantitative data to calculate the relationships between the categories. Results: A total of 350 out of 2000 participants completed the survey, resulting in a response rate of 17.5%. Food refusal is primarily associated with physical and ethical aspects and with endof-life. Half of the participants frequently find that patients refuse to eat. The attitudes show that the autonomy of the patient is the highest good and is to be respected. Even in the case of patients with limited decision-making capacity, the refusal to eat is acceptable. Conclusion: Clarifying the cause of food refusal requires a great deal of knowledge and is strongly influenced by the associations of health professionals. While the associations have very negative connotations, information and training is needed to make professionals aware of this and to change their associations. With this knowledge and in an interprofessional cooperation, mis-labelling of patient settings can be avoided and fears can be reduce

Voluntary stopping of eating and drinking (VSED) as an unknown challenge in a long-term care institution : an embedded single case study

Abstract 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 oneˊs 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

The need to distinguish between different forms of oral nutrition refusal and different forms of voluntary stopping of eating and drinking

Voluntary stopping of eating and drinking (VSED) is a well-known phenomenon among palliative care professionals. This study intent to distinguish between different forms of VSED. In a qualitative interview study 18 relatives were interviewed about their experiences of caring a person during VSED. Different forms of oral nutrition refusal and different forms of VSED were found and described. The study results help members of the multidisciplinary team to manage the situation appropriately

EXTERNAL BREAST PROSTHESES IN POST-MASTECTOMY CARE IN GERMANY – WOMENʼS EXPERIENCES: A QUALITATIVE STUDY

Aim: In Germany, external breast prostheses are recognized and funded as medical devices for adjustment and care following a mastectomy due to breast cancer. Nonetheless, there is a lack of awareness of the prostheses-fitting service in German breast centres and outpatient care. In this study breast cancer survivors give voice to their experiences. Design: The study employs qualitative research evaluation methods. Methods: Data was collected via semi-structured interviews. The analysis was carried out via open and axial coding. Results: Women’s experiences and requirements are presented in a two-phase model. Phase one describes their experiences of shock and crisis, and the subsequent initial prosthesis fitting in hospital. Phase two describes the womenʼs desire for normality, which they hope to achieve with the help of a breast prosthesis. Conclusion: The results confirm the consequences of losing a breast, the resulting distress, and the importance of a good-quality prosthesis for body image, femininity, and psychosocial well-being. The study confirms that a lack of information and choice in prosthesis fitting is a common problem. For the first time, the two-phase model demonstrates the differences between the initial hospital treatment and womenʼs long-term needs. Keywords: breast cancer, external breast prostheses, mastectomy, supportive care, qualitative research

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

The aim of the study was to develop, implement and evaluate a concept for the first support program for young carers and their families in Germany. This paper intends to critically review the implementation of that study and describe the problems experienced by the research team, including: the complexity of the intervention itself, the difficulty of finding host organizations, the lack of infrastructure, different values and beliefs about the project aims held between the host organization and the research team, shortage of time, identifying and recruiting families among the hidden population of young carers. These initial problems led to the re-constructuring of the original research design. In order to evaluate factors that influenced these difficulties, the original research intentions, emerging problems and their consequences will be presented

Development of a questionnaire to determine incidence and attitudes to “voluntary stopping of eating and drinking”

‘‘Voluntary stopping of eating and drinking’’ (VSED) is an option to hasten death at the end of life. There are no data available about incidence of either the explicit VSED or implicit (V)SED nor information about experiences and attitudes of health professionals about VSED in Switzerland

Long‐term care nurses' attitudes and the incidence of voluntary stopping of eating and drinking : a cross‐sectional study

This article has been accepted for publication and undergone full peer review (not applicable for Editorials) but has not been through the copyediting, typesetting, pagination and proofreading process, which may lead to differences between this version and the Version of Record. Please cite this article as doi:10.1111/jan.14249Aims: To assess the incidence of voluntary stopping of eating and drinking in long‐term care and to gain insights into the attitudes of long‐term care nurses about the voluntary stopping of eating and drinking. Design: A cross‐sectional study. Methods: Heads of Swiss nursing homes (535; 34%) answered the Online‐Survey between June and 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 voluntary stopping of eating and drinking 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 voluntary stopping of eating and drinking are very positive, whereas it is assumed that voluntary stopping of eating and drinking is a phenomenon of old age. Professionals still lack sufficient knowledge about this phenomenon, which could be clarified through training

Voluntary stopping of eating and drinking in Swiss outpatient care

Besides physician-assisted suicide, there is another end-of-life practice under discussion: voluntary stopping of eating and drinking (VSED). In this study, we assess the occurrence of VSED in outpatient care and evaluate nurses’ attitudes about it. We recruited 395 nurses (24% response rate) in our online survey. The occurrence of VSED in Switzerland lies at 0.5%. Most nurses (84.6%) were aware of VSED, and 39.5% had experienced it with patients. VSED was mostly (70.3%) regarded as a natural death, and nearly all (95.1%) were willing to care for these patients; however, about one-quarter (26.5%) expressed moral concerns. Our results show that VSED occurs in rare cases, and that nurses are willing to accompany patients during this VSED, but express moral concerns

Exploring factors associated with family caregivers' preparedness to care for an older family member together with home care nurses : an analysis in a Swiss urban area

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