Caregiver decision-making concerning involuntary treatment in dementia care at home

Background: Dementia care at home often involves decisions in which the caregiver must weigh safety concerns with respect for autonomy. These dilemmas can lead to situations where caregivers provide care against the will of persons living with dementia, referred to as involuntary treatment. To prevent this, insight is needed into how family caregivers of persons living with dementia deal with care situations that can lead to involuntary treatment. Objective: To identify and describe family caregivers’ experiences regarding care decisions for situations that can lead to involuntary treatment use in persons living with dementia at home. Research design: A qualitative descriptive interview design. Data were analysed using the Qualitative Analysis Guide of Leuven. Participants and research context: A total of 10 family caregivers providing care for 13 persons living with dementia participated in in-depth semi-struct ured interviews. Participants were recruited by registered nurses via purposive sampling. Ethical consideration: The study protocol was approved by the Ethics Committee of the University Hospitals Leuven and the Medical Ethical Test Committee Zuyderland. Findings: Family caregivers experience the decision-making process concerning care dilemmas that can lead to involuntary treatment as complicated, stressful and exhausting. Although they consider safety and autonomy as important values, they struggle with finding the right balance between them. Due to the progressive and unpredictable nature of dementia, they are constantly seeking solutions while they adapt to new situations. Family caregivers feel responsible and experience social pressure for the safety of persons living with dementia. They may be blamed if something adverse happens to the persons living with dementia, which increases an already stressful situation. Their experience is influenced by characteristics of the care triad (persons living with dementia, professional and family caregivers) such as practical and emotional support, knowledge, and previous experiences. Discussion and conclusion: To prevent involuntary treatment, professionals need to proactively inform family caregivers, and they need to support each other in dealing with complex care situations

Physicians' Attitudes on Resuscitation of Extremely Premature Infants: A Systematic Review

CONTEXT: Whether to resuscitate extremely premature infants (EPIs) is a clinically and ethically difficult decision to make. Indications and practices vary greatly across different countries and institutions, which suggests that resuscitation decisions may be influenced more by the attitudes of the individual treating physicians. Hence, gaining in-depth insight into physicians' attitudes improves our understanding of decision-making regarding resuscitation of EPIs. OBJECTIVE: To better understand physicians' attitudes toward resuscitation of EPIs and factors that influence their attitudes through a systematic review of the empirical literature. DATA SOURCES: Medline, Embase, Web of Science, and Scopus. STUDY SELECTION: We selected English-language articles in which researchers report on empirical studies of physicians' attitudes toward resuscitation of EPIs. DATA EXTRACTION: The articles were repeatedly read, themes were identified, and data were tabulated, compared, and analyzed descriptively. RESULTS: Thirty-four articles were included. In general, physicians were more willing to resuscitate, to accept parents' resuscitation requests, and to refuse parents' nonresuscitation requests as gestational age (GA) increased. However, attitudes vary greatly for infants at GA 23 to 24 weeks, known as the gray zone. Although GA is the primary factor that influences physicians' attitudes, a complex interplay of patient- and non-patient-related factors also influences their attitudes. LIMITATIONS: Analysis of English-only articles may limit generalizability of the results. In addition, authors of only 1 study used a qualitative approach, which may have led to a biased reductionist approach to understanding physicians' attitudes. CONCLUSIONS: Although correlations between GA and attitudes emerged, the results suggested a more complex interplay of factors influencing such attitudes.status: publishe

'Can you please hold my hand too, not only my breast?' The experiences of Muslim women from Turkish and Moroccan descent giving birth in maternity wards in Belgium

OBJECTIVES: To reach nuanced understanding of the perinatal experiences of ethnic minority women from Turkish and Moroccan descent giving birth in maternity wards in Belgium thereby gaining insight into the underlying challenges of providing intercultural care for ethnic minority persons in a hospital setting. METHODS: A qualitative study design was used by conducting In-depth interviews with 24 women from Turkish and Moroccan descent who gave birth during the past three years in maternity wards in Flanders, Belgium. The interviews were analysed using a Grounded Theory Approach. RESULTS: This study shows that the women's care experiences were shaped by the care interactions with their caregivers, more specifically on the attention that was given by the caregivers towards two essential dimensions of the care relationship, viz. Ereignis (attention to what happens) and Erlebnis (attention to how it happens). These two dimensions were interrelated in four different ways, which defined the women's care experiences as being either 'uncaring', 'protocolized', 'embraced' or 'ambiguous'. Moreover, these experiences were fundamentally embedded within the women's cultural context, which has to be understood as a relational process in which an emotional and moral meaning was given to the women's care expectations, interactions and interpretations of care. CONCLUSIONS: The findings reveal that the quality of intercultural care depends on the nature and quality of care interactions between ethnic minority patients and caregivers much more than on the way in which cultural questions and tensions are being handled or dealt with in a practical way. As such, the importance of establishing a meaningful care relationship should be the priority when providing intercultural care. In this, a shift in perspective on 'culture' from being an 'individual culture-in-isolation' towards an understanding of culture as being inter-relational and emerging from within these care relationships is necessary.status: publishe

Moral identity and palliative sedation: A systematic review of normative nursing literature

BACKGROUND: In the last two decades, nursing authors have published ethical analyses of palliative sedation-an end-of-life care practice that also receives significant attention in the broader medical and bioethics literature. This nursing literature is important, because it contributes to disciplinary understandings about nursing values and responsibilities in end-of-life care. RESEARCH AIM: The purpose of this project is to review existing nursing ethics literature about palliative sedation, and to analyze how nurses' moral identities are portrayed within this literature. RESEARCH DESIGN: We reviewed discussion papers, written by nurses about the ethics of palliative sedation, which were cited in MEDLINE, CINAHL, Nursing and Allied Health, or Philosopher's Index (search date March 2018). Twenty-one papers met selection criteria. We performed a comprehensive review and analysis (using the Qualitative Analysis Guide of Leuven), of the values, responsibilities, and relationships reflected in authors' portrayal of the nursing role. FINDINGS: Two different tones are apparent in the extant nursing ethics literature. One is educational, while the other is critically reflective. Irrespective of tone, all authors agree on the alleviation of suffering as a fundamental nursing responsibility. However, they differ in their analysis of this responsibility in relation to other values in end-of-life care, including those that depend on consciousness. Finally, authors emphasize the importance of subjective and experience-based understandings of palliative sedation, which they argue as depending on nurses' proximity to patients and families in end-of-life care. DISCUSSION AND CONCLUSION: Based on our findings, we develop three recommendations for future writing by nurses about palliative sedation. These relate to the responsibility of recognizing how consciousness might matter in (some) peoples' moral experiences of death and dying, to the importance of moral reflectiveness in nursing practice, and to the value of a relational approach in conceptualizing the nursing ethics of palliative sedation.status: publishe

Work environment and workforce problems: A cross-sectional questionnaire survey of hospital nurses in Belgium

Objectives: This study investigated Belgian hospital nurses' perceptions on work environment and workforce issues, quality of care, job satisfaction and professional decision making. Methods: All eligible nurses in a selection of 22 hospitals received the BELIMAGE questionnaire for a total of 13,958 potential respondents. Of these, 9941 returned study materials (response rate = 71.2%) of which 9638 were valid and useable for statistical analysis (valid response rate = 69.1%). Results: The study identified several areas of tension in the nursing profession. The commitment to being competent providers of quality care was remarkably strong among the nurses, but they also perceived the barriers in the work environment to be multiple and complex. Concerns about the quality of leadership and management, insufficient staff, time demands and stressful work environment are experienced as obstacles in providing good nursing care. Four out of ten nurses (39.2%) would not choose nursing again as a career and more than half of the nurses (54.3%) have contemplated leaving the profession at some point in time. Conclusions: To effectively tackle the professional and workforce issues in nursing, investments should focus on redesigning a work environment that supports nurses in providing comprehensive professional care. (c) 2005 Elsevier Ltd. All rights reserved

"It is still intense and not unambiguous." Nurses' experiences in the euthanasia care process 15 years after legalisation

AIMS AND OBJECTIVES: To explore how Flemish nurses working in hospitals and home care experience their involvement in the care of patients requesting euthanasia 15 years after the legalisation of euthanasia. BACKGROUND: Euthanasia was legalised in Belgium in 2002. Despite prior research that charted the experiences of nurses in euthanasia care before and right after legalisation in Belgium, it remains unclear how Flemish nurses currently, 15 years after the legalisation, experience their involvement. DESIGN: A grounded theory design, using semi-structured in-depth interviews. METHODS: We interviewed 26 nurses working in hospitals or in home care, who had experience with caring for patients requesting euthanasia. Data were collected using a purposive sample and then a snowball sample. Data collection and data analysis were conducted simultaneously. Data were analysed by using the Qualitative Analysis Guide of Leuven. The study adhered to the COREQ guidelines. RESULTS: Caring for a patient requesting euthanasia continues to be an intense experience characterised by ambivalence. The nature of euthanasia itself contributes to the intensity of this care process. The nurses described euthanasia as something unnatural and planned that generated many questions and doubts. Nevertheless, most interviewees stated that they were able to contribute to a dignified end of life and make a difference, giving them a profound feeling of professional fulfilment. However, when nurses were not able to contribute to good euthanasia care, they struggled with strong negative feelings and frustrations. CONCLUSION: Although the results suggest some subtle shifts in nurses' experiences over time, they do not indicate perceptions of euthanasia as a normal practice by the nurses involved. RELEVANCE TO CLINICAL PRACTICE: The study reveals the need for more clarification of nurses' ethical responsibility in euthanasia care and their role as moral agents.status: publishe

Experiences and concerns about 'returning to work' for women breast cancer survivors: a literature review

Objective: To explore how female breast cancer patients experience work incapacity during the treatment and return-to-work phases and how interactions between patients and stakeholders affect this experience. Method: Database search for full text articles published between January 1995 and January 2008 that focused on employed female breast cancer patients, factors related to work incapacity, and returning to work. Only results based on self-report data were included. Studies focusing on treatment, financial factors, rate of return, or absence were excluded. Results: Six articles met the inclusion criteria. Women with breast cancer receive varied reactions but little advice about returning to work. Women were primarily concerned with disclosing the diagnosis to their employer and to relatives. Uncertainties about physical appearance, ability to work, and possible job loss affected the women's decisions about working during the treatment phase. After treatment, most women wanted to regain their 'normal life', but concentration and arm or fatigue problems potentially interfered. Although supportive work environments were helpful, the individual needs of women differed. Employers and employees need to find a balance in defining accommodating work. Many women received favourable support, but some reported feeling discriminated against. Many women re-evaluated the role of work in their lives after being confronted with breast cancer. Conclusion: Work adjustments could help women to keep their jobs during illness and recovery. To resolve women's concerns about returning to work, employers, physicians, and insurance institutions should consider increasing and improving communication with breast cancer patients and playing a more active and supportive role

Experiences and concerns about 'returning to work' for women breast cancer survivors: a literature review

Objective: To explore how female breast cancer patients experience work incapacity during the treatment and return-to-work phases and how interactions between patients and stakeholders affect this experience. Method: Database search for full text articles published between January 1995 and January 2008 that focused on employed female breast cancer patients, factors related to work incapacity, and returning to work. Only results based on self-report data were included. Studies focusing on treatment, financial factors, rate of return, or absence were excluded. Results: Six articles met the inclusion criteria. Women with breast cancer receive varied reactions but little advice about returning to work. Women were primarily concerned with disclosing the diagnosis to their employer and to relatives. Uncertainties about physical appearance, ability to work, and possible job loss affected the women's decisions about working during the treatment phase. After treatment, most women wanted to regain their 'normal life', but concentration and arm or fatigue problems potentially interfered. Although supportive work environments were helpful, the individual needs of women differed. Employers and employees need to find a balance in defining accommodating work. Many women received favourable support, but some reported feeling discriminated against. Many women re-evaluated the role of work in their lives after being confronted with breast cancer. Conclusion: Work adjustments could help women to keep their jobs during illness and recovery. To resolve women's concerns about returning to work, employers, physicians, and insurance institutions should consider increasing and improving communication with breast cancer patients and playing a more active and supportive role