Development and Psychometric Validation of the Breast Cancer Stigma Assessment Scale for Women with Breast Cancer and Its Survivors.

BACKGROUND: The increase in breast cancer cases and breast cancer survival makes it advisable to quantify the impact of the health-related stigma of this disease. PURPOSE/OBJECTIVES: To develop and validate a breast cancer stigma scale in Spanish. METHODS: Women diagnosed with, or survivors of, breast cancer were included. The development of the Breast Cancer Stigma Assessment Scale (BCSAS) involved both a literature review and personal interviews. Content validity was assessed using a Delphi study and a pilot test; construct validity was evaluated using an exploratory factor analysis; and convergent validity was assessed using six scales. Cronbach's α internal consistency and test-retest reliability were used to determine the reliability of the scales. RESULTS: 231 women responded to the 28-item scale. The BCSAS showed good reliability, with α = 0.897. Seven factors emerged: concealment (α = 0.765), disturbance (α = 0.772), internalized stigma (α = 0.750), aesthetics (α = 0.779), course (α = 0.599), danger (α = 0.502), and origin (α = 0.350). The test-retest reliability was 0.830 (p < 0.001). Significant correlation was observed with event centrality (r = 0.701), anxiety-depression (r = 0.668), shame (r = 0.645), guilt (r = 0.524), and quality of life (r = -0.545). CONCLUSIONS: The BCSAS is a reliable and valid measure of stigma in women with breast cancer and its survivors. It could be useful for detecting stigma risk and establishing psychotherapeutic and care priorities.

Quality of dying among elderly people diagnosed with dementia in nursing homes: A mixed methods study.

WHAT IS KNOWN ON THE SUBJECT: Nurses working at nursing homes can play a pivotal role in mental health as a high proportion of residents diagnosed with dementia are in these facilities. Many institutionalized residents diagnosed with dementia develop clinical complications and symptoms that reduce the quality of dying. A mixed-methods approach can help nurses with the difficult task of assessing the quality of dying among these residents and identify inconsistencies that cannot be found using scales alone, but no studies were found in this topic. WHAT THE PAPER ADDS TO EXISTING KNOWLEDGE: Through the Quality of dying in Long-Term Care Scale (QoD-LTC), nurses described symptom management, quality of care, and end-of-life appearance as adequate and end-of-life communication as lacking. Generally speaking, the scores on the scale were consistent with the data from semi-structured interviews conducted with nurses. In the semi-structured interviews, some of the concepts on the scale, including 'dignity', 'holistic' care, 'good relationships with healthcare professionals', and 'a peaceful death', are complex and not fully incorporated into nurses' practice in nursing homes when assessing residents diagnosed with dementia. This could be improved by using the SENSES Model or person-centred care frameworks. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: There is evidence of shortcomings among professionals in the correct use of concepts linked to psychological wellbeing, communication, therapeutic relationship, safety and participation, preservation of dignity, decision-making, and resident autonomy, which can be addressed using specific theoretical approaches developed in the field of mental health nursing. ABSTRACT: Introduction The complex nature of end-of-life assessment of individuals diagnosed with dementia would benefit from a mixed-methods approach that simultaneously assess the perception and response of nurses to standardized tools. Aim/Question To examine nursing professionals' perceptions of the quality of dying among residents diagnosed with dementia using the Quality of Dying in Long-Term Care settings (QoD-LTC) questionnaire and to identify consistencies and inconsistencies in their narratives. Method Mixed-methods study using concurrent triangulation with data integration for results and interpretation. Nurses from eight nursing homes assessed 117 residents diagnosed with dementia who died in the previous 3 months using the QoD-LTC scale. After informed consent was obtained (nurses/caregivers), 17 semi-structured scale-based interviews were conducted. Results Symptom management, quality of care, and end-of-life appearance were found to be adequate, while end-of-life communication was deemed insufficient. The qualitative and quantitative data were consistent for most of the items on the QoD-LTC. Discussion Concepts such as dignity, holistic care, good relationships, and peaceful death are complex and not fully incorporated into professional practice. Implications for Practice The results highlight the need for greater involvement of mental health nurses as well as improved communication, training, and specific tools tailored to residents diagnosed with dementia.

NUrsing Homes End of Life care Program (NUHELP): developing a complex intervention.

BACKGROUND: Nursing homes are likely to become increasingly important as end-of-life care facilities. Previous studies indicate that individuals residing in these facilities have a high prevalence of end-of-life symptoms and a significant need for palliative care. The aim of this study was to develop an end-of-life care program for nursing homes in Spain based on previous models yet adapted to the specific context and the needs of staff in nursing homes in the country. METHODS: A descriptive study of a complex intervention procedure was developed. The study consisted of three phases. The first phase was a prospective study assessing self-efficacy in palliative care (using the SEPC scale) and attitudes towards end-of-life care (using the FATCOD-B scale) among nursing home staff before and after the completion of a basic palliative care training program. In the second phase, objectives were selected using the Delphi consensus technique, where nursing home and primary care professionals assessed the relevance, feasibility, and level of attainment of 42 quality standards. In phase 3, interventions were selected for these objectives through two focus group sessions involving nursing home, primary care, and palliative care professionals. RESULTS: As a result of the training, an improvement in self-efficacy and attitudes towards end-of-life care was observed. In phase 2, 14 standards were selected and grouped into 5 objectives: to conduct a comprehensive assessment and develop a personalized care plan adapted to the palliative needs detected; to provide information in a clear and accessible way; to request and record advance care directives; to provide early care with respect to loss and grief; to refer patients to a specialized palliative care unit if appropriate, depending on the complexity of the palliative care required. Based on these objectives, the participants in the focus group sessions designed the 22 interventions that make up the program. CONCLUSIONS: The objectives and interventions of the NUHELP program constitute an end-of-life care program which can be implemented in nursing homes to improve the quality of end-of-life care in these facilities by modifying their clinical practice, organization, and relationship with the health system as well as serving as an example of an effective health intervention program.

Cultural Adaptation and Validation of the Quality of Dying in Long-Term Care Scale (QoD-LTC) for Spanish Nursing Homes.

BACKGROUND: There is a need for instruments that can evaluate the psychosocial quality of dying in nursing homes. The aim of this study was to adapt and validate the Quality of Dying in Long-Term Care scale (QoD-LTC) to the Spanish context. METHODS: Descriptive cross-sectional study. Fourteen nurses from 7 facilities in southern Spain assessed 153 residents who died in the centers; validity, reliability, and feasibility were evaluated. RESULTS: The Spanish version consists of 11 items with acceptable reliability (α = 0.681). Three factors model was validated by principal components analysis. A mean of 180.62 (SD = 86.66) seconds is needed to fill it in. An inter-observer 0.753 (95% CI: 0.391-0.900, p< 0.001) and intra-observer 0.855 (95% CI: 0.568-0.951 p = 0.001) reliability were observed. Weak correlation was observed; positive with mono-item question (0.322) and negative with Eastern Cooperative Oncology Group (ECOG) with a value of (-0.321) and Integrated Palliative outcome scale (IPOS) with a value of (-0.252). CONCLUSIONS: The QoD-LTC scale presents an adequate factorial structure, internal consistency, and feasibility to evaluate psychosocial quality of dying in nursing homes. It can be used as a quality indicator.

A New Approach to the Identification of Palliative Care Needs and Advanced Chronic Patients among Nursing Home Residents.

BACKGROUND: Proper planning of Palliative Care in nursing homes requires advanced knowledge of the care needs that residents show. The aim of the study was to evaluate Palliative Needs and other conditions such as fragility, complexity, and prognosis and also to suggest new indicators for the establishment of the resident's advanced chronic condition. METHODS: Cross-sectional study conducted in 149 nursing homes Complex Chronic residents evaluated by trained professionals. Palliative Care Needs, assessed by the NECPAL ICO-CCOMS© tool, and fragility, case and palliative complexity and prognosis were evaluate through a comprehensive assessment. Descriptive analyses and association measures were performed setting the statistical significance at 0.05. RESULTS: More than 50% of the residents had positive Surprise Question and other Palliative Needs and were classified as Advanced Chronic Patients. Distress and/or Severe Adaptative Disorder was the most frequent need shown by the residents and significant differences in levels of frailty and other characteristics, were found between the Positive and the Negative Surprise Question Groups. Statistically significant correlations were also found between aspects of both groups. CONCLUSIONS: Nursing homes residents show Palliative Needs regardless of the response to the Surprise Question of the NECPAL tool. Other characteristics such as presence of an intermediate level of frailty are suggested as a new perspective to identify advanced chronic patients among nursing homes residents.

Frailty, Complexity, and Priorities in the Use of Advanced Palliative Care Resources in Nursing Homes.

Background and objectives: This study aimed to determine the frailty, prognosis, complexity, and palliative care complexity of nursing home residents with palliative care needs and define the characteristics of the cases eligible for receiving advanced palliative care according to the resources available at each nursing home. Materials and Methods: In this multi-centre, descriptive, and cross-sectional study, trained nurses from eight nursing homes in southern Spain selected 149 residents with palliative care needs. The following instruments were used: the Frail-VIG index, the case complexity index (CCI), the Diagnostic Instrument of Complexity in Palliative Care (IDC-Pal), the palliative prognosis index, the Barthel index (dependency), Pfeiffer's test (cognitive impairment), and the Charlson comorbidity index. A consensus was reached on the complexity criteria of the Diagnostic Instrument of Complexity in Palliative Care that could be addressed in the nursing home (no priority) and those that required a one-off (priority 2) or full (priority 1) intervention of advanced palliative care resources. Non-parametric tests were used to compare non-priority patients and patients with some kind of priority. Results: A high percentage of residents presented frailty (80.6%), clinical complexity (80.5%), and palliative care complexity (65.8%). A lower percentage of residents had a poor prognosis (10.1%) and an extremely poor prognosis (2%). Twelve priority 1 and 14 priority 2 elements were identified as not matching the palliative care complexity elements that had been previously identified. Of the studied cases, 20.1% had priority 1 status and 38.3% had priority 2 status. Residents with some kind of priority had greater levels of dependency (p < 0.001), cognitive impairment (p < 0.001), and poorer prognoses (p < 0.001). Priority 1 patients exhibited higher rates of refractory delirium (p = 0.003), skin ulcers (p = 0.041), and dyspnoea (p = 0.020). Conclusions: The results indicate that there are high levels of frailty, clinical complexity, and palliative care complexity in nursing homes. The resources available at each nursing home must be considered to determine when advanced palliative care resources are required.

Palliative Care Symptoms, Outcomes, and Interventions for Chronic Advanced Patients in Spanish Nursing Homes with and without Dementia.

The aim of this study was to compare the symptomatology, palliative care outcomes, therapeutic procedures, diagnostic tests, and pharmacological treatments for people with dementia (PWD) and without dementia (PW/OD) admitted to Spanish nursing homes. DESIGN: This was a cross-sectional study which is part of a long-term prospective follow-up of elderly people performed in nursing homes to measure end-of-life care processes. PARTICIPANTS: 107 nursing home patients with advanced or terminal chronic diseases were selected according to the criteria of the Palliative Care Spanish Society. SETTING: Two trained nurses from each nursing home were responsible for participant selection and data collection. They must have treated the residents and had a minimum seniority of 6 months in the nursing home. MEASUREMENTS: Sociodemographic data; Edmonton Symptom Assessment Scale; Palliative Care Outcome Scale; and prevalence of diagnostic tests, pharmacological treatments, and therapeutic procedures were evaluated. RESULTS: Pain, fatigue, and nausea were found to be significantly higher in the nondementia group and insomnia, poor appetite, and drowsiness were significantly higher in the dementia group. Patient anxiety, support, feeling that life was worth living, self-worth, and practical matters management were higher in the nondementia group. Regarding drugs, use of corticoids was higher in the nondementia group, while use of anxiolytics was higher in the dementia group. Diagnostic procedures such as urine analysis and X-ray were higher in the dementia group. CONCLUSIONS: Differences in symptom perception, diagnostic tests, and pharmacological procedures were found between patients with and without dementia. Specific diagnostic tools need to be developed for patients with dementia.