ABSTRACT
The Nursing Homes End-of-life Programme (NUHELP) was developed in 2017 and is based on quality standards of palliative care, but it was not implemented due to the outbreak of the COVID-19 pandemic. OBJECTIVES: To describe perceptions among staff at nursing homes and primary health care (PHC) centres regarding the relevance, feasibility, and degree of achievement of quality standards for palliative care in nursing homes and to determine the differences in these perceptions before and after the pandemic. METHODOLOGY: Cross-sectional descriptive study. Professionals at eight nursing homes and related PHC centres who participated in NUHELP development assessed 42 palliative care standards at two time points (2018 and 2022). The Mann-Whitney U test was applied to analyse differences in the scores between these two times and between perceptions at nursing homes and at PHC centres. RESULTS: The study population consisted of 58 professionals in 2018 and 50 in 2022. The standard regarding communication with persons affected by the death of a family member was considered less relevant (p = 0.05), and that concerning the culturally sensitive and dignified treatment of the body was less fully achieved (p = 0.03) in 2022 than in 2018. Social support (p = 0.04), sharing information among the care team (p = 0.04), patient participation (p = 0.04) and information about the treatment provided (p = 0.03) were all more poorly achieved in 2022 than in 2018. The perceptions of nursing home and PHC workers differed in several respects. CONCLUSIONS: Professional intercommunication and social support should be reinforced, and residents should be more actively involved in decision-making.
ABSTRACT
Symptoms of fatigue and lack of energy are very common in caregivers of palliative care (PC) patients, traditionally associated with variables such as burden or depression. There are no Spanish-language instruments validated for assessing fatigue levels in this population. The Fatigue Assessment Scale (FAS) is a useful and simple instrument for assessing fatigue in this group. The aim of this study was to examine its psychometric properties (factor structure, reliability and validity) in a sample of caregivers of PC patients. Instrumental design for instrument validation was performed. One hundred and eight caregivers of PC patients participated and completed measures of fatigue, family functioning, life satisfaction, caregiver burden, anxiety, depression, resilience and quality of life. A confirmatory factor analysis was performed; non-linear reliability coefficient and Pearson correlations and t-tests were conducted to assess evidence of reliability and validity. The Spanish version of the FAS was found to have a one-dimensional structure. Reliability was 0.88. Validity evidence showed that FAS scores were positively associated with levels of burden, anxiety and depression. They were negatively associated with family functioning, life satisfaction, resilience and quality of life. The Spanish version of the FAS in caregivers of PC patients shows adequate psychometric properties.
ABSTRACT
Introduction: Congruence, understood as the agreement between the patient's preferred place of death and their actual place of death, is emerging as one of the main variables indicating the quality of end-of-life care. The aim of this research was to conduct a systematic literature review on levels and determinants of congruence in palliative patients over the period 2010-2021. Method: A systematic review of the literature in the databases of PubMed, Scopus, Web of Science, PsycINFO, CINAHL, Cuiden, the Cochrane Library, CSIC Indexes, and IBECS. Information was extracted on research characteristics, congruence, and associated factors. Results: A total of 30 studies were identified, mainly of retrospective observational design. The congruence values varied substantially between the various studies, ranging from 21 to 100%. The main predictors of congruence include illness-related factors (functional status, treatments and diagnosis), individual factors (age, gender, marital status, and end of life preferences), and environmental factors (place of residence, availability of health, and palliative care services). Conclusion: This review, in comparison with previous studies, shows that treatment-related factors such as physical pain control, marital status, having a non-working relative, age, discussing preferred place of death with a healthcare professional, and caregiver's preference have been associated with higher levels of congruence. Depending on the study, other factors have been associated with either higher or lower congruence, such as the patient's diagnosis, gender, or place of residence. This information is useful for designing interventions aimed towards greater congruence at the end of life.
ABSTRACT
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.
Subject(s)
Dementia , Nursing Homes , Palliative Care , Aged , Aged, 80 and over , Cross-Sectional Studies , Dementia/therapy , Female , Humans , Male , Prospective Studies , Treatment OutcomeABSTRACT
Background: Aging and longevity are important topics nowadays. Purpose: To describe how older adults perform the occupational adaptation process in the extreme region of Magallanes (Chile), and to identify the factors that might contribute to successful occupational adaptation and well-being. Method: Qualitative study, with a phenomenological interpretative approach. In-depth interviews were carried out with 16 older adults, with high or low levels of well-being, assessed with the Ryff Scale. An inductive content analysis according to Elo and Kyngäs was performed. Findings: Resilience, self-esteem and interdependence with significant others are key elements that promote well-being. Participants develop strategies to minimize the effects of environmental factors. The occupation's function in terms of socialization, use of time, and social participation is revealed as a conditioning factor of occupational adaptation. Implications: Interventions with older people to achieve a successful occupational adaptation process must take into consideration the commitment to meaningful activities.
