Núria Orts-Beneito’s research while affiliated with IRBLleida Institute of Biomedical Research and other places

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.

The complexity of palliative care means that the emotional distress and burden that primary family caregivers suffer under can be particularly high. The objective of this study was to determine the level of burden endured by these primary family caregivers and to identify the variables that predict it in the caregiving relatives of people who require home-based palliative care. A descriptive-correlational cross-sectional study was conducted. Socio-demographic and clinical data were collected from caregivers through a self-administered questionnaire that included questions from the 12-Item Short Form Health Survey (SF-12), Zarit Caregiver Burden Interview (ZBI), Hospital Anxiety and Depression Scale (HADS), Brief Resilient Coping Scale (BRCS), Post Traumatic Growth Inventory (PTGI), and Fatigue Assessment Scale (FAS). A total of 77 caregivers participated; 66.2% were women, and the mean age was 61.5 years. Most (62.3%) were providing care to cancer patients. From among these data, the presence of anxiety as a clinical problem (48.1%), a high average fatigue score (FAS) of 23.0 (SD = 8.5), and the prevalence of intense overload (41.6%) stood out. We found statistically significant correlations between the variables of burden, fatigue, post-traumatic growth, anxiety, and depression, with the latter two being the main predictive variables of burden. In addition, caregiver burden was associated with a worsening of health. Identifying the factors that influence the appearance of overburden will allow the specific needs of careers to be assessed in order to offer them emotional support within the healthcare environment.