The experience of hope in dyads living with advanced chronic illness in Portugal: a longitudinal mixed-methods study.

BACKGROUND: Hope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time. METHODS: We conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads' level of hope and the Edmonton Symptom Assessment System was used to measure patients' symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio. RESULTS: Dyadic scores of hope and patients' symptom burden were stable over time. The constructs of hope in dyads included "Living one day at the time," "Having inner force/strength," and "Maintaining good health." Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one. CONCLUSIONS: The findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients' and informal caregivers' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.

Perceived quality of life and associated factors in long COVID syndrome among older Brazilians: A cross-sectional study.

AIMS AND OBJECTIVES: This paper aims to: (a) determine the personal, sociodemographic, clinical, behavioural, and social characteristics of older Brazilians with clinical evidence of long COVID; (b) evaluate perceived quality of life and determine its association with personal, sociodemographic, behavioural, clinical and social variables; and (c) assess significant predictors of high perceived QoL. BACKGROUND: Given the inherent vulnerabilities of the ageing process, the older people are an at-risk group for both contagion of SARS-CoV-2 and the perpetuation of residual symptoms after infection, the so-called long COVID or post-COVID syndrome. DESIGN: A cross-sectional survey design using the STROBE checklist. METHODS: Brazilian older people with long COVID syndrome (n = 403) completed a phone survey measuring personal, sociodemographic, behavioural, clinical, and social characteristics, and perceived Quality of Life (QoL). Data were collected from June 2021-March 2022. A multiple linear regression model was performed to identify salient variables associated with high perceived QoL. RESULTS: The mean age of participants was 67.7 ± 6.6 years old. The results of the multivariate regression model showed that race, home ownership, daily screen time, musculoskeletal and anxiety symptoms, and work situation were the significant predictors of QoL among COVID-19 survivors. CONCLUSIONS: Knowledge about the persistence of physical, emotional, and social symptoms of COVID-19 can help nurses and other healthcare providers to improve the management of survivors, bringing benefits to the whole society. RELEVANCE TO CLINICAL PRACTICE: Given the novelty of long-COVID and its heterogeneous trajectory, interventions focusing on the repercussions and requirements unique to more vulnerable older persons should be developed and these aspects should be included in public health recommendations and policymakers' concerns. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution was required to design, to outcome measures or undertake this research. Patients/members of the public contributed only to the data collection.

Dependent person in self-care: analysis of care needs.

BACKGROUND: The aim of this study was to assess the self-care dependency levels of the dependent person at the time of home discharge and its relationship between (1) the degree of dependency of each self-care domain; (2) the previous dependency levels; and (3) the gender of the dependent person. It also aims to assess the relationship between the degree of dependency of each self-care domain, the length of admission, the length of dependency and the age of the dependent person at the time of discharge. METHODS: A cross-sectional study was conducted. The sample comprised hospitalised adults and elderly in the medical services of a Portuguese hospital during the months of March, April and May of 2018. The data were collected by an interview conducted at the time of home discharge from the hospital medical ward. RESULTS: The average age of dependent people of the sample is 80.7 years (±10.1) with the majority being women (51.7%), with no statistical difference in the mean age according to gender (U = 2205.500; p > 0.05). They were hospitalised on average 11.4 days (±33.2), most of them (44.0%) due to respiratory problems (85% of which were due to pneumonia). There were no statistically significant differences between the length of the hospital stay, the length of dependency and the participants' gender (U = 2200.500, p > 0.05; U = 1688.000, p > 0.05). Medication intake was the highest dependency domain amongst participants (41.3%), followed by instrumental activities of daily living (40.6%) and bathing (39.9%). CONCLUSION: The amount of support required may vary according to the domain that the person is dependent. Thus, it is important to use a robust and reliable assessment tool that will be able to assess the degree of dependency on the various domains of self-care.

Needs and skills of informal caregivers to care for a dependent person: a cross-sectional study.

BACKGROUND: The world is facing many socio-demographic changes, such as an increased average life expectancy and the presence of chronic and non-communicable diseases, which in turn, leads to an enhanced dependency on others. Consequently, the demand for informal caregivers has significantly increased during the past few years. Caring for a dependent person is linked to a series of burdens that often leads to physical, psychological and emotional difficulties. Taking into consideration the difficulties faced by informal caregivers, knowing in which areas of functioning they need more guidance may help to relieve their burden. Therefore, the main goal of this study is to better understand the needs and competencies of the informal caregiver when caring for a dependent person in the different self-care domains. METHODS: This cross-sectional study used a questionnaire administered on a single occasion by face-to-face interview. Descriptive and inferential statistics alongside non-parametric statistical techniques such as the Mann-Whitney test and Spearman's correlation were used. RESULTS: The average age of the 143 informal caregivers is 58 years old, with the youngest in our sample being 21 years of age. Most of them are female, and 50% of them are children taking care of one of their parents. Most of the dependent people are completely dependent in the areas of comfort and hygiene (53.8%) and medication management (55.9%). The female informal caregivers see themselves as having more competencies in sanitary hygiene than the male ones, with no significant differences in their competencies' perception in the other areas of self-care. Older caregivers see themselves as less competent in certain areas of self-care such as feeding, mobility, transfers, medication and symptoms management and communication. Most of the information given to the informal caregiver is about the disease (82.3%) and the medication management (80.4%). There are still a lot of areas of self-care, where no information, or almost none, is given to the informal caregivers. CONCLUSIONS: Before home discharge of a dependent person, it is important to acknowledge the needs and competencies of the informal caregiver, to capacitate them in looking after their relatives, to help decrease their burden and consequently, decrease the number of hospital readmissions.

Mental Health Promotion and Illness Prevention in Vulnerable Populations.

Several cases of social and health inequity have occurred in recent centuries [...].

Spiritual Care through the Lens of Portuguese Palliative Care Professionals: A Qualitative Thematic Analysis.

Providing spiritual care is paramount to patient-centered care. Despite the growing body of data and its recognized importance in palliative care, spiritual care continues to be the least advanced and most overlooked aspect. This study aims to explore the perceptions and experiences of spiritual care from the perspective of PC professionals and identify their strategies to address spiritual care issues. Data were collected through semi-structured personal interviews and managed using WebQDA software (Universidade de Aveiro, Aveiro, Portugal). All data were analyzed using thematic content analysis, as recommended by Clark and Braun. The study included 15 palliative care professionals with a mean age of 38.51 [SD = 5.71] years. Most participants identified as lacking specific training in spiritual care. Thematic analysis spawned three main themes: (1) spiritual care as key to palliative care, (2) floating between "shadows" and "light" in providing spiritual care, and (3) strategies for competent and spiritual-centered care. Spiritual care was considered challenging by its very nature and given the individual, relational, and organizational constraints lived by professionals working in palliative care. With support from healthcare institutions, spiritual care can and should become a defining feature of the type, nature, and quality of palliative care provision. Care providers should be sensitive to spiritual needs and highly skilled and capable of an in-the-moment approach to respond to these needs. Further research on educating and training in spiritual care competence is a priority.

Ethical Issues in Clinical Decision-Making about Involuntary Psychiatric Treatment: A Scoping Review.

In mental health and psychiatric care, the use of involuntary psychiatric treatment for people with mental disorders is still a central and contentious issue. The main objective of this scoping review was to map and systematize the literature on ethical issues in clinical decision-making about involuntary psychiatric treatment. Five databases (Embase, PsycINFO, CINAHL, Medline, and Scopus) were searched for articles on this topic. Out of a total of 342 articles found, 35 studies from 14 countries were included based on the selection criteria. The articles were analyzed using the inductive content analysis approach. The following main categories were identified: (1) ethical foundations that guide clinical decision-making; (2) criteria for involuntary psychiatric treatment; (3) gaps, barriers, and risks associated with involuntary psychiatric treatment; (4) strategies used to reduce, replace, and improve the negative impact of involuntary treatment; and (5) evidence-based recommendations. Most of the selected articles discuss the logic underlying involuntary treatment of the mentally ill, exploring ethical principles such as autonomy, beneficence, non-maleficence, or justice, as well as how these should be properly balanced. During the process of involuntary psychiatric admission, there was a notable absence of effective communication and a significant power imbalance that disenfranchised those seeking services. This disparity was further intensified by professionals who often use coercive measures without a clear decision-making rationale and by family members who strongly depend on hospital admission. Due to the pluralistic and polarized nature of opinions regarding legal capacity and the complexity and nuance of involuntary admission, further studies should be context-specific and based on co-production and participatory research.

Well-Being and Dispositional Hope in a Sample of Portuguese Citizens: The Mediating Role of Mental Health.

In our pursuit of a fulfilling and contented life, the study of well-being has emerged as a fundamental field of research. Higher levels of well-being are associated with better mental health outcomes. Individuals with better mental health might possess the personal resources necessary to set and pursue meaningful goals, maintain positive expectations, and overcome adversities. We aim to explore the positive relationship between well-being (hedonic, psychological, and social) and dispositional hope. We suggest that mental health acts as a mediator in this relationship, since improved mental health can create a conducive environment for the development and maintenance of dispositional hope. Data were collected using an e-survey through social media during the last quarter of 2022. The hypothesis of this study was tested using mediation analysis. The sample was composed of 471 participants (85.4% female) with a mean age of 47.72 ± 11.86 years. Participants were mainly workers (88.6%), followed by pensioners (6.8%), university students (2.5%), and unemployed (2.1%). Results revealed that well-being was positively and significantly associated with dispositional hope. Additionally, well-being presented a significant and positive relationship with mental health, which, in turn, also presented a significant and positive relationship with dispositional hope. Finally, using the Hayes process macro for SPSS, we found that mental health mediates the relationship between well-being and dispositional hope. Our findings reinforce the conceptual frameworks that consider well-being and mental health as key contributors to a resilient and optimistic mindset. Interventions that aim to cultivate positive affect, facilitate personal growth, and foster supportive social environments might help improve mental health outcomes.