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.

The 'loneliness pandemic': implications for gerontological nursing.

The COVID-19 pandemic compelled states to limit free movement, in order to protect at-risk and more vulnerable groups, particularly older adults. Due to old age or debilitating chronic diseases, this group is also more vulnerable to loneliness (perceived discrepancy between actual and desired social relationships) and social isolation (feeling that one does not belong to society). This forced isolation has negative consequences for the health of older people, particularly their mental health. This is an especially challenging time for gerontological nursing, but it is also an opportunity for professionals to combat age stereotypes reinforced with COVID-19, to urge the measurement of loneliness and social isolation, and to rethink how to further adjust interventions in times of crisis, such as considering technology-mediated interventions in these uncertain times.

Mental Health Recovery Through "Art Therapy": A Pilot Study in Portuguese Acute Inpatient Setting.

The main aims of the study are to a) evaluate the effectiveness of a three session program of "art therapy" on changing emotional indicators (depression, anxiety, stress, and psychological well-being) in individuals with mental illness and b) analyze the meanings attributed to creative self-expression. We performed a pre-experimental mixed approach study, with a pretest-posttest design, with twelve Portuguese male subjects, admitted to an acute psychiatry unit. The instruments used were Depression, Anxiety and Stress Scale [DASS-21]; and Ryff Scales of Psychological Well-Being [SPWB - 18] and a semi-structured interview. Comparison of the pre- and posttest indicated improvement in anxiety, stress, self-acceptance, purpose of life, and overall psychological well-being. The categories resulting from the thematic analysis of the interviews revealed the usefulness of the program in the participant recovery process. This type of psychosocial intervention in specialized clinical practice in Mental Health Nursing minimizes the disease's impact in an organizational culture that should increasingly be oriented toward recovery.

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.

Legacy in End-of-Life Care: A Concept Analysis.

Comprehending the significance of legacy in end-of-life (EoL) situations helps palliative care professionals enhance person-centered outcomes for those with a life-threatening illness and their families. Our purpose was to conduct a concept analysis of legacy in EoL care. By employing Walker and Avant's approach, we identified the concept's defining characteristics. Subsequently, we established the antecedents, consequences, and empirical referents. After conducting a thorough review of titles and abstracts, a total of 30 publications were analyzed. These articles were sourced from three databases (CINAHL, Medline via PubMed, and Scopus) from 2002 to 2023. Our analysis identified several core attributes of legacy: (a) leave behind something of value that transcends death; (b) determine how people want to be remembered; (c) build and bestow across generations; (d) integrate advance care planning through EoL conversations and shared decision-making; and (e) develop strategies of dignity-conserving care. The consequences are related to improvements in spiritual and subjective well-being; coping with inevitable EoL existential issues; decreases in EoL suffering; engendering self-awareness, hope, gratitude, and peace; achieving and maintaining dignity; creating good memories; promoting mutually constructive and transformative relationships; and fostering the adjustment of bereaved people. Nevertheless, further effort is required to implement the key attributes of legacy that form the basis for creating legacy-oriented interventions near the EoL.

Family Experiences of Loss and Bereavement in Palliative Care Units during the COVID-19 Pandemic: An Interpretative Phenomenological Study.

The COVID-19 pandemic significantly interrupted the grieving experiences of bereaved families and drastically changed their ways of dealing with loss. Our study aims to gain an in-depth understanding of the experience of bereaved relatives of patients who died in palliative care units during the COVID-19 pandemic. The phenomenological research design included sixteen family members of hospitalized palliative patients who died from November 2021 to June 2022. The study involved conducting qualitative in-depth semi-structured interviews with family members 12-24 months after the death of their loved ones. The interviews aimed to gather information about the experiences of the families both before and after the death. The COREQ guidelines were applied in the study. Participants were mainly female (n = 13) with a mean age of 47.25 (SD = 12.58). Data were analysed using the Interpretative Phenomenology Analysis (IPA). The following three categories were identified: (1) navigating loved ones' final weeks and days (troubled deaths); (2) the last farewell was robbed; (3) looking for adjustment after loss. One overall main theme emerged, which was as follows: "Struggling between stolen moments and painful losses to get back into the flow of life". This study provides novel insights into end-of-life care and bereavement from the perspectives of family. Our findings suggest that developing and promoting family-centred culture can lead to compassionate palliative care focused on a myriad ways of affirming that their loved one matters.

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.

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.

Death Unpreparedness Due to the COVID-19 Pandemic: A Concept Analysis.

The COVID-19 pandemic imposed changes upon the capacity of healthcare systems, with significant repercussions on healthcare provision, particularly at end-of-life. This study aims to analyze the concept map of death unpreparedness due to the COVID-19 pandemic, capturing the relationships among the attributes, antecedents, consequences, and empirical indicators. Walker and Avant's method was used to guide an analysis of this concept. A literature search was performed systematically, between May 2022 and August 2023, using the following electronic databases on the Elton Bryson Stephens Company (EBSCO) host platform: Medical Literature Analysis and Retrieval System Online (Medline), Psychological Information Database (PsycINFO), Cumulative Index to Nursing and Allied Health Literature (CINAHL) Complete, Cochrane Library, and Nursing and Allied Health Collection. Thirty-four articles were retrieved. The unexpected and unpredictable impositions associated with inexperience and unskillfulness in dealing with COVID-19 configured challenges for healthcare professionals, family/caregivers, and even the dying person. Nine key attributes emerged in three main domains: (1) Individual: (a) disease-related conditions, (b) separation distress, and (c) scarcity of death and grief literacy; (2) Relational: (a) Dying alone, (b) poor communication, and (c) existential issues; and (3) Contextual: (a) disrupted collective mourning and grieving, (b) disrupted compassionate care and, (c) pandemic social stigma. This study contributed a full definition of death unpreparedness in a global pandemic scenario such as COVID-19. In this sense, feeling unprepared or unready for death brought new challenges to the bioecological resources of those affected. It is essential to embrace strategies capable of providing emotional and spiritual support in the dying process and to respect patient wishes. The lessons learned from COVID-19 should be applied to events with a comparable impact to minimize their consequences.

The experiences of daily smartphone use among older adults in Brazil: A grounded theory analysis.

Background: Digital inclusion of older people is an important agenda for the future and well-being of the older population, as it represents a form of social inclusion with significant gains for healthy aging. The present study aimed to understand the experiences of Brazilian older adults who use smartphones and the implications in their daily lives. Method: A qualitative study was developed using a constructivist grounded approach. Older people (≥60 years) with prior access to a smartphone were invited to participate in the study. Participation took place through semi-structured, audio-recorded interviews. Data collection and analysis occurred simultaneously using a constant comparative approach. Data management and analysis used the Atlas.ti® software. Results: Overall, 37 older people participated, with an average age of 70.60 ± 6.95 years, predominantly female (n = 33), white (n = 25), married (n = 26) and retired (n = 27). The first sample group included 27 older people with family support and the second group included 10 older people without family support (who lived alone in their homes). A core category emerged from the data analysis-"Expanding the personal and social development of older adults through smartphone communication"-around which three main categories emerged: 1) The smartphone as "a window to the world"; 2) The problem of misinformation and fake news on virtual networks; 3) Technological paradoxes in the use of smartphones. Conclusions: The digital transition associated with smartphone use brings unimaginable benefits to older adults who adopt positive habits to improve their well-being and expand their social connections, following efforts proposed by the Decade of Healthy Aging. However, older adults still face disparities and experience a significant digital divide, which represents a major challenge. Barriers to access are further aggravated in developing countries. We hope this study contributes to public health policies on digital inclusion and healthy aging.

Spiritual Care[Givers] Competence in Palliative Care: A Scoping Review.

To deliver spiritual care, professionals must be skilled in physical, mental, social, and spiritual care. Spiritual care competence includes knowledge, behaviors, attitudes, and skills that enable successful or efficient care. This review aims to identify the scope of competence and the specific skills, knowledge, and attitudes used in providing spiritual care to people needing palliative care, and the main challenges and facilitators. A scoping review was developed using the Joanna Briggs Institute methodology. Six databases (Web of Science; MEDLINE/Pubmed; Scopus; CINAHL; MedicLatina and SciELO) were searched in September 2023, with an update in January 2024. The resulting 30 articles were analyzed using a content analysis approach. Information was categorized into three domains: cognitive, affective, and functional (based on three personal resources: intrapersonal, interpersonal, and transpersonal). Palliative care professionals face a lack of training and insufficient preparation to deliver spiritual care. Spiritual care competence depends on professional spiritual development and experience, spiritual intelligence (cognitive), spiritual humility (affective), and having a critical and reflexive mind (functional). In the future, palliative care should seek to improve competent spiritual care. This review could help clarify the real configuration of competent spiritual care and lead to improvements in a professional's empowerment when delivering effective spiritual care to patients and families.

Managing long COVID symptoms and accessing health services in Brazil: A grounded theory analysis.

Background: The worldwide community has shown significant interest in researching the management of Long COVID. However, there is scarce evidence about the daily experiences of people living with Long COVID and their insights into the healthcare services provided to them. Aims: This study aims to understand the experience of Long COVID sufferers with their symptoms and in accessing health services. Method: We employed Charmaz's grounded theory methodology, informed by constructivism, and applied the COREQ guidelines for qualitative research. Sixty-six Brazilians living with Long COVID participated in the study. The data was collected using semi-structured telephone interviews and analyzed using a constant comparative process. Findings: The findings refer firstly to the consequences of persistent Long COVID symptoms. Secondly, they describe how the disease trajectory required Long COVID sufferers to reorganize their routines and develop adaptive strategies. Lastly, they reflect a diverse array of both positive and negative interactions inside the healthcare system conveyed by individuals suffering from Long COVID. These elements converge towards the core category of the study: "The limbo of Long COVID sufferers: between the persistence of symptoms and access to health services". Conclusions: Long COVID is characterized by its varied nature, including a range of physical and emotional repercussions experienced by individuals. There is a need for enhanced comprehension and discourse about Long COVID across several domains, including the general public, policy-making entities, and healthcare professionals. In this sense, the development of specialized services or the reinforcement of existing services to support long COVID sufferers is imperative.

Physical Activity and Associated Factors among Brazilian Adult Inmates: A Cross-Sectional Study.

Previous studies on health in prison facilities have determined that imprisonment has adverse effects on both physical and emotional well-being. Therefore, the introduction of public health measures is encouraged. This study aimed to (a) evaluate the levels of physical activity and the health condition of a sample of Brazilian prisoners and (b) determine the predictors of low physical activity. An observational and cross-sectional study was developed following the STROBE checklist. Data collection took place between June and November 2019 in a maximum-security Brazilian prison institution. This study's final sample included 220 people selected through convenience sampling, of which 115 (53.2%) were aged 18 to 29 years, followed by 79 (36.6%) aged 30 to 44 years and 22 (10.2%) aged 45 to 59 years old. Overall, 64.3% of participants failed to meet the World Health Organization (WHO) recommendation for physical activity [at least 150-300 min of moderate-intensity or 75 min of vigorous-intensity aerobic physical activity per week]. The majority reported unhealthy food consumption (116; 53.7%). Regarding body mass index (BMI), 50.2% of individuals were classified as eutrophic, 38.1% were overweight and 11.6% were obese. Older age (AOR: 0.95; CI95%: 0.92-0.99; p = 0.01) and sitting time (AOR: 0.74; CI95%: 0.65-0.85; p < 0.01) were associated with low adherence to physical activity. Our results highlight the importance of practicing physical activity within the prison context and the need for institutional programs that promote regular physical activity.

Effects of Hormonal Replacement Therapy and Mindfulness-Based Stress Reduction on Climacteric Symptoms Following Risk-Reducing Salpingo-Oophorectomy.

Breast Cancer Associated Susceptibility Proteins Type 1/2 (BRCA1/2) promote cellular functioning by modulating NRF2-mediated antioxidant signaling. Redox failure in women with BRCA1/2 insufficiency increases the risk for breast/ovarian/uterine cancers. Risk-reducing salpingo-oophorectomy (RRSO) is a prophylactic surgery of the reproductive organs, which is frequently conducted by the age of 40 to lower the occurrence of cancer in women with BRCA1/2 mutations. However, abrupt estrogen decline following RRSO causes ovarian failure, which implicates various cellular physiological processes, resulting in the increased release of free radicals and subsequent severe onset of menopausal symptoms. Comfort measures (e.g., hormonal replacement therapy (HRT) and mindfulness-based stress reduction (MBSR)) may improve chronological menopause-related quality of life, but their specific effects are not clear in women with gene mutations. Aiming to fill the gap, this study used path analysis to examine the effects of HRT and MBSR on menopausal symptoms among RRSO patients (N = 199, mean age = 50.5 ± 6.7 years). HRT directly alleviated the levels of urogenital symptoms (ß = -0.195, p = 0.005), which mediated its indirect significant effects on the somatic-vegetative and psychological symptoms of menopause (ß = -0.046, -0.067; both p values = 0.004, respectively), especially in BRCA2 carriers and in women who were currently physically active, premenopausal at the time of RRSO, had a high BMI, and had no history of breast cancer. It increased the severity of urogenital symptoms in women with a history of cancer. MBSR, on the other hand, was associated with indirect increases in the intensity of the somatic-vegetative and psychological symptoms of menopause (ß = 0.108, 0.029; p = 0.003, 0.033, respectively). It exerted positive direct effects on different menopausal symptoms in multigroup analysis. The results suggest that young women undergoing recent RRSO may benefit from HRT at an individual level, while their need for extensive measures to optimize their psychological wellbeing is ongoing. The adverse effects of MBSR, which are captured in the present study, imply that MBSR may interfere with redox sensitivity associated with estradiol fluctuations in BRCA1/2 carriers. Investigations are needed to test this hypothesis and elaborate on the underlying mechanisms in these women.