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.

The association between living arrangements and health-related quality of life in Korean older people: a nationwide repeated cross-sectional study.

BACKGROUND: This study investigated the association between living arrangements and healthrelated quality of life (HRQoL) in older people. METHODS: A secondary analysis was conducted of 6,153 participants (aged ≥60 years) from the seventh Korean National Health and Nutrition Examination Survey (2016 to 2018). HRQoL was measured using the 3-level version of the EuroQol 5-dimensional questionnaire. The chi-square test, t-test, and multiple regression were used, applying sampling weights for the analysis. RESULTS: The proportion of respondents living alone was 18.0%, with a higher prevalence among women and older age groups (p<0.001). The overall HRQoL was lower in groups living alone than in groups living with others (p<0.001). Older people living alone showed higher impairments in all dimensions of the 3-level version of the European Quality of Life 5-Dimensional Questionnaire (EQ-5D-3L) than those living with others, including mobility (p<0.001), self-care (p<0.001), usual activities (p<0.001), pain/discomfort (p<0.001), and depression/anxiety (p<0.001). Problems with mobility were most prevalent (42.8%), followed by pain/ discomfort (41.9%) in respondents living alone. Living alone was significantly associated with a lower HRQoL index score (b=-0.048, p<0.001) after adjusting for age, gender, education, exercise, perceived stress, and perceived health status. CONCLUSION: Living alone was negatively associated with HRQoL. Based on this study, future care planning for older people should consider their living arrangements. The need to strengthen and expand care programs targeting those living alone should also be addressed.

Application and challenges of using a Constructivist Grounded Theory methodology to address an undertheorized clinical challenge: A discussion paper.

Background: The benefits of nurse-led therapeutic patient education regarding wound healing and the prevention of recurrences for individuals living with a venous leg ulcer remain unclear. Obtaining the individuals perspective could offer an in depth understanding of why and how they engage or not, in self-management strategies following nurse-led patient education. Despite strong evidence indicating the need for further investigation into the benefits of therapeutic patient education in this population there is a lack of research into how individuals cope with chronic venous insufficiency or resulting ulceration. With this discussion paper we therefore explore the challenges associated with employing a Constructivist Grounded Theory methodology to gain a deeper insight into the experiences of patients with venous leg ulcers receiving individualized nurse-led patient education programs focused on the self-management of their condition. Objective: To identify and analyse the specific methodological and practical challenges encountered when applying a Constructivist Grounded Theory methodology to gain a better understanding of how patients with venous leg ulcer experience an individualised nurse-led patient education programme concerning the self-management of their condition. Design: discussion paper. Results and Discussion: The constructivist approach to Grounded Theory methodology allows for the investigation of understudied phenomena such as nurse-led patient education for individuals living with venous leg ulcers. This methodology values the co-construction of a theory taking into consideration the inherent value of participants' and researchers' experiences. However, the specificities of constructivist epistemology challenge certain methodological aspects of Grounded Theory methods, such as how and when to use existing literature, conduct interviews to generate data and engage in the coding and theoretical sampling process for conceptualizing and proposing a theory. Conclusions: The constructivist paradigm of grounded theory methodolgy resonates with the art and science of nursing through its collaborative 'real-world' reflective approach, offering a unique way to explore understudied complex clinical nursing practice. Registration: This methodological paper is derived from a PhD study embedded in a clinical trial (NCT04019340) were the recruitment started on February 2020, approved by ethical committee of Geneva (CCER: 2019-01964). Tweetable abstract: Constructivist Grounded Theory Methodologies could support an in depth understanding of the impact of nursing interventions.

Interdisciplinary research approach based on a mixed-methods design to explore patient altruism at the end of life: a study protocol.

INTRODUCTION: In the end of life context, patients are often seen as somewhat passive recipients of care provided by health professionals and relatives, with little opportunity to be perceived as autonomous and active agents. Since studies show a very high prevalence of altruistic dispositions in palliative care patients, we strive to investigate the concept of patient altruism in a set of six interdisciplinary studies by considering three settings: (1) in the general palliative context-by studying to what extent patient altruism is associated with essential psychological outcomes of palliative care (subproject 1a), how altruism is understood by patients (subproject 1b) and how altruism expressed by patients is experienced by palliative care nurses (subproject 1c); (2) in two concrete decision-making contexts-advance care planning (subproject 2a) and assisted suicide (subproject 2b); and (3) through verbal and non-verbal patient communication in palliative care settings (subproject 3). METHODS AND ANALYSIS: Subproject 1a: a cross-sectional study using validated and standardised questionnaires. Subprojects 1b and 1c: a constructivist grounded theory method aiming at developing a novel theory from semistructured interviews in both patients and nurses. Subproject 2a: a thematic analysis based on (1) audio-recordings of advance care planning encounters and (2) follow-up semidirective interviews with patients and their relatives. Subproject 2b: a qualitative study based on thematic analysis of interviews with patients actively pursuing assisted suicide and one of their relatives.Subproject 3: a conversation analysis based on audio and video-recorded interactions in two settings: (1) palliative inpatient unit and (2) advance care planning discussions. ETHICS AND DISSEMINATION: The study project was approved by the Ethics Committees of the Canton of Vaud, Bern and Ticino (no: 2023-00088). In addition to participation in national and international conferences, each project will be the subject of two scientific publications in peer-reviewed journals. Additional publications will be realised according to result triangulation between projects. A symposium opened to professionals, patients and the public will be organised in Switzerland at the end of the project.

Future policy and research for advance care planning in dementia: consensus recommendations from an international Delphi panel of the European Association for Palliative Care.

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

Patient altruism at the end of life: A scoping review.

OBJECTIVES: The concept of altruism is evidenced in various disciplines but remains understudied in end-of-life (EOL) contexts. Patients at the EOL are often seen as passive recipients of care, whereas the altruism of professionals and families receives more research and clinical attention. Our aim was to summarize the state of the scientific literature concerning the concept of patient altruism in EOL contexts. METHODS: In May 2023, we searched 11 databases for scientific literature on patient altruism in EOL contexts in consultation with a health information specialist. The scoping review is reported using the PRISMA checklist for scoping reviews. We used a data charting form to deductively extract data from the selected articles and then mapped data into 4 themes related to our research questions: how authors describe and employ the concept of patient altruism; expressions of patient altruism; consequences of patients' altruistic acts; and possible interventions fostering patient altruism. RESULTS: Excluding duplicates, 2893 articles were retrieved; 33 were included in the final review. Altruism was generally considered as an act or intention oriented toward the benefit of a specific (known) or non-specific (generic) recipient. Patients expressed altruism through care and support, decisions to withhold treatment or actively hasten death, and engagement in advance care planning. Consequences of altruism were categorized in patient-centered (contribution to meaning in life and quality of life), non-patient-centered (leaving a positive impact and saving money), and negative consequences (generating feelings of guilt, exposing individuals with low self-esteem). Interventions to encourage altruism comprised specific interventions, providing opportunities to plan for future care, and recognizing and respecting the patients' altruistic motivations. SIGNIFICANCE OF RESULTS: We identified heterogeneous and limited research conceptualization of patient altruism and its operationalization in palliative care settings. A deeper conceptual, empirical, and theoretical exploration of patient altruism in EOL is necessary.

The state of transience, and its influence on the wish to die of advanced disease patients: insights from a qualitative phenomenological study.

BACKGROUND: The experience of Wish to Die is common in patients living with Advanced Disease. It has been studied worldwide and qualitative studies have contributed to the understanding of the complexity of the phenomenon of the WTD but a deeper understanding on the individual's views is still needed. The objective of this study was to identify common characteristics of the experience of wish to die in advanced disease. METHODS: A phenomenological study was carried out with multicenter participation of patients with advanced disease who had expressed their wish to die to health professionals. Semi-structured interviews were employed to obtain an in-depth perspective of each patient's lived experience. A phenomenological analysis of the data collected was performed to describe and explore the characteristic aspects of the phenomenon under study. RESULTS: Fourteen patients with advanced disease were interviewed. Most of them had cancer. In the analysis of the patients' accounts of their experiences, three common characteristics were identified: a) experiencing a state of transience; b) the attempt to reconnect with oneself; and c) additional disease-related aspects that influence the wish to die. Patients expressed the need for a safe space to address the wish to die and the importance of receiving care that considers both 'being' and 'doing'. CONCLUSIONS: Patients with advanced disease and wish to die experience a state of transience where the patient lives and ephemeral state of existence. Interventions focused on reinforcing the intrinsic value of the individual emerge as essential components of a compassionate accompaniment of those facing the wish to die.

Validation of the Spanish version of the five-item General Self-Efficacy (GSE) scale in a sample of nursing students: Evidence of validity, reliability, longitudinal invariance and changes in general self-efficacy and resilience in a two-wave cross-lagged panel model.

AIM: The aim of this study is to validate the Spanish version of the five-item General Self-Efficacy scale in a sample of nursing students, by: 1) offering evidence of validity and reliability; 2) studying the longitudinal measurement invariance of the scale; 3) providing evidence on the changes in the levels of self-efficacy that occur after one year of nursing education; and 4) offering longitudinal evidence on the relationship between nursing students' self-efficacy and resilience levels. BACKGROUND: Nurses' general self-efficacy has been related to both personal and organizational outcomes. In Spain, some competencies the students must acquire during the Degree in Nursing implicitly refer to self-efficacy. For the measurement of general self-efficacy, the General Self-Efficacy Scale is one of the most widely used in Europe. DESIGN: A longitudinal design was used. Research took place at the University of Valencia and the University of the Balearic Islands (Spain). Participants were 324 nursing students, in the first year of the Nursing Degree. METHODS: The five-item General Self-Efficacy scale and the Brief Resilience Coping Scale were used. Analyses included descriptive statistics, reliability estimates, confirmatory factor analysis, a longitudinal measurement invariance routine and several competing cross-lagged models. RESULTS: Evidence of reliability shown by the scale was adequate and a one-factor solution for the structure was found. Additionally, the five-item GSE showed evidence of invariance over time. A causal effect of self-efficacy on nursing students' levels of resilience was found. CONCLUSIONS: The Spanish version of the five-item General Self-Efficacy scale is a brief instrument that can contribute to the assessment of some of the basic competencies of the Degree in Nursing, which improve during their education and how these changes are related to other skills important for the nursing profession, such as resilience.