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.

Revie ⊕: Impact of a resource-based life review intervention on patients with advanced cancer: A waitlist controlled trial.

PURPOSE: Life review interventions aim to support individuals facing an incurable disease accompanied by existential concerns and health-related challenges. Based on encouraging feasibility results, this study assessed the effects of Revie ⊕ life review intervention on the self-esteem of patients with advanced cancer, and the effects on well-being, post-traumatic growth, life satisfaction, symptom burden and interaction with nurses. METHOD: The study consisted of a two-arm parallel-group, waitlist-controlled trial (WCT) in the oncology division of a Swiss-French University Hospital. Revie ⊕ was composed of nurse-led meeting with the patient to address and document significant life events using a strengths-focused approach and targeting the life project. RESULTS: Due to Covid-19 pandemic, adjustments were made regarding study duration and participant's allocation: Fifty-eight patients received Revie ⊕, 39 completed all the measurements. Self-esteem was high at baseline and maintained stability over time. The social well-being decreased in the intervention group before-after Revie ⊕ (-1.7 (3.9), p = 0.044) while emotional and functional well-being showed stability. The intensity of symptoms decreased in the intervention group before-after Revie ⊕: 4.9 (9.4), p = 0.020. CONCLUSIONS: This study suggests that patients living with an advanced cancer and who received Revie ⊕ intervention may have maintained their self-esteem high over time. Observed results are promising, particularly considering the influence of the pandemic. Nevertheless, these findings do not allow us to draw definitive conclusions regarding the efficacy of the intervention on self-esteem. WCT seems not to be the appropriate design to highlight the added value of Revie ⊕ for this particularly vulnerable population. CLINICAL TRIAL REGISTRATION NUMBER: NCT04254926.

PANDORA dyadic project: hope, spiritual well-being and quality of life of dyads of patients with chronic obstructive pulmonary disease in Switzerland - a multicentre longitudinal mixed-methods protocol study.

INTRODUCTION: Chronic obstructive pulmonary disease (COPD) is responsible for 2.9 million deaths annually in Europe. Symptom burden and functional decline rise as patients reach advanced stages of the disease enhancing risk of vulnerability and dependency on informal caregivers (ICs).Evidence shows that hope is an important psycho-social-spiritual construct that humans use to cope with symptom burden and adversity. Hope is associated with increased quality of life (QoL) comfort and well-being for patients and ICs. A better understanding of the meaning and experience of hope over time as patients transition through chronic illness may help healthcare professionals to plan and deliver care more appropriately. METHODS AND ANALYSIS: This is a longitudinal multicentre mixed-methods study with a convergent design. Quantitative and qualitative data will be collected from dyads of advanced COPD patients and their ICs in two university hospitals at two points in time. The Herth Hope Index, WHO Quality of Life BREF, Functional Assessment of Chronic Illness Therapy-Spiritual Well-being and the French version of the Edmonton Symptom Assessment Scale will be used to collect data. Dyadic interviews will be conducted using a semi-structured interview guide with five questions about hope and their relationship with QoL.Statistical analysis of data will be carried out using R V.4.1.0. To test whether our theoretical model as a whole is supported by the data, structural equation modelling will be used. The comparison between T1 and T2 for level of hope, symptom burden, QoL and spiritual well-being, will be carried out using paired t-tests. The association between symptom burden, QoL, spiritual well-being and hope will be tested using Pearson correlation. ETHICS AND DISSEMINATION: This study protocol received ethical approval on 24 May 2022 from the Commission cantonale d'éthique de la recherche sur l'être humain-Canton of Vaud. The identification number is 2021-02477.

Is massage a legitimate part of nursing care? A qualitative study.

INTRODUCTION: The use of massage therapy has received increased attention in the treatment of chronic pain. However, barriers can hinder its use in nursing care. This study uses a qualitative methodology to explore professionals' experiences regarding touch massage (TM) and identify barriers and facilitators for the implementation of this intervention. MATERIALS AND METHODS: This study is part of a larger research program aimed at investigating the impact of TM on the experiences of patients with chronic pain hospitalized in two units of an internal medicine rehabilitation ward. Health care professionals (HCPs) were trained either to provide TM or to use of a massage-machine device according to their units. At the end of the trial, two focus groups were conducted with HCPs from each unit who took part in the training and agreed to discuss their experience: 10 caregivers from the TM group and 6 from the machine group. The focus group discussions were tape-recorded, transcribed and analyzed using thematic content analysis. RESULTS: Five themes emerged from thematic content analysis: perceived impact on patients, HCPs' affective and cognitive experiences, patient-professionals relationships, organizational tensions, and conceptual tensions. Overall, the HCPs reported better general outcomes with TM than with the machine. They described positive effects on patients, HCPs, and their relationships. Regarding interventions' implementation, the HCPs reported organizational barriers such as patients' case complexity, work overload, and lack of time. Conceptual barriers such as ambivalence around the legitimacy of TM in nursing care were reported. TM was often described as a pleasure care that was considered a complementary approach and was overlooked despite its perceived benefits. CONCLUSION: Despite the perceived benefits of TM reported by the HCPs, ambivalence arose around the legitimacy of this intervention. This result emphasizes the importance of changing HCPs' attitudes regarding a given intervention to facilitate its implementation.