The Experience of Hope of Dyads Living with Advanced Chronic Illness in Portugal: a longitudinal mixed-methods pilot study

Abstract

Background Hope is an important resource for patients and families to thrive during difficult times. This study aimed: 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 A longitudinal mixed-methods study with a convergent design was conducted. 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 the patient’s symptom burden. Descriptive statistics were undertaken using the STATA® 14.2 version. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads' experience of hope was described 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 include “Living one day at the time”, “To have force/strength” and “To be in good health”. Changes in patterns of hope were captured for each dyad in their transition over time. Data converge for all Dyads except for 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, to share experiences. More research is needed to address patients' and informal caregivers' hope in chronic illness since current hope-based interventions primarily target cancer diagnoses.