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

The Experience of Hope of Dyads Living with Advanced Chronic Illness in Portugal: a longitudinal mixed-methods pilot study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article The Experience of Hope of Dyads Living with Advanced Chronic Illness in Portugal: a longitudinal mixed-methods pilot study Filipa Baptista, Maria Gonçalves, Cláudia Fernandes, Carlos Laranjeira, and 5 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-3933532/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 14 Aug, 2024 Read the published version in BMC Palliative Care → Version 1 posted 4 You are reading this latest preprint version 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. Hope dyad chronic illness palliative care mixed methods End-of-Life Figures Figure 1 Figure 2 Figure 3 Background Hope is defined by Dufault and Martocchio [ 1 ] as “ a multidimensional dynamic life force characterized by a confident yet uncertain expectation of achieving a future good which, to the hoping person, is realistically possible and personally significant” (p.380). This concept has been the object of academic study in both the arts and sciences [ 2 ], but a conclusive definition is elusive. Evidence shows that hope is an important resource that positively influences Quality of Life (QoL) and contributes to comfort and well-being for patients and families [ 3 , 4 ]. On the other hand, hopelessness is associated with the burden of symptoms like pain, anxiety, depression, fatigue, spiritual suffering, and suicidal ideation [ 3 , 5 , 6 ]. When patients and families face the consequences of chronic advanced illness, they may need to reassess what hope represents to them, especially when hope for a cure is unlikely [ 7 ]. Yet, hope remains present even if life is threatened by near death or if no cure is possible [ 2 ]. A recent systematic review and narrative synthesis exploring patients' perception of hope in palliative care highlights the significance of recognizing patients' comprehension of hope, its function, and the endeavors necessary to maintain it towards End-of-Life (EoL) [ 8 ]. The authors indicate that hope functions as a valuable approach, nurturing meaningful interpersonal connections [ 8 ]. Furthermore, they suggest that healthcare professionals can address communication challenges of clinical practice by orchestrating hope-based interventions that involve the participation of patients' family and friends [ 8 ]. Even though hope is widely explored, the focus has been mostly directed toward cancer patients [ 9 – 12 ] or cancer caregivers [ 13 , 14 ] with limited scope for translation to a chronic illness population. Although hope has been described as a positive resource that enables patients to cope with challenging situations in the context of advanced chronic conditions, hope can also be seen as an obstacle or a barrier when patients deny or avoid their situation or when expectations are unrealistic [ 15 ]. The value of hope and how hope acts as a resource to empower and help patients cope and increase their spiritual wellbeing is widely described in the literature [ 15 , 16 ]. An Informal Caregiver (IC) is an individual who consistently dedicates their time, typically at least once a week, to support a family member or a loved one, of any age facing an illness or a decrease in their ability to be independent [ 17 ]. This caregiver could be a spouse, parent, child, sibling, friend, or neighbor. Generally, the IC has no professional training, no working contract or monetary compensation [ 17 ]. ICs are providing complex care for their loved ones [ 18 ]. ICs experience feelings of fear, uncertainty, loss, separation and the trauma of imminent death when caring for and supporting patients with advanced chronic illness [ 19 – 21 ]. Often, they are overwhelmed, at risk of poor physical and psychological outcomes, surpass their own personal limits, and become exhausted and susceptible to illness themselves [ 20 , 21 ]. A systematic review of 26 studies examining factors associated with hope in family caregivers of persons living with chronic illness, suggests a possible link between ICs hope and ICs over all positive health [ 18 ]. Indeed the authors found that, as hope levels increase, ICs coping abilities improved, including self-efficacy and preparedness for caregiving tasks, while maladaptive coping strategies decreased the levels of hope [ 18 ]. Additionally, feelings of anxiety, depression, distress, grief, and guilt were negatively associated with the level of hope experienced by ICs [ 18 ]. Sociodemographic characteristics of ICs seem to be not related to hope [ 18 ]. A dyad is defined as an interactive relationship between two individuals [ 22 ]. Patients and ICs are usually considered separately and models of care have therefore tended to target one or other group but rarely both together [ 23 ]. As a result they have limited focus and fail to capture the factors which inhibit or enhance the reality of care [ 23 ]. Furthermore, the way in which patients and ICs co-produce their experience of illness is hardly explored in the literature [ 18 , 24 ]. A cross sectional study of dyads of hemodialysis patients and their family caregivers, showed that hope scores for each person were indicative of their own higher QoL scores [ 25 ]. Hope was measured using the Herth Hope Index (HHI) and QoL by the World Health Organization Quality of Life - BREF (WHOQOL-BREF) [ 25 ]. Patients’ hope scores were associated with improved QoL in the environmental domain for family caregivers [ 25 ]. Thus, to improve QoL, clinicians should target not only the patient but also their ICs, because of the reciprocal influence. A recent systematic review of the literature on factors associated with hope in family caregivers of people living with life-limiting illness found that ICs’ physical and mental health, as well as the care recipients’ self-efficacy and hope were positively associated with ICs hope. Conversely, caregivers' hope was negatively associated with indicators of poor mental health, such as anxiety, depression, distress, and feelings of grief and loss [ 18 ]. Few studies have focused on dyads’ experience of hope when dealing with chronic illness [ 4 , 25 – 28 ], in particular for patients with non-oncological illnesses [ 13 ]. As part of a multicenter longitudinal mixed-methods study of dyads of patients with chronic obstructive pulmonary disease and their ICs [ 28 ], this pilot study provided a valuable foundation for refining the methodology of our current research [ 28 ]. Working at a dyadic level enables a relationship-based understanding of dyadic behaviours and coping strategies to emerge, thus managing illness that affects both, patients and ICs health and well-being [ 23 ]. Palliative care must emphasize healthy transitions, which generates opportunities for healthcare professionals to assist dyads according to their needs [ 29 ]. This encompasses focusing on facilitating smooth transitions for both the patient and their ICs, ensuring that the care provided not only addresses the patient's needs but also supports and assists the IC in coping with their responsibilities [ 29 ]. Such an approach aligns with Meleis' theory by recognizing the interconnectedness between the patient and their IC, emphasizing the need to offer tailored support to both individuals within the dyad [ 29 ]. This can include personalized care plans, psychological support, education, and resources aimed at addressing the unique challenges and requirements of the dyadic relationship, ultimately contributing to a more effective and holistic palliative care experience [ 29 ]. The aims of this pilot study were a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illnesses and their ICs, and b) to evaluate variations of hope and symptom burden across time in dyads. We hope this study provides an expanded and more comprehensive understanding of the multidimensional phenomena of hope in dyads. Methods A longitudinal mixed-methods study with a convergent design was conducted [ 30 ].To gain a deeper understanding of transitional patterns of hope focused on dyadic experience over time, data were collected through semi structured dyadic interviews and a survey at two time points (T1 – baseline and T2–4 months after baseline). The merits of this method lie in its capacity to flexibly assess the interplay between time and context in a non-linear manner [ 31 , 32 ]. This study was conducted between December 2020 and April 2021 in a 485-bed public hospital in the north of Portugal, and adheres to the recommendations for Good Reporting of a Mixed Methods Study (GRAMMS) [ 33 ]. Setting and sample recruitment The study took place in the palliative care outpatient clinic in a public hospital in Portugal. Participants were purposively selected by the hospital based palliative care consultation team and research team together. The population consisted of patients with non-cancer life-limiting illness (advanced/incurable chronic illness) and/or limited life expectancy (according to Prognostic Indicator Guidance from the Gold Standard Framework (GSF) [ 34 ]) and their ICs. ICs were identified by the patient as the person most involved in care and support (emotional or physical support). We based the inclusion criteria on the specific clinical indicators related to organ failure trajectories described in the GSF framework [ 34 ]. Participant’s inclusion and exclusion criteria are presented in Table 1 . Table 1 Eligibility criteria of participants Inclusion criteria Exclusion criteria 1. Patient or informal caregiver sufficiently literate in Portuguese language to understand written information or follow an interview 2. Adult patient diagnosed with non-cancer conditions [ 34 ]: - severe chronic lung diseases or - chronic heart failure or - chronic kidney disease or - stroke with severe functional impairment or - chronic liver disease or - motor neurone disease with marked rapid decline in physical status or - multiple sclerosis with major complex symptoms or - HIV/AIDS 3. Patient whose general health status is suitable for participation in the study based on a clinical judgement of the clinical team 4. Clinician advice based on the negative answer to the “surprise question”: “Would you be surprised if this patient died in the next 12 months?” [ 35 ] 1. Patient with an anticipated prognosis of less than three months 2. Patient is diagnosed with active cancer, receiving curative or palliative cancer therapies 3. Cognitive impairments were screened using the Portuguese version of the Short Portable Mental Status Questionnaire (SPMSQ) (≥ 6 errors) [ 36 ] Data collection Data collection was undertaken by two registered nurses; FBPB, a doctoral student and clinical nurse specialist in palliative care with a master’s in nursing sciences; and, CF, a clinical nurse specialist in palliative care with a master’s degree in palliative care, both trained in qualitative interviewing. Neither had prior contact with the patients and/or the ICs. CF, working in the hospital based palliative care consultation team, was responsible for identifying eligible patients with MG, the head-physician of the palliative care team. Once eligible participants were identified, researchers would present the study to them and give them at least 24 hours to decide if they wanted to participate or not. Following informed consent, the research team called participants and set an appointment at the palliative care outpatient clinic where T1 data collection would take place. Participants were given the choice of the place of the interview and data collection; all preferred to meet the research team at the hospital. The study was granted permission by the ethics committee of the hospital in which data collection took place (Ref: 86/2020). All dyads included in the study received a participant information letter. Written formal consent was obtained before any data collection. Instruments Quantitative data collection involved three parts: Sociodemographic and clinical data from the patient’s chart included the following variables: age (years); marital status (single/married/divorced); education (1st, 2nd, 3rd cycles, secondary and higher education); professional situation (employed, retired, sick leave); religious beliefs; Medical diagnosis; Date of diagnosis (years). Portuguese version of the Herth Hope Index (HHI) [ 37 , 38 ]. The HHI is a reliable instrument to measure the level of hope in patients with life-limiting illnesses and ICs. The HHI is a 12-item, four-point Likert scale with a possible score ranging between 12 and 48 with higher scores indicating higher levels of hope [ 38 ]. Given the scale performs differently among patients and caregivers, we opted to use the original structure composed of 12 items distributed in 3 factors [ 37 ]. Factor 1 is related to the person’s inner sense of temporality and future (items 1, 2, 6 and 11) (range: 4–16), Factor 2 concerns one’s inner positive readiness and expectancy (items 4, 7, 10 and 12) (range: 4–16), and, finally, Factor 3 is about the interconnectedness with self and others (items 3, 5, 8 et 9) (range: 4–16). The Cronbach’s alpha of the original version of HHI was 0.97 [ 37 ]. Two items of this scale are reversed (items 3 and 6) to counteract response bias [ 37 ]. Edmonton Symptom Assessment System—ESAS [ 39 , 40 ]. The ESAS is a 9-item patient rated symptoms (Pain, Fatigue, Nausea, Depression, Anxiety, Drowsiness, Appetite, Well-being, Shortness of breath) scale and a numerical rating for symptom severity (0–10) [ 39 ]. The total scores range from 0 to 90 and higher scores indicate greater symptom burden [ 39 ]. ICs only completed the HHI. Each participant completed the questionnaires separately in the presence of one of the research members. The reliability of the instrument reveals good indicators. Qualitative data was obtained using a semi-structured dyadic interview guide developed by the authors. Dyadic interviews recognise the interdependence between individuals, involving one interviewer and two interviewees interviewed together [ 41 , 42 ]. The semi-structured interview guide was developed to capture the essence of the dyad experience of hope, inspired by the six dimension Model of Hope by Dufault & Martocchio [ 1 ]. The interview guide was revised and validated by a committee of experts in health related qualitative method studies (GDRR, AQ, CL and PL). The content of the finalized semi-structured interview guide is presented in Table 2 . Table 2 Semi-structured interview guide based on conceptual dimensions of hope proposed by Dufault & Martocchio [ 1 ] Conceptual base Questions Definition of the concept of hope When I speak to you about the word hope, what are the first thoughts that come to your mind? Contextual Given the situation at the moment, what makes you hopeful person? What is the meaning/significance of your life? Cognitive If you had to tell someone what it takes to have hope, what would you tell them? Can you identify a source of hope for you? What gives or takes away your hope? Afective In light of the situation you are experiencing, how do you maintain hope? (emotions/feelings, doubts...) Afiliative In what way do others (family, friends, luck, fate, God) influence your hope? How do they help you to keep your hope alive? Behavioural What do you hope for in your life (goals/motivations)? Do you have plans? (Tell me about ...) Temporal In which way has time changed your experience of hope? Procedures Qualitative and quantitative data were collected at the same time at two points in time (T1 – baseline, and T2–4 months after baseline). Table 3 shows the schedule of the assessments and the interviews. Table 3 Schedule of assessments and interviews T1 Baseline T2 (4 months after T1) Dyads X X X X Measures Socio-demographic and clinical data X HHI X X ESAS (only for patients) X X Semi-structured interviews X X Interviewers audiotaped the interviews and took field notes to ensure accuracy and veracity as well as offering opportunities for reflection on and after the process. A total of 15 interviews were conducted. The duration of interviews lasted 27 minutes on average (ranging from 15 to 45 minutes). Data Analysis Quantitative data was analysed using STATA® 14.2 version. Descriptive statistics (frequencies, percentages, range, means ± standard deviation) were used to depict the sample over time (T1 and T2). Dyadic semi structured interviews were transcribed verbatim and analysis was conducted following a codebook thematic analysis approach as described by Braun & Clarke [ 43 , 44 ]. Thematic analysis was chosen because of his flexibility and adaptability to pragmatic approaches. Furthermore, thematic analysis offers a transparent and systematic process for data analysis, with clear steps for a rigorous analysis [ 43 ]. From a social constructivist perspective, reality is seen as a socially constructed and subjective, meaning is co-constructed through interactions [ 45 ]. The ontological and epistemological assumptions of thematic analysis align with the aim of our study as we wanted to explore the dyadic subjective experience of hope and understand the socially constructed nature of meaning [ 44 ]. Before starting the analysis, recordings of each interview were listened to, and notes were taken. A brief description of the context of the interview was also written. The model of Hope of Dufault and Martocchio and inductive and deductive reasoning were used to interpret the experience of dyads [ 1 ]. We started with the six dimensions of hope from the model of Hope of Dufault and Martocchio as initial codes. The first two interviews were coded by FBPB, GDRR, AQ and CL separately. After that the researchers meet to combine the analysis, discuss, and agree on codes and themes. After having a structure of themes and codes, FBPB continued the analysis and meet regularly with GDRR, AQ and CL to validate the analysis. Finally, themes were defined and named, and those definitions were reviewed by all members of the research team. Interviews were analysed in their original language and then themes, and sub-themes were translated into English. WebQDA software® was used to analyse and store data. After analyzing the questionnaires and interview data, the data were merged and reported using both the Dufault and Martocchio model of Hope and the middle-range transitions theory of Afaf Meleis helped to identify the patterns of transition of dyads living with advanced chronic illness. We present Dyad’s Constructs of Hope, which represent the definition of hope of dyads within the context of advanced chronic illness. Additionally, we present a descriptive analysis of dyads experience of hope in which the model of Hope of Dufault and Martocchio served as a blueprint. Finally, in a joint display we present a description of each interviewed Dyad’s and the changes in their experience over time combined with HHI results. In the joint display we present when data converge or diverge. Convergence occurs when qualitative and quantitative data corroborate or complement each other, providing a unified understanding or explanation of the research question. For instance, if qualitative interviews reveal a certain trend and quantitative results confirm the same trend, it demonstrates convergence between the two data sets, enhancing the overall validity and reliability of the study. On the other hand, divergence represents inconsistencies between qualitative and quantitative findings. Divergence highlights contrasting results which offer opportunities to explore discrepancies, understand nuanced aspects, or identify limitations within the study. Divergence does not necessarily imply conflict or contradiction; rather, it can offer valuable insights into the complexity of the experience of hope of dyads [ 46 ]. Trustworthiness To ensure trustworthiness and credibility , two members of the team independently analysed the verbatims (FBPB and GDRR) and then confirmed the results with other members of the team (PL, AQ, CF, SP)[ 43 ]. A codebook based on the six dimensions of hope was developed with additional themes added as they arose from the data and subsequently, validated by the other team members. Comprehensive field notes were taken overtime to ensure transferability [ 47 ]. Longitudinal qualitative data is complex to analyze. As two sets of data were collected at two points in time, the aim was to grasp the changes over time, rather than a snapshot in time, common to most qualitative studies [ 48 ]. Confirmability was guaranteed using triangulation (investigator, methods and theory), multiple researchers collected data and different theoretical perspectives were used to analyse the data, as well as different methodologies were used to approach the problem [ 47 ]. The thematic analysis, member-checking, and presentation of reports were repeated at T1 and T2. Results Participant’s background A total of eight dyads completed baseline measures. Table 4 shows participants’ sociodemographic and clinical characteristics. Most of the dyads were in a close family relationship to the patient and the age ratio between the patient and the IC varied depending on the status of that relation (i.e, married couples tended to be closer in age than parent-child dyads). One patient (Dyad H), although married, received their main caregiving from friends. Patients presented with a range of chronic life-limiting illnesses conducive to the need for ongoing complex care and support. With one exception, all dyads completed T1 and T2 data collection. Drop out of Dyad C was due to deterioration in health and inability to complete instruments and follow an interview at T2. Table 4 Participants’ sociodemographic and clinical characteristics. Dyad A B C D E F G H Participants (N = 8 dyads) Mother (PT) and son Wife (PT) and husband Brothers Father (PT) and daughter Mother (PT) and son Husband (PT) and wife Husband (PT) and wife Friends Patient diagnostic COPD ALS CHF ILD chronic respiratory failure COPD Pulmonary fibrosis ALS Date of diagnosis 2010 2009 2011 2017 2000 2001 2000 1997 Marital status Patient IC Divorced Single Married Married Single Married Married Married Married Single Married Married Married Married Married Married Patient age (58.88 ± 9.46) 58 68 46 61 52 70 48 68 IC age (44.62 ± 19.96) 20 69 43 35 20 74 49 47 Professional situation Patient IC retired employed retired retired Sick leave employed retired employed retired employed retired retired retired retired retired employed Religion Evangelical Protestantism Catholic Catholic Catholic Catholic Catholic Catholic Catholic Level of education Patient IC 3rd cycle Secondary 1st cycle 1st cycle 1st cycle 3rd cycle 1st cycle Secondary 1st cycle 3rd cycle 1st cycle 1st cycle 3rd cycle 1st cycle 1st cycle 3rd cycle Number of interviews 2 2 1 2 2 2 2 2 COPD - Chronic obstructive pulmonary disease ALS - Amyotrophic lateral sclerosis CHF - Chronic heart failure ILD - Interstitial lung disease The patient is presented with the acronym “PT” Variations of Hope over time Overall, subdimensions of hope were stable across time (see Fig. 1 ). However, in some cases a strong variation between T1 and T2 can be observed. The patient of Dyad A had a relatively low score in Factor 1 at T1, while at T2 this increased. Yet, Factor 2 and Factor 3 had high values at T1 and decreased at T2. At the same time, the IC of Dyad A remained stable between T1 and T2. [INSERT FIGURE 1 HERE] Figure 1 Shows Dyads levels of hope in each subdimension of the HHI at T1 and T2. ICs - Informal caregivers Factor 1 - Inner sense of temporality and future (items 1, 2, 6 and 11) (range 4–16) Factor 2 - Inner positive readiness and expectancy (items 4, 7, 10 and 12) (range 4–16) Factor 3 - Interconnectedness with self and others (items 3, 5, 8 et 9) (range 4–16) Global scores of Hope and Symptom burden over time Participant’s scores of hope were stable over time (see Table 5 ). Patients had higher scores of hope at T2 while ICs results were constant. Symptom burden scores were higher at T2 when compared to T1. Table 5 Dyads HHI and ESAS scores. T1 T2 Dyad Patient ESAS score (20.13 ± 12.30) Patient HHI score (40.13 ± 4.39) IC HHI score (42.75 ± 2.96) Patient ESAS score (26.00 ± 15.26) Patient HHI score (41.43 ± 5.44) IC HHI score (42.71 ± 4.35) A 45 39 46 47 38 40 B 4 46 39 6 47 45 C 18 34 42 Drop out Drop out Drop out D 12 40 43 36 41 45 E 21 40 44 12 48 48 F 23 37 38 22 41 41 G 12 47 44 19 43 35 H 26 38 46 40 32 45 ESAS - Edmonton Symptom Assessment System HHI – Herth Hope Index IC - Informal Caregiver Although most patients presented similar ESAS scores at T1 and T2, some (notably patients D & H) showed changes in self-estimated symptom burden between T1 and T2 which was considered unsurprising given the nature of their evolving illness. Dyad’s Constructs of Hope [INSERT FIGURE 2 HERE] Figure 2 Dyad’s Constructs of Hope From the perspective of Dyads, hope is living one day at the time, to have inner strength/force, and to be in good health. They described "to live" as having QoL, new opportunities (treatment/future/things to get better) and living one day at a time. Dyad F, Patient, T1: “If one has hope has will to live.” Dyads describe this “force” as an internal resource, like something they have “inside” themselves. Living one day at the time For dyads the construct of hope is associated with life. To live is having QoL, new opportunities and living one day at the time. For participants, QoL seems to have a "normal" life and being healthy to live without restrictions. Dyad A, Patient, T2: “Hope is to have more quality of life, to have quality of life, to be able to live normally, to be able to have a healthy life, to be able to go out, to be able to socialize...”. New opportunities were associated with possibilities, this could include receiving a transplant or having a miraculous treatment. This seemed to be related with how healthcare professionals suggest those treatments. Dyad G, Patient, T1: “[Hope] It's very simple, it's a [lung] transplant. .... It's the only thing.” Dyad G, IC, T1: “Everything is focused on this situation [the possibility of a transplantation]. Then we can go for a walk, hold hands, have coffee, have a romantic date...” Living one day at the time, was expressed as making no plans and living every day to the fullest possible extent. Dyad D, IC, T1: “I don't have any plans, because there's no point in making plans, it's better to live day by day intensely and one day at a time, nothing more than that.” To have inner force/strength Hope is also associated with a "force", expressed as a will to live or a force that comes "from inside". This force is needed to face the evolution of the illness for the dyad. While sometimes this inner "force" had to be actively developed to face the consequences of the illness, other times remains elusive which represents more difficult to activate this personal resource. Dyad B, IC, T1: “But I am the one who has to create strength to face what I have...” Dyad H, Patient, T1: “What keeps me hopeful is to be strong, to make myself strong and to keep myself in the best way so that my husband doesn't feel sad.” Dyad H, IC, T2: “I think I have a strength that I don't know where it comes from…” To be in good health Hope also means being healthy and the absence of a healthy state might induce a threat to hope. Dyad H, Patient, T1: “To me what comes to mind...hope…, is health, which is what I lack…” Dyad F, IC, T1: “Hoping we'll be healthy, living more or less well for me is this.” Model of hope – descriptive analysis of dyads experience of hope Figure 3 shows a descriptive analysis of the dyads’ experience of hope. The model of Hope from Dufault and Martocchio [ 1 ] was used to describe each dimension. [INSERT FIGURE 3 HERE] Figure 3 – Dyads experience of hope The affective dimension includes sensations and emotions [ 1 ]. In our study we found that dyads tended to feel a large range of emotions over time. This includes feelings of fear, sadness, happiness and anxiety. Dyad E in her first interview talked about the anxiety of waiting: “Sometimes it's a bit of anxiety, waiting…, sometimes it's difficult. You're always... anxious, always waiting for something to happen [waiting for the transplant]”. Dyad B expressed their happiness in small things like going for a walk or enjoying a meal in a restaurant despite all limitations : “I think like this, I'm happy, I live day to day...I still go for a walk now with my husband, I even go to the restaurant.”. The cognitive dimension comprises the wishes and dreams of dyads, the facilitators and barriers to the maintenance of hope [ 1 ]. Dyads’ most common dreams were related to their family and offspring. Dyad G wished to see their daughter going to university: "[Dreams] It's seeing my daughter go to university." Dyad E wanted to meet their grandchildren and be there for their children in special events like their wedding: " The plans I have are to meet my grandchildren and take my children to the aisle". Dyads’ facilitators of hope were expressed through getting good news. The patient of Dyad E was told by her pulmonologist that she meets the criteria for a lung transplant : “When my doctor said that my salvation was the transplant, then everything improved .... It changed my life completely, when the doctor told me, I was very happy...”. Factors that hindered dyads experience of hope were commonly bad news, patient of Dyad H shared : “What takes my hope away? Oh I don't know... if I get some not so good news.”. The behavioural dimension of hope encompasses the action-oriented approach individuals take towards their desired outcomes, spanning psychological, physical, social, and religious domains [ 1 ]. In the psychological sub-domain we found dyads actively want to hope a lung transplant will save them; for example, Patient of Dyad A expressed : “…because I don't know if I'll get it [the transplant] but I have to believe in something”. In the physical sub-domain, keeping active and being in contact with nature were actions taken by dyads that helped to maintain hope. Patient of Dyad E stated: “One thing that I have, that keeps me more in faith, more hopeful, for example, when I have those negative thoughts, I come outside to the garden and spend time with the plants and it's therapy for me.”. In the social sub-domain, some dyads reflected on their attitude of isolation towards society or even their loved ones; the brother of the patient in Dyad C expresses sadness over their brother not leaving the house and not putting in effort to lose weight. He emphasized that his brother needs to take responsibility for their own actions and that nobody else can do it for him. Both convey a sense of hopelessness. The IC described his brother as essentially present but not truly living life, likening them to a "dead person standing there.". The IC of Dyad C shared: It's sad, it's sad, of course, he doesn't leave the house and he could make a bit of an effort to lose weight. He's the one who has to do it for himself, nobody else can do it, otherwise, he's just a person who's there as if he wasn't there. He's a dead person standing there. Patient: It's exactly like that. The religious sub-domain reflects actions like prayer and attending Mass which involves reconnecting with one's faith and spiritual practice. This is represented by the IC of Dyad F : “I like going to Mass, I like praying, a lot… I pray in the morning. I get up and start praying straight away.”. The affiliative dimension encompasses a sense of connection beyond oneself, involving social interaction, mutual support, attachment, and the acknowledgement that others can significantly impact an individual's hopes [ 1 ]. In this dimension, dyads’ experience of hope was expressed as being in connection with others, being compassionate, being spiritual/religious, having an emotional connection and feeling an obligation to care. Being in connection with others involved receiving support from friends, Dyad G IC illustrates this : “When you need it most, they're always there, you need something and they're always ready, we live in a village, and there are very few public transport options, if I need something I call my brother-in-law or a friend, they're always ready.”. Being compassionate with others was part of the experience of hope of Dyad A. The patient spends most of her time at home, she is not capable of going out often due to the fact that her building doesn’t have elevator, however, she is the main support of a friend who needs comfort, during the interview she stated : “Every day I send her a message of encouragement, every day I send her a Good Night message in the evening, a Good Morning message to make sure she wakes up better.”. Being religious or spiritual is part of the experience of hope. The words "God," "hope," and "faith" frequently coexist in the same sentence. Dyad F IC said: “Have hope! Have faith in God that he will help you, that's what I always tell everyone.”. Emotional connections within the family are an important part of dyads experience of hope. During the COVID-19 pandemic, the patient of Dyad D was hospitalized for an extended period without any visits, causing concern about leaving his wife alone at home. His daughter, son-in-law and grandchildren stepped in to support and stay with his wife, which aided the patient in coping with his own situation, the patient said: “…that’s what gave me the most strength... my wife was alone and they [daughter, son-in-law and grandchildren] went there, it helped me stabilize 50%”. The IC of Dyad F conveyed a sense of obligation to look after his mother while his father was not present : “I have a property of my own, but when my father fell ill, I didn't want to leave my mum on her own, I moved in with my mum; because it didn't make sense... so I left my house.”. The temporal dimension of hope involves the individual's perception of time (past, present, and future) in connection to their hopes and experiences [ 1 ]. Dyads experience of hope involved hope for a better future and leveraging on past experiences to build on today’s hopes. Hoping things will get better is part of everyday life of dyads living with chronic advanced illnesses, Dyad A illustrates this: “Hope is having a future.... that things will get better in the future.”. Past experiences were considered the foundation to nurture present hopes, Dyad H, IC reflected: “It's just that as you live you learn more things, you get a different mindset, don't you? Today we are having a bad time, tomorrow we know how to deal with the situation, and I think that ends up giving us another way of looking at life, and at least I have more hope ... not everything is good and so we have to deal with things..”. Finally, the contextual dimension comprises the life circumstances that shape and constitute individual’s hope [ 1 ]. In our Dyads this was represented as being dependent on the caregiver or to medical devices. The patient of Dyad E explained at which point she was reliant on oxygen in her everyday life : “I have to have oxygen to tidy up the whole house.”. The IC in Dyad G was the wife of the patient, she was the main caregiver of his husband. She expressed how she was afraid of bathing his husband: “The bath ... of course I had to do almost everything myself, my biggest fear was that he'd get into the bathtub, and I wouldn't be able to get him out...”. Transition between T1 and T2 Two interviews were conducted at T1 and T2. The same dyads were interviewed using the same interview guide. Dyads’ characteristics and changes overtime are presented in Table 6 below. Table 6 – Dyads description and changes of their experience over time with HHI scores Dyad Context PT & IC level of hope in each Factor of the HHI T1 T1 1st interview PT & IC HHI score T1- T2 PT & IC level of hope in each Factor of the HHI T2 T2 2nd interview Mixed Methods Meta-inferences A A lot of complicity between mother and son. The mother is a patient who suffers from COPD and is waiting for a lung transplant. She has many limitations in her daily life, being dependent on O2 24h/24h. They are both evangelicals, and practice religion actively through praying and reading the Bible. PT IC Factor 1 10 16 Factor 2 15 15 Factor 3 14 15 Hope focused on lung transplantation and the possibility of living a few more years with QoL. The patient reports that the disease affects her self-esteem, namely in terms of her image. The son talks a lot about his "duty" to take care of his mother. The mother in turn does not want to be a "burden" for her son. PT 39 − 38 IC 46 − 40 PT IC Factor 1 14 13 Factor 2 12 14 Factor 3 12 13 Hope remains focused on lung transplantation. The objective of the patient is to be able to live longer, with QoL and to be with her son. In this interview the patient introduces the notion of having the feeling her life is on "stand-by" until she gets the lung. Congruent Dyad’s hope is described in the same way in both periods and is confirmed by HHI scores that are stable B A couple where the lady is the patient (ALS) and her husband is the carer. The patient has limitations in activities of daily living, is wheelchair-bound, and needs help with almost everything. She has difficulty articulating words. The husband is the main carer, he manages all the logistics surrounding his wife's illness. PT IC Factor 1 14 12 Factor 2 16 13 Factor 3 16 14 The patient feels like a happy woman and hopes to live as long as possible. The husband expresses that at the beginning of the discovery of the disease, it was difficult for him, but as time went by he got used to it and says he tries to do his "best" every day. Outdoor activities, such as going out and travelling, or being in contact with nature are important parts of this couple's well-being. PT 46–47 IC 39–45 PT IC Factor 1 16 13 Factor 2 15 16 Factor 3 16 16 The couple talked again about the moment when they found out about the disease and how difficult it was for them. They also talked about how important it is for them to get out of the house, go for walks and do activities outside the home. Congruent The dyad describes their experience focusing on the positive aspects which are reflected in the HHI scores. C This day is composed of two brothers, the younger one is the patient and the older one is the carer. The patient suffers from heart failure and obesity. The interview was very poor in content. PT IC Factor 1 11 15 Factor 2 12 13 Factor 3 11 14 The patient focuses on his experience of wanting to be healthy so that he can live and work. Sometimes the speech is contradictory and difficult to understand. The carer has not shared much about his experience, he regrets the situation of his brother saying that it is a "sad" situation of social isolation (his brother does not go out). - D Father and daughter, where the patient is the father who suffers from pulmonary fibrosis and was one of the victims of COVID in the first wave. He was offered the possibility of a transplant but the patient refused. PT IC Factor 1 14 15 Factor 2 13 14 Factor 3 13 14 Patient with a great faith in God, " those who have faith have hope". The patient talks about his experience as a COVID patient hospitalised and away from all his family. The daughter has a positive attitude towards life and promotes this attitude with everyone around her. PT 40–41 IC 43–45 PT IC Factor 1 14 15 Factor 2 13 15 Factor 3 14 15 In the second interview the experience of covid was less present and the interview was less deep than the first one. Each time hope is mentioned the connection with faith and God is very strong, especially for the patient. The daughter continues to relate how her positive attitude towards life helps to maintain hope. Congruent The dyad describes their experience concentrating on positive attitudes to face life. These findings are confirmed by the HHI scores. E Mother and son, where the mother is the patient and the youngest son is the carer. The patient suffers from chronic respiratory insufficiency. She needs O2 24h/24h and is on the waiting list for lung transplantation. PT IC Factor 1 11 14 Factor 2 14 15 Factor 3 15 15 Both elements of the dyad are strongly focused on the hope for a transplant in order to have QoL. The patient talks about her experience with the limitations imposed by the illness and how important the support of her family is. Her son talks about his experience when his mother has crises, and it is necessary to accompany her to the emergency. PT 40–48 IC 44–48 PT IC Factor 1 16 16 Factor 2 16 16 Factor 3 16 16 In the second interview their hope for transplantation is even more accentuated because the patient is moving forward in the process. Both are hoping that a donor will come as soon as possible and will be a suitable match. Congruent The possibility that the patient receives a lung transplantation is accentuated over time. The high HHI scores confirm these results. F Couple where the husband is the patient (COPD) and the wife the caregiver. The patient has some limitations in daily living activities and so does the wife. This couple has no children, the support network is limited. PT IC Factor 1 11 12 Factor 2 12 12 Factor 3 14 14 The interview is very rich in emotions. Hope is associated with faith, religion and health. Both members of the couple have health problems and have faith that one day they will be healed. The spouse regrets not having had children and talks a lot about loneliness, her eyes fill with tears when she talks about these issues. The patient demonstrates a great dependence on his wife for most of his activities. PT 37–41 IC 38–41 PT IC Factor 1 13 13 Factor 2 14 14 Factor 3 14 14 As in the first interview, in the second interview hope and faith in God are very intertwined, as well as health and hope for better days are still very present in the couple's experience. In this interview, themes such as faith and ways of demonstrating and cultivating faith are very much addressed. Current financial difficulties were also touched upon during the interview as well as the fact that they feel lonely. Divergence In the second interview, both elements of the dyad were hoping for better days, however, they described their last months as difficult, which is incongruent with HHI scores. G Couple, where the husband is the patient (pulmonary fibrosis) and the wife is the main caregiver. The patient is in the process of waiting for a lung transplant. They are a very complicit couple. PT IC Factor 1 16 15 Factor 2 15 15 Factor 3 16 14 Both members of the dyad focus on hope for a lung transplant. Both look forward to the arrival of the phone call that will change their lives and bring more QoL. The sources of hope for this couple revolve around faith, seeing their daughter grow up and being in contact with nature. PT 47 − 43 IC 44 − 35 PT IC Factor 1 13 10 Factor 2 14 14 Factor 3 16 11 In the second interview, hope remains very much focused on the transplant. The patient says that his life is on pause waiting for this transplantation that will change his life. Congruent The focus of the dyad’s hope remains the transplantation, however described with less enthusiasm. HHI scores confirm those findings. H Dyad is composed of two friends, the patient has ALS and the main caregiver is more than a person who receives a salary for the work she does, they are very complicit and friends. PT IC Factor 1 9 15 Factor 2 14 16 Factor 3 16 14 The patient focuses her hope on health (which she says she does not have), while the caregiver shows a positive attitude towards life where hope is always something positive. The patient in turn hopes that her symptoms will not worsen, and her situation will not deteriorate. The patient has part of her family living abroad and fears that if something happens her children will not be able to see her. PT 38 − 32 IC 46 − 45 PT IC Factor 1 13 10 Factor 2 14 14 Factor 3 16 11 In the second interview the patient says she has lost hope and is afraid of what might happen to her, but her family and friends help her through this difficult phase. Although saddened by the deteriorating situation, the patient says that the contact with nature helps to improve her state of mind. As for the caregiver, she maintains a positive attitude towards life and says she has an inner strength that helps her to keep hope. Congruent The experience of hope is described differently by the two members of the dyad. Patient and IC have different visions that are stable over time. PT - Patient IC - Informal caregiver Factor 1 - Inner sense of temporality and future (items 1, 2, 6 and 11) (range 4–16) Factor 2 - Inner positive readiness and expectancy (items 4, 7, 10 and 12) (range 4–16) Factor 3 - Interconnectedness with self and others (items 3, 5, 8 et 9) (range 4–16) In this joint display, a brief context of each dyad is presented as well as a description of both interviews at T1 and T2. Patient and IC overall scores of hope are presented for T1 and T2 to enable comparison. The level of hope of dyads is presented in each factor of the HHI. In the last column, we provide a comprehensive understanding of how both interviews and hope scores converge or diverge [ 46 ]. In our results, the data converge for all except Dyad F. At T2, Dyad’s F scores of hope were higher than T1 which was not reflected in the interview of T2. Themes such as loneliness, financial difficulties and loss of independence emerged extensively in the T2 interview. Both elements of the dyad were hoping for better days, however during the interview that was not the major topic of discussion, instead, they were both in a plaintive attitude towards life. Table 6 – Dyads description and changes of their experience over time with HHI scores [INSERT Table 6 HERE] PT - Patient IC - Informal caregiver Factor 1 - Inner sense of temporality and future (items 1, 2, 6 and 11) (range 4–16) Factor 2 - Inner positive readiness and expectancy (items 4, 7, 10 and 12) (range 4–16) Factor 3 - Interconnectedness with self and others (items 3, 5, 8 et 9) (range 4–16) Discussion This pilot study is one of the first mixed method study in a Portuguese context that explores the experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their IC as a dyad, evaluates hope and symptom burden and provides an expanded and more comprehensive understanding about the multidimensional phenomena of hope. Our findings suggests that hope is present in patients living with advanced chronic illness and their IC and although its presentation may differ according to the trajectory of illness, it remained constant within their life transition. Even in the context of clinical deterioration and changing goals of care, hope was always present at some level, albeit revisioned as needs and outcomes changed. This is in alignment with Buckley and Herth’s longitudinal study [ 49 ]. This is an important finding for nurses and other healthcare professionals who are in contact with patients transitioning towards palliative care. Nurses play a central role in recognizing, fostering, and supporting hope in patients with advanced chronic illness. Nurses are often at the forefront of providing care and support, and their understanding of the role of hope can significantly influence patients' experiences. Through open communication, active listening, and empathetic understanding, nurses can build trust with patients and ICs. In practice, nurses can provide compassionate support by acknowledging and respecting dyads hopes, also they can educate patients and their families about the illness trajectory and help them set realistic goals based on their changing needs and circumstances [ 7 ]. In addition, nurses can ensure effective symptom management enabling patients to maintain QoL as much as possible in this challenging phase of their lives [ 50 ]. Transition to palliative care in dyads living with advanced chronic illness is complex and difficult to determine the exact moment. It’s rather a slow movement throughout the time that is determined by moments of crisis that occasionally define one moment of transition from one state to another. For dyads living with advanced chronic illness, the granularity of a transition cannot be bonded only to changes. One living with chronic illness experience physical deterioration over time, sometimes for decades until the moment that physical and psychological symptoms take over life. The changes over time are sometimes unnoticeable, people have time to adapt and bounce back. Transition as it is defined by Meleis does not explain the granularity of the experience of dyads living with advanced chronic illness [ 51 ]. The transition expressed in this study, more than passing from one state to another, is akin to going downstairs and having to adapt to each step you descend; over time, the transition happens naturally but always towards decline. The concept of transience may be more adapted to explain transition in palliative care, as a transition as a linear movement towards a specific outcome may be erroneous in palliative care, given the fluidity of constantly changing health and risk of deterioration and death [ 52 ]. In our study, all participants were enrolled in palliative care outpatient consultations because they all had advanced chronic illnesses progressing and causing discomfortable symptoms. For some dyads, the experience of dealing with an advanced chronic illness is part of their daily life since long time (for some more than 20 years), for those patients who have been managing their chronic illness for a long time, they may have established coping mechanisms and psychological defenses to deal with their condition. In this regard, transitioning to palliative care may create negative emotions, such as fear, anxiety, or a sense of giving up. Nurses and other healthcare professionals need to navigate these emotions thoughtfully, assuring dyads feel supported and understood throughout the process. Moreover, transitioning to palliative care may involve a shift in treatment goals from curative or disease management to symptom control and QoL. For some patients accepting this change may be challenging, they may need guidance and support to align their care preferences with the goals of palliative care. Again, nurses play an essential role in facilitating discussions about goals of care, addressing concerns, and assisting patients in making informed decisions. Furthermore, transitioning to palliative care can be emotionally confronting for patients and ICs, as it may involve acknowledging limitations and facing EoL issues. Nurses must provide emotional support, empathy, and counseling to help dyads navigate intricate emotional aspects of their context. They can also facilitate referrals to specialized services such as specialized palliative care teams or psychotherapy, if needed. In addition, nurses must be aware of caregiver’s role, they may experience their own emotional and practical challenges. Nurses can provide guidance, education, and respite support to help alleviate the burden on caregivers and empower caregivers to provide optimal care. Furthermore, ICs presence and engagement in patient’s everyday life as well as cultural beliefs and attitudes shape how transitions are perceived [ 53 ]. At least four dyads referred to hope as something external to them, e.g., “hope for a lung transplant” or “hope for a donor”. This is an interesting finding because the ways healthcare professionals foster hope may shape dyads experience. It is fundamental for healthcare professionals to acknowledge the potential dangers of putting all patients' hopes in a single external factor, such as finding a donor. Although treatments or transplantation can bring hope, it is essential to maintain a balanced perspective and help patients and ICs explore alternative sources of hope. By providing comprehensive support, including emotional and psychological support, healthcare professionals can better manage expectations and navigate the complex emotional challenges that arise when hope becomes merely dependent on external factors. Besides, through effective communication, active listening, and compassionate support, healthcare professionals can help dyads develop realistic expectations and goals while maintaining a sense of hope [ 54 ]. By providing accurate information about treatment options, prognosis, and potential alternatives, healthcare professionals can help patients and ICs make informed decisions and explore hope beyond the reliance on external factors alone. The ESAS evaluation suggests that patients living with advanced chronic illness seemed to have their symptoms relatively controlled. This might be related to the fact that patients have their conditions stabilized over the years and are being followed by a palliative care hospital based team which provides them support, management and assessment of their symptoms. Additionally, the collaborative nature of palliative care involves a multidisciplinary team with different healthcare professionals who contribute to effective symptom control and facilitates comprehensive assessment, treatment planning, and ongoing monitoring of symptoms. Moreover, early palliative care interventions in advanced chronic patients could increase QoL, better symptom management and motivate the writing of advance care directives [ 55 ]. Study strengths and limitations The strength of this study was the use of dyadic interview. Although relatively unexplored as a research method, the dyadic interview was very much appreciated by all dyads. All participants were pleased that their loved ones could participate in the interview and share their points of view. Participants learned something from each other, and some difficult subjects came to the surface to be explored. The benefit of a dyadic interview over a single interview was capturing the experience through the perspective of two persons who experience the consequences of advanced chronic illness together [ 42 ]. As a method, apart from the research interest, it has the potential to inform our understanding of shared experiences in complex situations and avoids the risk of compartmentalizing a situation. Rather, it situates the challenges in the real-world experience of the patient and IC and gives voice to both in expressing and determining their needs at critical transition points in living and dying [ 42 ]. In our study, dyads expressed their contentment by having the chance to share their experience of being accompanied by their loved ones. There were some moments of tension between interviewees, however, there were also opportunities for participants to deepen their shared experience. Despite the good feedback from participants, dyadic interview adds potential bias. One could imagine that the IC or the patient may not express their full experience because of the presence of the other. The mixed methods design used, allowed for extensive qualitative exploration, with findings strengthened by thorough triangulation. Nonetheless, there are also limitations in terms of a small sample and a wider interval between T1 and T2 may have yielded more evidence of substantive change in both symptom distress and hope. However, the challenge is the high risk of attrition which poses an added challenge to research in this population [ 56 ]. Another limitation in this study was the difficulty to identify changes between T1 and T2 because the amount of time between the two moments was short. A much longer period would be required to accompany dyads experiencing advanced chronic illness. Also, an evaluation of QoL of dyads would have added more detailed information about the impact of symptoms in dyads’ everyday lives. Several ICs mentioned the burden of caring for their loved ones. The evaluation of that burden quantitatively and qualitatively would have given important information for healthcare professionals to design interventions that focus on relieving IC burden. Implications for practice While a growing number of health professionals are recognizing the significance of hope and positive thinking in the context of terminally ill patients and their families, there remains a concern among some other professionals that engaging in conversations regarding EoL care may diminish hope. There is a need for further training and practical experience in the realm of communication skills to assist healthcare professionals in striking a delicate balance between providing reliable and truthful information while also offering support to patients and their families as they navigate the process of adjusting to the inevitability of terminal illness. Since most hope-based interventions have been primarily targeted towards patients with cancer and their caregivers, there is evidence suggesting that some interventions may have positive effects in the context of many life-threatening illnesses. Conclusions The findings of our study, which involved the dynamic analysis of dyads of patients with advanced chronic illness and their ICs, show a persistent presence of hope even in the face of adversity. Providing consistent symptom management is crucial to foster hope among dyads, which contributes to better QoL and comfort for both patient and IC. Access to early palliative care in the context of chronic illness should be supported and promoted in order to follow up with patients and ICs throughout their disease trajectory and support hope for coping in challenging moments. Healthcare professionals’ communication skills should be continually updated and trained to better respond to patients’ and IC’s expectations and avoid conveying messages of hope in noxious way. Our study highlighted the importance of a shared experience within patient-caregiver dyads, emotional support and open communication were central. Finally, our study calls for continued investment in palliative care services that go beyond patient-focused symptom management and include dyads’ need for emotional and psychological support. More systemic interventions are needed to ensure a comprehensive and compassionate response to patients’ and IC’s needs. Further research is needed including dyads as a unit to better understand their dynamics and experiences. Abbreviations Patient (PT) Informal Caregiver (IC) Quality of Life (QoL) End-of-Life (EoL) Good Reporting of a Mixed Methods Study (GRAMMS) Gold Standard Framework (GSF) Herth Hope Index (HHI) Edmonton Symptom Assessment System (ESAS) Chronic Obstructive Pulmonary Disease (COPD) Amiotrofic Lateral Sclerosis (ALS) Chronic Heart Failure (CHF) Interstitial Lung Disease (ILD) Declarations Ethics approval and consent to participate The study was granted permission by the ethics committee of the Hospital da Senhora da Oliveira Guimarães (Ref: 86/2020). Informed consent was obtained from all subjects. Consent for publication Not applicable. Availability of data and materials The datasets generated during the current study are not publicly available because participants consented to participate but did not consent to sharing their data. Competing interests The authors declare that they have no competing interests. Funding This study was funded by the SEED MONEY FOR JOINT SWISS-PORTUGUESE ACADEMIC PROJECTS on behalf of HEdS Haute école de Santé Genève, Suisse – HES-SO and Instituto Politécnico de Leiria – Escola Superior de Saúde, Leiria, Portugal. This work was also supported by FCT—Fundação para a Ciência e a Tecnologia , I.P. (UIDB/05704/2020 and UIDP/05704/2020) and by the Scientific Employment Stimulus — Institutional Call — [https://doi.org/10.54499/CEECINST/00051/2018/CP1566/CT0012] Authors' contributions FBPB – is the PhD candidate and contributed to the design, data collection, analysis and writing of the present paper. MG and CF – contributed to recruitment, data collection and revision of this paper, they approved the submitted version. CL, AQ AND MAD – contributed to the design, data analysis, revision and writing of the present paper, they approved the submitted version. SP and PL – contributed to the design, revision and writing of the paper, they approved the submitted version. 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Becque YN, Rietjens JAC, van der Heide A, Witkamp E. How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study. BMC Palliat Care. 2021;20(1):162. Meleis AI. THEORETICAL NURSING Development and Progress; 2012. Larkin PJ, Dierckx de Casterle B, Schotsmans P. Towards a conceptual evaluation of transience in relation to palliative care. J Adv Nurs. 2007;59(1):86–96. Penrod J, Baney B, Loeb SJ, McGhan G, Shipley PZ. The influence of the culture of care on informal caregivers' experiences. ANS Adv Nurs Sci. 2012;35(1):64–76. Olsman E, Duggleby W, Nekolaichuk C, Willems D, Gagnon J, Kruizinga R, Leget C. Improving communication on hope in palliative care. A qualitative study of palliative care professionals' metaphors of hope: grip, source, tune, and vision. J Pain Symptom Manage. 2014;48(5):831–838e832. Tassinari D, Drudi F, Monterubbianesi MC, Stocchi L, Ferioli I, Marzaloni A, Tamburini E, Sartori S. Early Palliative Care in Advanced Oncologic and Non-Oncologic Chronic Diseases: A Systematic Review of Literature. Rev Recent Clin Trials. 2016;11(1):63–71. Jordhoy MS, Kaasa S, Fayers P, Ovreness T, Underland G, Ahlner-Elmqvist M. Challenges in palliative care research; recruitment, attrition and compliance: experience from a randomized controlled trial. Palliat Med. 1999;13(4):299–310. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 14 Aug, 2024 Read the published version in BMC Palliative Care → Version 1 posted Editorial decision: Revision requested 19 Feb, 2024 Submission checks completed at journal 16 Feb, 2024 Editor assigned by journal 16 Feb, 2024 First submitted to journal 06 Feb, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-3933532","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":273217828,"identity":"9923af17-d108-4d63-9c13-0248698c6e59","order_by":0,"name":"Filipa Baptista","email":"data:image/png;base64,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","orcid":"","institution":"Institute of Higher Education and Research in Healthcare (IUFRS), University of Lausanne, Lausanne","correspondingAuthor":true,"prefix":"","firstName":"Filipa","middleName":"","lastName":"Baptista","suffix":""},{"id":273217829,"identity":"14a290fd-45de-4a15-9ba8-544b7b303d57","order_by":1,"name":"Maria Gonçalves","email":"","orcid":"","institution":"Palliative care department, Hospital da Senhora da Oliveira, Guimarães","correspondingAuthor":false,"prefix":"","firstName":"Maria","middleName":"","lastName":"Gonçalves","suffix":""},{"id":273217830,"identity":"f5b6f38a-f50f-43a5-a8ae-bc8e64e1b9fd","order_by":2,"name":"Cláudia Fernandes","email":"","orcid":"","institution":"Palliative care department, Hospital da Senhora da Oliveira, Guimarães","correspondingAuthor":false,"prefix":"","firstName":"Cláudia","middleName":"","lastName":"Fernandes","suffix":""},{"id":273217831,"identity":"1c205bc7-d951-4255-ae1a-955db7e3fcb6","order_by":3,"name":"Carlos Laranjeira","email":"","orcid":"","institution":"School of Health Sciences, Polytechnic of Leiria, Leiria","correspondingAuthor":false,"prefix":"","firstName":"Carlos","middleName":"","lastName":"Laranjeira","suffix":""},{"id":273217832,"identity":"026aab30-bf3c-44c0-a13e-848c04a9ffd1","order_by":4,"name":"Maria dos Anjos Dixie","email":"","orcid":"","institution":"School of Health Sciences, Polytechnic of Leiria, Leiria","correspondingAuthor":false,"prefix":"","firstName":"Maria","middleName":"dos Anjos","lastName":"Dixie","suffix":""},{"id":273217833,"identity":"bf282252-0ed1-4919-8fb9-5c2f76c73fef","order_by":5,"name":"Ana Querido","email":"","orcid":"","institution":"School of Health Sciences, Polytechnic of Leiria, Leiria","correspondingAuthor":false,"prefix":"","firstName":"Ana","middleName":"","lastName":"Querido","suffix":""},{"id":273217834,"identity":"47e46168-e638-42ce-8bb1-b15be6226e38","order_by":6,"name":"Sophie Pautex","email":"","orcid":"","institution":"Department of Readaptation and Geriatrics, Palliative Medicine Division, University Hospital Geneva and University of Geneva, Geneva","correspondingAuthor":false,"prefix":"","firstName":"Sophie","middleName":"","lastName":"Pautex","suffix":""},{"id":273217835,"identity":"1bfe8395-a700-47f1-bffe-a3bbda535d43","order_by":7,"name":"Philip J Larkin","email":"","orcid":"","institution":"Chaire Kristian Gerhard Jebsen of Palliative Care Nursing, Palliative and Supportive Care Service Lausanne University Hospital and University of Lausanne, Lausanne","correspondingAuthor":false,"prefix":"","firstName":"Philip","middleName":"J","lastName":"Larkin","suffix":""},{"id":273217836,"identity":"13d103bd-078f-46a6-84b2-ed172c79b065","order_by":8,"name":"Gora da Rocha Rodrigues","email":"","orcid":"","institution":"HESAV School of Health Sciences, HES-SO University of Applied Sciences and Arts Western, Lausanne","correspondingAuthor":false,"prefix":"","firstName":"Gora","middleName":"da Rocha","lastName":"Rodrigues","suffix":""}],"badges":[],"createdAt":"2024-02-06 10:17:18","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-3933532/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-3933532/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12904-024-01528-x","type":"published","date":"2024-08-14T15:58:00+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":51389266,"identity":"325900b1-024b-4666-b461-1209778f818b","added_by":"auto","created_at":"2024-02-20 18:10:40","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":307027,"visible":true,"origin":"","legend":"\u003cp\u003eSee image above for figure legend.\u003c/p\u003e","description":"","filename":"FIGURE1BMCPALLPANDORAII1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-3933532/v1/a9d400a33fdd35d97e743cd6.jpg"},{"id":51389267,"identity":"a3aaf54b-0a08-4bae-b25d-fa5f323f2f1a","added_by":"auto","created_at":"2024-02-20 18:10:41","extension":"jpg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":198025,"visible":true,"origin":"","legend":"\u003cp\u003eSee image above for figure legend.\u003c/p\u003e","description":"","filename":"FIGURE1BMCPALLPANDORAII2.jpg","url":"https://assets-eu.researchsquare.com/files/rs-3933532/v1/a3e47f62cc8f83ca8fed758a.jpg"},{"id":51389265,"identity":"7edbd66a-ba3f-49a0-9567-4e2ea701ee0b","added_by":"auto","created_at":"2024-02-20 18:10:40","extension":"jpg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":310329,"visible":true,"origin":"","legend":"\u003cp\u003eSee image above for figure legend.\u003c/p\u003e","description":"","filename":"FIGURE1BMCPALLPANDORAII3.jpg","url":"https://assets-eu.researchsquare.com/files/rs-3933532/v1/152a2747d2b07e251a28a02e.jpg"},{"id":63071618,"identity":"9cd6f6dd-b008-4c09-9850-93bf294ec325","added_by":"auto","created_at":"2024-08-22 20:09:01","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1899503,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-3933532/v1/6eb5bd7e-e439-4d50-bf6c-150a27ecdd91.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"\u003cp\u003eThe Experience of Hope of Dyads Living with Advanced Chronic Illness in Portugal: a longitudinal mixed-methods pilot study\u003c/p\u003e","fulltext":[{"header":"Background","content":"\u003cp\u003eHope is defined by Dufault and Martocchio [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e] as \u0026ldquo; a multidimensional dynamic life force characterized by a confident yet uncertain expectation of achieving a future good which, to the hoping person, is realistically possible and personally significant\u0026rdquo; (p.380). This concept has been the object of academic study in both the arts and sciences [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e], but a conclusive definition is elusive. Evidence shows that hope is an important resource that positively influences Quality of Life (QoL) and contributes to comfort and well-being for patients and families [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. On the other hand, hopelessness is associated with the burden of symptoms like pain, anxiety, depression, fatigue, spiritual suffering, and suicidal ideation [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. When patients and families face the consequences of chronic advanced illness, they may need to reassess what hope represents to them, especially when hope for a cure is unlikely [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Yet, hope remains present even if life is threatened by near death or if no cure is possible [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. A recent systematic review and narrative synthesis exploring patients' perception of hope in palliative care highlights the significance of recognizing patients' comprehension of hope, its function, and the endeavors necessary to maintain it towards End-of-Life (EoL) [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. The authors indicate that hope functions as a valuable approach, nurturing meaningful interpersonal connections [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Furthermore, they suggest that healthcare professionals can address communication challenges of clinical practice by orchestrating hope-based interventions that involve the participation of patients' family and friends [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Even though hope is widely explored, the focus has been mostly directed toward cancer patients [\u003cspan additionalcitationids=\"CR10 CR11\" citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e] or cancer caregivers [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e, \u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e] with limited scope for translation to a chronic illness population.\u003c/p\u003e \u003cp\u003eAlthough hope has been described as a positive resource that enables patients to cope with challenging situations in the context of advanced chronic conditions, hope can also be seen as an obstacle or a barrier when patients deny or avoid their situation or when expectations are unrealistic [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. The value of hope and how hope acts as a resource to empower and help patients cope and increase their spiritual wellbeing is widely described in the literature [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAn Informal Caregiver (IC) is an individual who consistently dedicates their time, typically at least once a week, to support a family member or a loved one, of any age facing an illness or a decrease in their ability to be independent [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. This caregiver could be a spouse, parent, child, sibling, friend, or neighbor. Generally, the IC has no professional training, no working contract or monetary compensation [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. ICs are providing complex care for their loved ones [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. ICs experience feelings of fear, uncertainty, loss, separation and the trauma of imminent death when caring for and supporting patients with advanced chronic illness [\u003cspan additionalcitationids=\"CR20\" citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. Often, they are overwhelmed, at risk of poor physical and psychological outcomes, surpass their own personal limits, and become exhausted and susceptible to illness themselves [\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e]. A systematic review of 26 studies examining factors associated with hope in family caregivers of persons living with chronic illness, suggests a possible link between ICs hope and ICs over all positive health [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. Indeed the authors found that, as hope levels increase, ICs coping abilities improved, including self-efficacy and preparedness for caregiving tasks, while maladaptive coping strategies decreased the levels of hope [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. Additionally, feelings of anxiety, depression, distress, grief, and guilt were negatively associated with the level of hope experienced by ICs [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. Sociodemographic characteristics of ICs seem to be not related to hope [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eA dyad is defined as an interactive relationship between two individuals [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. Patients and ICs are usually considered separately and models of care have therefore tended to target one or other group but rarely both together [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. As a result they have limited focus and fail to capture the factors which inhibit or enhance the reality of care [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. Furthermore, the way in which patients and ICs co-produce their experience of illness is hardly explored in the literature [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. A cross sectional study of dyads of hemodialysis patients and their family caregivers, showed that hope scores for each person were indicative of their own higher QoL scores [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. Hope was measured using the Herth Hope Index (HHI) and QoL by the World Health Organization Quality of Life - BREF (WHOQOL-BREF) [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. Patients\u0026rsquo; hope scores were associated with improved QoL in the environmental domain for family caregivers [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. Thus, to improve QoL, clinicians should target not only the patient but also their ICs, because of the reciprocal influence. A recent systematic review of the literature on factors associated with hope in family caregivers of people living with life-limiting illness found that ICs\u0026rsquo; physical and mental health, as well as the care recipients\u0026rsquo; self-efficacy and hope were positively associated with ICs hope. Conversely, caregivers' hope was negatively associated with indicators of poor mental health, such as anxiety, depression, distress, and feelings of grief and loss [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eFew studies have focused on dyads\u0026rsquo; experience of hope when dealing with chronic illness [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan additionalcitationids=\"CR26 CR27\" citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e], in particular for patients with non-oncological illnesses [\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. As part of a multicenter longitudinal mixed-methods study of dyads of patients with chronic obstructive pulmonary disease and their ICs [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e], this pilot study provided a valuable foundation for refining the methodology of our current research [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. Working at a dyadic level enables a relationship-based understanding of dyadic behaviours and coping strategies to emerge, thus managing illness that affects both, patients and ICs health and well-being [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. Palliative care must emphasize healthy transitions, which generates opportunities for healthcare professionals to assist dyads according to their needs [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. This encompasses focusing on facilitating smooth transitions for both the patient and their ICs, ensuring that the care provided not only addresses the patient's needs but also supports and assists the IC in coping with their responsibilities [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. Such an approach aligns with Meleis' theory by recognizing the interconnectedness between the patient and their IC, emphasizing the need to offer tailored support to both individuals within the dyad [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. This can include personalized care plans, psychological support, education, and resources aimed at addressing the unique challenges and requirements of the dyadic relationship, ultimately contributing to a more effective and holistic palliative care experience [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe aims of this pilot study were a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illnesses and their ICs, and b) to evaluate variations of hope and symptom burden across time in dyads. We hope this study provides an expanded and more comprehensive understanding of the multidimensional phenomena of hope in dyads.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eA longitudinal mixed-methods study with a convergent design was conducted [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e].To gain a deeper understanding of transitional patterns of hope focused on dyadic experience over time, data were collected through semi structured dyadic interviews and a survey at two time points (T1 \u0026ndash; baseline and T2\u0026ndash;4 months after baseline). The merits of this method lie in its capacity to flexibly assess the interplay between time and context in a non-linear manner [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e, \u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThis study was conducted between December 2020 and April 2021 in a 485-bed public hospital in the north of Portugal, and adheres to the recommendations for Good Reporting of a Mixed Methods Study (GRAMMS) [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e].\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eSetting and sample recruitment\u003c/h2\u003e \u003cp\u003e The study took place in the palliative care outpatient clinic in a public hospital in Portugal. Participants were purposively selected by the hospital based palliative care consultation team and research team together. The population consisted of patients with non-cancer life-limiting illness (advanced/incurable chronic illness) and/or limited life expectancy (according to Prognostic Indicator Guidance from the Gold Standard Framework (GSF) [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]) and their ICs. ICs were identified by the patient as the person most involved in care and support (emotional or physical support). We based the inclusion criteria on the specific clinical indicators related to organ failure trajectories described in the GSF framework [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]. Participant\u0026rsquo;s inclusion and exclusion criteria are presented in Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eEligibility criteria of participants\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eInclusion criteria\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eExclusion criteria\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1. Patient or informal caregiver sufficiently literate in Portuguese language to understand written information or follow an interview\u003c/p\u003e \u003cp\u003e2. Adult patient diagnosed with non-cancer conditions [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]:\u003c/p\u003e \u003cp\u003e- severe chronic lung diseases or\u003c/p\u003e \u003cp\u003e- chronic heart failure or\u003c/p\u003e \u003cp\u003e- chronic kidney disease or\u003c/p\u003e \u003cp\u003e- stroke with severe functional impairment or\u003c/p\u003e \u003cp\u003e- chronic liver disease or\u003c/p\u003e \u003cp\u003e- motor neurone disease with marked rapid decline in physical status or\u003c/p\u003e \u003cp\u003e- multiple sclerosis with major complex symptoms or\u003c/p\u003e \u003cp\u003e- HIV/AIDS\u003c/p\u003e \u003cp\u003e3. Patient whose general health status is suitable for participation in the study based on a clinical judgement of the clinical team\u003c/p\u003e \u003cp\u003e4. Clinician advice based on the negative answer to the \u0026ldquo;surprise question\u0026rdquo;: \u0026ldquo;Would you be surprised if this patient died in the next 12 months?\u0026rdquo; [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e1. Patient with an anticipated prognosis of less than three months\u003c/p\u003e \u003cp\u003e2. Patient is diagnosed with active cancer, receiving curative or palliative cancer therapies\u003c/p\u003e \u003cp\u003e3. Cognitive impairments were screened using the Portuguese version of the Short Portable Mental Status Questionnaire (SPMSQ) (\u0026ge;\u0026thinsp;6 errors) [\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e]\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eData collection\u003c/h2\u003e \u003cp\u003eData collection was undertaken by two registered nurses; FBPB, a doctoral student and clinical nurse specialist in palliative care with a master\u0026rsquo;s in nursing sciences; and, CF, a clinical nurse specialist in palliative care with a master\u0026rsquo;s degree in palliative care, both trained in qualitative interviewing. Neither had prior contact with the patients and/or the ICs. CF, working in the hospital based palliative care consultation team, was responsible for identifying eligible patients with MG, the head-physician of the palliative care team. Once eligible participants were identified, researchers would present the study to them and give them at least 24 hours to decide if they wanted to participate or not. Following informed consent, the research team called participants and set an appointment at the palliative care outpatient clinic where T1 data collection would take place. Participants were given the choice of the place of the interview and data collection; all preferred to meet the research team at the hospital.\u003c/p\u003e \u003cp\u003e The study was granted permission by the ethics committee of the hospital in which data collection took place (Ref: 86/2020). All dyads included in the study received a participant information letter. Written formal consent was obtained before any data collection.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eInstruments\u003c/h2\u003e \u003cp\u003e \u003cdiv class=\"BlockQuote\"\u003e \u003cp\u003eQuantitative data collection involved three parts:\u003c/p\u003e \u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003col\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e Sociodemographic and clinical data from the patient\u0026rsquo;s chart included the following variables: age (years); marital status (single/married/divorced); education (1st, 2nd, 3rd cycles, secondary and higher education); professional situation (employed, retired, sick leave); religious beliefs; Medical diagnosis; Date of diagnosis (years).\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e Portuguese version of the Herth Hope Index (HHI) [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e, \u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e]. The HHI is a reliable instrument to measure the level of hope in patients with life-limiting illnesses and ICs. The HHI is a 12-item, four-point Likert scale with a possible score ranging between 12 and 48 with higher scores indicating higher levels of hope [\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e]. Given the scale performs differently among patients and caregivers, we opted to use the original structure composed of 12 items distributed in 3 factors [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. Factor 1 is related to the person\u0026rsquo;s inner sense of temporality and future (items 1, 2, 6 and 11) (range: 4\u0026ndash;16), Factor 2 concerns one\u0026rsquo;s inner positive readiness and expectancy (items 4, 7, 10 and 12) (range: 4\u0026ndash;16), and, finally, Factor 3 is about the interconnectedness with self and others (items 3, 5, 8 et 9) (range: 4\u0026ndash;16). The Cronbach\u0026rsquo;s alpha of the original version of HHI was 0.97 [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. Two items of this scale are reversed (items 3 and 6) to counteract response bias [\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e].\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003cspan\u003e \u003cli\u003e \u003cp\u003e Edmonton Symptom Assessment System\u0026mdash;ESAS [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e]. The ESAS is a 9-item patient rated symptoms (Pain, Fatigue, Nausea, Depression, Anxiety, Drowsiness, Appetite, Well-being, Shortness of breath) scale and a numerical rating for symptom severity (0\u0026ndash;10) [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. The total scores range from 0 to 90 and higher scores indicate greater symptom burden [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e].\u003c/p\u003e \u003c/li\u003e \u003c/span\u003e \u003c/ol\u003e \u003c/p\u003e \u003cp\u003eICs only completed the HHI. Each participant completed the questionnaires separately in the presence of one of the research members. The reliability of the instrument reveals good indicators.\u003c/p\u003e \u003cp\u003eQualitative data was obtained using a semi-structured dyadic interview guide developed by the authors. Dyadic interviews recognise the interdependence between individuals, involving one interviewer and two interviewees interviewed together [\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e]. The semi-structured interview guide was developed to capture the essence of the dyad experience of hope, inspired by the six dimension Model of Hope by Dufault \u0026amp; Martocchio [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. The interview guide was revised and validated by a committee of experts in health related qualitative method studies (GDRR, AQ, CL and PL). The content of the finalized semi-structured interview guide is presented in Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSemi-structured interview guide based on conceptual dimensions of hope proposed by Dufault \u0026amp; Martocchio [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eConceptual base\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eQuestions\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDefinition of the concept of hope\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhen I speak to you about the word hope, what are the first thoughts that come to your mind?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eContextual\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eGiven the situation at the moment, what makes you hopeful person?\u003c/p\u003e \u003cp\u003eWhat is the meaning/significance of your life?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCognitive\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIf you had to tell someone what it takes to have hope, what would you tell them?\u003c/p\u003e \u003cp\u003eCan you identify a source of hope for you? What gives or takes away your hope?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAfective\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIn light of the situation you are experiencing, how do you maintain hope? (emotions/feelings, doubts...)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAfiliative\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIn what way do others (family, friends, luck, fate, God) influence your hope? How do they help you to keep your hope alive?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eBehavioural\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWhat do you hope for in your life (goals/motivations)? Do you have plans? (Tell me about ...)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTemporal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIn which way has time changed your experience of hope?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eProcedures\u003c/h2\u003e \u003cp\u003eQualitative and quantitative data were collected at the same time at two points in time (T1 \u0026ndash; baseline, and T2\u0026ndash;4 months after baseline). Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e shows the schedule of the assessments and the interviews.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSchedule of assessments and interviews\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eT1 Baseline\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eT2 (4 months after T1)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\" morerows=\"1\" rowspan=\"2\"\u003e \u003cp\u003eDyads\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMeasures\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSocio-demographic and clinical data\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHHI\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eESAS (only for patients)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSemi-structured interviews\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eX\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eInterviewers audiotaped the interviews and took field notes to ensure accuracy and veracity as well as offering opportunities for reflection on and after the process. A total of 15 interviews were conducted. The duration of interviews lasted 27 minutes on average (ranging from 15 to 45 minutes).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cp\u003eQuantitative data was analysed using STATA\u0026reg; 14.2 version. Descriptive statistics (frequencies, percentages, range, means\u0026thinsp;\u0026plusmn;\u0026thinsp;standard deviation) were used to depict the sample over time (T1 and T2).\u003c/p\u003e \u003cp\u003eDyadic semi structured interviews were transcribed verbatim and analysis was conducted following a codebook thematic analysis approach as described by Braun \u0026amp; Clarke [\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e]. Thematic analysis was chosen because of his flexibility and adaptability to pragmatic approaches. Furthermore, thematic analysis offers a transparent and systematic process for data analysis, with clear steps for a rigorous analysis [\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e]. From a social constructivist perspective, reality is seen as a socially constructed and subjective, meaning is co-constructed through interactions [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e]. The ontological and epistemological assumptions of thematic analysis align with the aim of our study as we wanted to explore the dyadic subjective experience of hope and understand the socially constructed nature of meaning [\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eBefore starting the analysis, recordings of each interview were listened to, and notes were taken. A brief description of the context of the interview was also written. The model of Hope of Dufault and Martocchio and inductive and deductive reasoning were used to interpret the experience of dyads [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. We started with the six dimensions of hope from the model of Hope of Dufault and Martocchio as initial codes. The first two interviews were coded by FBPB, GDRR, AQ and CL separately. After that the researchers meet to combine the analysis, discuss, and agree on codes and themes. After having a structure of themes and codes, FBPB continued the analysis and meet regularly with GDRR, AQ and CL to validate the analysis. Finally, themes were defined and named, and those definitions were reviewed by all members of the research team. Interviews were analysed in their original language and then themes, and sub-themes were translated into English. WebQDA software\u0026reg; was used to analyse and store data.\u003c/p\u003e \u003cp\u003eAfter analyzing the questionnaires and interview data, the data were merged and reported using both the Dufault and Martocchio model of Hope and the middle-range transitions theory of Afaf Meleis helped to identify the patterns of transition of dyads living with advanced chronic illness. We present Dyad\u0026rsquo;s Constructs of Hope, which represent the definition of hope of dyads within the context of advanced chronic illness. Additionally, we present a descriptive analysis of dyads experience of hope in which the model of Hope of Dufault and Martocchio served as a blueprint. Finally, in a joint display we present a description of each interviewed Dyad\u0026rsquo;s and the changes in their experience over time combined with HHI results. In the joint display we present when data converge or diverge.\u003c/p\u003e \u003cp\u003eConvergence occurs when qualitative and quantitative data corroborate or complement each other, providing a unified understanding or explanation of the research question. For instance, if qualitative interviews reveal a certain trend and quantitative results confirm the same trend, it demonstrates convergence between the two data sets, enhancing the overall validity and reliability of the study. On the other hand, divergence represents inconsistencies between qualitative and quantitative findings. Divergence highlights contrasting results which offer opportunities to explore discrepancies, understand nuanced aspects, or identify limitations within the study. Divergence does not necessarily imply conflict or contradiction; rather, it can offer valuable insights into the complexity of the experience of hope of dyads [\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eTrustworthiness\u003c/h2\u003e \u003cp\u003eTo ensure \u003cem\u003etrustworthiness and credibility\u003c/em\u003e, two members of the team independently analysed the verbatims (FBPB and GDRR) and then confirmed the results with other members of the team (PL, AQ, CF, SP)[\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e]. A codebook based on the six dimensions of hope was developed with additional themes added as they arose from the data and subsequently, validated by the other team members. Comprehensive field notes were taken overtime to ensure \u003cem\u003etransferability\u003c/em\u003e [\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e]. Longitudinal qualitative data is complex to analyze. As two sets of data were collected at two points in time, the aim was to grasp the changes over time, rather than a snapshot in time, common to most qualitative studies [\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e]. \u003cem\u003eConfirmability\u003c/em\u003e was guaranteed using triangulation (investigator, methods and theory), multiple researchers collected data and different theoretical perspectives were used to analyse the data, as well as different methodologies were used to approach the problem [\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e]. The thematic analysis, member-checking, and presentation of reports were repeated at T1 and T2.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eParticipant\u0026rsquo;s background\u003c/h2\u003e \u003cp\u003eA total of eight dyads completed baseline measures. Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e shows participants\u0026rsquo; sociodemographic and clinical characteristics. Most of the dyads were in a close family relationship to the patient and the age ratio between the patient and the IC varied depending on the status of that relation (i.e, married couples tended to be closer in age than parent-child dyads). One patient (Dyad H), although married, received their main caregiving from friends. Patients presented with a range of chronic life-limiting illnesses conducive to the need for ongoing complex care and support. With one exception, all dyads completed T1 and T2 data collection. Drop out of Dyad C was due to deterioration in health and inability to complete instruments and follow an interview at T2.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eParticipants\u0026rsquo; sociodemographic and clinical characteristics.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"9\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c9\" colnum=\"9\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDyad\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eA\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eC\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003eD\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003eE\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003eF\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\"\u003e \u003cp\u003eG\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c9\"\u003e \u003cp\u003eH\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eParticipants\u003c/p\u003e \u003cp\u003e(N\u0026thinsp;=\u0026thinsp;8 dyads)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMother (PT) and son\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eWife (PT) and husband\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eBrothers\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eFather (PT) and daughter\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eMother (PT) and son\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eHusband (PT) and wife\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eHusband (PT) and wife\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eFriends\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePatient diagnostic\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCOPD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eALS\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eCHF\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eILD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003echronic respiratory failure\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCOPD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003ePulmonary fibrosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eALS\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDate of diagnosis\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2010\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2009\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2011\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e2017\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e2000\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e2001\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e2000\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1997\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMarital status\u003c/p\u003e \u003cp\u003ePatient\u003c/p\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDivorced\u003c/p\u003e \u003cp\u003eSingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSingle\u003c/p\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003cp\u003eSingle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eMarried\u003c/p\u003e \u003cp\u003eMarried\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePatient age\u003c/p\u003e \u003cp\u003e(58.88\u0026thinsp;\u0026plusmn;\u0026thinsp;9.46)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e58\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e68\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e46\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e61\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e52\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e70\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e48\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e68\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIC age\u003c/p\u003e \u003cp\u003e(44.62\u0026thinsp;\u0026plusmn;\u0026thinsp;19.96)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e69\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e43\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e35\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e20\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e74\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e49\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e47\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eProfessional situation\u003c/p\u003e \u003cp\u003ePatient\u003c/p\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eretired\u003c/p\u003e \u003cp\u003eemployed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eretired\u003c/p\u003e \u003cp\u003eretired\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eSick leave\u003c/p\u003e \u003cp\u003eemployed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eretired\u003c/p\u003e \u003cp\u003eemployed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eretired\u003c/p\u003e \u003cp\u003eemployed\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eretired\u003c/p\u003e \u003cp\u003eretired\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eretired\u003c/p\u003e \u003cp\u003eretired\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eretired\u003c/p\u003e \u003cp\u003eemployed\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eReligion\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eEvangelical Protestantism\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eCatholic\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eCatholic\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eCatholic\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eCatholic\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eCatholic\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eCatholic\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003eCatholic\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLevel of education Patient\u003c/p\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3rd cycle Secondary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e1st cycle 1st cycle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1st cycle 3rd cycle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e1st cycle Secondary\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e1st cycle 3rd cycle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e1st cycle 1st cycle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e3rd cycle 1st cycle\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e1st cycle 3rd cycle\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNumber of interviews\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c9\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eCOPD - Chronic obstructive pulmonary disease\u003c/p\u003e \u003cp\u003eALS - Amyotrophic lateral sclerosis\u003c/p\u003e \u003cp\u003eCHF - Chronic heart failure\u003c/p\u003e \u003cp\u003eILD - Interstitial lung disease\u003c/p\u003e \u003cp\u003eThe patient is presented with the acronym \u0026ldquo;PT\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eVariations of Hope over time\u003c/h2\u003e \u003cp\u003eOverall, subdimensions of hope were stable across time (see Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). However, in some cases a strong variation between T1 and T2 can be observed. The patient of Dyad A had a relatively low score in Factor 1 at T1, while at T2 this increased. Yet, Factor 2 and Factor 3 had high values at T1 and decreased at T2. At the same time, the IC of Dyad A remained stable between T1 and T2.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003e[INSERT FIGURE \u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e HERE]\u003c/p\u003e \u003cp\u003eFigure \u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e Shows Dyads levels of hope in each subdimension of the HHI at T1 and T2.\u003c/p\u003e \u003cp\u003eICs - Informal caregivers\u003c/p\u003e \u003cp\u003eFactor 1 - Inner sense of temporality and future (items 1, 2, 6 and 11) (range 4\u0026ndash;16)\u003c/p\u003e \u003cp\u003eFactor 2 - Inner positive readiness and expectancy (items 4, 7, 10 and 12) (range 4\u0026ndash;16)\u003c/p\u003e \u003cp\u003eFactor 3 - Interconnectedness with self and others (items 3, 5, 8 et 9) (range 4\u0026ndash;16)\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eGlobal scores of Hope and Symptom burden over time\u003c/h2\u003e \u003cp\u003eParticipant\u0026rsquo;s scores of hope were stable over time (see Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e). Patients had higher scores of hope at T2 while ICs results were constant. Symptom burden scores were higher at T2 when compared to T1.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDyads HHI and ESAS scores.\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"7\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colspan=\"3\" nameend=\"c4\" namest=\"c2\"\u003e \u003cp\u003eT1\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colspan=\"3\" nameend=\"c7\" namest=\"c5\"\u003e \u003cp\u003eT2\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDyad\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePatient ESAS score\u003c/p\u003e \u003cp\u003e(20.13\u0026thinsp;\u0026plusmn;\u0026thinsp;12.30)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePatient HHI score\u003c/p\u003e \u003cp\u003e(40.13\u0026thinsp;\u0026plusmn;\u0026thinsp;4.39)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eIC HHI\u003c/p\u003e \u003cp\u003escore\u003c/p\u003e \u003cp\u003e(42.75\u0026thinsp;\u0026plusmn;\u0026thinsp;2.96)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePatient ESAS score\u003c/p\u003e \u003cp\u003e(26.00\u0026thinsp;\u0026plusmn;\u0026thinsp;15.26)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePatient HHI score\u003c/p\u003e \u003cp\u003e(41.43\u0026thinsp;\u0026plusmn;\u0026thinsp;5.44)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eIC HHI\u003c/p\u003e \u003cp\u003escore\u003c/p\u003e \u003cp\u003e(42.71\u0026thinsp;\u0026plusmn;\u0026thinsp;4.35)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e45\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e39\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e46\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e47\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e38\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e40\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e46\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e39\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e47\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e45\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e18\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e34\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e42\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003eDrop out\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003eDrop out\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eDrop out\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e40\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e43\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e36\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e41\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e45\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eE\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e21\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e40\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e44\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e48\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e48\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eF\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e23\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e37\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e38\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e22\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e41\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e41\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eG\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e47\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e44\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e19\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e43\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e35\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eH\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e26\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e38\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e46\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e40\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e32\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003e45\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eESAS - Edmonton Symptom Assessment System\u003c/p\u003e \u003cp\u003eHHI \u0026ndash; Herth Hope Index\u003c/p\u003e \u003cp\u003eIC - Informal Caregiver\u003c/p\u003e \u003cp\u003eAlthough most patients presented similar ESAS scores at T1 and T2, some (notably patients D \u0026amp; H) showed changes in self-estimated symptom burden between T1 and T2 which was considered unsurprising given the nature of their evolving illness.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eDyad\u0026rsquo;s Constructs of Hope\u003c/h2\u003e \u003cp\u003e[INSERT FIGURE \u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e HERE]\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eFigure \u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e Dyad\u0026rsquo;s Constructs of Hope\u003c/p\u003e \u003cp\u003eFrom the perspective of Dyads, hope is living one day at the time, to have inner strength/force, and to be in good health. They described \"to live\" as having QoL, new opportunities (treatment/future/things to get better) and living one day at a time.\u003c/p\u003e \u003cp\u003eDyad F, Patient, T1: \u0026ldquo;If one has hope has will to live.\u0026rdquo;\u003c/p\u003e \u003cp\u003eDyads describe this \u0026ldquo;force\u0026rdquo; as an internal resource, like something they have \u0026ldquo;inside\u0026rdquo; themselves.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eLiving one day at the time\u003c/h2\u003e \u003cp\u003eFor dyads the construct of hope is associated with life. To live is having QoL, new opportunities and living one day at the time. For participants, QoL seems to have a \"normal\" life and being healthy to live without restrictions.\u003c/p\u003e \u003cp\u003eDyad A, Patient, T2: \u0026ldquo;Hope is to have more quality of life, to have quality of life, to be able to live normally, to be able to have a healthy life, to be able to go out, to be able to socialize...\u0026rdquo;.\u003c/p\u003e \u003cp\u003eNew opportunities were associated with possibilities, this could include receiving a transplant or having a miraculous treatment. This seemed to be related with how healthcare professionals suggest those treatments.\u003c/p\u003e \u003cp\u003eDyad G, Patient, T1: \u0026ldquo;[Hope] It's very simple, it's a [lung] transplant. .... It's the only thing.\u0026rdquo;\u003c/p\u003e \u003cp\u003eDyad G, IC, T1: \u0026ldquo;Everything is focused on this situation [the possibility of a transplantation]. Then we can go for a walk, hold hands, have coffee, have a romantic date...\u0026rdquo;\u003c/p\u003e \u003cp\u003eLiving one day at the time, was expressed as making no plans and living every day to the fullest possible extent.\u003c/p\u003e \u003cp\u003eDyad D, IC, T1: \u0026ldquo;I don't have any plans, because there's no point in making plans, it's better to live day by day intensely and one day at a time, nothing more than that.\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eTo have inner force/strength\u003c/h2\u003e \u003cp\u003eHope is also associated with a \"force\", expressed as a will to live or a force that comes \"from inside\". This force is needed to face the evolution of the illness for the dyad. While sometimes this inner \"force\" had to be actively developed to face the consequences of the illness, other times remains elusive which represents more difficult to activate this personal resource.\u003c/p\u003e \u003cp\u003eDyad B, IC, T1: \u0026ldquo;But I am the one who has to create strength to face what I have...\u0026rdquo;\u003c/p\u003e \u003cp\u003eDyad H, Patient, T1: \u0026ldquo;What keeps me hopeful is to be strong, to make myself strong and to keep myself in the best way so that my husband doesn't feel sad.\u0026rdquo;\u003c/p\u003e \u003cp\u003eDyad H, IC, T2: \u0026ldquo;I think I have a strength that I don't know where it comes from\u0026hellip;\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eTo be in good health\u003c/h2\u003e \u003cp\u003eHope also means being healthy and the absence of a healthy state might induce a threat to hope.\u003c/p\u003e \u003cp\u003eDyad H, Patient, T1: \u0026ldquo;To me what comes to mind...hope\u0026hellip;, is health, which is what I lack\u0026hellip;\u0026rdquo;\u003c/p\u003e \u003cp\u003eDyad F, IC, T1: \u0026ldquo;Hoping we'll be healthy, living more or less well for me is this.\u0026rdquo;\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eModel of hope \u0026ndash; descriptive analysis of dyads experience of hope\u003c/h2\u003e \u003cp\u003eFigure \u003cspan refid=\"Fig3\" class=\"InternalRef\"\u003e3\u003c/span\u003e shows a descriptive analysis of the dyads\u0026rsquo; experience of hope. The model of Hope from Dufault and Martocchio [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e] was used to describe each dimension.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003e[INSERT FIGURE \u003cspan refid=\"Fig3\" class=\"InternalRef\"\u003e3\u003c/span\u003e HERE]\u003c/p\u003e \u003cp\u003eFigure \u003cspan refid=\"Fig3\" class=\"InternalRef\"\u003e3\u003c/span\u003e \u0026ndash; Dyads experience of hope\u003c/p\u003e \u003cp\u003eThe \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eaffective dimension\u003c/span\u003e includes sensations and emotions [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. In our study we found that dyads tended to feel a large range of emotions over time. This includes feelings of fear, sadness, happiness and anxiety. Dyad E in her first interview talked about the anxiety of waiting:\u003c/p\u003e \u003cp\u003e\u0026ldquo;Sometimes it's a bit of anxiety, waiting\u0026hellip;, sometimes it's difficult. You're always... anxious, always waiting for something to happen [waiting for the transplant]\u0026rdquo;.\u003c/p\u003e \u003cp\u003eDyad B expressed their happiness in small things like going for a walk or enjoying a meal in a restaurant despite all limitations :\u003c/p\u003e \u003cp\u003e\u0026ldquo;I think like this, I'm happy, I live day to day...I still go for a walk now with my husband, I even go to the restaurant.\u0026rdquo;.\u003c/p\u003e \u003cp\u003eThe \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003ecognitive dimension\u003c/span\u003e comprises the wishes and dreams of dyads, the facilitators and barriers to the maintenance of hope [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Dyads\u0026rsquo; most common dreams were related to their family and offspring. Dyad G wished to see their daughter going to university: \"[Dreams] It's seeing my daughter go to university.\" Dyad E wanted to meet their grandchildren and be there for their children in special events like their wedding: \" The plans I have are to meet my grandchildren and take my children to the aisle\".\u003c/p\u003e \u003cp\u003eDyads\u0026rsquo; facilitators of hope were expressed through getting good news. The patient of Dyad E was told by her pulmonologist that she meets the criteria for a lung transplant :\u003c/p\u003e \u003cp\u003e\u0026ldquo;When my doctor said that my salvation was the transplant, then everything improved .... It changed my life completely, when the doctor told me, I was very happy...\u0026rdquo;.\u003c/p\u003e \u003cp\u003eFactors that hindered dyads experience of hope were commonly bad news, patient of Dyad H shared : \u0026ldquo;What takes my hope away? Oh I don't know... if I get some not so good news.\u0026rdquo;.\u003c/p\u003e \u003cp\u003eThe \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003ebehavioural dimension\u003c/span\u003e of hope encompasses the action-oriented approach individuals take towards their desired outcomes, spanning psychological, physical, social, and religious domains [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. In the psychological sub-domain we found dyads actively want to hope a lung transplant will save them; for example, Patient of Dyad A expressed : \u0026ldquo;\u0026hellip;because I don't know if I'll get it [the transplant] but I have to believe in something\u0026rdquo;.\u003c/p\u003e \u003cp\u003eIn the physical sub-domain, keeping active and being in contact with nature were actions taken by dyads that helped to maintain hope. Patient of Dyad E stated:\u003c/p\u003e \u003cp\u003e\u0026ldquo;One thing that I have, that keeps me more in faith, more hopeful, for example, when I have those negative thoughts, I come outside to the garden and spend time with the plants and it's therapy for me.\u0026rdquo;.\u003c/p\u003e \u003cp\u003eIn the social sub-domain, some dyads reflected on their attitude of isolation towards society or even their loved ones; the brother of the patient in Dyad C expresses sadness over their brother not leaving the house and not putting in effort to lose weight. He emphasized that his brother needs to take responsibility for their own actions and that nobody else can do it for him. Both convey a sense of hopelessness. The IC described his brother as essentially present but not truly living life, likening them to a \"dead person standing there.\". The IC of Dyad C shared:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eIt's sad, it's sad, of course, he doesn't leave the house and he could make a bit of an effort to lose weight. He's the one who has to do it for himself, nobody else can do it, otherwise, he's just a person who's there as if he wasn't there. He's a dead person standing there. Patient: It's exactly like that.\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe religious sub-domain reflects actions like prayer and attending Mass which involves reconnecting with one's faith and spiritual practice. This is represented by the IC of Dyad F :\u003c/p\u003e \u003cp\u003e\u0026ldquo;I like going to Mass, I like praying, a lot\u0026hellip; I pray in the morning. I get up and start praying straight away.\u0026rdquo;.\u003c/p\u003e \u003cp\u003eThe \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003eaffiliative dimension\u003c/span\u003e encompasses a sense of connection beyond oneself, involving social interaction, mutual support, attachment, and the acknowledgement that others can significantly impact an individual's hopes [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. In this dimension, dyads\u0026rsquo; experience of hope was expressed as being in connection with others, being compassionate, being spiritual/religious, having an emotional connection and feeling an obligation to care. Being in connection with others involved receiving support from friends, Dyad G IC illustrates this :\u003c/p\u003e \u003cp\u003e\u0026ldquo;When you need it most, they're always there, you need something and they're always ready, we live in a village, and there are very few public transport options, if I need something I call my brother-in-law or a friend, they're always ready.\u0026rdquo;.\u003c/p\u003e \u003cp\u003eBeing compassionate with others was part of the experience of hope of Dyad A. The patient spends most of her time at home, she is not capable of going out often due to the fact that her building doesn\u0026rsquo;t have elevator, however, she is the main support of a friend who needs comfort, during the interview she stated :\u003c/p\u003e \u003cp\u003e\u0026ldquo;Every day I send her a message of encouragement, every day I send her a Good Night message in the evening, a Good Morning message to make sure she wakes up better.\u0026rdquo;.\u003c/p\u003e \u003cp\u003eBeing religious or spiritual is part of the experience of hope. The words \"God,\" \"hope,\" and \"faith\" frequently coexist in the same sentence. Dyad F IC said: \u0026ldquo;Have hope! Have faith in God that he will help you, that's what I always tell everyone.\u0026rdquo;.\u003c/p\u003e \u003cp\u003eEmotional connections within the family are an important part of dyads experience of hope. During the COVID-19 pandemic, the patient of Dyad D was hospitalized for an extended period without any visits, causing concern about leaving his wife alone at home. His daughter, son-in-law and grandchildren stepped in to support and stay with his wife, which aided the patient in coping with his own situation, the patient said:\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u0026hellip;that\u0026rsquo;s what gave me the most strength... my wife was alone and they [daughter, son-in-law and grandchildren] went there, it helped me stabilize 50%\u0026rdquo;.\u003c/p\u003e \u003cp\u003eThe IC of Dyad F conveyed a sense of obligation to look after his mother while his father was not present :\u003c/p\u003e \u003cp\u003e\u0026ldquo;I have a property of my own, but when my father fell ill, I didn't want to leave my mum on her own, I moved in with my mum; because it didn't make sense... so I left my house.\u0026rdquo;.\u003c/p\u003e \u003cp\u003eThe \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003etemporal dimension\u003c/span\u003e of hope involves the individual's perception of time (past, present, and future) in connection to their hopes and experiences [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Dyads experience of hope involved hope for a better future and leveraging on past experiences to build on today\u0026rsquo;s hopes. Hoping things will get better is part of everyday life of dyads living with chronic advanced illnesses, Dyad A illustrates this: \u0026ldquo;Hope is having a future.... that things will get better in the future.\u0026rdquo;.\u003c/p\u003e \u003cp\u003ePast experiences were considered the foundation to nurture present hopes, Dyad H, IC reflected:\u003c/p\u003e \u003cp\u003e\u0026ldquo;It's just that as you live you learn more things, you get a different mindset, don't you? Today we are having a bad time, tomorrow we know how to deal with the situation, and I think that ends up giving us another way of looking at life, and at least I have more hope ... not everything is good and so we have to deal with things..\u0026rdquo;.\u003c/p\u003e \u003cp\u003eFinally, the \u003cspan type=\"Underline\" class=\"Underline\" name=\"Emphasis\"\u003econtextual dimension\u003c/span\u003e comprises the life circumstances that shape and constitute individual\u0026rsquo;s hope [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. In our Dyads this was represented as being dependent on the caregiver or to medical devices. The patient of Dyad E explained at which point she was reliant on oxygen in her everyday life : \u0026ldquo;I have to have oxygen to tidy up the whole house.\u0026rdquo;.\u003c/p\u003e \u003cp\u003eThe IC in Dyad G was the wife of the patient, she was the main caregiver of his husband. She expressed how she was afraid of bathing his husband:\u003c/p\u003e \u003cp\u003e\u0026ldquo;The bath ... of course I had to do almost everything myself, my biggest fear was that he'd get into the bathtub, and I wouldn't be able to get him out...\u0026rdquo;.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eTransition between T1 and T2\u003c/h2\u003e \u003cp\u003eTwo interviews were conducted at T1 and T2. The same dyads were interviewed using the same interview guide. Dyads\u0026rsquo; characteristics and changes overtime are presented in Table\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e below.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab6\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 6\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003e\u0026ndash; Dyads description and changes of their experience over time with HHI scores\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"8\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c5\" colnum=\"5\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c6\" colnum=\"6\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c7\" colnum=\"7\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c8\" colnum=\"8\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDyad\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eContext\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003ePT \u0026amp; IC\u003c/p\u003e \u003cp\u003elevel of hope in each Factor of the HHI\u003c/p\u003e \u003cp\u003eT1\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e \u003cp\u003eT1\u003c/p\u003e \u003cp\u003e1st interview\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c5\"\u003e \u003cp\u003ePT \u0026amp; IC\u003c/p\u003e \u003cp\u003eHHI score\u003c/p\u003e \u003cp\u003eT1- T2\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c6\"\u003e \u003cp\u003ePT \u0026amp; IC\u003c/p\u003e \u003cp\u003elevel of hope in each Factor of the HHI\u003c/p\u003e \u003cp\u003eT2\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c7\"\u003e \u003cp\u003eT2\u003c/p\u003e \u003cp\u003e2nd interview\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c8\"\u003e \u003cp\u003eMixed Methods\u003c/p\u003e \u003cp\u003eMeta-inferences\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eA lot of complicity between mother and son. The mother is a patient who suffers from COPD and is waiting for a lung transplant. She has many limitations in her daily life, being dependent on O2 24h/24h. They are both evangelicals, and practice religion actively through praying and reading the Bible.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Taba\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eHope focused on lung transplantation and the possibility of living a few more years with QoL.\u003c/p\u003e \u003cp\u003eThe patient reports that the disease affects her self-esteem, namely in terms of her image. The son talks a lot about his \"duty\" to take care of his mother. The mother in turn does not want to be a \"burden\" for her son.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabb\" border=\"1\"\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e39\u0026thinsp;\u0026minus;\u0026thinsp;38\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e46\u0026thinsp;\u0026minus;\u0026thinsp;40\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabc\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eHope remains focused on lung transplantation. The objective of the patient is to be able to live longer, with QoL and to be with her son. In this interview the patient introduces the notion of having the feeling her life is on \"stand-by\" until she gets the lung.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eCongruent\u003c/p\u003e \u003cp\u003eDyad\u0026rsquo;s hope is described in the same way in both periods and is confirmed by HHI scores that are stable\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eB\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eA couple where the lady is the patient (ALS) and her husband is the carer. The patient has limitations in activities of daily living, is wheelchair-bound, and needs help with almost everything. She has difficulty articulating words. The husband is the main carer, he manages all the logistics surrounding his wife's illness.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabd\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eThe patient feels like a happy woman and hopes to live as long as possible. The husband expresses that at the beginning of the discovery of the disease, it was difficult for him, but as time went by he got used to it and says he tries to do his \"best\" every day. Outdoor activities, such as going out and travelling, or being in contact with nature are important parts of this couple's well-being.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabe\" border=\"1\"\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e46\u0026ndash;47\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e39\u0026ndash;45\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabf\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eThe couple talked again about the moment when they found out about the disease and how difficult it was for them. They also talked about how important it is for them to get out of the house, go for walks and do activities outside the home.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eCongruent\u003c/p\u003e \u003cp\u003eThe dyad describes their experience focusing on the positive aspects which are reflected in the HHI scores.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eThis day is composed of two brothers, the younger one is the patient and the older one is the carer. The patient suffers from heart failure and obesity. The interview was very poor in content.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabg\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eThe patient focuses on his experience of wanting to be healthy so that he can live and work. Sometimes the speech is contradictory and difficult to understand. The carer has not shared much about his experience, he regrets the situation of his brother saying that it is a \"sad\" situation of social isolation (his brother does not go out).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003e-\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eD\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFather and daughter, where the patient is the father who suffers from pulmonary fibrosis and was one of the victims of COVID in the first wave. He was offered the possibility of a transplant but the patient refused.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabh\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003ePatient with a great faith in God, \" those who have faith have hope\". The patient talks about his experience as a COVID patient hospitalised and away from all his family. The daughter has a positive attitude towards life and promotes this attitude with everyone around her.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabi\" border=\"1\"\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e40\u0026ndash;41\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e43\u0026ndash;45\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabj\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eIn the second interview the experience of covid was less present and the interview was less deep than the first one. Each time hope is mentioned the connection with faith and God is very strong, especially for the patient. The daughter continues to relate how her positive attitude towards life helps to maintain hope.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eCongruent\u003c/p\u003e \u003cp\u003eThe dyad describes their experience concentrating on positive attitudes to face life. These findings are confirmed by the HHI scores.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eE\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMother and son, where the mother is the patient and the youngest son is the carer. The patient suffers from chronic respiratory insufficiency. She needs O2 24h/24h and is on the waiting list for lung transplantation.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabk\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eBoth elements of the dyad are strongly focused on the hope for a transplant in order to have QoL. The patient talks about her experience with the limitations imposed by the illness and how important the support of her family is. Her son talks about his experience when his mother has crises, and it is necessary to accompany her to the emergency.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabl\" border=\"1\"\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e40\u0026ndash;48\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e44\u0026ndash;48\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabm\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eIn the second interview their hope for transplantation is even more accentuated because the patient is moving forward in the process. Both are hoping that a donor will come as soon as possible and will be a suitable match.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eCongruent\u003c/p\u003e \u003cp\u003eThe possibility that the patient receives a lung transplantation is accentuated over time. The high HHI scores confirm these results.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eF\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCouple where the husband is the patient (COPD) and the wife the caregiver. The patient has some limitations in daily living activities and so does the wife. This couple has no children, the support network is limited.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabn\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eThe interview is very rich in emotions. Hope is associated with faith, religion and health. Both members of the couple have health problems and have faith that one day they will be healed. The spouse regrets not having had children and talks a lot about loneliness, her eyes fill with tears when she talks about these issues. The patient demonstrates a great dependence on his wife for most of his activities.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabo\" border=\"1\"\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e37\u0026ndash;41\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e38\u0026ndash;41\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabp\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eAs in the first interview, in the second interview hope and faith in God are very intertwined, as well as health and hope for better days are still very present in the couple's experience. In this interview, themes such as faith and ways of demonstrating and cultivating faith are very much addressed. Current financial difficulties were also touched upon during the interview as well as the fact that they feel lonely.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eDivergence\u003c/p\u003e \u003cp\u003eIn the second interview, both elements of the dyad were hoping for better days, however, they described their last months as difficult, which is incongruent with HHI scores.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eG\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eCouple, where the husband is the patient (pulmonary fibrosis) and the wife is the main caregiver. The patient is in the process of waiting for a lung transplant. They are a very complicit couple.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabq\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eBoth members of the dyad focus on hope for a lung transplant. Both look forward to the arrival of the phone call that will change their lives and bring more QoL. The sources of hope for this couple revolve around faith, seeing their daughter grow up and being in contact with nature.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabr\" border=\"1\"\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e47\u0026thinsp;\u0026minus;\u0026thinsp;43\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e44\u0026thinsp;\u0026minus;\u0026thinsp;35\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabs\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eIn the second interview, hope remains very much focused on the transplant. The patient says that his life is on pause waiting for this transplantation that will change his life.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eCongruent\u003c/p\u003e \u003cp\u003eThe focus of the dyad\u0026rsquo;s hope remains the transplantation, however described with less enthusiasm. HHI scores confirm those findings.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eH\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDyad is composed of two friends, the patient has ALS and the main caregiver is more than a person who receives a salary for the work she does, they are very complicit and friends.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabt\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003eThe patient focuses her hope on health (which she says she does not have), while the caregiver shows a positive attitude towards life where hope is always something positive. The patient in turn hopes that her symptoms will not worsen, and her situation will not deteriorate. The patient has part of her family living abroad and fears that if something happens her children will not be able to see her.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c5\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabu\" border=\"1\"\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e38\u0026thinsp;\u0026minus;\u0026thinsp;32\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e46\u0026thinsp;\u0026minus;\u0026thinsp;45\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c6\"\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"No\" id=\"Tabv\" border=\"1\"\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePT\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIC\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 1\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFactor 3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e16\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c7\"\u003e \u003cp\u003eIn the second interview the patient says she has lost hope and is afraid of what might happen to her, but her family and friends help her through this difficult phase. Although saddened by the deteriorating situation, the patient says that the contact with nature helps to improve her state of mind. As for the caregiver, she maintains a positive attitude towards life and says she has an inner strength that helps her to keep hope.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c8\"\u003e \u003cp\u003eCongruent\u003c/p\u003e \u003cp\u003eThe experience of hope is described differently by the two members of the dyad. Patient and IC have different visions that are stable over time.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"8\"\u003ePT - Patient\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"8\"\u003eIC - Informal caregiver\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"8\"\u003eFactor 1 - Inner sense of temporality and future (items 1, 2, 6 and 11) (range 4\u0026ndash;16)\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"8\"\u003eFactor 2 - Inner positive readiness and expectancy (items 4, 7, 10 and 12) (range 4\u0026ndash;16)\u003c/td\u003e\u003c/tr\u003e \u003ctr\u003e\u003ctd colspan=\"8\"\u003eFactor 3 - Interconnectedness with self and others (items 3, 5, 8 et 9) (range 4\u0026ndash;16)\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eIn this joint display, a brief context of each dyad is presented as well as a description of both interviews at T1 and T2. Patient and IC overall scores of hope are presented for T1 and T2 to enable comparison. The level of hope of dyads is presented in each factor of the HHI. In the last column, we provide a comprehensive understanding of how both interviews and hope scores converge or diverge [\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eIn our results, the data converge for all except Dyad F. At T2, Dyad\u0026rsquo;s F scores of hope were higher than T1 which was not reflected in the interview of T2. Themes such as loneliness, financial difficulties and loss of independence emerged extensively in the T2 interview. Both elements of the dyad were hoping for better days, however during the interview that was not the major topic of discussion, instead, they were both in a plaintive attitude towards life.\u003c/p\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e \u0026ndash; Dyads description and changes of their experience over time with HHI scores\u003c/p\u003e \u003cp\u003e[INSERT Table \u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e HERE]\u003c/p\u003e \u003cp\u003ePT - Patient\u003c/p\u003e \u003cp\u003eIC - Informal caregiver\u003c/p\u003e \u003cp\u003eFactor 1 - Inner sense of temporality and future (items 1, 2, 6 and 11) (range 4\u0026ndash;16)\u003c/p\u003e \u003cp\u003eFactor 2 - Inner positive readiness and expectancy (items 4, 7, 10 and 12) (range 4\u0026ndash;16)\u003c/p\u003e \u003cp\u003eFactor 3 - Interconnectedness with self and others (items 3, 5, 8 et 9) (range 4\u0026ndash;16)\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis pilot study is one of the first mixed method study in a Portuguese context that explores the experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their IC as a dyad, evaluates hope and symptom burden and provides an expanded and more comprehensive understanding about the multidimensional phenomena of hope. Our findings suggests that hope is present in patients living with advanced chronic illness and their IC and although its presentation may differ according to the trajectory of illness, it remained constant within their life transition. Even in the context of clinical deterioration and changing goals of care, hope was always present at some level, albeit revisioned as needs and outcomes changed. This is in alignment with Buckley and Herth\u0026rsquo;s longitudinal study [\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e]. This is an important finding for nurses and other healthcare professionals who are in contact with patients transitioning towards palliative care. Nurses play a central role in recognizing, fostering, and supporting hope in patients with advanced chronic illness. Nurses are often at the forefront of providing care and support, and their understanding of the role of hope can significantly influence patients' experiences. Through open communication, active listening, and empathetic understanding, nurses can build trust with patients and ICs. In practice, nurses can provide compassionate support by acknowledging and respecting dyads hopes, also they can educate patients and their families about the illness trajectory and help them set realistic goals based on their changing needs and circumstances [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. In addition, nurses can ensure effective symptom management enabling patients to maintain QoL as much as possible in this challenging phase of their lives [\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eTransition to palliative care in dyads living with advanced chronic illness is complex and difficult to determine the exact moment. It\u0026rsquo;s rather a slow movement throughout the time that is determined by moments of crisis that occasionally define one moment of transition from one state to another. For dyads living with advanced chronic illness, the granularity of a transition cannot be bonded only to changes. One living with chronic illness experience physical deterioration over time, sometimes for decades until the moment that physical and psychological symptoms take over life. The changes over time are sometimes unnoticeable, people have time to adapt and bounce back. Transition as it is defined by Meleis does not explain the granularity of the experience of dyads living with advanced chronic illness [\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e]. The transition expressed in this study, more than passing from one state to another, is akin to going downstairs and having to adapt to each step you descend; over time, the transition happens naturally but always towards decline. The concept of transience may be more adapted to explain transition in palliative care, as a transition as a linear movement towards a specific outcome may be erroneous in palliative care, given the fluidity of constantly changing health and risk of deterioration and death [\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e]. In our study, all participants were enrolled in palliative care outpatient consultations because they all had advanced chronic illnesses progressing and causing discomfortable symptoms. For some dyads, the experience of dealing with an advanced chronic illness is part of their daily life since long time (for some more than 20 years), for those patients who have been managing their chronic illness for a long time, they may have established coping mechanisms and psychological defenses to deal with their condition. In this regard, transitioning to palliative care may create negative emotions, such as fear, anxiety, or a sense of giving up. Nurses and other healthcare professionals need to navigate these emotions thoughtfully, assuring dyads feel supported and understood throughout the process. Moreover, transitioning to palliative care may involve a shift in treatment goals from curative or disease management to symptom control and QoL. For some patients accepting this change may be challenging, they may need guidance and support to align their care preferences with the goals of palliative care. Again, nurses play an essential role in facilitating discussions about goals of care, addressing concerns, and assisting patients in making informed decisions. Furthermore, transitioning to palliative care can be emotionally confronting for patients and ICs, as it may involve acknowledging limitations and facing EoL issues. Nurses must provide emotional support, empathy, and counseling to help dyads navigate intricate emotional aspects of their context. They can also facilitate referrals to specialized services such as specialized palliative care teams or psychotherapy, if needed. In addition, nurses must be aware of caregiver\u0026rsquo;s role, they may experience their own emotional and practical challenges. Nurses can provide guidance, education, and respite support to help alleviate the burden on caregivers and empower caregivers to provide optimal care. Furthermore, ICs presence and engagement in patient\u0026rsquo;s everyday life as well as cultural beliefs and attitudes shape how transitions are perceived [\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAt least four dyads referred to hope as something external to them, e.g., \u0026ldquo;hope for a lung transplant\u0026rdquo; or \u0026ldquo;hope for a donor\u0026rdquo;. This is an interesting finding because the ways healthcare professionals foster hope may shape dyads experience. It is fundamental for healthcare professionals to acknowledge the potential dangers of putting all patients' hopes in a single external factor, such as finding a donor. Although treatments or transplantation can bring hope, it is essential to maintain a balanced perspective and help patients and ICs explore alternative sources of hope. By providing comprehensive support, including emotional and psychological support, healthcare professionals can better manage expectations and navigate the complex emotional challenges that arise when hope becomes merely dependent on external factors. Besides, through effective communication, active listening, and compassionate support, healthcare professionals can help dyads develop realistic expectations and goals while maintaining a sense of hope [\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e]. By providing accurate information about treatment options, prognosis, and potential alternatives, healthcare professionals can help patients and ICs make informed decisions and explore hope beyond the reliance on external factors alone.\u003c/p\u003e \u003cp\u003eThe ESAS evaluation suggests that patients living with advanced chronic illness seemed to have their symptoms relatively controlled. This might be related to the fact that patients have their conditions stabilized over the years and are being followed by a palliative care hospital based team which provides them support, management and assessment of their symptoms. Additionally, the collaborative nature of palliative care involves a multidisciplinary team with different healthcare professionals who contribute to effective symptom control and facilitates comprehensive assessment, treatment planning, and ongoing monitoring of symptoms. Moreover, early palliative care interventions in advanced chronic patients could increase QoL, better symptom management and motivate the writing of advance care directives [\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e].\u003c/p\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eStudy strengths and limitations\u003c/h2\u003e \u003cp\u003eThe strength of this study was the use of dyadic interview. Although relatively unexplored as a research method, the dyadic interview was very much appreciated by all dyads. All participants were pleased that their loved ones could participate in the interview and share their points of view. Participants learned something from each other, and some difficult subjects came to the surface to be explored. The benefit of a dyadic interview over a single interview was capturing the experience through the perspective of two persons who experience the consequences of advanced chronic illness together [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e]. As a method, apart from the research interest, it has the potential to inform our understanding of shared experiences in complex situations and avoids the risk of compartmentalizing a situation. Rather, it situates the challenges in the real-world experience of the patient and IC and gives voice to both in expressing and determining their needs at critical transition points in living and dying [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e]. In our study, dyads expressed their contentment by having the chance to share their experience of being accompanied by their loved ones. There were some moments of tension between interviewees, however, there were also opportunities for participants to deepen their shared experience. Despite the good feedback from participants, dyadic interview adds potential bias. One could imagine that the IC or the patient may not express their full experience because of the presence of the other.\u003c/p\u003e \u003cp\u003eThe mixed methods design used, allowed for extensive qualitative exploration, with findings strengthened by thorough triangulation. Nonetheless, there are also limitations in terms of a small sample and a wider interval between T1 and T2 may have yielded more evidence of substantive change in both symptom distress and hope. However, the challenge is the high risk of attrition which poses an added challenge to research in this population [\u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAnother limitation in this study was the difficulty to identify changes between T1 and T2 because the amount of time between the two moments was short. A much longer period would be required to accompany dyads experiencing advanced chronic illness. Also, an evaluation of QoL of dyads would have added more detailed information about the impact of symptoms in dyads\u0026rsquo; everyday lives. Several ICs mentioned the burden of caring for their loved ones. The evaluation of that burden quantitatively and qualitatively would have given important information for healthcare professionals to design interventions that focus on relieving IC burden.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eImplications for practice\u003c/h2\u003e \u003cp\u003eWhile a growing number of health professionals are recognizing the significance of hope and positive thinking in the context of terminally ill patients and their families, there remains a concern among some other professionals that engaging in conversations regarding EoL care may diminish hope. There is a need for further training and practical experience in the realm of communication skills to assist healthcare professionals in striking a delicate balance between providing reliable and truthful information while also offering support to patients and their families as they navigate the process of adjusting to the inevitability of terminal illness. Since most hope-based interventions have been primarily targeted towards patients with cancer and their caregivers, there is evidence suggesting that some interventions may have positive effects in the context of many life-threatening illnesses.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusions","content":"\u003cp\u003eThe findings of our study, which involved the dynamic analysis of dyads of patients with advanced chronic illness and their ICs, show a persistent presence of hope even in the face of adversity. Providing consistent symptom management is crucial to foster hope among dyads, which contributes to better QoL and comfort for both patient and IC. Access to early palliative care in the context of chronic illness should be supported and promoted in order to follow up with patients and ICs throughout their disease trajectory and support hope for coping in challenging moments. Healthcare professionals\u0026rsquo; communication skills should be continually updated and trained to better respond to patients\u0026rsquo; and IC\u0026rsquo;s expectations and avoid conveying messages of hope in noxious way. Our study highlighted the importance of a shared experience within patient-caregiver dyads, emotional support and open communication were central.\u003c/p\u003e \u003cp\u003eFinally, our study calls for continued investment in palliative care services that go beyond patient-focused symptom management and include dyads\u0026rsquo; need for emotional and psychological support. More systemic interventions are needed to ensure a comprehensive and compassionate response to patients\u0026rsquo; and IC\u0026rsquo;s needs. Further research is needed including dyads as a unit to better understand their dynamics and experiences.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003ePatient (PT)\u003c/p\u003e\n\u003cp\u003eInformal Caregiver (IC)\u003c/p\u003e\n\u003cp\u003eQuality of Life (QoL)\u003c/p\u003e\n\u003cp\u003eEnd-of-Life (EoL)\u003c/p\u003e\n\u003cp\u003eGood Reporting of a Mixed Methods Study (GRAMMS)\u003c/p\u003e\n\u003cp\u003eGold Standard Framework (GSF)\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eHerth Hope Index (HHI)\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eEdmonton Symptom Assessment System (ESAS)\u003c/p\u003e\n\u003cp\u003eChronic Obstructive Pulmonary Disease (COPD)\u003c/p\u003e\n\u003cp\u003eAmiotrofic Lateral Sclerosis (ALS)\u003c/p\u003e\n\u003cp\u003eChronic Heart Failure (CHF)\u003c/p\u003e\n\u003cp\u003eInterstitial Lung Disease (ILD)\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cem\u003eEthics approval and consent to participate\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe study was granted permission by the ethics committee of the \u003cem\u003eHospital da Senhora da Oliveira Guimar\u0026atilde;es\u003c/em\u003e (Ref: 86/2020). Informed consent was obtained from all subjects.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConsent for publication\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAvailability of data and materials\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe datasets generated during the current study are not publicly available because participants consented to participate but did not consent to sharing their data.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCompeting interests\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFunding\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThis study was funded by the SEED MONEY FOR JOINT SWISS-PORTUGUESE ACADEMIC PROJECTS on behalf of \u003cem\u003eHEdS Haute \u0026eacute;cole de Sant\u0026eacute; Gen\u0026egrave;ve, Suisse \u0026ndash; HES-SO\u003c/em\u003e and \u003cem\u003eInstituto Polit\u0026eacute;cnico de Leiria \u0026ndash; Escola Superior de Sa\u0026uacute;de, Leiria, Portugal.\u0026nbsp;\u003c/em\u003eThis work was also supported by \u003cem\u003eFCT\u0026mdash;Funda\u0026ccedil;\u0026atilde;o para a Ci\u0026ecirc;ncia e a Tecnologia\u003c/em\u003e, I.P. (UIDB/05704/2020 and UIDP/05704/2020) and by the Scientific Employment Stimulus \u0026mdash; Institutional Call \u0026mdash; [https://doi.org/10.54499/CEECINST/00051/2018/CP1566/CT0012]\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAuthors\u0026apos; contributions\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eFBPB \u0026ndash; is the PhD candidate and contributed to the design, data collection, analysis and writing of the present paper.\u003c/p\u003e\n\u003cp\u003eMG and CF \u0026ndash; contributed to recruitment, data collection and revision of this paper, they approved the submitted version.\u003c/p\u003e\n\u003cp\u003eCL, AQ AND MAD \u0026ndash; contributed to the design, data analysis, revision and writing of the present paper, they approved the submitted version.\u003c/p\u003e\n\u003cp\u003eSP and PL \u0026ndash; contributed to the design, revision and writing of the paper, they approved the submitted version.\u003c/p\u003e\n\u003cp\u003eGDR \u0026ndash; contributed to design, data analysis, writing and revision of the paper and approves the submitted version.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAcknowledgements\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eDufault K, Martocchio BC. 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Middle-range and Situation-specific Theories in Nursing Research and Practice. In.: Springer Publishing Company, New York; 2010.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCreswell JW, Creswell JD. Research design: qualitative, quantitative, and mixed methods approaches; 2018.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNevedal AL, Ayalon L, Briller SH. A Qualitative Evidence Synthesis Review of Longitudinal Qualitative Research in Gerontology. Gerontologist. 2019;59(6):e791\u0026ndash;e801.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSchumacher KL, Plano Clark VL, Eilers J, Kigondu N, Geary C, Kupzyk K, Lydiatt WM, Lackner RP, Ly Q. Methodological considerations for the design and implementation of a fully longitudinal mixed methods study. Res Nurs Health. 2021;44(3):571\u0026ndash;80.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eO'Cathain A, Murphy E, Nicholl J. 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Revista Brasileira de Geriatria e Gerontologia 2021, 23.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eViana A, Querido A, Dixe MA. A. B: Avalia\u0026ccedil;\u0026atilde;o da esperan\u0026ccedil;a em Cuidados Paliativos: Tradu\u0026ccedil;\u0026atilde;o e adapta\u0026ccedil;\u0026atilde;o do Herth Hope Index. Investiga\u0026ccedil;\u0026atilde;o Quantitativa em Cuidados Paliativos 2012:1\u0026ndash;12.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHerth K. Fostering hope in terminally-ill people. J Adv Nurs. 1990;15(11):1250\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care. 1991;7(2):6\u0026ndash;9.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBernardo A. Avalia\u0026ccedil;\u0026atilde;o de sintomas em cuidados paliativos. \u003cem\u003eUniversidade de Lisboa: Lisbon, Portugal\u003c/em\u003e 2005.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePolak L, Green J. Using Joint Interviews to Add Analytic Value. Qual Health Res. 2016;26(12):1638\u0026ndash;48.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCaldwell K. Dyadic interviewing: a technique valuing interdependence in interviews with individuals with intellectual disabilities. Qualitative Res. 2014;14(4):488\u0026ndash;507.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBraun V, Clarke V. Is thematic analysis used well in health psychology? A critical review of published research, with recommendations for quality practice and reporting. Health Psychol Rev. 2023;17(4):695\u0026ndash;718.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBraun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3(2):77\u0026ndash;101.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBerger PL, Luckmann T. The Social Construction of Reality: A Treatise in the Sociology of Knowledge. Open Road Media; 2011.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCreswell JW, Plano Clark VL. Designing and conducting mixed methods research; 2018.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLincoln YS, Guba EG. But is it rigorous? Trustworthiness and authenticity in naturalistic evaluation. New Dir program evaluation. 1986;1986(30):73\u0026ndash;84.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCalman L, Brunton L, Molassiotis A. Developing longitudinal qualitative designs: lessons learned and recommendations for health services research. BMC Med Res Methodol. 2013;13:14.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBuckley J, Herth K. Fostering hope in terminally ill patients. Nurs Stand. 2004;19(10):33\u0026ndash;41.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBecque YN, Rietjens JAC, van der Heide A, Witkamp E. How nurses support family caregivers in the complex context of end-of-life home care: a qualitative study. BMC Palliat Care. 2021;20(1):162.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMeleis AI. THEORETICAL NURSING Development and Progress; 2012.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eLarkin PJ, Dierckx de Casterle B, Schotsmans P. Towards a conceptual evaluation of transience in relation to palliative care. J Adv Nurs. 2007;59(1):86\u0026ndash;96.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePenrod J, Baney B, Loeb SJ, McGhan G, Shipley PZ. The influence of the culture of care on informal caregivers' experiences. ANS Adv Nurs Sci. 2012;35(1):64\u0026ndash;76.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eOlsman E, Duggleby W, Nekolaichuk C, Willems D, Gagnon J, Kruizinga R, Leget C. Improving communication on hope in palliative care. A qualitative study of palliative care professionals' metaphors of hope: grip, source, tune, and vision. J Pain Symptom Manage. 2014;48(5):831\u0026ndash;838e832.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTassinari D, Drudi F, Monterubbianesi MC, Stocchi L, Ferioli I, Marzaloni A, Tamburini E, Sartori S. Early Palliative Care in Advanced Oncologic and Non-Oncologic Chronic Diseases: A Systematic Review of Literature. Rev Recent Clin Trials. 2016;11(1):63\u0026ndash;71.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJordhoy MS, Kaasa S, Fayers P, Ovreness T, Underland G, Ahlner-Elmqvist M. Challenges in palliative care research; recruitment, attrition and compliance: experience from a randomized controlled trial. Palliat Med. 1999;13(4):299\u0026ndash;310.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-palliative-care","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pcar","sideBox":"Learn more about [BMC Palliative Care](http://bmcpalliatcare.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pcar/default.aspx","title":"BMC Palliative Care","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Hope, dyad, chronic illness, palliative care, mixed methods, End-of-Life","lastPublishedDoi":"10.21203/rs.3.rs-3933532/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-3933532/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eHope 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.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA longitudinal mixed-methods study with a convergent design was conducted. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n\u0026thinsp;=\u0026thinsp;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\u0026rsquo;s symptom burden. Descriptive statistics were undertaken using the STATA\u0026reg; 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.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eDyadic scores of hope and patients' symptom burden were stable over time. The constructs of hope in dyads include \u0026ldquo;Living one day at the time\u0026rdquo;, \u0026ldquo;To have force/strength\u0026rdquo; and \u0026ldquo;To be in good health\u0026rdquo;. Changes in patterns of hope were captured for each dyad in their transition over time. Data converge for all Dyads except for one.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eThe 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.\u003c/p\u003e","manuscriptTitle":"The Experience of Hope of Dyads Living with Advanced Chronic Illness in Portugal: a longitudinal mixed-methods pilot study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-02-20 18:10:29","doi":"10.21203/rs.3.rs-3933532/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-02-19T11:33:59+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-02-16T13:38:29+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-02-16T13:38:29+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Palliative Care","date":"2024-02-06T10:14:05+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-palliative-care","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"pcar","sideBox":"Learn more about [BMC Palliative Care](http://bmcpalliatcare.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/pcar/default.aspx","title":"BMC Palliative Care","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"d4ba920c-584b-45fe-95c7-748bfcedbcd1","owner":[],"postedDate":"February 20th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2024-08-22T19:42:58+00:00","versionOfRecord":{"articleIdentity":"rs-3933532","link":"https://doi.org/10.1186/s12904-024-01528-x","journal":{"identity":"bmc-palliative-care","isVorOnly":false,"title":"BMC Palliative Care"},"publishedOn":"2024-08-14 15:58:00","publishedOnDateReadable":"August 14th, 2024"},"versionCreatedAt":"2024-02-20 18:10:29","video":"","vorDoi":"10.1186/s12904-024-01528-x","vorDoiUrl":"https://doi.org/10.1186/s12904-024-01528-x","workflowStages":[]},"version":"v1","identity":"rs-3933532","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-3933532","identity":"rs-3933532","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}