Participants’ backgrounds

A total of eight dyads (16 participants in total) 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 informal caregiver varied depending on the status of that relationship (i.e., married couples tended to be closer in age than parent–child dyads). One patient (in Dyad H), although married, received their main caregiving from friends. Patients presented with a range of advanced chronic diseases conducive to the need for ongoing complex care and support. With one exception, all dyads completed T1 and T2 data collection. The dropout 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 characteristicsVariations of hope over time

Overall, subdimensions of hope were stable across time (see Fig. 1, 2 and 3). However, in some cases, a strong variation between T1 and T2 could be observed. The patient in Dyad A had a relatively low score in Factor 1 at T1, whereas this score increased at T2. Yet, Factor 2 and Factor 3 had high values at T1 and decreased at T2. At the same time, the informal caregiver in Dyad A remained stable between T1 and T2.

Fig. 1

Inner sense of temporality and future (Factor 1) between T1 and T2 among Dyads

Fig. 2

Inner positive readiness and expectancy (Factor 2) between T1 and T2 among Dyads

Fig. 3

Interconnectedness with self and others (Factor 3) between T1 and T2 among Dyads. 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, and 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, whereas informal caregiver results were constant. Symptom burden scores were higher at T2 than at T1.

Table 5 Dyads’ HHI and ESAS scores

Although most patients presented similar ESAS scores at T1 and T2, some (notably patients D and H) showed changes in self-estimated symptom burden between T1 and T2, which was considered unsurprising given the nature of their evolving illness.

Dyads’ constructs of hope

Dyad’s constructs of hope are presented in the Fig. 4.

Fig. 4

Dyads’ constructs of hope

From the data analysis, three key themes emerged, offering a comprehensive understanding of the construct of hope for dyads: living one day at a time, having inner strength, and maintaining good health.

Living one day at the time

For dyads, the construct of hope is associated with life. To live is having quality of life, having new opportunities, and living one day at the time. For participants, quality of life is having 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, which could include receiving a transplant or having a miraculous treatment. This seemed to be related to how healthcare professionals suggest these treatments.

Dyad G, Patient, T1: “[Hope] It's very simple, it's a [lung] transplant. …. It's the only thing.”

Dyad G, Informal caregiver, T1: “Everything is focused on this situation [the possibility of a transplant]. Then we can go for a walk, hold hands, have coffee, have a romantic date…”.

Living one day at a time was expressed as making no plans and living every day to the fullest possible extent. Dyad D, informal caregiver, 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.”

Having 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. Although sometimes this inner force had to be actively developed to face the consequences of the illness, at other times, it remained elusive. In that case, it was more difficult to activate this personal resource.

Dyad B, Informal caregiver, 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, Informal caregiver, T2: “I think I have a strength that I don't know where it comes from…”.

Maintaining good health

Hope also means being healthy; 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, Informal caregiver, 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 5 shows a descriptive analysis of the dyads’ experience of hope. The Model of Hope from Dufault and Martocchio [4] was used to describe each dimension.

Fig. 5

Dyads’ experience of hope

The affective dimension includes sensations and emotions [4]. In our study, we found that dyads tended to feel a large range of emotions over time, including feelings of fear, sadness, happiness, and anxiety. The patient of 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].” The patient of Dyad B expressed happiness in small things such as 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 of and barriers to the maintenance of hope [4]. Dyads’ most common dreams were related to their family and offspring. The patient Dyad G wished to see his daughter going to university: “[Dreams] It's seeing my daughter go to university.” The patient of Dyad E wanted to meet his grandchildren and be there for their children at special events such as their wedding: “The plans I have are to meet my grandchildren and take my children up to the aisle.”

Dyads’ facilitators of hope were expressed through getting good news. The patient in 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, which the patient in Dyad H shared: “What takes my hope away? Oh, I don't know… if I get some not so good news.”

The behavioral dimension of hope encompasses the action-oriented approach that individuals take toward their desired outcomes, spanning psychological, physical, social, and religious domains [4]. In the psychological subdomain, we found that dyads actively want to hope a lung transplant will save them; for example, the patient in Dyad A expressed the following: “…because I don't know if I'll get it [the transplant] but I have to believe in something.”

In the physical subdomain, keeping active and being in contact with nature were actions taken by dyads that helped to maintain hope. The patient in 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 subdomain, some dyads reflected on their attitude of isolation toward society or even their loved ones; the brother of the patient in Dyad C expressed 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 his own actions and that nobody else can do it for him. Both patient and informal caregiver of Dyad C conveyed a sense of hopelessness. The informal caregiver described his brother as essentially present but not truly living life, likening him to a “dead person standing there.” The Informal caregiver in Dyad C shared the following: “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 subdomain reflects actions such as prayer and attending Mass, which involves reconnecting with one's faith and spiritual practice. This is represented by the informal caregiver in Dyad F: “I like going to Mass, I like praying, a lot… I pray in the morning. I get up and start praying straightaway.”

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 [4]. 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, as illustrated by the informal caregiver in Dyad G: “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 in Dyad A. The patient spends most of her time at home, as she is not capable of going out often because her building does not have an elevator. However, she is the main support of a friend who needs comfort, and 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. The informal caregiver in Dyad F 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 in 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, about which 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 informal caregiver in 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 with their hopes and experiences [4]. 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 the everyday life of dyads living with chronic advanced illnesses. Informal caregiver of 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, as reflected on by the informal caregiver in Dyad H: “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 an individual’s hope [4]. In our dyads, this was represented as being dependent on the caregiver or on medical devices. The patient in 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 informal caregiver in Dyad G was the wife of the patient and was the main caregiver of her husband. She expressed how she was afraid of bathing him: “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 by using the same interview guide. Dyads’ characteristics and changes over time are presented in Table 6.

Table 6 Description of dyads and changes in their experience over time with HHI scores

It presents a brief context of each dyad, as well as a description of both interviews at T1 and T2. Overall scores of hope of patients and informal caregivers 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 of Table 6, we provide a comprehensive display of how both interviews and hope scores converge or diverge [55].

In our results, the data converge for all except Dyad F. At T2, Dyad’s F scores of hope were higher than at 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 people in the dyad were hoping for better days, but during the interview, that was not the major topic of discussion; instead, they both held a plaintive attitude toward life.