Participants’ demographic characteristics

Researchers were introduced to 10 potential participants. After explaining the study to all of them, their consent to participate in this study was obtained. The 10 participants’ demographic characteristics are presented in Table 1. The participants included six women (60%); age of the participants ranged from 65 to 79 years (mean = 70.4). Two participants (20%) were employed, and both were self-employed. All the participants suffered from some chronic diseases, and three of them were cancer survivors. The main consultant and supporters of the participants were family members who lived separately. The interview time ranged from 18 to 60 min (mean = 38.8), and length of caregiving period was ranged from 7 to 48 months (mean = 21.4).

Themes

From the data, we obtained 152 codes and identified four main themes and 13 sub-themes for each experience of the older spousal caregivers of patients with cancer undergoing palliative chemotherapy. All themes are presented in Table 2.

Table 1 Participants’ demographic characteristicsTheme 1: getting used to living with the disease

This theme focused on participants gradually becoming accustomed to living with a patient with cancer by trying to understand the side effects and symptoms associated with the patient’s chemotherapy, trying to reduce the symptoms, and trying to gain medical knowledge for supporting the patient.

Habituation of supporting recuperation

Many participants ensured that cancer patients undergoing palliative chemotherapy could recuperate comfortably. This included researching the side effects experienced by palliative chemotherapy patients and then actively preparing meals and doing household chores based on their physical condition and symptoms to reduce their burdens.

D: “My husband had a tough time at times with little appetite due to the side effects of the chemotherapy. So, I would write down what he ate for breakfast, lunch, and dinner, how much he ate, and things like that.”

H: “…used to go shopping with my wife, but now I sometimes go shopping alone. These responsibilities may have increased. I may have become more involved in these areas without realizing it.”

C: “At the beginning, when the treatment started, I was the one who devised his diet. However, he didn’t eat much because of the side effects, so we eventually reverted to our previous lifestyle.”

They also took care of the psychological aspect by respecting the patients’ feelings and tolerating their selfishness so they could be at peace. Furthermore, they tried to hide their feelings.

G: “I know he is sick, so I try not to get angry and react as gently as possible…”.

Table 2 Emergent themes and sub-themesRecognition of side effects

Because of the various side effects symptoms that patients experience with palliative chemotherapy, participants sought to understand these symptoms. They also recognized that symptoms accumulate throughout treatment and can be ameliorated by reducing the dosage of therapeutic drugs.

B:“Symptoms became progressively more severe in the fourth therapy session than in the first.”

I: “When taking the maximum dose of Giotrif, he lost weight due to diarrhea. However, after the drug was reduced to half the dose, he was able to eat more and more.”

Acquisition of medical knowledge

Several participants have gained understanding of lab results for recognizing the progression of a patient’s condition. They also tried to understand the effect of the medicine by asking the question to healthcare providers.

D: “I cannot ask the doctor if I do not understand my husband’s treatment therapy. I do not think I will be able to communicate well if I do not.”

G: “The doctor marked the lab results…So from then on, I try to look at the blood lab results as much as possible.”

Theme 2: deepening view of life and death

This theme demonstrated gradual acceptance of the patient’s current condition as participants with cancer and health problems strive to understand the patient’s experience themselves and as they become aware of death as the disease progresses. They also began forming a value system for their treatment, hoping that the treatment would continue to the extent that they would not be overwhelmed when considering the rest of their lives. In other words, their view of life and death deepened as they were confronted with the opportunity to consider how to live until death.

Consciousness of death

Because of the patient’s older age and the advanced stage of cancer, all participants were aware of the possibility of patient’s death. They were prepared for the fact that the disease had already progressed, even as they were undergoing palliative chemotherapy.

F: “I was prepared for his death when I discovered his cancer had metastasized. When the doctor told me he had terminal cancer, I knew he would die soon.”

I: “I think I tell myself that I must think about her death. It’s the life that was given to her. So it’s a preparation to get my mind in order.”

Understanding the patient’s experience

The participants who provided care for the patients tried to understand their patients’ way of life by witnessing the pain associated with cancer incidence and the treatment that patients were experiencing.

C: “He did not need to take any more anticancer drugs because he had lost his appetite due to side effects symptoms…I want him to continue the treatment, but if he wants to quit, I have no choice but to understand his wishes.”

Changing values for treatment

The experience of living with and caring for patients undergoing treatment gradually shifted their values toward treatment, from wanting patients to undergo treatment aggressively to wanting patients to undergo treatment to the extent that they are not overwhelmed and hoping that they would be able to live the rest of their lives with ease. Therefore, understanding the experiences of older spouses in depth is necessary.

G: “I want him to continue treatment as much as possible. However, I have seen how painful the side effects and symptoms of the treatment are. Therefore, I would like the intensity of the treatment to be reduced so that he can live an easier life.”

Theme 3: anxious about the future

This theme referred to anxiety about the future. Participants were conflicted between hope for the effectiveness of treatment and fear about the progression of the patient’s disease. In addition, they were conflicted about cancer as a disease and their lives as a caregivers, wishing to maintain their existing lives while constantly worrying about whether their health condition was deteriorating. Above all, the participants cared for their health problems, fearing that their health problems would worsen.

Conflicts between treatment efficacy and Disease progression

The participants were hopeful about the effects of palliative chemotherapy for cancer but feared that their condition would worsen, and they lived with this conflict every day.

D:“I always felt down, and …I also felt that I wanted to have hope.”

Mixed feelings of desire to support recuperation and anxiety

Participants had the intention to take care of the patient. However, they also had anxiety about the difficulties of continuing palliative chemotherapy for cancer because of its side effects.

I: “I wonder how long patients can stay in treatment. Sometimes they do not look well because they can’t eat and lose weight, and you can tell they are not doing well. So I wonder how long I can continue the treatment because I see that.”

Worry about their own health

Participants themselves had chronic diseases. Therefore, they felt anxious about their health problems worsening and taking care of the patient with their health condition.

B: “What if I have a terrible history (high blood pressure, brain aneurysm, etc…)? I do not know at my age what I would do if I had a history of high blood pressure or a cerebral aneurysm or if I should die. I always think about that.”

Theme 4: desire for a better rest of life

This theme was observed in all older participants, who stated that they wanted to spend their remaining time together well and that their marital bond was strengthened through the experience of caregiving. Additionally, to realize this prosperous remainder of lives, they need their children, grandchildren, and other important people to help them live. Therefore, they need connections with society including those with their families.

Values the remaining time

The participants who supported the patients were older adults and had a solid desire to cherish the remainder of their lives spent with patients who did not have a long life ahead and wished to stay in familiar places as long as possible. They also wanted to support the patients in their work, hobbies, and other activities even while they were undergoing treatment.

E: “I wanted the patient to stop working when he was diagnosed with cancer. However, now, I want to let them work until they say so.”

F: “I want to let him do what he wants while his body can still move. We travel by car, too. That is how we like to go out together.”

Energy source for living

Participants found that being involved with their children and grandchildren helped alleviate some of the hardship in caregiving. In addition, patients receiving adequate treatment and their good health were a source of energy for the participants.

D: “My grandson is now four years old, and watching him is just the right situation to take my mind off things, and it’s good medicine for me.”

F: “I am so glad that the treatment was effective. After that, my husband got better, and I got better too. When his cancer recurred, I felt down, but when I heard the good results, my spirits were lifted.”

Deepening affection

Through the experience of caring for the patient, the participants felt a strong desire to “do something” for the patient. In addition, they shared that the bond between the couple was strengthened by supporting the patient through his or her medical treatment.

I:“My wife is sick, and I want to do something to help her…”.

J: “After all, we are a married couple…now we have to walk hand in hand, and our bond has deepened when I think about it.”

Coexistence with society

As older people, the participants who care for their patients know they are supported by other family members and healthcare providers. However, they did not want to inconvenience family members, especially their children, and were searching for a way to coexist with society.

E: “My son takes time off work to drive me to the hospital, so he helps me in that sense.”

I: “My sons are nearby, but I honestly do not want to bother them by having them take care of me.”