Introduction

Most developed countries define older people as individuals aged 65 years or over (World Health Organization, 2018). On the basis of this threshold, older adults account for 16.85% of Taiwan's total population, meeting the widely accepted definition of an “aged society” (Ministry of the Interior, Taiwan, ROC, 2022). In an aging society, the incidence of cancer, diabetes, neurodegenerative and cardiovascular diseases, and other serious ailments is higher in aging societies, with cancer ranking as the largest cause of morbidity in older adults and the mean age of death from cancer being 70 years. Most older patients experience comorbid chronic diseases (Ministry of Health and Welfare, Taiwan, ROC, 2021). In addition, because of age-related declines in physical functioning (Akechi et al., 2012; Derks et al., 2016; Nightingale et al., 2021), hospitalization-related costs, durations, comorbidities, and mortality tend to be higher in this group as well (Gbeasor-Komlanvi et al., 2020). Moreover, probability of rehospitalization increases with patient age and cancer stage (Stitzenberg et al., 2015). In light on the above factors, caring for older patients with cancer is highly challenging for the healthcare system and for caregivers. Furthermore, the results of prior research indicate that caregivers of older cancer survivors experience higher levels of distress, a lower quality of life, and greater anxiety than the general population (Jansen et al., 2018).

As responsibility for managing cancer-related symptoms increasingly shifts from hospital to family settings, family caregivers (FCs) must necessarily take on care responsibilities originally assigned to professional staff during hospitalization, including managing pain, nausea, fatigue, and medications and deciding whether and when to contact physicians (van Ryn et al., 2011). A systematic review on older patients with cancer found the highest unmet social support need to be medical support (39%), followed by informational (35%), physical (30%), emotional (28%), and practical (20%) support needs (Kadambi et al., 2020). The priority healthcare education needs of FCs of older patients with cancer (Bangerter et al., 2019; Gröpper et al., 2016) focus on drug and nutrition information, home self-care, and assisting patients adjust their comfort (Ghorbani et al., 2020; Hestevik et al., 2020). Thus, after older patients with cancer are discharged home from the hospital, it is vital for FCs to have sufficient information, caregiving skills, and support.

Currently, many older patients with cancer return home to rest after outpatient treatment and to wait for the next cycle of anticancer therapy, where they are cared for by family members. This results in immense stress for FCs, as only professional staff can comprehensively evaluate the healthcare needs of these patients (Baider & Surbone, 2014). FCs are nonformal caregivers (e.g., spouses, family members, friends, or neighbors) who generally care for the health and daily lives of patients without remuneration. In addition, many FCs are required to provide physical and psychological support as well as financial assistance (S. H. Kim et al., 2018). These various care tasks cause immense psychological stress, resulting in anxiety and depression among FCs (Lee et al., 2013). Studies have found that family members caring for older patients with cancer exhibit more anxiety and depression, lower levels of perceived social support, and poorer coping capacity than caregivers of older patients without cancer (Goldzweig et al., 2013). Moreover, duration of care increases the perceived burden of FCs. Patients' lack of appetite and depressive emotions, as well as caregivers' fatigue, pain, and lack of confidence in their caregiving work, increases the burden on caregivers (Lee et al., 2018). Therefore, 25% of family members adjust their work hours, take leave, or quit their jobs to care for patients (Wadhwa et al., 2013).

Relatively few studies have focused on exploring the experiences of FCs in caring for their older family members with cancer at home. In this study, qualitative methods were employed to investigate these experiences to elucidate a more in-depth understanding of the actual contextual experiences of these caregivers, which is important for developing and implementing concrete support strategies for FCs.

Methods Research Design

The topic was approached in this study from a qualitative perspective. To understand participant experiences, it is necessary to get acquainted with their world and explore the nature of phenomena (Holloway & Galvin, 2016; Speziale et al., 2011). Qualitative research allows researchers to increase understanding of human experiences, which is crucial for health professionals who focus on caring, communication, and interaction (Holloway & Galvin, 2016; Speziale et al., 2011). Thus, we studied the experiences of FCs in caring for patients with cancer. A qualitative study design was used to explore the at-home caregiving experiences of 20 FCs of older patients with cancer. In-depth interviews were conducted to provide participants with the opportunity to fully describe their experiences.

Sample

The inclusion criteria were FCs who (a) were over 18 years old, (b) were caring for older cancer patients receiving anticancer therapy in a chemotherapy outpatient setting, (c) were identified by their patient as their primary caregiver, and (d) lived in the same house with their patient.

Ethical Considerations

The institutional review board of National Taiwan University Hospital in Taipei approved this study (number: 201809058RIND). The purpose of the study was explained to all of the participants, and they were all informed of their rights, including that they could withdraw from the study at any time. All of the participants signed an informed consent form.

Data Collection

FCs of older patients with cancer were approached from January to December 2019 in the chemotherapy outpatient setting of a medical center in northern Taiwan and invited to participate in this study. A trained researcher (interviewer) with 4 years of oncology nursing experience interviewed 20 patients with cancer. The FCs were informed that they were being digitally recorded during the interview and received FC consent to do so. The interviewer used face-to-face, open-ended questions to elicit responses. Examples of these questions include “Could you share with me your experiences of caring for older cancer patients at home?”, “Feel free to state your thoughts or opinions on [topic],” and “What impressed you most during your caregiving experience?” If a participant described hardship in caring for a patient, they were asked, “How did you adjust the situation by yourself?” To ensure the participants were more likely to express their authentic feelings, the interview was conducted in a quiet, private clinic room during chemotherapy or after consulting with a doctor.

Twenty FCs were enrolled as participants (see Table 1). The duration of each interview was approximately 30–90 minutes. Data collection reached saturation at the 20th interview, when the relationships among the meaning units, categories, and themes were similar in the newly collected data and no new information was extracted from the interview.

Table 1. - Patient Characteristics (N = 20) ID Age (Years) Gender Education Marital Status Diagnosis Stage Current Treatment Chronic Disease Chemo Radio Targeted Immuno 1 77 Male Elementary Married Gastric IV Yes No No No H/T 2 68 Male Bachelor Married Esophageal III Yes Yes No Yes H/T, DM, HD 3 74 Male High school Married Lung IV Yes No Yes Yes 4 75 Male High school Married Bladder II Yes Yes No No H/T, HD 5 70 Male Elementary Married Esophageal III Yes Yes No No HD 6 68 Female None Married Colorectal IV Yes No Yes No 7 82 Male Bachelor Married Colorectal III Yes No Yes No DM, HD 8 80 Male Elementary Married Colorectal III Yes No Yes No 9 70 Male Associate Married Lung II Yes No No No 10 72 Male High school Married Colorectal IV Yes No Yes No Parkinson 11 69 Female None Married Lung III Yes No Yes No DM 12 84 Male Elementary Married Lung III Yes Yes Yes No H/T, HD 13 77 Female Elementary Married Lung IV Yes No Yes No H/T, DM 14 75 Female Elementary Married Colorectal III Yes No No No H/T, HD 15 96 Female Elementary Widowed Lymphoma III Yes No Yes No 16 66 Male Bachelor Married Cholangiocarcinoma IV Yes No No No Hepatitis C, liver cirrhosis 17 76 Female Elementary Married Colorectal IV Yes Yes Yes No 18 79 Female Elementary Widowed Schwannoma IV Yes No Yes No H/T 19 71 Female Elementary Married Lung III Yes No No Yes HD 20 76 Female Elementary Married Gastric IV Yes No No No H/T

Note. Chemo = chemotherapy; Radio = radiotherapy; Targeted = targeted therapy; Immuno = immunotherapy; H/T = hypertension; DM = diabetes mellitus; HD = heart disease.

Data Analysis

Data analysis was conducted using content analysis (Graneheim & Lundman, 2004). The participants, who were of diverse genders and ages, expressed their caregiving experiences. The findings were confirmed by the authors, who were all trained in qualitative research, through peer debriefing. The interviews were audio-recorded, and detailed field notes were taken. The text was reviewed word-by-word.

The analysis steps form a well-known method that determines the presence of codes, categories, and themes within text data in a qualitative study (Graneheim & Lundman, 2004). Two of the authors read and analyzed all of the interviews independently. These two researchers read all of the transcripts repeatedly to immerse themselves in the caregiving experiences of the participants to achieve an authentic sense of these experiences. The analyses focused on extracting meaningful units from the text and then inducting categories from these units. The authors discussed and reached an agreement on how to label the themes.

Rigor

Data trustworthiness was ensured using several strategies (Graneheim & Lundman, 2004; Lincoln & Guba, 1985). For credibility, the first author was trained to conduct qualitative interviews and used face-to-face, open-ended questioning. Peer debriefing was used to ensure that themes and categories were substantiated by the data. An audit trail of all documents used in data collection and analysis was recorded and made accessible to ensure dependability. Rich descriptions and the data analysis procedure were described in detail to ensure confirmability. Detailed descriptions of the research situation and methods were provided to help assess the transferability of the findings and meanings to others in similar situations.

Results Demographics

Twenty FCs of older patients with cancer at home were enrolled as participants and interviewed in this study. Their demographics are presented in Tables 1 and 2. In terms of patients, the average age was 75.3 years; nine were women, and 11 were men; and over half had either colorectal (30%) or lung (30%) cancer. All of the patients were receiving chemotherapy, with some also receiving other treatments such as radiotherapy, targeted therapy, and immunotherapy. Most (70%, n = 14) also had chronic diseases (Table 1).

Table 2. - Family Caregiver Characteristics (N = 20) ID Age Gender Education Marital Status Relationship With Patient Occupation Previous Experience Daily Care Time (Hours) Duration (Months) Care Model 1 46 F Bachelor Married Child Part-time No 2 6 Nonindependent care all day 2 64 F High school Married Spouse Unemployed No 18 7 Alternative care 3 65 F High school Married Spouse Unemployed Yes 24 7 Independent care all day 4 40 M Bachelor Single Child Unemployed No 3 6 Nonindependent care all day 5 39 F Bachelor Married Child Part-time No 6.5 2 Alternative care 6 47 F High school Divorced Child Employed Yes 7 6 Alternative care 7 77 F Bachelor Married Spouse Unemployed No 24 48 Independent care all day 8 48 F High school Married Daughter-in-law Employed No 7 12 Alternative care 9 70 F Associate Married Spouse Employed No 8 1 Independent care all day 10 63 F High school Married Spouse Unemployed Yes 24 132 Independent care all day 11 42 F Associate Married Child Employed No 7 60 Alternative care 12 40 F Bachelor Single Child Employed No 1 12 Alternative care 13 54 F High school Married Child Unemployed No 3 36 Alternative care 14 52 F Associate Married Daughter-in-law Unemployed No 4.5 6 Nonindependent care all day 15 65 F Doctor Married Child Employed Yes 5 6 Nonindependent care all day 16 56 F Bachelor Married Spouse Unemployed No 20 6 Independent care all day 17 46 F High school Divorced Child Unemployed No 24 8 Independent care all day 18 49 F Doctor Married Child Part-time No 24 12 Independent care all day 19 46 M Bachelor Married Child Employed No 8 2 Alternative care 20 26 F Master Single Grandson Unemployed No 24 2 Nonindependent care all day

Note. F = Female; M = male.

In terms of the participants (FCs), their average age was 51.8 years, most were female (90%, n = 18) and were either the child (55%, n = 11) or spouse (30%) of the care recipient, three quarters (75%, n = 15) were married, and half (50%, n = 10) were employed either full- or part-time. Most of the participants did not have previous caregiving experience (80%, n = 16). The average number of hours of care provided per day was 12.2 (SD = 9.1), and the average duration of care was 18.9 months. One third (35%) of the participants did not have another family member who could also help with caregiving and were thus responsible for providing full-day independent care (Table 2). The three themes that emerged from the content analysis results are summarized in Table 3.

Table 3. - Caregiving Experiences of Family Caregivers of Older Patients With Cancer at Home Theme Category Example of Quotes 1. Increased information needs and challenges in diet preparation and treatment decision making (1) Diet preparation as a major challenge It is more difficult for me to prepare food for the patient…. (C11)
We have been challenged with all kinds of cooking methods.... He (patient) drank soup because drinking soup is easier for him.... (C14) (2) Lack of information and medical knowledge for decision making He did not say anything [about the treatment plan.] “How could we make decisions then?” He should [have] provide[d] some information so that we could make correct judgments…. (C15) 2. Personal and patient-induced emotional stress (1) Patient effect on family caregiver emotions Sometimes, I also feel unwell, and he would get mad and shout at me [from upstairs]. But [However,] he would soon come down…. (C7) (2) Family caregivers lose patience Sometimes I would lose my cool [become angry] and patience to an extent…. However, I knew that she was sick and feeling unwell. “What could I do?”… (C17) 3. Life rebalancing through the care experience (1) Finding methods for relieving stress I am a cheerful person, and I listen to music and watch TV dramas…. Those activities are easy methods [ways] for me to release [my stress]…. (C10) (2) Changes in the modes of interaction I took care of him [the patient] like a baby. I treated him as if he was a glass doll…an infant, [as though he was] a mother who just gave birth and sitting the month. (C16) (3) Adjusting to a new pace of life There is no choice, you must adjust it, so I have re-arranged all my schedules. (C3)

Note. FC = family caregivers.

Increased Information Needs and Challenge in Diet Preparation and Treatment Decision Making

Despite the easy access to information in modern society, medical knowledge tends to be relatively complex and professional in nature. Thirteen (65%) of the participants identified diet preparation as a major challenge in their care experience, and eight (40%) noted they lacked accurate medical knowledge for decision making. Medical professionals should endeavor to provide clearly understandable information to patients with cancer and their families to enable them to make appropriate treatment decisions, which may increase treatment effectiveness.

Diet preparation as a major challenge

Cancer treatment is a long and painful process. A patient's body is weakened by cancer, and they must cope with the side effects of medical treatment. Patients with cancer often experience side effects such as an altered appetite, lack of appetite, and nausea. A major challenge for caregivers is motivating patients with cancer to eat to improve their nutritional status and enhance their immune system. Sixty-five percent of the participants indicated that older survivors of cancer require dietary knowledge and suggested hospitals should provide more information on nutrition.

A 54-year-old participant who had cared for a patient with lung cancer (77 years old) for 3 years stated:

What our family does not know is what kind of food should be prepared. She has lung cancer. “What are the foods that should be prepared for her?” “Which foods are better for her?” We felt inadequate about this aspect of caregiving. Can the hospital provide more healthy recipes or…? (C13)

A participant who had cared for her mother for 2 years and had been diagnosed with schwannomas in her left hand for 1 year stated that her mother was a fussy eater, which increased the difficulty of providing care. She stated:

The difficult aspect is…hmmm…[her] diet. It was extremely difficult…. She was a very picky eater. I could hardly find anything for her to eat. That is right. She usually cooked for herself…. I could only try to convince her to eat high-protein food. (C18)

Patient tastes may change because of their disease. To encourage their patients to eat more and stay healthy, caregivers must innovate and continually make changes to their patient's diet or attempt new cooking methods. One participant who had provided care to her mother-in-law with colorectal cancer for 6 months indicated that preparing food for her patient was difficult as the patient was physically weak and had poor dental conditions. She stated:

She (the patient) felt that…her teeth and gum[s] were not connected. She felt that chemotherapy was very tiring. There are things that are necessary for her to do…but she couldn't do them. She could hardly chew and barely ate…. We experimented with various cooking techniques…. She mostly only ate soup because it was easier for her…. (C14)

A 77-year-old participant stated that her husband (82 years old) had colorectal cancer for 2 years. After he became ill, his appetite declined, and she felt stressed by having to prepare three meals a day. She could not sufficiently vary his diet. She stated:

(The patient's) appetite was poor. No one could blame him…. I could not think of what to prepare. I did not know that I would run out of ideas. Now, I do not know what to do. (C7)

Lack of information and medical knowledge for decision making

Favorable doctor–patient interactions and communications may benefit patient treatments. Family members' emotions should also be considered because they find it difficult to make decisions when affected by doubts. Many (40%) of the participants indicated they lacked the accurate medical information necessary to make decisions. A 65-year-old daughter who had provided care for 6 months to her mother with lymphoma expressed feeling emotionally affected and panicked when her mother was first diagnosed. However, she did not receive further explanations from her doctor and felt hurt. She stated:

Uh…Initially, when we first received the diagnosis, we felt a mix of emotions. In addition, we did not understand the disease, so we had many questions. At the beginning, [the doctor] did not address our problems, give us direction, or provide us with good suggestions. He did not say anything [about the treatment plan.] “How could we make decisions then?” He should [have] provide[d] some information so that we could make correct decisions. I feel that the counseling aspect was implemented very poorly…. I know that the doctor did not like my communication attitude.... (C15)

Another participant stated that her 70-year-old father had esophageal cancer for 2 months. As the cancer had only been recently diagnosed, there were many treatments that family members needed to understand, discuss, and decide upon. They did not know what the best decision was because of incomplete information. She stated:

The current situation in choosing a treatment is first understanding the possible impacts of each treatment…A, B, and C. The side effects should be explained before making decisions. It should not, well, I definitely...I don't want radiotherapy. Afterward, the radiotherapy doctor told us about (the side effects)…. (C5)

Personal and Patient-Induced Emotional Stress

Coping