Korean American Patients’ and Family Caregivers’ Sources of Social Support and Perceptions of Cancer and the Caregiving Role: A Theory-Driven Qualitative Study

Cancer is the leading cause of death for the Asian American population, which is the fastest growing population in the United States (U.S. Census Bureau, 2021). Among Asian American ethnic groups, Korean American people bear significant cancer burden because they have the highest incidence rates of stomach cancer, are the least likely to undergo cancer screenings, and often do not have health insurance (Chen et al., 2022; Hastings et al., 2015). In addition, with the increasing complexity of cancer management and the growing reliance on caregivers to provide necessary care, the burden of the disease extends to the family caregivers, thereby affecting the patients’ and caregivers’ quality of life (QOL) (Guerra-Martín et al., 2023; Kalter et al., 2018; Northouse et al., 2012). Several studies noted the importance of improving QOL in patients with cancer in racial and ethnic minority groups because they face cultural challenges (e.g., language barriers, trying to understand the healthcare system) in seeking professional help, building social support, and enlarging social networks (Wen et al., 2014; Yoon et al., 2016).

Particularly for Korean American patients with cancer, few studies have defined sources of social support or provided insights into patients’ and family caregivers’ perceptions of cancer or of the caregiving experience. Two psychosocial factors—higher social support (Lim, 2014; Lim et al., 2008; Lim & Zebrack, 2008; Yoon et al., 2016, 2018) and lower negative perception of illness (Lim, 2014; Yoon et al., 2018)—lead to higher QOL among Korean American patients with cancer. However, these studies did not specify which sources of social support were used, and they did not properly define negative perceptions of illness or the caregiving role. For Korean American family caregivers, findings showed that social support and the perception of caregiving did not influence their QOL (Yoon et al., 2018), which is inconsistent with findings of caregivers from other ethnic groups whose social support predicted or positively affected their QOL (Brand et al., 2016; Sammarco & Konecny, 2008).

With limited published literature, and accounting for cultural values of and challenges faced by Korean American people, the authors of the current study saw the need for a qualitative study to fill the knowledge gap in the perceptions of cancer and caregiving roles among Korean American patients with cancer and their family caregivers. In addition, exploring sources of social support, which is known to affect QOL, is essential. This study aimed to develop culturally appropriate interventions to enhance QOL for patients with cancer and their family caregivers who share similar cultural values as Korean American people, such as Chinese American people or other racial or ethnic minority groups facing cultural challenges in a new country.

The current study applied the sociocultural stress and coping model adapted from Lazarus and Folkman’s stress-coping theory (Aranda & Knight, 1997) to understand the identified psychosocial factors’ effects on the QOL of Korean American patients with cancer and their family caregivers. The model has been tested in several randomized clinical trial studies among patients with cancer and their family caregivers (Northouse et al., 2007, 2013; Titler et al., 2017). The model asserts that individuals respond to stressful events, such as being diagnosed with cancer or taking on the caregiving role, by appraising the events (e.g., cancer perceptions) that trigger them to use resources and coping strategies (e.g., social support), which can affect primary outcomes, such as QOL. Antecedent factors, such as personal (e.g., demographics, cultural values), social (e.g., type of dyadic relationship), and illness-related (e.g., medical characteristics) factors, can also affect the stress coping process and QOL. The current study focused on understanding the secondary outcomes, appraisal of illness or caregiving, and coping resources (e.g., social support).

Methods

Study Design

A descriptive qualitative study guided by the sociocultural stress and coping model was conducted to understand the sources of social support and the perceptions of cancer and caregiving roles among Korean American patients with cancer and their family caregivers (Aranda & Knight, 1997). The study was approved by Loyola University Chicago Institutional Review Board (ethical approval #209757090817).

Participants and Setting

Convenience sampling was used to recruit participants using flyers displayed at Korean American community health agencies and Korean Christian churches. Participants who showed interest were contacted and given details about the study via telephone or in person. A few participants were recruited through snowball sampling. Selection criteria for participants included the following: (a) self-identified as a Korean American person, (b) was diagnosed with cancer within the past five years (specific to patients), (c) was aged 18 years or older at the time of diagnosis, (d) spoke English or Korean, and (e) was identified by the patient as their primary source of emotional and/or physical support (specific to caregivers). Because there is limited knowledge about Korean American patients with cancer and their family caregivers in general, this study did not limit inclusion based on cancer type, stage, or treatment type. A total of 14 dyads of patients and their family caregivers were contacted; of these, two dyads did not meet the eligibility criteria because one of the partners did not self-identify as a Korean American person.

Data Collection

Semistructured, open-ended interview questions were developed based on the significant findings from one of the authors’ (H.Y.) previous studies (Yoon et al., 2018), which was guided by the sociocultural stress and coping model. The questions explored sources of social support, as well as perceptions of illness (for patients) and caregiving (for caregivers). Two bilingual Korean American research nurses conducted the interviews in Korean or English in person or via telephone. Informed consent forms were collected from all participants prior to the interview. Interview data were collected using a digital audio recorder, and the interview process lasted 25–45 minutes. Recruitment ceased upon data saturation at the 10th patient and the 9th caregiver, when no new information was obtained. Field notes were taken after each interview to outline the key themes that emerged.

Data Analysis

Data were analyzed using the six-step thematic analysis framework (Braun & Clarke, 2006) after audio recordings were transcribed verbatim and translated from Korean to English. In phase 1, the transcripts were read repeatedly for familiarization while noting initial thematic ideas. In phase 2, initial codes were generated from the extracted data and codes were collated into categories. During phase 3, collated codes were categorized into themes. In phase 4, each theme was reviewed in relation to the coded extracts. In phase 5, the essence of each theme was defined and renamed accordingly. In phase 6, a concise and coherent analytic narrative report was presented. Using verification strategies (Morse et al., 2002), two qualitative researchers determined the reliability and validity of the study. Any discrepancies in the interpretations and codes were discussed and finalized by the researchers.

Findings

Sample Characteristics

A total of 12 (N = 24; 12 patients and 12 caregivers) eligible Korean American patient–caregiver dyads (i.e., pairs) participated in the study from October 2018 to February 2019. Most participants (n = 22) completed the questionnaire and interviews in Korean. The average age of the patients and caregivers was 56.5 years and 50.7 years, respectively (see Table 1). The majority of the participants were female and married, and had at least four years of college education. Almost half of the patients had been diagnosed with breast cancer, followed by prostate, skin, colorectal, lung, and thyroid cancers and lymphoma. Most participants were born in South Korea, had lived in the United States for an average of 28 years, and spoke Korean at home. Family caregivers were spouses (n = 8) or adult children (n = 4).

Sources of Social Support: Patients

The coded interview data generated six different types of social support resources for patients (see Table 2). The most common sources of support came from attending Korean cancer support programs, talking to family members or friends, and practicing religion (see Table 3).

Cancer support programs: Cancer support programs were one of the main sources of support for patients and generated the following two subthemes: (a) a place to express feelings and receive emotional support and (b) facing stigmatized attitudes toward cancer. Patients who participated in cancer support programs had positive experiences. These programs allowed patients to share thoughts and feelings with others in similar situations, which provided them with comfort, encouragement, and emotional support during cancer care. A female patient with skin cancer said, “We talk and pray together, providing comfort and healing to each other.” The program not only provided a place for patients to talk about their feelings, but also helped them to form coping mechanisms and more positive outlooks regarding their cancer. A female patient with breast cancer said, “[It] enabled me to have a positive mindset.”

Another subtheme that emerged was a stigmatized attitude toward cancer at the beginning of the cancer program. In the early stages of the program, certain patients expressed the difficulties that they faced in openly discussing their emotions. Establishing meaningful connections and expressing their feelings proved to be a gradual process, primarily because of the cancer-related stigma deeply ingrained in the Korean culture. Having cancer in Korean culture is often perceived as a form of failure, which brings about the possibility of social isolation within the patient’s own racial group. One female patient with breast cancer said, “I feel that when Koreans get diagnosed with cancer, most of the time they want to hide that. They feel like they have failed in life, including me.” A female patient with lymphoma said, “At first, talking about myself in front of people was a scratch to my pride, but knowing that other people are also going through the same things became an encouragement and comfort.”

Family—receiving emotional support from adult children: For patients, family was identified as one of the most used sources of support outside of cancer support groups (n = 5). Adult children played a vital role in providing emotional support for patients. Even if the patient’s spouse was the main caregiver, the majority of emotional and practical support came from their adult children. Adult children provided support by translating medical documents, making doctors’ appointments, speaking with medical personnel, and spending time with the patient.

Religion—coping with cancer: Engaging in religious practices, such as praying and placing faith in God, helped patients in their journey of coping with cancer by enabling them to overcome fear, find peace, and be less afraid of death. One female participant with breast cancer said, “I’m less afraid of the concept of death now after having gone through cancer. . . . I was able to overcome my fears [thanks to] God.” Another patient with lung cancer mentioned that fully relying on and trusting in God allowed her to perceive cancer in a new way and said, “God has given me a second chance; I think that He will take control.”

Friends—feeling comfort in sharing with someone with the same diagnosis: Patients expressed their gratitude for the support they received from friends within their church community, particularly in the form of food deliveries. However, a deeper connection was established with friends who also had been diagnosed with the same cancer. This bond fostered a greater sense of closeness, leading to increased comfort and mutual support. Consequently, the support extended beyond emotional solace, encompassing the exchange of valuable medical advice.

Sources of Social Support: Caregivers

Religion—coping with the caregiving role: Among the various sources of social support, religion was the primary resource for caregivers, but only among spousal caregivers. Spousal caregivers leaned on their faith in God to seek comfort and receive the mental support required to sustain their caregiving responsibilities. One male spouse caregiver said, “As a Christian, all mental support is from God. As a patient’s husband, I try to keep her, watch her, take care of her, 100%. . . . Sometimes I [get] tired, but I [leave] everything [to God] and let God do it.” A female spouse caregiver said, “It was hard emotionally. I used to be stressed about that. . . . I overcame it with the help of my religion.” Another female spouse caregiver noted, “We were able to overcome this since we are believers in Christ and let God take control—but it was still hard. It’s not just the patient who is ill; the caregiver goes through the same emotional challenges.”

Friends—emotional providers for caregivers: Caregivers acknowledged that they received greater social support from their friends compared to their family members. Friends extended emotional support through prayers and words of encouragement to uplift the caregivers. In addition, the caregivers expressed a preference for confiding in friends about their caregiving challenges, instead of in family members. The majority of those who relied on friends as their primary sources of social support were adult children. One adult child caregiver said, “Church members and friends give me words of encouragement and pray for me. Personally, I think that I felt more encouraged by people who [knew] only me, rather than those who knew the patient as well.”

Matching patients’ and their caregivers’ sources of social support: Upon analysis of patients and their caregivers, three dyads (one mother–daughter dyad, two spousal dyads) shared similar sources of support, such as practicing religion and talking to church members and friends. The majority of the dyads used sources of support that differed from those of their partner. Five caregivers were without any sources of support during their caregiving role, whereas their matched patients used cancer support groups, talked to family members or medical personnel, and relied on religion.

Patients’ Perception of Illness

Two themes emerged regarding patients’ perceptions of cancer: (a) negative view of cancer and (b) acceptance of life with cancer. The first theme captured a negative perspective toward cancer, primarily observed at the time of diagnosis. Upon receiving the diagnosis, patients expressed denial, raised questions, and experienced fear and anxiety. Accepting their new cancer diagnosis was challenging. A female patient with breast cancer said, “‘I don’t know why this is happening to me,’ I thought, ‘Oh, I’m just slowly dying like this. . . . I don’t have control over my life.’” After surgery or during chemotherapy, radiation therapy, or hormone therapy, patients gradually learned to cope and live with cancer, and viewed it as a manageable and controllable condition. Positive perceptions came through using sources of social support, such as a cancer support program, religion (e.g., praying, believing in faith), healthcare professionals, adult children, and spouses. However, patients’ perceptions of uncertainty about life coexisted among the process of accepting cancer. A male patient with lymphoma said, “Looking back, I’m grateful that I was able to find it at an early stage and receive adequate treatment. [Cancer] is something over which I have control, and I’m thankful for that” (see Table 4).

Perception of Caregiving Role

The following two themes emerged from the way family caregivers perceived their caregiving role: (a) an obligatory and challenging responsibility and (b) an opportunity to give back.

An obligatory and challenging responsibility: The majority of caregivers viewed their role as a responsibility they were culturally required to involuntarily take on as a family member. Caregivers often considered themselves to be the only appropriate caregiver among family members, and, therefore, were expected to take care of the patient. Growing up in an immigrant family led adult children to feel responsible for looking after their parent with cancer. Some caregivers mentioned that they felt discouraged because the care they provided was unnoticed and not appreciated by family members. Often, the caregiving role was associated with physical and emotional exhaustion, but the caregivers could not ask for help because the focus was on the patient. One daughter said, “It is a role that I would take on without question, as well as something I can’t refuse.” Another daughter said, “Because my mom is a Korean immigrant, I have always had a sense of responsibility over my mom, even prior to her diagnosis of cancer. . . . I don’t really have a choice [in being her caregiver].”

An opportunity to give back to family: Although most caregivers regarded their role as a burden or responsibility, some caregivers, particularly male caregivers, expressed their appreciation for taking on the role. A second-generation Korean American adult child caregiver saw their caregiving role as an opportunity to give back to the patient (parent), who had always sacrificed for the family as an immigrant. Because their parents were not fluent in English, this adult child caregiver was the main translator who helped the patient make decisions. Another adult son said,

I actually like the role of being a caregiver because I know that being first-generation Korean Americans, my parents would have had a hard time knowing what to do. . . . It was never a burden for me; I’m glad that I was able to be there for them, just as they have always been there for me.

From a spouse’s perspective, a husband mentioned that being a caregiver led to a closer relationship with the patient because the caregiver and patient relied or depended more on each other for support.

Discussion

This study, guided by the sociocultural stress and coping model, shows how antecedent factors—such as English proficiency; the degree to which individuals embraced Korean values; the nature of the dyadic relationship; and the patients’ treatment stage, cancer stage, or treatment type—influence the sources of social support and the perceptions of cancer or the caregiving role among Korean American patients with cancer and their caregivers (see Figure 1). A study by Yoon et al. (2018), which used the same theoretical model, identified that the antecedent factors and appraisals influenced QOL among Korean American patients with cancer and their family caregivers. The current study’s findings extend the knowledge that the model can be used in future interventions by providing appropriate social support and self-efficacy interventions for caregivers.

Consistent with other studies of Korean American patients with cancer, sources of social support were limited but included religion and family members (Choi et al., 2012; Lee et al., 2013; Lim et al., 2013; Yoon et al., 2016). A distinct finding in the current study compared to other studies is that this study’s patients had experiences with cancer support groups that were offered in their own language. Previously published literature demonstrated limited knowledge on the effectiveness of such groups and how patients actually feel about them (Ashing et al., 2003; Ashing-Giwa et al., 2004; Choi et al., 2012; Lee & Jin, 2013). Therefore, the current study’s findings support the idea that if social support programs are offered in the patient’s primary language, the patient will express a higher sense of social support and higher satisfaction with the program, which can directly and indirectly affect the patient’s QOL.

Compared to patients, family caregivers had limited sources of social support, and the majority of them were not using any sources of social support. For those who did use sources of social support, the current study found that adult children caregivers preferred to share their feelings and challenges with friends who did not know the patient. This finding is consistent with the finding that non-Hispanic young adult caregivers of patients with cancer preferred to talk to friends about their emotions instead of family members (Waters et al., 2021). Spousal caregivers used religious activities to cope with their caregiving role. This finding is consistent with the finding that Hispanic caregivers and Korean caregivers living in Korea indicated a positive association between practicing religion and QOL (King et al., 2022; Kwon et al., 2023).

Several studies discussed different types of social support and the differences in the caregiving burden between adult children caregivers and spousal caregivers because adult children caregivers are younger, need to function in multiple roles, and are less prepared to become a caregiver (Fenton et al., 2022; Waters et al., 2021). Therefore, additional interventions need to reflect diverse caregivers’ characteristics and be tailored to their needs accordingly.

The current study’s results showed that patients used more sources and a wider variety of sources for social support than family caregivers. This contrasts with White caregivers of patients with cancer who used more external sources, such as painting and craft groups, than patients (Wong et al., 2014). Limited use of external social support sources could be explained by the majority of caregivers’ primary language being Korean, preventing them from participating in services, such as respite care or caregiving training, because these services were not provided in Korean. This finding is consistent with Korean American caregivers of patients with dementia (Kim et al., 2019). A study by Ketchum et al. (2023) found that language was a key factor for seeking caregiving services among immigrants, and that caregivers are more likely to trust providers who speak the same language. Therefore, a majority of patients and their caregivers relied on informal social support, which highlights the need for a better balance between formal and informal support to lessen physical and psychological stress in the Korean American population. The current results reveal the complexity in providing social support for caregivers in racial and ethnic minority groups, and the need to consider language, cultural fit, and convenience of the social support resources.

Consistent with previous patients with cancer across other ethnic origins (Guan et al., 2020), the current study’s participants had negative views of their cancer at the time of diagnosis. By using various sources of social support, patients appraised their illness more positively, gradually accepted their cancer diagnosis, and continued to use social support resources as a coping mechanism. Therefore, providing various sources of social support could improve patients’ overall experience with cancer and affect their health outcomes and QOL.

The majority of caregivers perceived their role as a part of their responsibility as a family member. These findings were consistent with those of a systematic review of Korean American caregivers who expressed that the caregiving role is taken on with a sense of duty following the values of Confucianism (e.g., obedience, respect) rather than voluntarily, and that the role often brought about stress (Kwon et al., 2023). Confucianism is embedded in Korean values and has a significant relationship with QOL and depression among Korean American caregivers of patients with cancer (Yoon et al., 2018). Those who held Korean values as a lower priority had higher QOL, and those who had more Western values (e.g., self-reliance, autonomy, assertiveness) had higher QOL and less depression (Yoon et al., 2018). In addition, given that Korean American immigrants are four times more likely to have depression than White or African American residents in the United States (Jang & Chiriboga, 2010), Korean American caregivers’ challenges need to be addressed by healthcare workers.

Limitations

Study participants were limited to Korean American residents living in Chicago, Illinois, and surrounding suburban areas where the patients had access to cancer support programs in Korean. This may influence the generalizability of the study, and findings could be limited. The patient population was predominantly female and diagnosed with breast cancer. Although this could be an accurate representation of the most common profile among Korean American patients with cancer, there is a possibility that these findings are limited to certain patient populations.

Implications for Nursing

Clinicians can and should encourage patients with cancer from racial and ethnic minority groups who have limited English proficiency to attend social support programs offered in their native language during cancer survivorship to enhance their QOL. To do this, consolidated efforts from clinicians and community healthcare providers with cultural knowledge of the racial or ethnic minority group are essential for introducing resources and providing support services in the primary language. Community churches and community health agencies are practical places to deliver health resources and to reach members of the racial or ethnic minority populations. In addition, because the findings show cultural challenges during cancer and caregiving experiences, it is critical for healthcare providers to be culturally sensitive about providing social support services that are applicable for patients and caregivers in the racial or ethnic minority group.

Caregiving duties and responsibilities appeared to be burdensome for Korean American caregivers. Most of them worked full-time and stated they did not have time to set aside for themselves. Therefore, healthcare professionals need to assess caregivers’ psychological status during patient visits. Suggesting social support programs may not be ideal for caregivers because they already lack free time, but social support was not a factor in determining QOL and depression among caregivers (Yoon et al., 2018). More innovative strategies tailored to caregivers’ circumstances are needed to allow caregivers to relieve their burden and stress.

Conclusion

By applying the sociocultural stress and coping model, the study attempted to understand sources of social support and how Korean American patients with cancer and their family caregivers perceived cancer or the caregiving role. Additional research could use the model to guide interventions to improve QOL for patients with cancer from racial and ethnic minority groups and their caregivers by providing sources of social support that are feasible to their culture, which could improve patient experiences with cancer and caregivers’ experiences with their role.

About the Authors

Hyojin Yoon, PhD, RN, is a senior lecturer in the Alice Lee Centre for Nursing Studies in the Yong Loo Lin School of Medicine at the National University of Singapore; and Emily Lim, RN, BSN, is a senior utilization reviewer at Enlyte Medical Consultants Network in Seattle, WA. This research was supported, in part, by funding from Loyola University Chicago. Yoon contributed to the conceptualization and design. Both authors completed the data collection, provided statistical support and the analysis, and contributed to the manuscript preparation. Yoon can be reached at hyoon@nus.edu.sg, with copy to ONFEditor@ons.org. (Submitted November 2022. Accepted June 29, 2023.)