Cancer is a major cause of illness and death globally, accounting for 9.9 million deaths worldwide in 2020 (Sung et al. Reference Sung, Ferlay and Siegel2021). In Australia, cancer accounted for almost 30% of deaths in 2020 (Australian Institute of Health and Welfare 2019). There is recognition that family members and friends (i.e., informal caregivers) play a key role in providing necessary practical, physical, informational, and psychosocial support across the disease trajectory for people diagnosed with cancer (Sun et al. Reference Sun, Puts and Haase2021). Caregiving can be rewarding, although the significant emotional impact of being a cancer caregiver has also been recognized (Kent et al. Reference Kent, Rowland and Northouse2016; Shaw et al. Reference Shaw, Butow and Sze2013a). Caregivers are vulnerable to physical and emotional exhaustion, feelings of ill-preparedness, and persistent levels of anxiety and distress that are higher than that of the general population (Shaw et al. Reference Shaw, Harrison and Young2013b). They are often tasked with managing the care recipient’s symptoms, side-effects of treatment, and physical decline, alongside juggling competing duties, and managing their own emotions about the cancer and the unpredictability of the future (Janda et al. Reference Janda, Steginga and Dunn2008).
Access to adequate cancer- and care-related information across the cancer trajectory has been associated with improved health-related quality of life for care recipients (Høeg et al. Reference Høeg, Frederiksen and Andersen2021) and improved psychological well-being for caregivers (Møller et al. Reference Møller, Jespersen and Lindahl-Jacobsen2020). However, caregivers frequently report unmet needs related to accessing comprehensive information about the diagnosis, the health system, treatment options, and how to manage at-home care when providing support to someone with cancer (Sklenarova et al. Reference Sklenarova, Krümpelmann and Haun2015; Wang et al. Reference Wang, Molassiotis and Chung2018). Caregivers have described obtaining cancer-related information largely from health-care providers but also needing to dedicate significant amounts of time to researching information through channels including charities, the Internet, and peers (Kinnane and Milne Reference Kinnane and Milne2010; Morris and Thomas Reference Morris and Thomas2001).
People affected by cancer from culturally and linguistically diverse (CALD) backgrounds, described as those who speak a language other than the predominant language of their residential country, have been shown to have higher unmet information needs compared to their English-speaking counterparts (Butow et al. Reference Butow, Bell and Aldridge2013). Caregivers from CALD communities have identified additional language, cultural, and communication barriers that negatively impact their capacity to communicate with, and access information from, providers. A qualitative study with patients and caregivers from CALD communities that explored experiences of transition to palliative care found communication challenges involving difficulty understanding the meaning of words that did not directly translate to their language (e.g., “palliative”) (Kirby et al. Reference Kirby, Lwin and Kenny2018). Difficulty discussing pain management without an interpreter was also identified (Kirby et al. Reference Kirby, Lwin and Kenny2018). Similarly, a recent study of Arabic people with cancer and their caregivers found carer challenges understanding cancer-related information given by providers, as well as those presented in written format (Alananzeh et al. Reference Alananzeh, Kwok and Ramjan2019).
Research on the information needs of people affected by cancer from CALD communities has emerged (Alananzeh et al. Reference Alananzeh, Kwok and Ramjan2019; Lambert et al. Reference Lambert, Loban and Li2021; O’Callaghan et al. Reference O’Callaghan, Schofield and Butow2016; Wiley et al. Reference Wiley, Piper and Butow2018); however, few studies have examined the information needs of caregivers of people from CALD backgrounds (Schaffler et al. Reference Schaffler, Tremblay and Laizner2019). To date, there exists a dearth of literature that examines the information needs of caregivers of people with cancer residing in Australia. Given that over 1 in 4 people in Australia was born in a foreign country (Australian Bureau of Statistics 2021a), there is a need to better understand their information needs and how these can be addressed, in a cancer context. Thus, the current study focuses on caregivers of people with cancer from an Arabic and Chinese background, as these are 2 of the largest language groups residing in Australia (Australian Bureau of Statistics 2021b). The aims of the study were to qualitatively explore experiences with cancer-related information among caregivers of people with cancer from CALD communities.
Method
A qualitative design comprising semi-structured interviews was used to explore carers’ information needs. Eligibility criteria for participants included those who (a) were currently providing, or had provided, unpaid care to someone diagnosed with cancer (i.e., the care recipient), and whose care recipient spoke Chinese or Arabic as a first language, (b) were age 18+ years, and whose care recipient was 18+ years, (c) had provided care to the person with cancer within the preceding 3 years, and (d) were able to speak English without an interpreter. The study received ethics approval from the La Trobe Human Research Ethics Committee (HEC20465).
Data collection
Participants were recruited by the LOTE Agency, a Melbourne-based market research agency. Eligible participants were sent a consent form by LOTE and were then contacted by the researcher to arrange an interview via teleconference (Zoom). Verbal consent was sought at the commencement of each interview, and interviews were audio-recorded. A semi-structured interview schedule was used to guide the interview. Participants were asked about the emotional impact of caring, and the kinds of informational support they had needed and/or accessed. Interview length ranged between 25 and 75 minutes. Data were collected between March and May 2021. All participants were given copies of their transcript for review.
Data analysis
Interviews were transcribed using Otter.ai transcription software. To ensure transcription accuracy, a researcher listened to each interview in full and corrected errors. To protect confidentiality, all participants were allocated a pseudonym. Braun and Clarke’s (Reference Braun and Clarke2006) 6-phase process of thematic analysis was used to analyze the data. The study utilized an exploratory, “data driven” approach, where codes arose from the data, as opposed to pre-determined questions or theory (Braun and Clarke Reference Braun and Clarke2006). Two researchers (MH and EY) familiarized themselves with the data through reading and re-reading the transcripts. A systematic approach was used to code all interviews. Codes were then grouped into potential themes, with constant comparisons with existing data to ensure relevance and accuracy in capturing meaning across the data. The research team reviewed and confirmed resultant themes through discussion. Meaning-making and insight into participant experiences were gained through applying an iterative, reflexive, and immersive process when examining the data. Researchers sought to maintain reflexivity by positioning themselves as a learner, and participants as the experts in their lived experiences, in addition to adopting the view the research was being conducted in partnership with participants (Berger Reference Berger2015).
Participant demographics
* Unclear/not provided by participant.
Results
Participant demographic information is shown in Table 1. Participants were aged on average 40.6 years (range 29–65; 3 participants did not report their age). Half the sample (n = 12) were of Arabic background, and the other half (n = 12) were of Chinese background. Majority of caregivers (83%) were female. Over one-third of participants provided care to a parent (41.67%).
Supporting quotes for themes and sub-themes
Six themes related to caregiver experiences with health information emerged from the analysis: (a) lack of information to meet their needs; (b) challenges understanding cancer- and care-related information; (c) proactivity to make sense of, and understand information; (d) interpreting information: formal and informal services; and (e) engaging with health providers to access information. Quotes to support the themes and sub-themes are presented in Table 2.
Lack of information to meet their needs
Caregivers identified a range of unmet information needs across the cancer trajectory. Participants identified unmet information needs at the start of treatment, when they managed the shock and uncertainty of the patient’s diagnosis. Furthermore, some participants found that health-care providers communicated information too slowly across all stages of treatment, which exacerbated their worry. Other caregivers also identified unmet information needs related to treatment options and decision-making for the care recipient. Unmet information needs related to how to best a provide care to the care recipient. This included managing food and diet. Information about the patient’s emotional needs including advice for managing their feelings, health anxiety, and difficult behavior was also required, and some indicated struggling to find appropriate guidance.
Challenges understanding cancer- and care-related information and unmet information needs
Although some caregivers reported satisfaction with information given by health providers, other caregivers reported difficulty understanding the cancer-related information they were given. (Table 2). The lack of understanding of cancer-related information was attributed to not having a background in medicine.
Proactivity to make understand information and build knowledge
Despite being able to speak English to varying levels of proficiency, caregivers in the study identified that difficulties with English impacted their ability to understand information and, consequently, had to invest significant effort making sense of information outside of appointments. Participants engaged in a number of strategies to ensure they could understand cancer-related information and to build knowledge. These strategies included: (a) searching for information online, (b) conferring with other sources to understand cancer-related information; and (c) writing questions in advance of appointments. These knowledge building strategies are described in the following sections.
Searching for information online
A number of caregivers described the challenge of not understanding cancer-related information during appointments, and to overcome this, they searched online to understand issues discussed during meetings with health providers. Caregivers contended that information provided in a second language was difficult to comprehend, particularly specialist medical terms. To overcome the language barriers, caregivers would search for medical term they had heard during medical appointments and translate these into their first language – Chinese or Arabic. Caregivers also spoke of asking the doctor to document English-language medical terms so that the caregiver and care recipient could search online for the meaning. Further, 1 caregiver stated that doctors and health services could not provide all the necessary information, and that it was the responsibility of the family members to seek cancer-related information online to support the care recipient.
Several caregivers discussed seeking information online about cancer as a means to reassure the care recipient of potential positive outcomes following cancer treatment. Another caregiver spoke of seeking information online about the prognosis to support well-being of the care recipient.
Conferring with other sources to understand cancer-related information
Although caregivers reported that doctors provided information about the cancer, they also sought clarification about the information supplied from other sources. Caregivers spoke of clarifying information with people in their social networks. One caregiver described contacting their General Practitioner to help them understand information about the cancer.
Implementing strategies to understand the care recipient’s health
Even when language did not present a barrier, participants went to considerable effort to understand medical terminology and the patient’s condition (Table 2). One participant closely monitored the care recipient’s medical charts and conferred with health providers. Another participant would analyze the care recipient’s test results to track prognosis and potential outcomes. Some participants also prepared questions for the next time they would speak with a doctor.
Interpreting information: Formal and informal services
In describing the role of formal interpreter services, as well as the caregiver’s role in informally interpreting information, 3 sub-themes emerged: (a) challenges with accessing, and quality of, formal interpreter services; (b) the caregiver as interpreter and information gatekeeper, and (c) caregivers filtering information when interpreting to the care recipient. These sub-themes are captured below.
Challenges with accessing, and quality of, formal interpreter services
Caregivers’ experiences with hospital interpretation services were mixed. Some participants were offered an interpreter, while other participants reported that hospital staff did not offer them access to formal interpreter services or could not recall if they had been given the option. For some caregivers, positive experiences were reported when health services ensured interpreters were available for the care recipient. However, other caregivers reported that health services did not identify a need for interpreters for the patient if the caregiver appeared to have a strong grasp of English. When interpreter services were offered, participants reported difficulty coordinating services with the schedule of doctor’s visit in the hospital room or stated that interpreters did not attend the scheduled appointment. When interpreter services were available, 1 participant reported the interpretation could be inaccurate.
Lack of access to an interpreter impacted care recipient’s quality of life, with 1 caregiver describing circumstances whereby neither they nor the patient could understand information about pain management since medical terminology was beyond their scope. Indeed, 1 caregiver identified interpretation as the main service hospitals could provide to better assist caregivers. Another caregiver assumed interpreter services would incur an out-of-pocket cost and, therefore, did not seek these services.
Caregiver as interpreter and information source for their care recipient
Many participants acted as an interpreter for the care recipient, relaying information between providers and the person with cancer. Some participants appeared to accept interpreting as their caregiving duty without question. However, caregivers also identified challenges when interpreting information for the care recipient. One participant reported anxiety about mistranslating information. Additional challenges included not being able to access all appointments or hospital areas, with this restricted access constraining caregivers’ capacities to interpret information for the care recipient.
Caregivers also described their role as an information source for the care recipient: they “recapped” cancer-related information for the care recipient. In this instance, although interpreters were available, the care recipient was unable to absorb information given to them and relied on the caregiver to repeatedly explain cancer-related information, which was a burden for the caregiver.
The caregiver as gatekeeper of information when interpreting to the care recipient
Several caregivers reported acting as gatekeepers of the information supplied by health-care providers when interpreting for the patient. For some caregivers, this was a protective factor, to support the maintenance of hope in the care recipient. The maintenance of a positive outlook by the patient was seen, by 1 caregiver, as critical to achieving an effective treatment outcome. Non-disclosure of the full details of the cancer diagnosis to the patient was considered protective of the care recipient’s emotional well-being, avoiding the loss of hope.
For other caregivers, acting as a gatekeeper of information appeared to be a strategy to avoid giving bad news to the person with cancer. Another participant reported filtering information to protect the patient from experiencing psychological distress and anxiety; filtering information was also used as a coping mechanism for themselves to manage their own frustration and anxiety about needing to interpret all the information.
Engaging with health-care providers to access information
Communication with health-care providers
The quality of the caregiver experiences when communicating with health-care providers to get information was mixed, with some caregivers reporting positive and others reporting negative experiences. Positive experiences included reports that providers made it easy to understand cancer-related information. One caregiver spoke of providers who explained treatment processes to the caregiver and the care recipient to enable them to understand potential health outcomes. Other caregivers reported that providers spent considerable time with the caregiver to help them understand that cancer is not an automatic death sentence and the affordability of treatment options available for the care recipient.
However, other caregivers reported wanting more information from health providers. Some caregivers spoke of not receiving enough information from providers about the cancer or the treatment process thereby exacerbating their distress. Other caregivers spoke of wanting more tailored advice to manage the care recipient’s discomfort while on treatment.
Caregiver capacity to ask questions and seek information from health-care providers
Caregivers’ capacity to ask questions of health-care providers in order to get the information they sought was mixed. Some caregivers were confident they had the skills to ask health providers to explain information in another way if they did not understand in the first instance. One caregiver spoke of writing down words in advance to ask the doctor to explain during interaction. However, other caregivers did not want to bother providers with their questions and believed asking questions about information they didn’t understand during an appointment would reflect poorly on them.
Cultural sensitivity and directness of providers when delivering cancer-related information
Cultural difference in preference for directness in communication with health-care providers was an issue raised by some caregivers. Several participants reported that it would be uncommon in their country of origin for providers to directly inform a patient that they have cancer and spoke of the need for sensitivity among providers when sharing cancer-related information with the patient and care recipient. Caregivers also reported that in their home country, doctors would disclose the cancer diagnosis to family members, rather than the patient themselves. Furthermore, caregivers described health providers in their home country as respectful of the person with cancer’s family members and their desire to disclose or hide the cancer diagnosis from the patient.
Preference for same language health-care providers
Caregivers identified the usefulness of having providers who spoke their native language. One caregiver described working with health providers who also spoke their native language and highlighted how this helped with the patient and carer understand information. One caregiver spoke of their preference for access to first language health providers as a means of facilitating ease and comfort with communication.
Discussion
The present study aimed to explore experiences with seeking and receipt of health information among caregivers of people with cancer from CALD communities residing in Australia. Although participants were generally satisfied with information given by providers, they also reported difficulty understanding the information, and many implemented a range of strategies to understand the care recipient’s diagnosis and treatment. Our findings are consistent with previous studies in which it has been suggested that caregivers from CALD backgrounds have additional unmet informational needs (Kirby et al. Reference Kirby, Lwin and Kenny2018; Lim et al. Reference Lim, Butow and Mills2019; Shaw et al. Reference Shaw, Shepherd and Durcinoska2016). Information needs were high at diagnosis and during treatment; caregivers wanted more information about processes and what to expect. Caregivers identified spending significant time and effort to seek and understand information outside of appointments with providers to build cancer-related knowledge. Findings highlighted the importance of health providers allocating enough time for caregivers to ask questions, record medical terminology for translation, and explain concepts that do not directly translate to attenuate the language barrier.
Caregivers in the current study reported that interpreter services were not often available or offered. Additional challenges were identified during in-patient stays where appointments and provider consultations did not involve adequate notice to organize an interpreter. Indeed, participants highlighted the need for consistent and timely interpreter services, and for providers to arrange these services, even for unscheduled hospital visits from doctors. Given the challenges identified by caregivers when understanding information, even for those with adequate English proficiency, advanced planning to ensure access to formal interpreters during patient–provider interactions would likely benefit both the care recipient and caregiver.
Similar to existing research (Schaffler et al. Reference Schaffler, Tremblay and Laizner2019), caregivers in the current study described acting as information gatekeepers – bridging and interpreting information exchanged between the care recipient and health providers. In these instances, there is the risk that cancer information is not accurately interpreted or comprehensively shared. Caregiver interpreters were likely to filter information about the diagnosis and prognosis from the care recipient, with reasons including facilitating a positive outlook and maintaining hope in care recipients, as well as avoiding their own emotional distress. The necessity for such information “editing” can be questioned; recent research suggest that disclosure of poor prognosis does not negatively impact psychological outcomes in Chinese people diagnosed with cancer; rather disclosure of poor prognosis information and promotion of positive communication between caregivers and care recipients was recommended (Nie et al. Reference Nie, Ye and Wang2016).
Compromised communication about cancer-related information between caregiver and patient has been associated with discordance between caregiver and care recipient preferences for end-of-life care, which may negatively impact patient autonomy and accuracy in adhering to patient preferences for care (Shin et al. Reference Shin, Cho and Kim2015). Inaccurate adherence to patient preferences for care is likely exacerbated in instances where key prognosis or treatment information is withheld from the patient due to language barriers. The findings underscore the importance of ensuring professional interpreters are available to broker information between providers and the person with cancer. The use of an untrained caregiver for the important role of brokering information between providers and people with cancer, and the impact on the patient and caregiver health outcomes, requires further research.
Participants were generally satisfied with communication with health providers, however, a key finding related to providers’ directness when sharing information. Research with CALD communities shows that Western communication about chronic disease can be considered too blunt, and that the direct communication of diagnosis and prognosis is experienced as confronting (Bosma et al. Reference Bosma, Apland and Kazanjian2010; Kirby et al. Reference Kirby, Lwin and Kenny2018). Future research should further explore issues around cultural safety in discussions about cancer and how safety might inform health communication. Participants described some provider interactions as lacking empathy, which resulted in care recipients and caregivers feeling hopeless. Participants felt supported when care was personalized, provided with patience, and where participants could involve health providers that spoke their first language. The findings support the need for providers to be aware of cultural sensitivities related to disclosure of a cancer diagnosis, and that family consultation and involvement are paramount when discussing a cancer diagnosis. Improving communication skills to ensure health providers is confident to have nuanced discussions about cancer and its prognosis and understand that cultural sensitivities around cancer diagnosis and discussions of morbidity and mortality could foster improved outcomes in both care recipients and caregivers. The findings also suggest that access to health providers (e.g., GPs or specialists) who speak the first language of the patient and carer, and can explain the diagnosis, treatment, and prognosis in detail, may address CALD caregiver information support needs.
Our findings highlight the need for culturally tailored outreach programs to support Arabic- and Chinese-speaking caregivers of people with cancer that can be embedded within health-care services. A tailored telephone supportive care program for people affected by cancer from CALD communities has been trialed and considered acceptable by patients and caregivers in providing in-language, cancer-related, information and support (Shaw et al. Reference Shaw, Butow and Sze2013a). Our findings suggest the need for increased availability and ease of access to such programs designed to provide information and supportive care for caregivers from CALD backgrounds. Such programs have the potential to improve the health outcomes of both caregivers and care recipients from CALD communities.
Study limitations
The qualitative design of the study is a strength; it enabled in-depth exploration of CALD cancer caregiver experiences residing in Australia. However, findings cannot be considered generalizable to all cancer caregivers from CALD communities. Furthermore, the study may have been limited by the differences in language and background between the interviewer and participants. The interviewer was a white woman from an Anglo-Saxon background who only spoke English. Although participants were able to speak English, it is possible that aspects of the interview were literally “lost in translation.” Interviews conducted in participants’ first language may have captured more nuance. Furthermore, it is not known if participants felt wholly comfortable sharing their stories with an outsider. Indeed, results showed that participants were more comfortable seeking support from a person with a similar background and language, and it is possible that a similar principal applies in the research setting.
Clinical and research implications
Caregivers from CALD communities experience a range of language, communication, and cultural barriers when seeking and finding information which can negatively impact their capacity to provide optimal care for their care recipient. Ensuring caregivers and care recipient from CALD communities are offered formal interpreter services even when they appear proficient in English is recommended. Facilitating access to formal interpreters at short notice is also important. Further research is needed to identify strategies to effectively communicate cancer-related information in a culturally sensitive manner to people affected by cancer from diverse backgrounds. Research to explore the experiences of cancer caregivers who do not speak English is also recommended because their challenges will likely be magnified by the language barrier.
Conclusion
Caregivers identified significant language and communication barriers that impacted their capacity to understand cancer-related information when providing care. Findings highlighted the importance of health providers offering and ensuring interpreter services are available for those from CALD communities, even when caregivers and patients may seem proficient in English, to ensure optimal understanding of cancer-related information. Our findings suggest that cultural differences in responses to a cancer diagnosis and discussions of treatment should inform health provider communication with both CALD caregivers and patients. Education of health providers about both cultural safety and sensitivity is a critical first step. In addition, culturally tailored outreach programs, designed to provide key cancer-related information, which are accessible to CALD caregivers have the potential to improve the health outcomes of both caregivers and their care recipients.
Acknowledgments
We thank the LOTE Agency for their input into participant recruitment and the caregivers who shared their experiences with the research team. The funders did not play a role in the design of the study; the collection, analysis, and interpretation of the data; the writing of the manuscript; and the decision to submit the manuscript for publication.
Author contributions
Eva YN Yuen: conceptualization; investigation; methodology; data analysis; writing – original draft; writing – review & editing.
Megan Hale: investigation; funding acquisition; data curation; data analysis; project administration; writing – original draft; writing – review & editing.
Carlene Wilson: conceptualization; investigation; methodology; data analysis; writing – original draft; writing – review & editing.
Funding
The research was supported by a Cancer Australia grant and funds from the School of Psychology and Public Health, La Trobe University. Eva Yuen was supported by a Deakin University Executive Dean Health Research Fellowship.
Competing interests
The authors have no conflicts of interest to declare.
