A qualitative exploration of the unmet information needs of Chinese advanced cancer patients and their informal caregivers

Background Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers. Since little is known about the information needs of advanced cancer patients and informal caregivers in China, where ‘silence as virtue’ is much more valued and the communication style is less open, this study was therefore conducted to elaborate the information needs of advanced cancer patients and informal caregivers as well as to explore their perceptions and experiences regarding their unmet information needs in the Chinese context. Methods This sub-study of a previous cross-sectional survey utilized a qualitative descriptive study design. The approach involved semi-structured interviews that followed an interview guide to collect data. Eligible participants were the advanced cancer patients and informal caregivers who had participated in the previous cross-sectional survey and reported unmet information needs. Each interview was audio-recorded and transcribed verbatim. Descriptive content analysis was used to analyze the data. Results Seventeen advanced cancer patients and 15 informal caregivers with unmet information needs participated in the semi-structured interviews, with ages ranging from 32 to 63 years old for patients and from 32 to 70 for informal caregivers. Four categories were extracted from the interviews with the patients and caregivers: (1) types of unmet information needs; (2) reasons for information needs not being met; (3) preferences for the provision of information; and (4) meaning and role of information. Each category had two to four sub-categories for both the patients and the caregivers, which were similar but not completely the same. Conclusion The findings indicated that the provision of appropriate information could promote informed decision-making and greater satisfaction with treatment options, reductions in psychological disturbances, and enhanced confidence and ability in self-management and capacity in caregiving. Moreover, information on Traditional Chinese Medicine and food therapy should be increased, particularly for patients at the follow-up stage, while the amount of information on prognosis should be flexible as it could increase patients’ and caregivers’ psychological burden. Healthcare professionals were the most preferred information provider, although their heavy workload resulted in time constraints. In this case, they should provide information to patients and caregivers together as a ‘whole unit.’ At the same time, the value of separate conversations should also be recognized as some caregivers preferred to conceal unpleasant information from the patient.


Introduction
According to the National Central Cancer Registry of China [1], the incidence of cancer in China is about 278.07 per 100,000. In 2018, there were around 4.3 million new cases of cancer and 2.9 million new cancer deaths in China [2]. Cancer has become one of the leading causes of death in China [3]. Patients with cancer often experience more feelings of shock, fear, uncertainty, and loss of control than those with many other diagnoses [4], and appropriate informational support is vital in helping cancer patients cope with negative feelings and conditions [5,6]. Other positive effects of adequate and appropriate informational support have also been identified in several studies, including increased involvement in the decision-making process [7], increased satisfaction with treatment choices [8], and better quality of life [9]. However, cancer patients' information needs are often not met in clinical practice, and the information needs of Chinese advanced cancer patients have been documented as a frequently reported unmet care need [10].
The concept of viewing patients with life-limiting diseases and their informal caregivers as 'a whole unit' has been emphasized in palliative care, and informal caregivers are often regarded as potential 'co-clients' or 'co-users' of care [11]. Informal caregivers are an important resource for the clinical care of cancer patients and as such they usually undertake many unfamiliar and uncompensated caregiving tasks, such as physical care [12], emotional care [13], and medical treatment monitoring [14]. Cancer patients at an advanced stage often experience more complex symptoms than those at an early stage, which can further increase informal caregivers' caregiving tasks [15]. Increased caregiving tasks may subsequently increase caregivers' need for substantial information to improve their caregiving competencies and to deal with uncertainties and problems during the caregiving process [16].
Over the past few decades, extensive research efforts have been devoted to the information needs of cancer patients [17]. However, most of the studies were conducted in Western countries, and little is known about Chinese cancer patients. Different from Western cultures, where the concept of 'open communication' ([18]: p.150) is much more valued, the communication style of Chinese people is often 'less open and more indirect' ( [18]: p.149]) as silence is viewed as a virtue in many Asian countries, including China, due to the influences of Confucianism. Moreover, Chinese people prefer to share 'happiness' rather than 'worries' (报喜不报忧) [19], which may induce healthcare professionals and informal caregivers to withhold information from patients. Considering that people's perceptions and cognitions are formed by the culture and society to which they belong, the need for certain information and the reasons for this need among cancer patients in Eastern cultures may differ from those in Western cultures [18]. Additionally, although appropriate and timely information is an important facilitator for successful caregiving [20] and the concept of 'patient-and-family-centered care' has been emphasized by the World Health Organization [21], studies that have evaluated the specific information needs of informal caregivers are still relatively rare [22].
According to a previous cross-sectional survey [23], information needs was a frequently reported need for both Chinese advanced cancer patients and their informal caregivers. This finding was different from the findings of a previous systematic review [10], which analyzed 50 international studies (86% were studies conducted outside Mainland China) and showed that physical and psychological needs were much more prevalent than information needs, particularly for patients. Although information needs was identified as a frequently reported unmet need, little knowledge could be drawn from the cross-sectional survey due to the limited number of items on information needs assessment included in the questionnaire [23]. The current qualitative study was therefore designed and conducted subsequently to extend this prior research, with the aim of further elaborating the patients' and informal caregivers' unmet information needs as well as exploring their perceptions and experiences regarding their unmet information needs in the Chinese context.

Study design and setting
The current study was a sub-study of a previous crosssectional survey [23]. In the cross-sectional survey, 419 patient-informal caregiver dyads were recruited, from April 2018 to January 2019, to identify the palliative care needs of patients and their informal caregivers. Information needs was quantified as a frequently reported unmet need in the survey by both patients and caregivers. Given that very limited knowledge about information needs could be drawn from the survey, a follow-up qualitative the same time, the value of separate conversations should also be recognized as some caregivers preferred to conceal unpleasant information from the patient.

Keywords: Information needs, Cancer survivors, Caregivers, China
study was subsequently conducted to further elaborate and explore the perceptions and experiences of the patients and caregivers in relation to their unmet information needs.
A qualitative descriptive design is often used to achieve a pure description without following a specific qualitative research tradition [24]. The qualitative description design has been promoted as a well-developed method to provide a 'comprehensive summary of an event in the everyday terms of those events' ( [25]: p.336). Considering the research aims of this sub-study, a qualitative descriptive design was employed. Ethical approvals were granted by the Human Subjects Ethics Sub-Committee at The Hong Kong Polytechnic University and The Affiliated Hospital of North Sichuan Medical College. All methods in this study were carried out in accordance with relevant guidelines and regulations.

Participants
Although all the participants in the cross-sectional survey were informed that they may be approached again after the survey to participate in a follow-up qualitative interview, further face-to-face explanations of the qualitative sub-study process and research aims were given again to potential participants after the survey to invite them to participate. Those who were willing to participate were required to sign a consent form for this qualitative sub-study. Given that this qualitative sub-study was an extension of prior research [23], purposive sampling was used to recruit participants from early February 2019 to the end of March 2019. The participants, including patients and informal caregivers, were approached if they: (1) had completed the cross-sectional survey [23]; (2) reported unmet information needs (for patients, this was determined using the Problems and Needs in Palliative Care-short version questionnaire, with the answer of 'yes, more' for the question 'Do you want professional attention for this?'; for caregivers, this was determined using the Comprehensive Needs Assessment Tool in Cancer for Caregivers, with answers of moderate or high levels of information needs) [23]; (3) were physically capable of participating in an interview lasting 30 to 60 min; and (4) agreed to participate in the sub-study and signed a written informed consent form. Seventeen patients and 15 informal caregivers were recruited based on data saturation [26]. All of the participants who were approached to take part in the qualitative interviews did so, yielding a response rate of 100%.

Data collection
A semi-structured interview was used to collect data since it combined the strengths and eliminated the weaknesses of structured and unstructured interviews, and it is currently the most commonly used approach for qualitative data collection in healthcare research [27]. Semistructured interviews enable an in-depth understanding of the participants' perceptions and/or experiences of one focused research topic [27,28]. The interview guides used in this study were comprehensively developed based on the expertise of the research group, a series of previous qualitative studies and mixed-methods studies that investigated patients' and/or informal caregivers' views and/or experiences in relation to information needs [29][30][31], and validation through pilot interviews.
Six key questions were included in the interview guide to explore the following areas: the information that the participants desired to learn (what and why); the time that the participants needed the information most (when); the participants' current provision of information (what was provided, who provided it, where, and in what format); the participants' feelings about the information that they received; factors or reasons that resulted in the participants' unmet information needs; and the participants' perceptions regarding how the information could affect them if they received sufficient information. The patients and caregivers were interviewed separately at the study hospital by the first author (TW), who was a doctoral researcher at that time. Prior to the commencement of the interviews, the doctoral researcher had completed qualitative training and had fully practiced her interview skills through a few pilot interviews with the guidance of an experienced qualitative researcher (the third author, BPMC). Before each interview, a pre-designed form was used to collect the participant's demographic and medical information. Each interview was audio-recorded.

Data analysis
Qualitative content analysis was employed to analyze the data following the 'four phases of category development' method [32], which includes 'initialization, ' 'construction, ' 'rectification, ' and 'finalization. ' In the 'initialization' phase, the transcribed data were read and re-read many times to become familiar with the data. The phrases, sentences, and/or paragraphs that were relevant to the research questions were highlighted as meaning units and codes. In the 'construction' phase, the initial codes were classified and compared regarding their similarities and differences, and then they were assigned to different groups based on the research questions and on the principle of 'mutual exclusivity. ' 'Rectification' was then conducted to further modify the categories and sub-categories by reappraising the analysis process at either the coding process level or the whole dataset level. The final phase was 'finalization, ' which involved using representative data (i.e., quotes) that were extracted from the transcriptions to support each category and/or sub-category and to report the results of the analysis.
Several strategies were used to achieve rigor and trustworthiness in this study. All transcripts were checked against the original audio-taped records to ensure accuracy. Separate coding was used for some transcripts (i.e., coded independently by the first author [TW] and two other experienced qualitative researchers with PhD degrees) to develop the coding structure. The first author (TW) then completed the rest of the coding based on the coding structure. Ongoing discussions among group members were performed during the whole data analysis process. Two bilingual translators translated the quotes to ensure the equivalence of the participants' descriptions between different languages (i.e., English and Mandarin), and a third party was involved when inconsistency existed. The identified categories and sub-categories were sent back to several participants to check whether these categories indicated their perceptions and experiences. Trust and rapport with the participants were built prior to the interviews as the interviewer (TW) had stayed at the study site for 10 months due to the previous survey.

Characteristics of the participants
The characteristics of the participants are presented in Tables 1 and 2.

Perceived information needs of advanced cancer patients and their informal caregivers
Four categories were identified in the interviews with the patients and caregivers: (1) types of unmet information needs; (2) reasons for information needs not being met; (3) preferences for provision of information; and (4) meaning and role of information. Each category had two to four sub-categories for both the patients and the caregivers, which were similar but not entirely the same (see Table 3).

Category 1: types of unmet information needs
Both the patients and the caregivers desired to obtain more information about disease conditions, progression and treatment, daily life issues (particularly food therapy), physical symptom management, self-emotion management, and information on insurance coverage and reimbursement.

Disease-and treatment-related information
Disease-and treatment-related information was the most frequently reported unmet information need for both the patients (15/17)    Patients and caregivers also indicated that they could not obtain adequate treatment-related information from healthcare professionals: Given that Traditional Chinese Medicine (TCM) plays an important role in Chinese culture, information about TCM was one commonly reported type of treatmentrelated information that patients preferred to receive, particularly patients at the follow-up stage who were not satisfied with Western medicine-type treatment and those who had suffered from too many side effects from Western treatment:

Physical and psychological symptom management
Although all the patients were advanced stage cancer patients, they were still receiving active anticancer treatment, particularly chemotherapy, which resulted in some chemotherapy-induced side effects. Several of the patients and caregivers indicated that they wanted to learn more about physical symptom management, such as pain and chemotherapy-induced nausea and vomiting: Caregivers also wanted to learn more about self-emotion management; however, their purpose was to conceal their own negative emotions and show more positive ones in front of the patient:

Category 2: reasons for information needs not being met
The heavy workload of healthcare professionals, poor literacy and beliefs of individuals, fear of unpleasant information, and insufficient family support were common reasons for the information needs of patients and caregivers not being met. Poor health status and social isolation due to the disease were two other unique reasons for the patients.

Healthcare professional factors
Most of the patients (13/17) and nearly half of the caregivers (7/15) said that healthcare professionals were too busy to provide them with detailed information. It was one of the most important reasons that their information needs were not being met:

Individual factors Knowledge and beliefs
Both the patients and the caregivers indicated that their poor literacy to some extent limited their ability to seek and understand information when it was given: Although information about daily life such as diet was reported as a type of information that the patients and caregivers wanted to obtain, they did not actively seek this kind of information. They viewed daily life information as less important compared with information about the disease and its treatment. The doctors' priority was 'curing' the disease rather than talking about daily life issues:

Poor health status of patients
The patients usually experienced unpleasant side effects such as nausea and vomiting after receiving chemotherapy. They were therefore not physically well enough to seek information until they had recovered from the side effects: "I am old now and I feel really unwell due to the nausea and vomiting after the chemotherapy. The poor fitness makes me not seek information. " (P3, Female, 55-year-old, Cervical cancer, Stage IV)

Low motivation: fear
Several of the patients and caregivers expressed psychological conflicts in information seeking. On the one hand, they wanted to obtain information, but on the other hand, they avoided asking for information as they were afraid of hearing bad news. Fear therefore had reduced their motivation to ask for information:

Family/social support factors
Several of the caregivers (all female) reported that they were the only person who was available to take care of the patient. Given the traditional gender roles in Chinese culture, females usually attend to housework. The caregivers not only had to look after the patient but also had to take care of domestic affairs. The heavy caregiving burden left them with no time or energy to seek information:

"I am the only person who is taking care of him and I have to stay with him due to the transfusion, which makes me have no time to seek information. " (C6, Wife, 53-year-old, Patient with esophageal cancer) "Sometimes, my wife learns some information for me; however, to be honest, she has no time to seek more information. We have only one child and she has her job, so it is my wife who does everything for me as well as the housework, I know she is burned out. " (P6, Male, 48-year-old, Hepatic cancer, Stage IV)
Social isolation after the cancer diagnosis was also experienced by some of the patients, which also reduced their chances of obtaining information from others:

Category 3: preferences for provision of information
Both the patients and the caregivers preferred to get information from healthcare professionals. For most of the patients, they preferred written information, while for caregivers, face-to-face conversations was the most commonly mentioned format. The fluctuation of information needs throughout the disease trajectory was similar for the patients and caregivers-information on disease condition and treatment at the stage of diagnosis, daily care information, continuing treatment information after the completion of chemotherapy, and treatment information at the time of recurrence or of deterioration.

Information provider
Healthcare professionals, particularly doctors, were regarded as the ideal information providers by both the patients and the caregivers. The information provided by healthcare professionals was regarded as much more reliable and believable than that from other sources:

Information format
The patients most commonly mentioned written information, such as printed materials, as written information helped them to overcome the problem of poor memory, allowing them to read the information at their own convenience: The caregivers most commonly mentioned face-to-face conversations with healthcare professionals as their preferred format, with some expressing concern about bad news being revealed to the patient. They preferred to hold back unpleasant information from the patient during a conversation in order to minimize the patient's psychological burden:

Timing of information
The information needs of both the patients and the caregivers were not static but changed and fluctuated throughout the disease trajectory. The fluctuating need for information by the patients and caregivers was similar to the progression of the disease. At the time of diagnosis, the patients and caregivers had a substantial need for information about their condition and/or treatment of the disease: With the progression of the disease, the need for treatment information increased again, especially when the patient's condition became worse or the disease recurred: "Because the disease recurred, and chemotherapy didn't make sense anymore, the tumor size is bigger than before. " (P15, Female, 49-year-old, Lung cancer, Stage IV) "Now it has metastasized to the whole body and the chemotherapy has not made too many positive effects. On this occasion, I want to know more treatment information. " (C2, Husband, 53-year-old, Patient with lung cancer)

Category 4: meaning and role of information
Both the patients and the caregivers indicated that information played an important role in their efforts to cope with cancer. For most of the patients and caregivers, adequate information, such as treatment information, provided them with references when making medical decisions, increased their hope for and perhaps also chance of survival, and affected them psychologically, both positively and negatively. In addition, adequate information could assist the patients in their self-management and prepared caregivers for their role.

Decision-making
"Getting more information would benefit decision-making" was mentioned by both the patients and the caregivers. They indicated that adequate information could help them make a medical decision wisely and comprehensively by understanding the potential treatment effects and side effects of the treatment regimens, as well as considering their own economic situation:

Hope for and chance of survival
Both the patients and the caregivers indicated that having adequate information meant a greater chance and more hope for survival. Cancer posed a financial burden on most of the families with cancer patients. Families experiencing economic hardship sometimes had to forego treatments for financial reasons. Having more information on financial support, such as insurance coverage and reimbursement, could enable them to afford more and longer treatments, thus increasing their hope for survival: "If I had learned the information about reimbursement of the medical insurance, maybe I would use some medications with better effects and claim more for reimbursement. The reimbursement could support me to get more treatments, and having more treatments means more chances to survive. " (P3, Female, 55-year-old, Cervical cancer, Stage IV) "Of course, I wish to know more about healthcare insurance. The healthcare insurance can, more or less, reimburse some coins...as you know, the cancer and related treatments really cost us a big sum of money. Some reimbursement [from the healthcare insurance] would at least enable us to afford a longer treatment with greater hope. " (C3, Wife,

49-year-old, Patient with lung cancer)
Many other patients and caregivers reported that learning more about treatment regimens meant that they would have more options and the chance to try different treatments, increasing their chance of and hope for survival: "If we were informed of information on treatment regimens, we could select one to treat the disease continually. Only when we try more, the patient may have the chance to survive. So, learning more information on treatment regimens may enable us have a chance to choose the treatment and more chances for the patient to survive. " (C2, Husband, 53

Psychological impact
Adequate information had both a positive and a negative psychological effect on the patients and caregivers. They stated that gaining more information would help them to understand their/the patients' disease conditions better and more clearly, which could reduce their psychological pressure and increase their certainty and ease:

Self-management
Over one-third of the patients expressed the view that knowing information, particularly daily life information like diet, could be a way of assisting them in self-management. Getting information on daily life could promote their adjustment to a different lifestyle and improve their capacity for self-management:

Being more prepared for the caregiving role
Being prepared for what lies ahead is an important aspect of feeling in control and relieving uncertainty. Some of the caregivers in this study reported that gaining adequate information would enable them to feel more prepared for their caregiving role: "Of course, information on diet is very helpful for us. For patients, actually they need not only medical treatment but also diet, the food therapy. As the patient's family members, knowing more information on diet will enable us to take care of the patient better at home. We will know what to do and how to take care of him. " (C8, Daughter, 33-year-old, Patient with hepatic carcinoma) Adequate information that enabled them to be psychologically prepared for the death of the patient was also mentioned by the caregivers:

Discussion
Although 'silence as virtue' is valued in Chinese culture, the advanced cancer patients and caregivers needed more 'communication, ' particularly with healthcare professionals, to get more reliable information, which indicated that 'silence as virtue' was not the case for the population with health threats. The significant information needs of the patients may also have been attributed to the relatively young age of the participants (most were younger than 55 years old) as young cancer patients were found to have greater information needs than older ones [33]. Information has been demonstrated to play a critical role in individuals' efforts to cope with cancer [34] as the diagnosis of cancer is a significant trauma for both patients and family members [35]. Patients and their families often feel stressed about making medical decisions due to the severity and life-limiting nature of cancer [36]. In accordance with previous studies, the Chinese patients and caregivers in this study also indicated that adequate and appropriate information provision may increase their involvement in decision-making and result in greater satisfaction with treatment options [37,38]. Moreover, the patients and caregivers in this study perceived that appropriate and adequate information could increase their hope for survival and reduce their psychological burden. This study finding was consistent with that of some previous studies, which showed that providing appropriate information that was congruent with the patients' and family members' needs could reduce their mood disturbance such as anxiety [9]. Some types of information or an inappropriate amount of information can indeed increase individuals' mental distress and feelings of hopelessness [39]. Too much information may also render patients unable to cope with their health threats due to high levels of fear and anxiety [40]. In this study, the view of 'too much information may increase psychological burden' was also identified by the patients and caregivers. Thus, how to develop and provide tailored and appropriate information regarding information type and amount to patients and caregivers should be considered. Additionally, the patients and caregivers in this study perceived that having adequate and appropriate information could be a way of improving the patient's capacity for self-management and a way of increasing a sense of control and certainty for the family members taking care of the patient. These findings were in line with several previous studies, which suggested that patients who did not obtain adequate information had less confidence regarding their ability to manage health-related issues [34]. Patients who are adequately informed about their disease are also better able to maintain a sense of control over their cancer [34], as well as deal with the uncertainty of the disease [41]. Thus, information provision with appropriate types and amounts of information can contribute to improved health competence and better symptom management [34,42].
The information needs of Chinese advanced cancer patients and their caregivers were both explored in this study, and the types of information that the patients desired to learn were broadly similar to those of the caregivers. This finding was supported by two systematic reviews [43,44] and suggested that both the patients and the caregivers should be involved in conversations with healthcare professionals such as joint meetings [45]. It was not surprising that the patients and caregivers in this study frequently sought disease and treatment information as most of the patients were still receiving active cancer treatment. Patients at the treatment stage are more interested in exploring their treatment options and learning about the potential treatment effects and side effects associated with the treatment options [43]. TCM was reported as important treatment-related information by both the patients and the caregivers in this study. Given the belief in and popularity of TCM in Chinese culture, using TCM to fight illnesses and maintain health is regarded as a natural part of the cultural practices of Chinese people [16]. Inconsistent with some previous studies [43,44], information on food therapy was another important unmet information need reported in this study. According to TCM theories, illness is caused by an imbalanced Yin and Yang [46]. A proper diet can nourish 'Zang Fu' organs and balance Yin and Yang to maintain people's health and promote the rehabilitation of the disease [47]. This study finding highlighted that the patients' and caregivers' information needs were context-bound, and as such, some culturally sensitive information should be assessed and provided within a certain context. The findings also demonstrated that both the patients and the caregivers desired to optimize the patient's comfort and deal with the negative emotions of the patient by learning more relevant information. This finding was only partly consistent with some previous studies [43,44] as the motivation of the caregivers to learn information on psychological adjustment in this study was to cover their own negative emotions in front of the patient rather than to maintain their own mental health. Chinese caregivers are usually patient-centered, and they are concerned more about their patient's conditions than their own health [48,49]. Although financial issues emerged as a significant concern for both the patients and the caregivers in this study, very few families expressed that they would choose to withdraw treatment for their patient due to financial strains. This might have been because Chinese caregivers often have the attitude of treating the patient's disease at all costs [50].
Both the patients and the caregivers viewed doctors as the most reliable source of health information. Such a strong reliance on healthcare professionals may be a reflection of strong interpersonally oriented cultural values [51] as many studies have shown that Asian patients often prefer interpersonal information sources [52,53] rather than other sources. As the preferred information providers, healthcare professionals also need to recognize the importance of learning patients' health information literacy, that is, the patients' capacity to access, process, and understand the information they need [54]. In this study, most of the patients had a primary school education background or below; thus, a combination of written information with additional visual and auditory illustrations and materials be considered to improve the patients' understanding, as individuals with basic education or below usually have a significantly higher risk of inadequate health information literacy [55]. Moreover, healthcare professionals need to recognize the value of having separate conversations with patients and their caregivers, as some caregivers in this study mentioned that they preferred to hold back unpleasant information from the patient for the purpose of protectiveness. However, it was not uncommon that the patients wanted to be told the truth [56]. Some of the advanced cancer patients in this study emphasized that they hoped to be respected, and that any separate discussions between the healthcare professionals and their family members should be conducted based on their permission first [57]. Holding back information from patients was therefore considered unethical [57]. In other words, it was an ethical dilemma for the healthcare professionals regarding how to respond to the family members' request to hold back information from the patient [58,59]. Considering that the views of patients and family members regarding truth-telling and patient autonomy are culturally sensitive [43,56], more studies are needed in the future to explore the perceptions of patients, caregivers, and healthcare professionals regarding the issue of truth-telling in the Chinese context. In addition, consistent with some previous studies [35,60], the patients' and caregivers' preferences for the types of information were not static but changed across the cancer trajectory in this study, which indicated that different types of information should be provided at the appropriate time.
Although healthcare professionals were cited as the ideal information source by both the patients and the caregivers in this study, they were sometimes reluctant to approach healthcare professionals for information, not wanting to occupy too much of their time as they were extremely busy. This finding was supported by previous research [61,62], which showed that cancer patients were less comfortable asking their physician questions due to their time constraints. Some patients and caregivers in this study held the belief that daily life and diet issues were unimportant issues even though they desired to learn more about them, and they felt that these issues did not deserve healthcare professionals' limited time. This study did not provide insights into the reason for this perception; however, the high instrumental value and low self-worth placed on authority in Chinese culture could have played a role [51]. 'Being afraid of facing bad news' was also a major reason for patients' and caregivers' unmet information needs. According to the information-seeking paradigm [63,64], not all individuals deal with health threats by actively seeking information, and some prefer distraction and avoid receiving too much information. Thus, the differences in individuals' desire for information should be recognized, as not everyone can benefit from the same amount of information [65]. In this study, family support was sometimes limited for the Chinese caregivers as available family members tended to be a small group due to the one-child policy. The spouse of the patient was usually required to take care of the patient as well as carry out all the domestic tasks, particularly female caregivers. The imbalance between the caregivers' capabilities and demands undoubtedly imposed heavier burdens on them and subsequently prevented them from having the time or energy to seek information for either the patient or for themselves [19]. Therefore, healthcare professionals should be concerned about insufficient family support experienced by caregivers and proactively assess and provide them with appropriate types and amounts of information.
This study has some limitations. The method of data collection, semi-structured interviews, to some extent may have prevented the participants from expanding on their perceptions and experiences regarding their information needs compared with unstructured interviews. Given that all the recruitment was conducted in the hospital, the perceptions and experiences of patients with unmet information needs in other settings were therefore not captured. Generalizability of the study findings might be another limitation because as a qualitative study, it was specific to a small number of participants within a particular setting, although detailed descriptions of the research context and findings and sufficient and representative extracts (i.e., vivid quotes from the participants) were provided to help readers determine how far the findings could be transferred to other situations.

Implications for practice and research
To address patients' and caregivers' unmet information needs, in addition to increasing the amount of information, the underlying reasons for their unmet information needs should be assessed and considered, such as their emotional status and knowledge and beliefs. Regarding specific information (e.g., information on prognosis), the amount of information should be flexible as it may have disadvantages for some patients and caregivers. Regarding the format of giving information, written information in combination with adequate illustrations (e.g., figures) and other visual and auditory materials (e.g., video and audio) should be considered to accommodate patients with different levels of health information literacy. Given the limited time and the similarity of the information needs of patients and caregivers, viewing patients and caregivers as a 'whole unit' when providing information may be an effective approach. However, the value of having separate conversations with patients and their caregivers should also be recognized, as some caregivers in this study preferred to conceal unpleasant information from the patient. Nevertheless, such separate conversations should be performed with caution, as concealing information from patients and discussing the patient's disease without permission is considered unethical. Given that truth-telling and patient autonomy are culturally sensitive [43,56], more studies on patients' , caregivers' , and healthcare professionals' attitudes toward truth-telling in the Chinese context are worth exploring further.

Conclusion
In this study, information played a critical role in the Chinese patients' and caregivers' efforts to cope with cancer, and they perceived that appropriate information provision could facilitate informed decision-making and greater satisfaction with treatment options, reductions in psychological disturbances, enhanced confidence in and ability of self-management, and the ability to anticipate and prepare for caregiving. The findings from this study can promote healthcare professionals' understanding in terms of what and how much information, from whom, in what format, and when during the trajectory of cancer Chinese patients and caregivers prefer to receive it.