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Abstract

Objective

This study aimed to synthesize existing qualitative evidence to explore the complex facilitators of and barriers to health information-seeking behavior (HISB) among cancer patients.

Methods

Guided by the PRISMA framework, a systematic search was conducted across multiple English and Chinese databases, including Cochrane Library, PubMed, Embase, CINAHL, PsycINFO, Web of Science, CNKI, and Wanfang. Study quality was appraised using the Joanna Briggs Institute (JBI) critical appraisal tools. Evidence from 12 eligible qualitative studies involving 230 patients was integrated and synthesized using the JBI meta-aggregation approach.

Results

The synthesis revealed a multifaceted interplay of factors influencing HISB. Patients’ behaviors are primarily driven by an internal psychological process, navigating a dynamic tension between acquiring knowledge to regain a sense of control and avoiding potentially distressing information to preserve hope. Furthermore, these behaviors are significantly shaped by external contexts, particularly the dynamics of patient-provider communication, family roles, and cultural beliefs, giving rise to a complementary “online preparatory search and offline verification” strategy. Ultimately, the ability to translate information-seeking intentions into effective action is closely tied to individual competencies, including health literacy, digital literacy, and accessible socioeconomic resources.

Conclusions

This review synthesizes the facilitators of and barriers to HISB, revealing a complex system shaped by internal states, external contexts, and personal capacities. Effective information support must therefore extend beyond mere information provision to incorporate dynamic, multi-level, and personalized strategies that are responsive to patients’ psychological needs, cultural backgrounds, and resource realities. The findings provide a consolidated evidence base and a holistic understanding for developing patient-centered, contextually adapted, and digitally informed health information support practices.

Keywords

Cancer patients facilitators and barriers health information-seeking behavior meta-synthesis qualitative research

Introduction

Cancer represents a critical social, public health, and economic challenge that threatens the wellbeing of global populations in the 21st century. According to the latest data from the International Agency for Research on Cancer (IARC), approximately 20 million new cancer cases were diagnosed worldwide in 2022, a figure projected to rise to 35 million by 2050.¹ Advances in screening and diagnostic technologies, combined with rising incidence and improved survival rates, have contributed to a growing number of cancer patients globally. Following a cancer diagnosis, patients often face life-changing decisions and experience substantial psychological stress, which may impair their ability to effectively access and use health information.² Furthermore, with the advancement of medical technologies and standardized treatment protocols, hospitals are discharging patients more rapidly after surgery or major treatments, increasing the demand for health management during the home recovery phase.

Health information-seeking behavior (HISB)—the proactive effort to obtain health-related knowledge to address needs, reduce uncertainty, and improve outcomes—serves as a central self-management and coping strategy for cancer patients.³ Active HISB can support early detection and disease control, while also influencing prognosis through psychological and behavioral pathways. As articulated in Lazarus and Folkman's coping theory, information seeking functions as a strategy to appraise and manage stressful situations.^4,5 By actively acquiring information, patients gain a better understanding of their condition, which enhances psychological adjustment, supports shared decision-making, reduces treatment-related anxiety, and strengthens self-management agency.⁶ These mechanisms collectively contribute to improved treatment adherence, healthier behaviors, and better health outcomes.⁷

HISB comprises diverse information-seeking modes across offline and online channels. Offline modes include consultations with healthcare providers, participation in peer support groups, and use of printed materials, while online channels encompass search engines, professional medical websites, social media, and mobile health applications.⁸ These two modes differ significantly in their characteristics and functions. Online HISB offers broad accessibility, convenience, and real-time updates, supporting rapid acquisition of general knowledge, yet it is often accompanied by challenges such as information overload, variable quality, and difficulty in assessing credibility.⁸ In contrast, offline HISB, particularly communication with healthcare professionals, provides greater professional credibility, contextual relevance, and personalized guidance, along with emotional support through direct interaction.⁹ Rather than serving as substitutes, online and offline HISB function as complementary resources that patients strategically employ according to their specific needs and illness stages.

Existing research has largely concentrated on online HISB, identifying influencing factors such as demographics, disease-related variables, and psychosocial elements. For example, a scoping review on breast cancer patients’ online information seeking highlighted their preferences for search engines, institutional websites, and social media, alongside widespread concerns about information quality, credibility, and understandability.⁹ Similarly, a systematic review by Giulia et al.¹⁰ noted that internet information quality and digital literacy shape cancer patients’ online information behaviors, while Safa et al.¹¹ observed that despite technological advances, healthcare providers remain the most trusted information source, underscoring the enduring relevance of traditional channels. Cultural context also plays a key role: Sophie et al.¹² reported that Asian/Pacific Islander populations exhibit more positive attitudes toward seeking cancer-related information, and other studies have noted differences in information needs between American and Chinese patients.¹³ These variations in source preference across groups likely reflect underlying cultural and contextual factors, which should be carefully considered in analyses of HISB among cancer patients.

While quantitative studies have identified various factors associated with HISB, they seldom explain the underlying “why” and “how.” Qualitative research addresses this by uncovering patients’ emotional experiences, motivations, and cultural influences. However, individual qualitative studies are often limited in scope and generalizability due to specific samples and settings.¹⁴ Qualitative evidence synthesis can overcome these limitations by integrating findings across diverse contexts to provide a more comprehensive understanding of cancer patients’ HISB.¹⁵ Furthermore, existing systematic reviews rely heavily on quantitative evidence from Western populations, with a notable lack of representation from distinct cultural settings such as China. Even when qualitative studies are included, analyses typically focus on online channels or isolated aspects, rather than examining the integrated experience of online and offline HISB, its underlying mechanisms, or how culture shapes information-seeking preferences and barriers.

Methods

Research aim and design

Qualitative evidence synthesis (meta-synthesis) addresses the limitations of individual studies by systematically integrating findings across diverse settings, uncovering underlying mechanisms of HISB and identifying potential intervention points.¹⁵ Recognizing the complementary roles of online and offline channels, this review examined both modes, with particular attention to the underrepresented Chinese context. The aim was to explore factors influencing cancer patients’ HISB and identify modifiable facilitators and barriers that could inform clinical practice and supportive care strategies. The review was conducted in accordance with the Joanna Briggs Institute (JBI) Reviewer's Manual and reported following the Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ) guidelines to ensure methodological rigor and transparency.^16,17 The protocol for this synthesis was prospectively registered on PROSPERO under registration number CRD42025633635.

Literature search and screening strategy

A systematic computer-based search was conducted across the following databases: Cochrane Library, CINAHL, Embase, PubMed, Web of Science, PsycINFO, China National Knowledge Infrastructure (CNKI), VIP Database, Wanfang Database, and the China Biology Medicine disc (CBM). The search aimed to identify qualitative studies investigating factors influencing HISBs among cancer patients, from the inception of each database until October 2024. Furthermore, the reference lists of all eligible articles were manually reviewed to supplement the database search. An initial limited search was performed in PubMed and CBM to identify relevant keywords and free-text terms. The specific search strategy tailored for each database is available in Supporting Information S1: File 1.

All retrieved citations underwent eligibility screening. Studies were included if they met the following criteria: (a) participants had a histopathologically confirmed malignant tumor diagnosis (screening-phase or precancerous cases were excluded); (b) the study examined facilitators or barriers to HISB in cancer patients; (c) a qualitative methodology was used, such as descriptive qualitative research, phenomenology, ethnography, grounded theory, or case studies; (d) the study was published in English or Chinese. Exclusion criteria were: (a) conference abstracts; (b) non-English or non-Chinese publications; (c) articles with unavailable full text, incomplete data, or duplicate publication. No restrictions were placed on participant age or study location. After duplicate removal, two reviewers independently screened titles, abstracts, and full texts against the eligibility criteria. Any disagreements were resolved through discussion or by consulting a third reviewer.

Quality assessment

Two researchers (WJ and YX) trained in evidence-based medicine independently appraised the quality of the included studies using the 2016 Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research.¹⁷ Any disagreements between the reviewers were resolved through discussion until a consensus was reached, or by consultation with a third reviewer to determine final inclusion. The checklist includes a total of 10 items, each of which was rated as “Yes,” “No,” or “Unclear.” Based on these ratings, the methodological quality of each study was classified into three levels: A, B, or C. A rating of Level A indicates that the study met all criteria, presenting the lowest likelihood of bias. Level B indicates partial fulfillment of the criteria with a moderate likelihood of bias. Studies that did not meet the criteria and presented the highest likelihood of bias were rated Level C. Finally, only studies rated Level A or B were included in the synthesis.

Data extraction and analysis

Data extraction from the included studies was performed independently by two researchers (WJ and LX). Any discrepancies were resolved through discussion or, if necessary, by consulting a third reviewer. Key descriptive characteristics were extracted using a pre-designed form, which included information such as the author(s), publication year, country, study design, sample demographics, phenomena of interest, and primary findings.

The findings were synthesized using the JBI meta-aggregation approach.¹⁸ This method involved the following four steps: (a) extracting findings, along with supporting illustrations and participant quotes, that were directly relevant to our review objectives; (b) independently assessing the credibility of each finding by two reviewers (WJ and YH) as unequivocal, credible, or unsupported to ensure methodological rigor; (c) categorizing findings rated as unequivocal or credible based on their similarity in meaning, while excluding those rated unsupported from further synthesis; (d) developing synthesized findings by aggregating the categories. All authors reviewed the final synthesized findings for coherence, with any disagreements resolved through discussion.

Results

Literature search

The initial database search identified 7105 articles. After removing duplicates, 1887 articles were retained for title and abstract screening. Following this review, 1625 articles were excluded. The full texts of the remaining 262 articles were assessed for eligibility, resulting in the exclusion of 250 articles. Ultimately, 12 studies met all inclusion and exclusion criteria and were included in the final synthesis. The screening process and reasons for full-text exclusion are detailed in the PRISMA flow diagram (Figure 1).

Figure 1.

PRISMA flow diagram illustrating literature search and selection.

Quality appraisal

All 12 included studies were considered of acceptable quality. One study was rated as Level A, having comprehensively described all quality assessment components. The remaining 11 studies were rated Level B. Among these, only five studies^19–23 clearly articulated their philosophical perspective and methodology. Three studies^23–25 demonstrated an inconsistency between the stated research methodology and the representation or analysis of the data. The cultural or theoretical positioning of the researcher was not identified in seven studies,^{19,21,24–28} and six studies^{19,21,22,24,25,29} did not address the potential influence of the researcher on the research. Additionally, one study²³ showed a lack of congruence between its methodological approach and the methods used for data collection. Despite these identified methodological limitations, all articles were retained in the systematic review as they provided valuable insights and contributions to the literature. The complete details of the JBI quality assessment for all 12 included studies are presented in Table 1.

Table 1.

Results of the quality appraisal.

	C1	C2	C3	C4	C5	C6	C7	C8	C9	C10
Chen et al.	U	Y	Y	Y	Y	N	Y	Y	Y	Y
Liu et al.	U	Y	Y	Y	Y	N	Y	Y	Y	Y
Latifi et al.	N	Y	Y	Y	Y	Y	N	Y	Y	Y
Zhong et al.	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Friis et al.	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y
Shin et al.	U	Y	Y	Y	Y	Y	Y	Y	Y	Y
Loeb et al.	U	Y	Y	N	Y	N	N	Y	Y	Y
Mousavi et al.	Y	Y	Y	Y	Y	N	N	Y	Y	Y
Leydon et al.	U	Y	Y	Y	Y	N	Y	Y	Y	Y
Wang et al.	Y	Y	Y	Y	Y	Y	N	Y	Y	Y
Latifi et al.	U	Y	Y	N	Y	N	N	Y	Y	Y
Radina et al.	Y	Y	N	N	Y	Y	Y	Y	Y	Y

Abbreviations: C1, congruity between the stated philosophical perspective and the research methodology; C2, congruity between the research methodology and the research question or objectives; C3, congruity between the research methodology and the methods used to collect data; C4, congruity between the research methodology and the representation and analysis of data; C5, congruity between the research methodology and the interpretation of the results; C6, identifying the researcher culturally or theoretically; C7, influence of the researcher on the research; C8, representation of participants and their voices; C9, ethical approval by an appropriate body; C10, relationship of the conclusions with the analysis or interpretation of the data; N, no; NA, not applicable; U, unclear; Y, yes.

Study characteristics

Table 2 presents the characteristics of the 12 included studies. These studies, published between 2018 and 2024, were primarily conducted in China and Iran. Eight studies^22–29 employed a qualitative descriptive design, while the remaining four utilized methodologies such as focus group interviews, phenomenological inquiry, and ethnography.^19–21^,30 In total, 238 cancer patients participated across the 12 studies, encompassing cancer types including breast cancer, colorectal cancer, head and neck tumors, leukemia, and prostate cancer. Sample sizes ranged from 12 to 35 participants.

Table 2.

Study characteristics.

Author(s) and year	Country	Research methods	Participants	Phenomena of interest	Description of main results
Chen et al. (2023)²⁷	China	Descriptive qualitative research; semi-structured interviews	21 postoperative patients with colorectal cancer	Understanding postoperative nutritional information acquisition behavior in colorectal cancer patients.	Nutritional information needs; Nutritional information access channels; Nutritional information access models; Impacts of nutritional information access
Liu et al. (2023)²⁹	China	Descriptive qualitative research; semi-structured interviews	14 patients with colorectal cancer stoma	Understanding colorectal cancer ostomy Patients’ experiences of health information access behaviors, Channels of information access, and barriers to information access.	Experiences of health information access behavior; Channels of information access; Barriers to information access
Latifi et al. (2020)²⁸	Iranian	Semi-structured interviews	17 women after mastectomy for breast cancer	Identifying barriers to health information seeking among post-mastectomy female breast cancer patients in Hormozgan Province, Iran.	Fear; shame and embarrassment; inadequate health literacy; economic status; doctors and medical personnel; lack of accessibility to information sources
Zhong et al. (2024)²⁰	China	Phenomenological research; semi-structured interviews	14 patients with head and neck cancer	Exploring the information-seeking experience of Chinese head and neck cancer patients and its influencing factors.	Content of health information needs; Initiatives and sources of health information acquisition; Embodiment of information value; factors influencing HISB
Friis et al. (2003)²¹	Denmark	Ethnography; semi-structured interviews	21 patients with acute myeloid leukemia	Gain knowledge about patients’ perceptions of information and their motivations to seek or avoid information and how social norms affect attitudes toward information motivations and how social norms influence attitudes toward information.	Information recall; need for information; information-seeking behavior
Shin et al. (2020)²⁴	South Korea	Focus group interviews	31 cancer survivors	Exploring cancer survivors’ experiences and perceptions of using the internet to search for health information.	Satisfying unmet needs; validation through second opinion; affirmative necessary steps; mutual assistance; difficult choices; complex search environment
Loeb et al. (2024)²³	USA	Focus group interviews	22 black patients with prostate cancer	Exploring Black prostate cancer patients’ perceptions of their use of the Internet as a source of health information and its impact on prostate cancer care.	People seeking information; types of information; time spent seeking information; Impact of the internet
Mousavi et al. (2022)¹¹	Iranian	Semi-structured interviews	12 cancer patients	Exploring cancer patients’ experiences of seeking Iranian culture-based health information.	Optimal cancer management; Adverse information dissemination systems; Perceived health literacy
Leydon et al. (2000)¹²	UK	Semi-structured interviews	17 cancer patients	Exploring the reasons why cancer patients don't want further information.	Faith; Hope; Charity
Wang et al. (2021)²²	China	Semi-structured interviews	17 patients with advanced cancer	Perceived and experienced unmet information needs of patients with advanced cancer.	Types of unmet information needs; Reasons for unmet information needs; Information provision preferences; meaning and role of information
Latifi et al. (2018)¹³	Iranian	Semi-structured interviews	17 women with breast cancer after mastectomy	Determining information needs and information-seeking motivations of women with breast cancer following mastectomy.	Hope; self-esteem; Return to life; available social support resources
Radina et al. (2011)¹⁹	USA	Semi-structured interviews	35 breast cancer survivors	Exploring patients’ perspectives on when and how to seek information.	Passive versus active seekers of health information; use of health information in treatment and self-care decisions

Review findings

A summary of the results and synthesized findings is presented in Table 3. The synthesis process integrated 44 individual findings extracted from the 12 included studies, which were grouped into nine categories. These categories were further aggregated to form three overarching synthesized findings: (1) internal psychological drivers motivating information-seeking; (2) the influence of care context and support systems on information-seeking; and (3) individual empowerment and practical constraints on seeking behavior.

Table 3.

Qualitative synthesis themes, sub-themes, and inclusion in papers.

Analytical themes	Sub-themes	Descriptive themes	Illustrative quotations from participants	Studies that included
1. Internal psychological drivers motivating information-seeking	1.1. Uncertainty and the need to re-establish a sense of control	1.1.1. Loss of control and uncertainty	"If I knew all this information clearly, I would not feel confused about my condition every day, such as ‘what is this?’ and ‘what should I do?’ I would feel much easier and relaxed.”“For me, when I was diagnosed, I just felt like I lost control over [my] body and what it was doing."	Wang et al., 2021Chen et al., 2023
		1.1.2. Reduce anxiety and uncertainty	"Before I got sick, I didn't understand this and ate whatever I wanted, but I've changed the way I eat since then.”“I got nervous for everything before my illness (even for material things), I was sedentary, I did not have any diet, but now I am not so anymore, I’m constantly very careful about my health, I always faithfully observe my diet, I do not repeat my past improper behavior…”“So, this was a way of gathering information for me and staying strong and knowledgeable and knowing what was going on."	Latifi et al., 2018Radina et al., 2011Chen et al., 2023
	1.2. Perceived cognitive gaps and concrete information needs	1.2.1. Health information seeking and validation	"I experience a decrease in sexual desire after the operation. I don’t know what causes it.”“When coming out of something I don’t understand, have to search right away.”“We need to know whether we need to stop or stick to it.”“I was able to, you know, sort of verify that or corroborate it with the internet.”“Now we are just confused. Some say he should eat meat. Some say he should not. I do not know.”“I was trying to find information about what treatments are available and things like that, but I kept on finding that every person is different, so I found that trying to find out the different grades and things was difficult.”“I searched much about my disease."	Latifi et al., 2020Zhong et al., 2024Shin et al., 2020Stacy et al., 2024Mousavi et al., 2022Leydon et al., 2000Latifi et al., 2018
		1.2.2. Disease control and management	"Should I take protein powder for my condition? What kind of protein powder should I choose? Or do I need to consult a Chinese medicine practitioner?”“At first I thought I would be done with the fistula, but then I heard that there would be stoma complications if I didn't take care of the fistula properly, and I still don't know how to take care of the fistula.”“I am trying to ask my doctor to tell me that to which extent would chemotherapy be damaging to my body?”“At that time, I did not know what lymphoma meant at all. I searched on Google with my cell phone and found that it is a lump inside the lung."	Chen et al., 2023Liu et al., 2023Latifi et al., 2020Mousavi et al., 2022
		1.2.3. Pre-appointment health preparation	"The source of the disease, how it can be healed and how it can be completely removed. … (From Baidu) [I learned] about the background of this hospital selection.”“Like, but I do take the time to read the writings of the doctor.So I had a little bit of information before meeting with the doctor.”“I'm not sure that it [health information] aided me in making decisions with care, but it made me much more able to talk fluently with my nurse practitioner and physicians."	Zhong et al., 2024Loeb et al., 2024Radina et al., 2011
	1.3. Emotional regulation and hope maintenance	1.3.1. Enhances treatment confidence	"I just want to know what's the matter with me, and if I can get well again. That's the most important thing to me.”“A lot of the information I thought was really helpful.”“Knowing sufficient information would let me have the feeling of certainty.”“ ‘What is this doing? What is this drug?’ But I guess it just made me feel more confident and in control of what was going on with me and my body."	Friis et al., 2003Loeb et al., 2024Wang et al., 2021Radina et al., 2011
		1.3.2. Maintaining hope provides them with a sense of control over their illness	"I didn’t know what to expect with the treatment, I was optimistic. I couldn’t even think about how I could do chemotherapy. I prepared my mind for whatever it takes, [to] follow the rules of the experts; they have said that this is what I’ve go to do to get better, and I’ve got to—whatever way, shape, or form—get better.”“I kept telling myself, do not think I’m going to die, many people survived this disease with having surgery, science has progressed, new treatments are coming … I said my disease must be harnessed."	Leydon et al., 2000Latifi et al., 2018
		1.3.3. The belief to be better	"I would like to know something about the advances in this field, but it is something I will try, if I have the courage and the energy.”“I prepared my mind for whatever it takes, [to] follow the rules of the experts; they have said that this is what I’ve go to do to get better, and I’ve got to—whatever way, shape, or form—get better.”“He felt because I was so young and I had a young child that I needed to be more aggressive than the other doctor was recommending."	Friis et al., 2003Leydon et al., 2000Radina et al., 2011
2. The influence of care context and support systems on Information-seeking	2.1. Quality of clinician–patient communication and the hierarchy of information credibility	2.1.1. Medical staff was the main and trusted information endpoint	"Doctors know such problem better than anyone”“I chose not to do that because I felt comfortable with my physician. I always had liked him [physician], and I trusted hisopinion.”“We asked the doctors directly and communicated with them frequently … after meeting our doctor, we cooperated with him for treatment and no longer asked others”“I talked to my doctor—my urologist and oncologist, two separate ones, and got some good information from them.”“[I want to learn information from doctors] because doctors are authorities and professionals. Their words are much more reliable and believable."	Latifi et al., 2020Radina et al., 2011Zhong et al., 2024Loeb, 2024Wang, 2021
		2.1.2. Miscommunication with healthcare professionals	"I try to tell my doctor several times, but I feel embarrassed and ashamed.”“The consultant said, ‘Have you got any questions?’ and I had, but I felt that there was this huge waiting room filled with people.”“Not 100 per cent … even 80 to 90 per cent … He won’t tell! How and what could you expect me to get such information [from the doctor]? He has no idea, me neither!”“I think the doctors explain it too technically, and you can’t always understand it, plus when you are the patient and you’re told you have cancer, you don’t hear anything else the doctor has said."	Latifi et al., 2020Leydon et al., 2000Wang et al., 2021Radina et al., 2011
		2.1.3. Insufficient doctor explanations	"They were very general and unprofessional about nutrition, and because of my poor nutritional status, I was referred to the nutrition clinic.”“One of the teachers who gave us a lecture said that it was most dangerous to have anus protection above 5 cm, and I was exactly 5 cm away from my anus, so I was hesitant for a long time to have the stoma diverted, because I wanted to have anus protection and I was afraid that the tumor would not be cleaned up.”“My doctor doesn’t really want to completely answer my questions.”“Maybe they don’t tell you everything—all the side effects—because they think it will frighten you.”“You know, there are so many patients that the doctors cannot detail everything to us.”“Because [doctors] really don’t know the answers to a lot of questions."	Chen et al., 2023Liu et al., 2023Latifi et al., 2020Leydon et al., 2000Radina et al., 2011
		2.1.4. Appointment and time constraints	"But (in this case), they are too busy, and it is tough to get reservation. Even when we do meet, they don’t have time to explain things thoroughly.”“They [doctors] are busy and they don’t have enough time to talk with us unless it is an urgent issue."	Shin et al., 2020Wang et al., 2021
		2.1.5. Challenges in discerning reliable health information online	"I have difficulties to find exactly the desired information because it is necessary to handle a lot of information.”“Information is difficult in the beginning because I couldn’t look at the relevant bits."	Shin et al., 2020Leydonet al., 2000
	2.2. Socio-cultural contexts and influences	2.2.1. Family members act as information agents for the search	"I mean, follow my son and doctors. What to do, what to do, what to take medicine.”“How he had experienced it and how I would probably experience it too.”“I have six daughters. So, anything I need to know, they look it up."	Zhong et al., 2024Friis et al., 2003Loeb et al., 2024
		2.2.2. Social disconnection reduces interaction willingness	"Since the diagnosis of cancer, I feel that I am further isolated from others, so I am not willing to communicate with others anymore. For example, when I come back home from hospital, I usually walk around alone and seldom have a chat with others."	Wang et al., 2021
		2.2.3. Fearing judgment or pity	"When I was diagnosed and the doctor told me that I would need to have a stoma as part of the treatment, to be honest, I was a bit overwhelmed. After all, I was still young, I was afraid that people would look at me differently, and I was embarrassed to have a stoma bag hanging on my body."	Liu et al., 2023
		2.2.4. Prayer as a path to answers	"I think I’ve found my way of coping through God—just pray, pray, pray.”“I always whispered prayers. I believed that God helps me to heal."	Leydon et al., 2000Latifi et al., 2018
		2.2.5. God's intervention will promote their healing	"Now I rely on God, and whatever God wills will be done."	Mousavi et al., 2022
	2.3. Accessibility of the information environment as a catalyst	2.3.1. Being drawn to cancer-related articles	"I had already, basically for me through my entire adult life whenever any newspaper article or magazine article said, you know, breast cancer, of course I was riveted to it."	Radina et al., 2011
		2.3.2. Brochures spark interest in disease knowledge	"Originally, I hadn't noticed Chinese medicine, but I happened to see a brochure on Chinese medicine dietary therapy at the entrance, so I wanted to learn more about it.”“When I got home, I followed the advice in the pamphlet on disease publicity and refrained from eating foods that would easily produce gas and irritate the intestines. However, I found that some of the foods recommended on the pamphlet would cause my stools to become diluted after eating them, so what do you think is wrong with this?"	Chen et al., 2023Liu et al., 2023
		2.3.3. Health info appears automatically online	"I didn’t even search for anything, and it (a video containing health information) would pop up … I don’t know how it came up. As soon as you opened your phone, it would pop up this video."	Zhong et al., 2024
3. Individual empowerment and practical constraints on seeking behavior	3.1. Health literacy and digital literacy	3.1.1. Having limited medical knowledge	"I don’t know much about [medical knowledge], and my search is very general.”“I haven’t had that much experience with the internet."	Zhong et al., 2024Loeb et al., 2024
		3.1.2. Low educational levels	"I usually cannot find the information that I want to know due to my poor literacy. I am illiterate. I have never received any formal education.”“I just didn’t know enough to really care one way or the other."	Wang et al., 2021Radina et al., 2011
		3.1.3. Find medical jargon confusing	"My doctor tell me that you have to receive adjuvant therapy to prevent metastasis formation, when I ask my doctor, I don’t understand what you are saying.”“I don’t know much about [medical knowledge], and my search is very general.”“I was looking up stuff, but I didn’t know what I was looking up, you know? Like, for example, I saw a Gleason score. I didn’t know what a Gleason score was. Then I’m saying three plus four as a Gleason score, or four plus three. Three plus four, four plus three equals seven.”“A high or low grade, T or B cell lymphoma. It's no good anyway, because I don’t know the difference.”“I think the doctors explain it too technically, and you can’t always understand it."	Latifi et al., 2020Zhong et al., 2024Loeb et al., 2024Leydon et al., 2000Radina et al., 2011
		3.1.4. Commercial ads hinder access to reputable health information	"Ads pop up all the time, and they make me enter my name, like it's a scam.”B"aidu's search for things is too laborious and not particularly accurate, with too many advertisements.”“The advertisements become sneakier. They look like professional news but in fact it was an advertisement."
		3.1.5. Encountering unregulated or alarming content during their searches	"The web page requires personal information. It looks like a scam.”“There are too many advertisements, too many. It is hard to tell which one is good and which one is selling products."
	3.2. Physical and cognitive capacity for coping	3.2.1. Treatment-related physical symptoms influence health information seeking	"I experience a decrease in sexual desire after the operation. I don’t know what causes it.”“When you are not feeling well, … you don’t ask so much.”“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."	Latifi et al., 2020Friis et al., 2003Wang et al., 2021
		3.2.2. Different emotional tolerance to disease	"I’m almost sixty and I barely know any words, let alone searching online for things. The clinic isn’t far from my home, but I hardly ever go there to ask anything. I don’t want everyone to know I’m sick — it's not a good thing, and I don’t like doing that.”“At a party, I ask my sister-in-law's girl, who is a doctor, for the use of tamoxifen and its side effects. At this moment my relative says, she has breast cancer. Perhaps she doesn’t have any bad intentions, but I am immediately irritated and annoyed and would prefer not to ask the rest of my questions.”“Sometimes … I feel that it would be worse if I learned more. Instead, learning little might be bet-ter. For instance, if my doctor told me that the review results were good, of course, I would be happy. However, if the results were not good, I would have totally different emotions.”“The answer is different for each … it's all a mess … right, right, right, so just take a look at it and it’ll just fall apart. The impression is not very good.”“I kept telling myself, do not think I’m going to die, many people survived this disease with having surgery, science has progressed, new treatments are coming … I said my disease must be harnessed."	Liu et al., 2023Latifi et al., 2020Wang et al., 2021Zhong et al., 2024Latifi et al., 2018
	3.3.Socioeconomic resources	3.3.1. Poor family economic conditions	"Last time I was discharged from the hospital, I only rested for a week. There was a lot of farm work waiting to be done in the fields, and if I didn't work, I wouldn't be able to get any money, and my family's condition was not too good, so I didn't have the time to inquire about that at all.”“My husband can’t afford to pay for my chemotherapy.”“I got nervous for everything before my illness (even for material things)."	Liu et al., 2023Latifi et al., 2020Latifi et al., 2018
		3.3.2. High cost	"250,000 rails for fortnightly visit to doctor for my husband, who works in the firm as a worker and has no insurance coverage, is a lot of money."	Latifi et al., 2020

Internal psychological drivers motivating information-seeking

Uncertainty and the need to re-establish a sense of control

Uncertainty regarding disease prognosis, treatment side effects, and changes in life trajectory served as a fundamental driver for patients to seek health information. A cancer diagnosis often triggered a profound sense of losing control over one's body and life.^23,25,26 To manage resultant anxiety and rebuild a sense of agency, patients actively pursued information to understand their condition, correct misconceptions, and plan for life adjustments.^22,23 This process manifested differently across information-seeking channels. In online contexts, it frequently involved broad scanning for generalized information such as disease knowledge and survival statistics. In offline interactions, particularly with healthcare providers, the focus shifted toward seeking personalized, definitive answers about treatment plans and prognosis, which patients described as essential anchors for navigating their uncertainty.

Perceived cognitive gaps and concrete information needs

A distinct and targeted motivation to seek information emerged when patients perceived a gap between their current knowledge (“what they knew”) and the specific information they felt they needed (“what they wanted to know”).^{19,21,24,25,28–30} Patients expressed a clear desire for detailed, practical knowledge, such as the specific harms of chemotherapy, methods for nutritional assessment, ostomy care, dietary restrictions, and medical reimbursement procedures.^19,23,24 This need for concrete answers often initiated a complementary seeking pathway. It typically began with preliminary online searches to gather a broad range of options and general explanations, which then informed more in-depth, personalized verification during offline consultations with their doctors. Participants indicated that seeking information served not only to fill knowledge voids but also to empower them to ask informed questions during clinician–patient communication. This active engagement was seen as a crucial strategy to enhance their sense of involvement and regain a measure of control over treatment-related decisions.^21,26,27,29

Emotional regulation and hope maintenance

HISB also functioned as a critical process for patients’ emotional regulation. Accessing positive information, such as stories of successful recovery, was reported to directly instill hope, with some patients describing how maintaining hope itself fostered a renewed sense of control over their illness.^{19,20,22,23,25,28} Consequently, the proactive act of seeking information was perceived as a positive, forward-looking step toward recovery. Conversely, the fear of encountering negative information, such as distressing statistics about poor prognosis—triggered deliberate avoidance.^19,20,27,29 Some patients adopted a mindset of “what you don't know can't hurt you,” actively shielding themselves from potentially anxiety-provoking information, particularly within the less-controlled online environment.^{19,20,22,24,26–29} This pattern suggests that information seeking and avoidance are two sides of the same coin, both serving the overarching goal of emotional self-protection and the preservation of hope at different stages of the illness journey.

The influence of care context and support systems on information-seeking

Quality of clinician–patient communication and the hierarchy of information credibility

Clinician–patient communication served as the cornerstone of patients’ information-seeking behaviors. When patients perceived the communication to be of high quality—characterized by sufficient time, attentiveness, and a sense that their informational needs were met—they were inclined to rely on healthcare professionals as their primary and most trusted source.^{19,21,23,25,29} Conversely, experiences of rushed consultations, communication gaps, or unmet needs (e.g., patients reporting that their doctors could not fully address their questions) directly motivated patients to seek information elsewhere.^{22,23,26–29} This dynamic established an implicit hierarchy of information credibility among patients. In-person interactions with clinicians were positioned at the top as the authoritative endpoint. Online healthcare platforms, exemplified by mainstream applications like “Ping An Good Doctor”¹⁹ (a Chinese app providing consultations with licensed physicians), were utilized as a supplementary source for obtaining second opinions and for verification. In contrast, generalized online information and commercial advertisements were accorded lower trust and were typically used only for preliminary reference.^19,26,30 Thus, deficiencies in offline communication directly drove both the frequency and necessity of online information-seeking.

Socio-cultural contexts and influences

Patients’ HISB are deeply embedded within their socio-cultural networks. In collectivist-oriented contexts, information seeking often becomes a shared family endeavor, with family members acting as information-seeking agents.^25,26 While this provides essential practical and emotional support, it may also inadvertently constrain the patient's sense of autonomy. Concurrently, the stigma associated with a cancer diagnosis can lead patients to withdraw from offline social interactions, increasing their reliance on relatively anonymous online patient communities for peer support and experiential knowledge.^22,27 Furthermore, culturally rooted beliefs, such as dietary therapy for health maintenance or notions of illness fatalism—shape distinctive information preferences.^25,26,28 These beliefs influence how patients determine what information is valuable and whom to trust, creating a tension between relying on the authority of biomedical professionals and valuing traditional or experiential knowledge.

Accessibility of the information environment as a catalyst

The accessibility of the information environment itself could passively trigger information-seeking behavior. Encounters with readily available information, such as coming across a brochure in a clinic, receiving a browser notification for a health-related article, or receiving a recommendation from a fellow patient—often served as a catalyst, shifting patients from a state of passive reception to one of active exploration.^19,23,26,27 This model of passively-initiated seeking underscores the importance of strategically optimizing information displays in physical clinical settings and the delivery of health content on digital platforms. These touchpoints can function as effective entry points to activate and support patients’ proactive engagement with health information.

Individual empowerment and practical constraints on seeking behavior

Health literacy and digital literacy

Insufficient health and digital literacy presented significant challenges for cancer patients. Limited health literacy, encompassing difficulties in understanding medical terminology and core concepts, hindered patients’ ability to comprehend, evaluate, and apply health information to self-care during both online searches and offline consultations.^19,22–24^,28,29 Concurrently, a lack of digital literacy directly impacted the efficiency of online searches and the capacity to critically appraise information, leaving patients vulnerable to information overload, commercial advertisements, and difficulty distinguishing between professional content and marketing.^19,26,30 Deficiencies in these intertwined literacies posed a particularly pronounced barrier for older patients and those with lower levels of formal education.

Physical and cognitive capacity for coping

Treatment-related physical symptoms, such as fatigue and pain, coupled with the associated cognitive burden,^20,25,29 significantly diminished patients’ overall capacity for active coping. In this diminished state, patients’ executive functions and motivation to process complex information tasks were compromised, rendering their information-seeking behavior more reactive and passive. Additionally, individual differences in emotional tolerance served as a key moderator,^{19,23,25,27,29} influencing whether a patient would actively engage with or potentially avoid stressful health information.

Socioeconomic resources

Financial constraints posed a direct and practical barrier to information access. Economic pressures limited patients’ ability to afford the time and costs associated with comprehensive in-person consultations, such as multiple outpatient visits or seeking second medical opinions.^25,27,29 Concurrently, these constraints restricted access to quality online resources, including necessary devices, internet data, and paid professional consultations.^22,23 When low socioeconomic status intersected with limited health and digital literacy, it created a compounded, more profound layer of inequality in health information access.

Discussion

This review synthesized all identified qualitative studies reporting on factors influencing HISBs in cancer patients. We employed the rigorous Joanna Briggs Institute (JBI) meta-aggregation approach, coupled with a critical appraisal of findings’ credibility, to enhance the trustworthiness, reliability, and transparency of our data synthesis. The analysis yielded three overarching synthesized findings from 12 studies, which collectively indicate that cancer patients’ HISB is influenced by a constellation of interconnected factors: the need to manage uncertainty and rebuild a sense of control; perceived cognitive gaps and concrete information needs; emotional regulation and hope maintenance; the quality of clinician–patient communication and the resultant hierarchy of information credibility; socio-cultural contexts and influences; the accessibility of the information environment as a catalyst; health and digital literacy; physical and cognitive capacity for coping; and socioeconomic resources. Our findings suggest that patients’ HISB is not a singular, linear process of either facilitation or hindrance. Instead, it represents a dynamic interaction between intrinsic psychological drives, external contextual factors, and individual capacity and resources. This systemic understanding helps reconcile seemingly contradictory findings in the literature regarding patients’ information needs and avoidance, providing a nuanced framework for offering personalized support across different contexts.

First, the findings reveal that the core dynamic driving patients toward or away from information is a quest for a dynamic balance between managing disease-related uncertainty and maintaining emotional hope. On one hand, concerns about disease risks, treatment side effects, and the future create a strong impetus for information-seeking. Patients actively acquire knowledge to rebuild a sense of control, validate assumptions, and participate in decision-making—a process consistent with the danger control process outlined in the Planned Risk Information Seeking Model.³¹ On the other, aligning with the fear control process,³¹ a profound fear of negative information (e.g., fearing poor prognosis statistics) and a protective need to preserve hope can lead patients to engage in strategic information avoidance.³² This avoidance is not necessarily passive or ignorant; rather, it constitutes an adaptive strategy aimed at maintaining immediate psychological equilibrium and avoiding being overwhelmed by difficult facts, mirroring the coping style of blunters described in the Monitoring and Blunting Hypothesis.³² Consequently, clinical assessment of an individual cancer patient's information preferences is crucial. Healthcare providers must discern whether the patient is currently acting more as a “monitor” or a “blunter”—whether they seek information for active participation or selectively avoid it to preserve hope and calm. This requires respecting patient choice and avoiding simplistic judgments that equate lower information-seeking with negative behavior. Interventions should shift focus from merely encouraging more information-seeking to supporting more adaptive information management, adopting strategies most beneficial for the patient's current adaptation.

Second, patients’ HISB is deeply shaped by their socio-cultural context, which helps explain the prevalent “online preview, offline verification” pattern observed in this review. While patients value online channels for their accessibility, a finding supported by prior research,³³ they maintain a strong trust in the authority of offline medical professionals, a perspective influenced by traditional Chinese views.³³ When clinician-provided information is perceived as insufficient, patients often turn to online sources to fill knowledge gaps and prepare questions, aiming to engage more effectively in shared decision-making during clinical visits. Within the Chinese context, family involvement is particularly salient. Reflecting collectivist norms, patients frequently delegate information-seeking tasks to family members, who assist with searching, filtering, and relaying information.³⁴ While this provides essential support, it may also affect patient autonomy. Cultural factors such as cancer-related fatalism and stigma further shape behavior,³⁵ often leading patients to seek emotional support and experiential knowledge from anonymous online communities rather than offline networks. Research notes the complex coexistence of fatalistic views and active information-seeking in some Asian populations, highlighting this nuanced dynamic. Additionally, information needs vary considerably by cancer type.¹² For specific concerns, such as functional recovery after prostate or head-neck cancer surgery—publicly available online information is often inadequate. In such cases, patients rely more on specialist clinicians or condition-specific support groups, underscoring the need for targeted, disease-specific information resources.

Finally, irrespective of motivation and context, an individual's ability to translate information needs into effective action is fundamentally constrained by their health literacy, digital literacy, and available socioeconomic resources. This review found that health information overload, variable information quality, and complex medical terminology constitute major external barriers. Internally, patients’ limitations in identifying, evaluating, and applying information act as a bottleneck for their HISB. The convergence of these internal and external barriers often leads to frustration during the information-seeking process. Repeated frustration can not only induce anxiety and erode trust in the healthcare system but may also lead patients to completely avoid information or settle for misleading content, potentially resulting in adverse health outcomes and diminished quality of life.^36–38 Therefore, any future intervention must consider enhancing patients’ health and digital literacy as a foundational element, while also realistically accounting for their physical/mental state and economic circumstances.

Based on these insights, we propose the following implications. Healthcare providers should dynamically assess patients’ information preferences and psychological states, and actively recommend curated, reliable resources to make the digital environment a collaborative tool. Patient-facing platforms should adopt a patient-centered design and use profiling to deliver timely, precise information services. For patients affected by fatalism or stigma, culturally sensitive communication and family support should be encouraged. Health systems and policymakers should focus on building a reliable, comprehensible, and navigable health information ecosystem, with targeted resources for underserved cancer types and vulnerable populations. Digital platforms could integrate natural language processing (NLP) tools, such as QA systems,³⁹ plain-language summaries,⁴⁰ and translation—to create intelligent interfaces⁴¹ that help patients understand information more effectively. Future research should translate the systemic factors identified here into actionable assessment tools and personalized interventions, testing their effectiveness across diverse groups and cancer types.

Limitations

This study has several limitations. First, despite stringent inclusion and exclusion criteria, the selection of qualitative studies inherently involves a degree of subjectivity. To minimize bias, disagreements were resolved by an independent, trained third researcher. Second, language constraints limited the inclusion of studies to English and Chinese, potentially excluding relevant research in other languages. Third, the inability to access original interview transcripts required synthesizing findings based on extracted quotes and researcher interpretations. Lastly, the quality assessment of included studies revealed that only one study met the highest quality rating (A), while the others were rated (B), indicating the need for higher-quality research in this field.

Clinical implications

This review's strengths include a comprehensive search strategy and rigorous application of JBI meta-aggregation with credibility assessment, which support the trustworthiness of the findings. The synthesis indicates that HISB among cancer patients is shaped by the dynamic interaction of psychological, socio-contextual, and personal-capacity factors. This integrated perspective informs several practical implications. At the individual level, clinicians should tailor information support by assessing whether patients seek control or hope preservation, rather than simply promoting information-seeking. Contextually, recognizing the influence of culture, family, and clinical relationships is essential; for example, in Chinese contexts, family networks can be constructively engaged while respecting autonomy. Providers may also guide patients to vetted online resources. At the capability level, interventions should concurrently build health and digital literacy while addressing structural barriers related to cost, education, and technology access.

Conclusion

This systematic review synthesizes qualitative evidence on factors influencing HISB in cancer patients. The findings reveal HISB as a complex adaptive process shaped by the interplay of internal psychological dynamics, external contextual influences, and individual capacities and resources. Enhancing effective HISB requires a personalized and context-sensitive approach that recognizes how these dimensions interact. Future research should develop tailored assessment tools and multi-level interventions, and examine the dynamic evolution of HISB across the illness trajectory, to better support cancer patients in managing their health and improving quality of life.

Supplemental Material

sj-docx-1-dhj-10.1177_20552076261418908 - Supplemental material for Facilitators and barriers to health information-seeking behavior in cancer patients: A meta-synthesis

Supplemental material, sj-docx-1-dhj-10.1177_20552076261418908 for Facilitators and barriers to health information-seeking behavior in cancer patients: A meta-synthesis by Wenjie Wang, Yuxing Xie, Xu Liu, Han Yan, Yujing Chen, Li Wang and Li Ning in DIGITAL HEALTH

Supplemental Material

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Supplemental material, sj-docx-2-dhj-10.1177_20552076261418908 for Facilitators and barriers to health information-seeking behavior in cancer patients: A meta-synthesis by Wenjie Wang, Yuxing Xie, Xu Liu, Han Yan, Yujing Chen, Li Wang and Li Ning in DIGITAL HEALTH

Supplemental Material

sj-docx-3-dhj-10.1177_20552076261418908 - Supplemental material for Facilitators and barriers to health information-seeking behavior in cancer patients: A meta-synthesis

Supplemental material, sj-docx-3-dhj-10.1177_20552076261418908 for Facilitators and barriers to health information-seeking behavior in cancer patients: A meta-synthesis by Wenjie Wang, Yuxing Xie, Xu Liu, Han Yan, Yujing Chen, Li Wang and Li Ning in DIGITAL HEALTH

Footnotes

Acknowledgments

We thank all authors who participated in this study.

ORCID iDs

Wenjie Wang

Yuxing Xie

Xu Liu

Han Yan

Yujing Chen

Li Ning

Ethical approval

Not applicable.

Consent to participate

Not applicable.

Consent for publication

All the authors approved the to this journal.

Contributorship

All authors contributed substantially to study design, data collection, analysis, interpretation, and quality assessment. Study design: Wenjie Wang, Yuxing Xie, Li Ning. Acquisition of data: Wenjie Wang, Yuxing Xie, Xu Liu, Han Yan. Data analysis and interpretation: Wenjie Wang, Yuxing Xie, Xu Liu, Li Ning. Manuscript preparation: Wenjie Wang, Yuxing Xie, Yujing Chen. Manuscript review: Li Ning, Li Wang, Yujing Chen.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Zhejiang Provincial Basic Public Welfare Research Program Project (grant number LGF22H160079); Zhejiang Provincial Medical and Health Science and Technology Plan Clinical Research Application Project (grant number 2023KY178); and Hangzhou City Health Science and Technology Plan Key Project (grant number ZD20240013).

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data availability statement

All data analyzed for this review are included in this published article.

Supplemental material

Supplemental material for this article is available online.

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