Understanding the information needs of public health practitioners: a literature review to inform design of an interactive digital knowledge management system

The need for rapid access to information to support critical decisions in public health cannot be disputed; however, development of such systems requires an understanding of the actual information needs of public health professionals. This paper reports the results of a literature review focused on the information needs of public health professionals. The authors reviewed the public health literature to answer the following questions: (1) What are the information needs of public health professionals? (2) In what ways are those needs being met? (3) What are the barriers to meeting those needs? (4) What is the role of the Internet in meeting information needs? The review was undertaken in order to develop system requirements to inform the design and development of an interactive digital knowledge management system. The goal of the system is to support the collection, management, and retrieval of public health documents, data, learning objects, and tools.Method:The search method extended beyond traditional information resources, such as bibliographic databases, tables of contents (TOC), and bibliographies, to include information resources public health practitioners routinely use or have need to use—for example, grey literature, government reports, Internet-based publications, and meeting abstracts.Results:Although few formal studies of information needs and information-seeking behaviors of public health professionals have been reported, the literature consistently indicated a critical need for comprehensive, coordinated, and accessible information to meet the needs of the public health workforce. Major barriers to information access include time, resource reliability, trustworthiness/credibility of information, and “information overload”.Conclusions:Utilizing a novel search method that included the diversity of information resources public health practitioners use, has produced a richer and more useful picture of the information needs of the public health workforce than other literature reviews. There is a critical need for public health digital knowledge management systems designed to reflect the diversity of public health activities, to enable human communications, and to provide multiple access points to critical information resources. Public health librarians and other information specialists can serve a significant role in helping public health professionals meet their information needs through the development of evidence-based decision support systems, human-mediated expert searching and training in the use information retrieval systems.     

Supporting children with burns: Developing a UK parent-focused peer-informed website to support families of burn-injured children

BackgroundChildren’s burn injuries can have a significant psychosocial impact on parents. However, the stress involved in caring for a child following a burn can often go unrecognized and does not necessarily prompt help seeking by parents.ObjectiveIt is common for adults to seek health-related support and information via the Internet. Many benefit from immediate and easy access to online psychological interventions. A prototype burn-specific, parent-focused, peer-informed, supportive website, designed to provide easy access to information and psychoeducation, was created and tested for acceptability.Patient involvementUsing a partnership-based method of website development, parents and professionals (clinical, academic and support organizations) were recruited and their particular expertise was acknowledged and valued. A participatory action approach was adopted to determine the acceptability of the website for parents/carers.Methods31 participants (9 parents, 22 professionals) tested a prototype version of the website. Data was collected using the eHealth Impact Questionnaire and the concurrent think-aloud protocol.ResultsParents and professionals had favorable opinions of the website. Parents’ ratings tended to be more favorable than professionals’, which was significant for the information and presentation. Participants’ thoughts were categorized into seven topics: need, structure/navigation, trust/relevance, language/comprehension, therapeutic content, mode of delivery, and suggested improvements.DiscussionMany practical and psychological barriers can prevent parents of burn-injured children accessing psychosocial support and contribute to a feeling of isolation. Participants felt that the website would be a valuable addition to UK pediatric burn care. The existence of an accessible resource could help to normalize parents’ experience of their child’s injury and reduce their perceived isolation, although peer interaction is not provided by the website.Practical valueThis online resource, hosting information and peers’ personal experiences, offers promising and exciting opportunities to empower parents whilst providing accessible supportive advice to encourage self-care and formal/informal support seeking when necessary.     

Incidental health information use and media complementarity: a comparison of senior and non-senior cancer patients

OBJECTIVE: This study compares the health information and media usage patterns of older adults diagnosed with cancer with their younger adult counterparts and is based theoretically in media complementarity theory [Dutta-Bergman MJ. Complementarity in consumption of news types across traditional and new media. J Broadcast Electron 2004;48:41-60; Dutta-Bergman MJ. Interpersonal communication after 9/11 via telephone and Internet: a theory of channel complementarity. New Media Soc 2004;6:659-73] and health information seeking and scanning research [Shim M, Kelly B, Hornik R. Cancer information scanning and seeking behavior is associated with knowledge, lifestyle choices, and screening. J Health Commun 2006;11:157-72]. METHODS: A secondary analysis of the Health Information National Trends Survey (HINTS) II data collected by the National Cancer Institute (NCI) is performed to investigate differences in the health information behavior of younger and older adult cancer patients. The sample size was 401, with 260 non-senior cancer patients and 141 senior cancer patients. RESULTS: Younger adults diagnosed with cancer were more likely to gain information about health incidentally through their use of the Internet and to seek health information for others on the Internet than senior cancer patients. Complementarity of active health information seeking and incidental health information use online was supported with senior cancer patients, while complementarity of incidental health information use between traditional media channels and the Internet was partially confirmed with younger adults. CONCLUSION: This study reveals similarities and differences in the health information and media usage behavior of younger and older adults diagnosed with cancer. It also provides partial support for media complementarity theory. PRACTICE IMPLICATIONS: The Internet is not a panacea for health information. Health professionals need to provide written instructions to older adult cancer patients because they do not rely on the Internet for information about their illness and/or treatment.     

Examining information-seeking behavior in genetic testing for cancer predisposition: A qualitative interview study

ObjectiveThis study aims to assess information needs and information sources and seeks to illustrate what at-risk individuals consider motivators of and barriers to information-seeking before and after genetic testing for cancer predisposition.MethodsSemi-structured interviews with people seeking genetic counseling in Switzerland were analyzed qualitatively using thematic analysis. Wilson's model of information behavior was the theoretical framework.ResultsWe identified four themes that illustrate motivators of and barriers to information-seeking: attitudes and emotions; knowledge; social environment; and demographic factors. We also elucidated information needs and collected participants' information sources.ConclusionThis study£s empirical approach helps healthcare professionals to understand their patients' behaviors and wishes concerning information-seeking more concretely than theoretical models alone. The study also identifies information gaps, especially outside the genetic counseling setting.Practice implicationsGenetic counselors and other healthcare professionals need to purposefully assist patients in finding trustworthy and accessible information. Healthcare professionals in all disciplines need to be educated about predictive genetic testing.     

Differences in information seeking among breast,prostate, and colorectal cancer patients: Results from a population-based survey

ObjectiveThere is much research describing cancer patients’ information needs and their use of the Internet, print media, and other sources to fulfill these needs. Yet little is known about whether patients with different types of cancer vary in their information needs and seeking behaviors. This study used population-based data to address this question.MethodsA sample was randomly drawn from the list of patients with breast, prostate, or colorectal cancer reported to the Pennsylvania Cancer Registry in 2005. Patients completed a mail survey (N = 2010); respective response rates were 68%, 64%, and 61%.ResultsColorectal cancer patients reported consistently less information seeking than breast and prostate cancer patients. Multivariate analyses revealed that differences by cancer type were not explained by sex or other demographics, disease stage, or treatment received. These differences were most pronounced among patients with early stage cancer.ConclusionCancer patients have myriad information needs and use a range of sources to satisfy these needs, but there appear to be important differences in information engagement by cancer type.Practice implicationsUnderstanding differences in information seeking among disease-specific populations may help guide future patient education and decision making across the care continuum.     

Unmet needs for information and psychosocial support in relation to quality of life and emotional distress: A comparison between gynecological and breast cancer patients

ObjectiveWe compared gynecological and breast cancer patients regarding their needs for information and psychosocial support, quality of life (QoL), and emotional distress and the relationship among these constructs.MethodsIn a multicenter, cross-sectional study in Germany, we evaluated 1214 female cancer patients (317 with gynecological cancer, 897 with breast cancer). We obtained self-reports of unmet needs, using a self-developed measure. We measured QoL with the EORTC QLQ-C30, symptoms of depression with the Patient Health Questionnaire (PHQ-9), and symptoms of anxiety with the Generalized Anxiety Disorder Scale (GAD-7).ResultsCompared to breast cancer patients, gynecological cancer patients felt less informed about several aspects of their disease, particularly regarding psychological support (p < 0.001), tended to have more unmet information needs, and reported lower QoL levels. Lower emotional functioning, but higher physical functioning were independent correlates of the level of unmet information needs. Depressive symptoms and higher physical functioning (only in breast cancer) were independent correlates of higher needs for psychosocial support.ConclusionCompared to breast cancer, gynecological cancer patients were less satisfied with the information received and reported lower levels of QoL.Practice implicationsBoth clinicians and policy makers should take efforts to address the higher needs of gynecological cancer patients.     

Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland

ObjectiveTo examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience.MethodsNationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed.ResultsHealth professionals were the most trusted source of information. Among information-seekers, higher health literacy levels were shown to be associated with lower subjective caregiver burden and, in turn, with higher caregivers’ satisfaction with own health.ConclusionCaregivers use information on different topics and coming from different sources. In order for information to improve the caregiving experience, however, caregivers need health literacy skills to make sense of it.Practice implicationsBuilding health literacy is a promising approach to support caregivers in their activities, reduce their subjective burden, and even to improve their health. Interventions should consider involving health professionals, as the most trusted source of information, and address both health-related and more practical issues.     

Health Information–Seeking Behavior of Seniors Who Use the Internet: A Survey

Background

The Internet is viewed as an important source for health information and a medium for patient empowerment. However, little is known about how seniors use the Internet in relation to other sources for health information.

Objective

The aim was to determine which information resources seniors who use the Internet use and trust for health information, which sources are preferred, and which sources are used by seniors for different information needs.

Methods

Questions from published surveys were selected based on their relevance to the study objectives. The Autonomy Preference Index was used to assess information needs and preferences for involvement in health decisions. Invitation to participate in this online survey was sent to the email list of a local senior organization (298 addresses) in the Netherlands.

Results

There were 118 respondents with a median age of 72 years (IQR 67-78 years). Health professionals, pharmacists, and the Internet were the most commonly used and trusted sources of health information. Leaflets, television, newspapers, and health magazines were also important sources. Respondents who reported higher use of the Internet also reported higher use of other sources (P<.001). Use of health professionals, pharmacists, leaflets, telephone, television, and radio were not significantly different; use of all other resources was significantly higher in frequent Internet users. When in need of health information, preferred sources were the Internet (46/105, 43.8%), other sources (eg, magazines 38/105, 36.2%), health professionals (18/105, 17.1%), and no information seeking (3/105, 2.8%). Of the 51/107 respondents who indicated that they had sought health information in the last 12 months, 43 sought it after an appointment, 23 were preparing for an appointment, and 20 were deciding if an appointment was needed. The source used varied by the type of information sought. The Internet was used most often for symptoms (27/42, 64%), prognosis (21/31, 68%), and treatment options (23/41, 62%), whereas health professionals were asked for additional information on medications (20/36, 56%), side effects (17/36, 47%), coping (17/31, 55%), practical care (12/14, 86%), and nutrition/exercise (18/30, 60%).

Conclusions

For these seniors who use the Internet, the Internet was a preferred source of health information. Seniors who report higher use of the Internet also report higher use of other information resources and were also the primary consumers of paper-based resources. Respondents most frequently searched for health information after an appointment rather than to prepare for an appointment. Resources used varied by health topic. Future research should seek to confirm these findings in a general elderly population, investigate how seniors seek and understand information on the Internet, and investigate how to reach seniors who prefer not to use the Internet for health information.     

Living with mesothelioma: A systematic review of patient and caregiver psychosocial support needs

ObjectivePractice guidelines emphasize the importance of investigating psychosocial distress in mesothelioma patients and family caregivers. We aimed to synthesize research on the psychosocial support needs of mesothelioma patients and their family caregivers.MethodsWe conducted a systematic review with a narrative synthesis and quality assessment. The review process adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.ResultsMEDLINE, EMBASE, Scopus, PsychArticles, and PsycINFO were searched until December 2020 and 37 studies in English met inclusion criteria. Most (n = 24) included mesothelioma patients as a very small proportion of their cancer samples. A narrative synthesis was conducted on the 13 studies including only mesothelioma patients (n = 297) and/or caregivers (n = 82). Patients and caregivers want improvements in the diagnosis delivery and access to palliative care. Patients want emotional support, patient-centered treatment, improved information about illness progression and death, and to meet others with mesothelioma. Caregivers want one-on-one practical and emotional support. Study quality varied.ConclusionsFew studies focus on the psychosocial support needs relevant to mesothelioma. Mesothelioma patients and family caregivers highlight targeted psychosocial care as an unmet need.Practice ImplicationsEfforts are required to design and test psychosocial interventions for this vulnerable and overlooked group.Protocol RegistrationPROSPERO (registration number CRD42020167852).     

Adapting a peer-led self-management program for breast cancer survivors in Switzerland using a co-creative approach

ObjectiveThe peer-led Cancer Thriving and Surviving Program (CTS) has demonstrated improved health outcomes for cancer survivors. We describe a co-creative process for adapting the CTS for breast cancer survivors in Switzerland and integrating the program into the clinical pathway of Swiss breast centers.MethodsA co-creative approach was employed. Breast cancer survivors and health care professionals (total n = 81) participated in three workshops, an online rating, and a consensus conference. An iterative cycle (evidence, ideas, refining, rating, and synthesis) guided the adaptation process.ResultsSurvivors involvement in the adaptation process allowed to tailor the self-management program to the psychosocial needs identified as the highest priority. New contents “Being a woman”, “Breast cancer and my (working) life” and “My exercise” were added to the CTS. Program duration was expanded from 6 to 7 weeks. Transition to follow-up care was considered as the optimal time point for program integration into the clinical pathway.ConclusionThe co-creative process may serve as a model in adapting supportive interventions for cancer. A subsequent pilot testing examined the feasibility and preliminary efficacy.Practice implicationsCombining expertise of health care professionals and patients to co-create a peer-led breast cancer self-management program may enhance acceptability and adoption.     

Entertainment or Health? Exploring the Internet Usage Patterns of the Urban Poor: A Secondary Analysis of a Randomized Controlled Trial

BackgroundImportant gaps remain in our knowledge of how individuals from low socioeconomic position (SEP) use the Internet for resources and in understanding the full range of activities they perform online. Although self-report data indicate that low SEP individuals use the Internet less than high SEP people for health information and for other beneficial capital-enhancing activities, these results may not provide an accurate overall view of online use.ObjectiveThe aim of this study was to determine the ways in which low SEP individuals use the Internet, including for entertainment, social networking, and capital-enhancing functions, and how they are associated with health information seeking.MethodsDetailed Web tracking data were collected from 118 low SEP individuals who participated in the intervention group of a randomized controlled trial that provided Internet access. Websites were grouped by topic, including categories of capital-enhancing websites that provided access to resources and information. Different types of online activities were summed into an Internet use index. Single and multiple negative binomial regression models were fitted with the Internet use index as the predictor and health information seeking as the outcome. Next, models were fitted with low, medium, and high Web usage in capital-enhancing, entertainment, and social network categories to determine their associations with health information seeking.ResultsParticipants used the Web for diverse purposes, with 63.6% (75/118) accessing the Internet for all defined types of Internet use. Each additional category of Internet use was associated with 2.12 times the rate of health information seeking (95% CI 1.84-2.44, P<.001). Higher use of each type of capital-enhancing information was associated with higher rates of health information seeking, with high uses of government (incident rate ratio [IRR] 8.90, 95% CI 4.82-16.42, P<.001) and news (IRR 11.36, 95% CI 6.21-20.79, P<.001) websites associated with the highest rates of health information seeking compared to their lowest use categories. High entertainment website use (IRR 3.91, 95% CI 2.07-7.37, P<.001) and high social network use (IRR 2.06, 95% CI 1.08-3.92, P=.03) were also associated with higher health information seeking.ConclusionsThese data clearly show that familiarity and skills in using the Internet enhance the capacity to use it for diverse purposes, including health and to increase capital, and that Internet usage for specific activities is not a zero sum game. Using it for one type of topic, such as entertainment, does not detract from using it for other purposes. Findings may inform ways to engage low SEP groups with Internet resources.     

Information needs and sources of information among cancer patients: a systematic review of research (1980-2003)

Understanding what cancer patients need to know and from whom they receive information during the course of care is essential to ensuring quality care. We reviewed 112 articles published from 1980 to 2003 and developed a typology summarizing cancer patients' information needs and the sources from which they receive information. The majority of articles focused on information needs and sources during the diagnosis and treatment phase. Thus, the most frequent information need was treatment-related (38.1%). The most frequent information source was health professionals (27.3%). We examined patients' information needs and sources along the continuum of care and found that during diagnosis and treatment, information needs about the stage of disease, treatment options, and side-effects of treatment were prominent; during post-treatment, patients continued to need information about treatment, and information about recovery was also important. Future research should examine cancer patients' information needs and sources throughout their cancer journey.     

Patient Perspectives on Online Health Information and Communication With Doctors: A Qualitative Study of Patients 50 Years Old and Over

Background

As health care systems around the world shift toward models that emphasize self-care management, there is increasing pressure for patients to obtain health information online. It is critical that patients are able to identify potential problems with using the Internet to diagnose and treat a health issue and that they feel comfortable communicating with their doctor about the health information they acquire from the Internet.

Objective

Our aim was to examine patient-identified (1) problems with using the Internet to identify and treat a health issue, (2) barriers to communication with a doctor about online health information seeking, and (3) facilitators of communication with a doctor about patient searches for health information on the Internet.

Methods

For this qualitative exploratory study, semistructured interviews were conducted with a sample of 56 adults age 50 years old and over. General concerns regarding use of the Internet to diagnose and treat a health issue were examined separately for participants based on whether they had ever discussed health information obtained through the Internet with a doctor. Discussions about barriers to and facilitators of communication about patient searches for health information on the Internet with a doctor were analyzed using thematic analysis.

Results

Six higher-level general concerns emerged: (1) limitations in own ability, (2) credibility/limitations of online information, (3) anxiety, (4) time consumption, (5) conflict, and (6) non-physical harm. The most prevalent concern raised by participants who communicated with a doctor about their online health information seeking related to the credibility or limitations in online information. Participants who had never communicated with a doctor about their online health information seeking most commonly reported concerns about non-physical harm. Four barriers to communication emerged: (1) concerns about embarrassment, (2) concerns that the doctor doesn’t want to hear about it, (3) belief that there is no need to bring it up, and (4) forgetting to bring it up. Facilitators of communication included: (1) having a family member present at doctor visits, (2) doctor-initiated inquiries, and (3) encountering an advertisement that suggested talking with a doctor.

Conclusions

Overall, participants displayed awareness of potential problems related to online health information seeking. Findings from this study point to a set of barriers as well as facilitators of communication about online health information seeking between patients and doctors. This study highlights the need for enhanced patient communication skills, eHealth literacy assessments that are accompanied by targeted resources pointing individuals to high-quality credible online health information, and the need to remind patients of the importance of consulting a medical professional when they use online health resources to diagnose and treat a health issue.     

Barriers and facilitators for an effective palliative care communication with older people: A systematic review

ObjectivesThe present mixed-method systematic review identifies facilitators and barriers in palliative care communication among health professionals and older people.MethodsThe review process was conducted by three reviewers who searched studies in four different databases (January 2009-January 2022), exploring experiences of communication among health professionals and older people without cognitive impairments. Relevant articles were quality assessed with a standardized tool.ResultsTwenty-eight articles were included and the following 5 clusters were identified: 1) training and education for health professionals, 2) team working and coordination among health professionals, 3) communication skills, 4) time and availability, 5) emotional, cultural and psychological factors. The articles highlighted the need for greater preparation of health professionals around the management of palliative care communication with older people.ConclusionPalliative care communication among health professionals and older people are characterized by several challenges. However, there are facilitating aspects that may be considered to improve the quality of communication.Practice implicationsFacilitators are promising approaches to support health professionals in providing high-quality palliative care communication to older people, developing a person-centred practice. Facilitators include palliative care training and educational opportunities for health professionals, like ELNEC Geriatric Curriculum, permitting them to develop specific competences in communication and aging.     

A systematic review of interventions for family caregivers who care for patients with advanced cancer at home

ObjectiveTo examine the characteristics of interventions to support family caregivers of patients with advanced cancer.MethodsFive databases (CINAHL, Medline, PsycINFO, Web of Science, and the Cochrane Library) were searched for English language articles of intervention studies utilizing randomized controlled trials or quasi-experimental designs, reporting caregiver-related outcomes of interventions for family caregivers caring for patients with advanced cancer at home.ResultsA total of 11 studies met the inclusion criteria. Based on these studies, the types of interventions were categorized into psychosocial, educational, or both. The characteristics of interventions varied. Most interventions demonstrated statistically significant results of reducing psychological distress and caregiving burden and improving quality of life, self-efficacy, and competence for caregiving. However, there was inconsistency in the use of measures.ConclusionsMost studies showed positive effects of the interventions on caregiver-specific outcomes, yet direct comparisons of the effectiveness were limited. There is a lack of research aimed to support family caregivers’ physical health.Practice implicationsGiven caregivers’ needs to maintain their wellbeing and the positive effects of support for them, research examining long-term efficacy of interventions and measuring objective health outcomes with rigorous quality of studies is still needed for better outcomes for family caregivers of patients with advanced cancer.     

Empowering family carers of people with multimorbidity as partners in chronic health care: Insights from health professionals

ObjectivesPeople living with multimorbidity often rely on the support of informal family carers, yet challenges frequently arise when carers of people with multimorbidity (PwM) interact with health professionals (HPs) and healthcare systems. This study aimed to provide insights into the experiences and challenges involved in working with carers of PwM, from HPs’ perspectives.MethodsTwenty-one HPs (11 doctors, 5 nurses and 5 allied health professionals) from varying specialities participated in semi-structured interviews. Interviews were transcribed and qualitatively analysed using thematic analysis.ResultsFive themes were identified: carer involvement makes multimorbidity easier to manage, differing views on HP’s responsibilities to carers, multimorbidity makes management harder for HPs, strategies to support carers of PwM, and multimorbidity is one aspect of complexity.ConclusionsHPs recognise unique needs of carers of PwM, yet perceive challenges addressing these needs and supporting this commonly overlooked group.Practice implicationsThe unmet needs of carers of PwM that HPs identified in this study suggest pathways for future improvements and interventions, including HP education and training, and appropriate referral pathways for carers of PwM to access supportive services. Underpinning these findings is the need for greater recognition and respect for the critical work of family carers in healthcare.     

What are we doing to support informal caregivers? A scoping review of caregiver education programs in cancer care

ObjectivesThe cancer system is experiencing a rise in cancer prevalence, a workforce shortage, and is resource-stretched. In this environment, informal caregivers (unpaid family caregivers of cancer patients) are required to take on expanded care roles and experience the debilitating effects of caregiver burden. Education programs are increasingly being developed to support caregivers. The aim of this review is to summarize what is known about these programs.MethodsA scoping review was conducted from May 2019 to January 2020. The literature search yielded 34,906 articles.Results119 articles were included, and ninety-two (77%) were focused on in-person psychoeducational programs.ConclusionMost caregiver programs have a unidimensional focus on psychoeducational training, demonstrating a need for more comprehensive programming to address the full spectrum of caregiver needs.Practice implicationsClinicians and educators must collaborate to create accessible, equitable education programs that comprehensibly address the needs of unpaid family caregivers beyond addressing psychological aspects of cancer care. This will ensure that a broader range of patients and caregivers are equipped with the knowledge and skills needed to cope with a cancer diagnosis, navigate the health system and to maintain their quality of life.     

Patients’ challenges,competencies, and perceived support in dealing with information needs – A qualitative analysis in patients with breast and gynecological cancer

ObjectivesThis study aimed to investigate challenges, competencies, and support in breast and gynecological cancer patients when dealing with information needs and how health literacy as an interplay of these factors might be improved.MethodsSemi-structured interviews were conducted with patients in acute care (n = 19), undergoing rehabilitation (n = 20) or attending self-help groups (n = 16). Interviews were analyzed using content analysis.ResultsChallenges: gain information according to own needs, internet as information source, information evaluation and decisions, doctor-patient communication, situationally limited information processing, difficult access to information. Competencies: self-regulation of information needs, media and social competencies, communication skills in the doctor-patient conversation, internet competencies, self-directed decisions according to own needs, interest/self-efficacy, previous knowledge, trust in the doctor. Support: by professionals (e.g., patient-centered communication), relatives (e.g., support during consultations), peers (e.g., exchange), facilities (e.g., clinics).ConclusionsOur findings provide insight into challenges and competencies relevant to patients’ health literacy and the influence of support. The individuality of the interplay highlights the relevance of an active patient role and patient-centered care.Practice implicationsPatients’ health literacy should be improved in (psycho)oncological work by both reducing challenges (e.g., by communication skills training, involving relatives) and promoting competencies (e.g., by needs- and competence-oriented information offers).